This is my experience with bladder spasm and UTI symptoms with no bacteria. I hope the story of how I healed myself will help others heal.
My Experience With Unexplained Bladder Pain
When I wrote this article in 2012, I had just recovered after suffering from very distressing urinary symptoms for months. I was going to the bathroom every ten minutes, and the only time I felt better was when I was actually peeing. I could not sleep at all, I was mentally distraught and was struggling to function in my daily life.
While I was suffering, I was desperately searching the Internet for some kind of advice. I had to really dig deep to get anything at all. That is what prompted me to write this article.
I am happy to see that now there is actually some advice available from medical websites such as Web MD. I hope this means that doctors are better informed about this problem and that it is leading to better medical care and less suffering. Still, I think it is helpful to hear about the experience from a patient who has been through it and recovered. The doctor's don't know what you are going through, but I do.
Some of the subjects I will cover are:
- Symptom relief
- The causes of urinary problems
- Where to turn for help
- What to eat and which foods to avoid
- Supplements I used
Many people have read this article, and many have left their stories in the comments section, where you will find lots of helpful advice. If you are currently suffering, I hope you find something here that will lighten your burden.
If it's Not an Infection What is it?
Bladder Spasm or Over Active Bladder Syndrome
You go to the doctor with what you're sure is a bladder infection, only to find out it's not. A urinalysis shows that there is no bacteria present. So what now?
The urologist I went to diagnosed me with having "bladder spasm." This condition is also known as overactive bladder syndrome or OAB. He took great pains to explain to me how difficult it is to find the cause and right treatment for symptoms like urinary frequency and urgency. He also said that many women have episodes like this at some time in their lives, but recover from it completely.
The Symptoms of Bladder Spasm
The most common symptoms of bladder spasm are:
- Urinary frequency and urgency
- Urethral burning
- Pelvic pain
Some people experience incontinence
What Can I Do?
Through research and trial and error, I found the things that worked for me. I now have been pain-free for over five years, and I am not taking any medications.
Many women find themselves in a situation like the one I have described at some point in their lives. Their GP or gynecologist may not be very knowledgeable about it. Trying to get information about urinary symptoms that are not caused by bacteria and getting the appropriate treatment can be very frustrating.
Bladder First Aid
I'll get into more details later, but if you are suffering right now, this is what I would do:
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- Drink Baking Soda Mixed With Water - The first line of defense for me is to drink 1/4 tsp of baking soda (do not exceed two teaspoons of baking soda a day) dissolved in a small amount of water. This neutralizes the acid in your urine. I started feeling better within 10 minutes. I read about it in a book, and it helped me much more than any of the doctors I had been going to for months.
- Take a Hot Bath - I found a soaking in a hot tub to be very palliative.
- Relax your Pelvic Floor Muscles - The muscle you want to relax is the same muscle you work when doing Kegel exercises. Locate the muscle you use to stop your urine flow by tightening it once, then consciously relax it. It seems like it's too simple, but I was really surprised how much better this made me feel.
- Use a Cold Compress - Get a cold washcloth or an ice pack and press it right where it hurts. A cold can of soda wrapped in a washcloth works well. Make sure you have a barrier between your sensitive parts and the ice.
- Don't strain to urinate: This is really important. You've probably been straining to empty every drop when you urinate; try not to do that because it's making things worse. The muscles in that area are all tense, and the nerves are overstimulated. So instead, you need to calm them down.
- Use warm water in a peri bottle to clean yourself after urinating. It's gentler than toilet paper, it won't irritate you, and it's soothing.
- Do not drink cranberry juice or other fruit juice! Cranberry juice is very acidic and will irritate your bladder. Many people who develop these symptoms have been drinking large quantities of cranberry juice; if you are doing so, stop immediately.
- Avoid certain drinks and foods:
- Immediately stop consuming all carbonated drinks, alcohol, and coffee.
- Do not eat any chocolate. In addition, avoid spicy food and citrus.
- Drink plenty of plain water, but do not force yourself to drink gallons. Simply drink a glass whenever you think about it.
There is a more comprehensive list of foods to avoid further down.
Compose Yourself Before Your Doctor Visit
In my experience, most doctors, especially male doctors, do not perceive these symptoms in a female as a serious medical matter, certainly not an emergency. After all, your vital signs are all fine, an examination doesn't find anything amiss, nothing is showing up in your blood or urine. Therefore, you're fine.
It's easy to get overwhelmed and very emotional when this happens. You're extremely uncomfortable, it's very hard to get any sleep, and you're physically and emotionally frazzled. But try to get a grip on yourself. Be factual about how long you have had your symptoms, how often you are going to the bathroom, and any patterns you have noticed in what makes the symptoms better or worse.
If you show up at a doctors office in tears, it will be even harder to be taken seriously. Also, the pain cycle can feed on itself, and the more emotionally worked up you get, the worse you may feel. Believe me, it will get better.
Why Don't Doctors Believe Women With Urinary Symptoms?
For many years doctors were taught that urinary symptoms with no discernible cause were psychosomatic. As late as 1984, they questioned whether interstitial cystitis was even a real medical disorder.
Studies showed that women with such symptoms were anxious and depressed. Gee, I wonder why that would be? I think the medical community has been far too ready to dismiss symptoms they can't explain as being "all in your head."
It's encouraging that the doctors are becoming more aware of these "invisible" problems and trying to address them.
See a Urologist
Once your GP recognizes that you don't have a garden-variety bladder infection, you will probably be referred to a urologist. Referrals take time, and may be weeks before you actually see the urologist. That can seem like a lifetime when you are suffering.
The urologist may recommend a cystoscopy. That is a procedure where a tube with a camera on the end is inserted through the urethra into the bladder to examine it. My urologist made an appointment for me to have that test, but it was six weeks out. He said that if I got better before then, I could call and cancel.
The idea of that test really freaked me out, given the way I was feeling. Reading about other people's experiences on the interstitial cystitis forum, I wasn't optimistic about the outcome. I didn't see a lot of positive comments about how great things were after the diagnosis. Everyone seemed to be on a lot of drugs that were marginally effective at controlling their symptoms, and it sounded like a life sentence to me.
The IC Forum
I got a lot of great information from the IC forum, but I had to do a lot of searching around. Here, I have tried to condense the information that was useful for me to make it easier for people having their first experience with bladder inflammation.
I think people are more likely to share their stories when they are suffering than they are when they feel better, so don't get discouraged if you don't see many uplifting stories there.
Could It Be Interstitial Cystitis (IC) or Bladder Pain Syndrome?
If you are researching these symptoms on the Internet or talking to your doctor, you may have heard of interstitial cystitis (IC) also known as bladder pain syndrome.
While it is possible that you have IC, it is more likely that you are just having a temporary inflammation.
IC is a chronic inflammation of the lining of the bladder. According to the National Institute of Diabetes and Digestive and Kidney Diseases, IC may affect between 3 million and 8 million women and between 1 million and 4 million men in the United States.
What Are the Symptoms of IC?
If you have urinary frequency and urgency, urethral burning, and pelvic pain, you probably have cystitis, which is bladder inflammation. These are pretty common symtoms, but if they don't go away and no other cause can be found for them, then there is a possibility that it may be interstitial cystitis.
Some people with IC experience UTI-like symptoms constantly while others experience it intermittently. IC can cause pain during intercourse and can be accompanied by other health issues such as irritable bowel syndrome, fibromyalgia, and other pain-related disorders.
How Is IC Diagnosed?
Interstitial cystitis is often mistaken for a urinary tract infection. Patients often go as long as four years between the time they first experience symptoms and the time they receive their diagnosis. It most commonly affects women, although men can get it too.
IC is diagnosed by ruling out other conditions, such as bladder infections or bladder cancer. Also, when it is advanced, it can be diagnosed by cystoscopy, as there will be visible ulcers on the lining of the bladder. For a cystoscopy, you will have to see a urologist. Not all doctors believe a cystoscopy is a necessary or effective way to diagnose the condition since the exam can be normal but you still may have IC.
What Are Treatment Options for IC?
There is not a single treatment that works for everyone. There are two FDA-approved treatments for IC: an oral medication called pentosan polysulfate sodium and a once-weekly treatment where dimethyl sulfoxide (DMSO) is placed directly into the bladder through a catheter. However, some doctors may try other treatments if their patients don't respond to these medications.
Physical Therapy for IC
Recently, many people with IC, and their physicians, are turning to physical therapy to help treat symptoms. This kind of therapy is especially helpful for pelvic floor dysfunction (PFD). I believe this may be helpful for patients with Bladder Spasm or Overactive Bladder as the muscles in the pelvic area are often very tight.
People with urethral syndrome experience similar symptoms to those with the other conditions I've described. Like with bladder spasm and IC, people with urethral syndrome have very tight pelvic floor muscles. However, their symptoms originate in the urethra instead of the bladder. The problem can be caused by bacteria, but it is often caused or aggravated by chemical or physical irritation, such as scented feminine products or rough sex.
People with IC or OAB often have urethral syndrome as well. I believe this is largely because of the constant peeing and wiping. Be careful to use a soft, unscented toilet paper that doesn't irritate you. If you are traveling, bring your own along with you. Gas station toilet paper is notoriously cheap and scratchy. Use of a peri-bottle or bidet can be helpful.
- lower abdominal pain
- urinary urgency
- frequent urination
- blood in urine (often microscopic)
- pain during urination
- pain during sex
- Stop using products that irritate the urethra. Some example are: tampons, scented feminine hygiene products, tight or irritating clothing or scratchy toilet paper.
- Avoid activities that cause irritation such as bicycle riding.
- Vaginal sex may need to be avoided until you've had a chance to heal.
- Doctors sometimes order anesthetics, antispasmodics, antidepressants, or alpha-blockers. If tests show that the patient has an infection, they should be treated with appropriate antibiotics.
Urethral syndrome is another malady that is not well understood by medical science, and it was also considered psychosomatic until recently.
Healing an Irritated Bladder
The healthy bladder is coated with a mucosal tissue called the glycosaminoglycan layer, generally referred to as the GAG layer. This layer protects the bladder from direct contact with urine. The GAG layer can become damaged by bacteria or other trauma, such as pelvic surgery, repeated infections, or a complicated pregnancy. I went on a regimen designed to heal the GAG layer.
First of all, go on a low-acid diet. If you look up an Interstitial Cystitis diet or IC diet, you will get varying advice on this. Different people seem to have different triggers. The ones I mention in the "common food triggers" section, should be avoided. Most of them definitely affected me.
One book I read said, "If you wouldn't put it on an open wound, don't eat it," and this resonated with me. So things like hot spices, lemon and vinegar would be off limits. If I ate acidic food, I could feel my bladder burning within 10 minutes.
This list is a good starting point. Pay attention to you body. If you feel worse, ask yourself, "What did I eat?"
What are Common Food Triggers for Bladder Spasm or Interstitial Cystitis?
- Fruits other than pears
- Alcoholic beverages
- Tomatoes and tomato sauce
- Spicy foods
- Carbonated beverages
- Aged cheese
- Sour cream
- Corned beef
- Cured meats like salami, bacon, or ham
- Salad dressing
- Tree nuts
- Artificial flavors
- Vitamin supplements—especially Vitamin C
You Don't Have to Live With Cystitis
What to Eat When You Have Bladder Pain
It can be hard, with just a list of things you can't have, to figure out what to eat. There are plenty of foods you can still eat.
- Any meat, poultry, fish, or shellfish is OK, except cured meats like bacon or salami.
- Most vegetables other than tomatoes, onions, or hot peppers are fine.
- You can still eat bread, other than rye and sourdough.
- Dairy foods including milk, butter, cottage cheese, American cheese, and vanilla ice cream work. You can start adding some of the milder aged cheeses in small amounts once you start feeling better.
- Pasta, rice, and most cereals are OK.
- Salads can be a problem because of the dressing, but you can try them with herb-infused olive oil and coarse salt.
When you feel better, start slowly adding back foods one at a time. It can be tempting to just go back to your regular eating pattern, but you don't want to have to start over. I started with a little mayonnaise on my sandwich because I really missed it. Add one food at a time, and take it very slowly.
Early Intervention is Key
From my reading and research, it sounds like it's important to get your symptoms under control early. Dietary changes when you first experience symptoms can prevent your condition from progressing. Patients who have had an irritated bladder for a longer period of time experience less relief from dietary changes.
If it turns out you do have interstitial cystitis, there are medications and treatments that may be beneficial to you.
Don't Sabotage Your Recovery
Don't give in and reach for the foods that are hurting you. I really sabotaged myself for a while because I would not give up that one cup of coffee in the morning. Once I got past that, I started to get better. Don't undermine your recovery with that one glass of wine or cup of coffee, the way I did. Just stop. If all goes well, this will be a temporary situation. You can go back to enjoying those things later, but for now, you have to get this situation under control.
Instead of your regular acidic indulgences, milk or vanilla ice cream can be pleasant and very soothing. Make sure you get a brand of ice cream that does not contain a lot of chemicals.
Some Hot Drinks You Can Try
- Have hot vanilla milk in the morning instead of coffee. Just put a drop of pure vanilla extract and a little sugar or honey in a mug of hot milk.
- Some good tea options are marshmallow root, chamomile, catnip, licorice, ginger, or peppermint. They are usually well tolerated and can be beneficial. Make your teas weak until you are sure they don't bother you.
- Sometimes, just sipping a cup of hot water is comforting, and it helps keep you hydrated.
What Supplements I Used
Based on what I read in books and researched on the Internet, I used the supplements and products listed below:
- Glucosamine and Chondroitin (400 mg 3x per day): It coats the GAG layer, giving it a chance to heal.
- Calcium Citrate + Vitamin D (200 mg 2x per day): It helps your body excrete oxalates more efficiently, which helps prevent vulvodynia, an associated condition that is also very unpleasant.
- Bromelain (100 GDU 3x per day): Bromelain is an anti-inflammatory enzyme.
- Quercetin (100 mg 3x per day): Quercetin is another anti-inflammatory agent.
- Prelief: Prelief is an antacid that you can take before eating acidic foods. I would not recommend eating highly acidic foods, even with it, until you get your symptoms somewhat under control.
You might want to start off with the glucosamine and chondroitin and work your way down the list. Add one supplement at a time and wait a few days before adding the next one, just to make sure it's not a trigger for you. I used 21st Century Glucosamine 250 mg and Chondroitin 200 mg, just because it didn't have a lot of extra ingredients in it. I don't think the brand matters so much, but look out for added vitamin C in some of them.
One prescription medication I took for a short time that helped me was Ditropan (oxybutynin chloride). It is supposed to relax your bladder muscles to prevent urgent, frequent urination. At first, I was taking 5 mg a day, and it wasn't helping. But when my doctor raised it to 10 mg a day, it gave me some relief.
Don't Lose Hope
There are plenty of women, and men too, who have had these distressing symptoms. Most of them recover and go on to lead normal lives.
If you're really suffering right now, you're probably having a flare. It won't last forever; it will pass. It will take time for your bladder to heal, so don't expect a miracle cure overnight.
I have experienced two flares that lasted several months each. I am able to eat a normal diet now, even coffee and chocolate. But if I had to give them up forever to prevent that kind of pain, it would be well worth it. Now I know what I have to do when that feeling comes back.
There is Great Advice in These Comments
I have had many people visit this page and leave comments. If you need more advice, I would recommend looking through them.
The list is long, but there is some great wisdom to be gained from others who have experienced persistent bladder pain.
This content is accurate and true to the best of the author’s knowledge and does not substitute for diagnosis, prognosis, treatment, prescription, and/or dietary advice from a licensed health professional. Drugs, supplements, and natural remedies may have dangerous side effects. If pregnant or nursing, consult with a qualified provider on an individual basis. Seek immediate help if you are experiencing a medical emergency.
Questions & Answers
Question: A microscopic amount of blood in my urine was found, and now, I have a persistent urge to urinate. It's frustrating because my ultrasound came out normal; there are no bacteria in my urine. I’m really nervous that this is going to be an on-going thing. I will try some of the things that worked for you, and I hope I get some relief. I will see a urologist in two weeks. Can these spasms come and go randomly? How long did it last for you?
Answer: I'm so sorry you're not feeling well. Symptoms can come and go. Usually, it doesn't go away suddenly once you have severe symptoms, but they can get better gradually. Symptoms can come on suddenly though. That's the time to examine your diet and any other behavior or things in your environment that could give clues to what caused it to flare up.
For me it took three or four months once I got on the program I have described, but for many, it takes longer. We can't even be sure we are all dealing with the same problem since many things can cause the same symptoms.
Question: I have had pain for 2 months in my bladder. It constantly feels swollen and my urethra feels tingly. I have no trouble urinating. After I do urinate though, my bladder feels sore and urethra twinges. I have also found I don't feel any different when I eat different types of food. When you changed your diet did your urinary symptoms go right away? How long did you, the writer of this article, live with the symptoms?
Answer: If you are extremely symptomatic, you won't feel better right away when you change your diet. It takes time for your bladder to heal after you stop irritating it. However, very acidic food could make you feel worse immediately.
It sounds like your urethra is irritated. Be careful what kind of toilet paper and feminine products you use (soft and nothing scented). I also found tampons to be very irritating. Also, pay attention to relaxing those pelvic floor muscles.
Question: I had a UTI for months because my doctor didn't diagnose it in time. I then went to another doctor who treated it after I'd had it for three months. Now, my bladder isn't working regularly, and I am only 14, so it really messes me up. Do you think that my bladder tissue is still healing from the UTI?
Answer: There is a good chance that your bladder is still healing. You can help it by following a low acid diet. If you do that, your bladder will probably be feeling better in a few weeks.
Question: Were you able to drink green tea when you quit coffee? I need some tea type of substitute for my coffee.
Answer: When I first quit coffee, I took a little caffeine in tablet form, and weaned myself off of it; I just could not function without it. It probably wasn't the best thing, but it didn't seem to have the negative effect on my bladder of drinking coffee.
As a hot drink in the morning to replace coffee, I would have vanilla milk, a very weak catnip tea, or just hot water. If you want to try tea, make it very weak, just dip the bag enough to add a little color to the water.
Question: I have an occasional problem with urge incontinence. My doctor said it was probably something that I was eating, most likely caffeine. Checking the internet, I see that many other foods can cause the problem. How long after eating one of these foods is can one expect a bladder spasm? I cut way back on the caffeine. Yesterday I ate a medium size pickle and within a half hour had a mild spasm.
Answer: The effects of eating acidic foods can be felt soon after you've eaten it, 15 to 30 minutes. On the other hand, it takes longer to get relief when you stop eating acidic foods. It takes time for the bladder to heal.
Question: I have IC and started to bleed. It was in the toilet and on the toilet paper in large amounts. I stop bleeding and being in severe pain for a couple of hours. I haven't bled since I was 32, and now I'm 47. The next day I started bleeding again. I went to the ER and peed in their cup, and there was a lot of blood. Are you supposed to bleed a lot with IC?
Answer: No! That amount of blood sounds very unusual for IC. Are you sure you do not have a gynecological issue? Good call going to the ER.
Question: I have had symptoms of a UTI for three weeks now, and saw blood on my toilet paper twice. The UA is normal. Did you have any bleeding? I’m scheduled for an ultrasound. I may get cystoscope.
Answer: I did not have visible bleeding, but I did have microscopic blood in my urine.
Question: Only thing at present that I am able to eat at present is potatoes. Can’t take dairy due to stomach issues. Any suggestions as to what to add next. Also, where can I read more about Glucosamine 250 mg and Chondroitin?
Answer: I'd go to vegetables and/or meat. You need that variety of proteins and vitamins. Here is a good link for Glucosomine, chondroitin and quercetin in relation to bladder pain.
Question: Do you think fruit teas like summer fruits would be ok? I only really drink water and fruit teas now. I get so bored by just water.
Answer: Fruit is not generally recommended, but it just depends on what you are able to tolerate.
Question: Do you take UTI supplements with food or did you take them without food?
Answer: I usually took them without food, and experienced no ill effects from it.
© 2012 Sherry Hewins
Sherry Hewins (author) from Sierra Foothills, CA on April 21, 2020:
Elaine: The constant need to pee is certainly an annoying problem. It's hard to figure out what's causing it unless you keep to a regular routine and keep track of what you are eating and how you are feeling. Try keeping a food diary for awhile, and note how you felt each day.
If you incorporate the low acid diet into your routine, it may help your symptoms. If so, you can start adding things back until you identify the foods that are a problem for you.
Elaine on April 12, 2020:
I have to pee every 10 to 15 minuets. Mostly I have pain only when I need to go and there is a line. Every 2 or 3 months it hurts real bad (usually night time and a cold water douch helps a lot . The part that I'm having trouble with is I 'm tired of going so often ! I have had these symptoms for 4 years! Sometimes the frequency slows down but I haven't figured out why. ( also I have heard that mold in the house can cause this.)
Sherry Hewins (author) from Sierra Foothills, CA on March 08, 2020:
Thanks Barbara, for your comment. Unfortunately, you are far from the only one. I hope you find something here that eases your pain, even if a little.
Barbara on March 08, 2020:
Just wanted to thank you so much Sherry for your informative article. I am 75 years old and have suffered from bladder pain for most of my adult life, especially when under emotional pressure of some sort. I have visited nearly a dozen urologists over 50 years, enduring several useless cystocopy procedures. None have offered any explanation that even comes close to what you suggest above, and you are absolutely correct, they do not take it as seriously or as life-changing as it truly is. When they see nothing they can treat, they seem to lose interest entirely. Much gratitude for sharing your experiences and knowledge of this painful subject. I actually thought I was the "only one" suffering from this, since none of my friends over the years complained about it.
Linda on November 28, 2019:
I've had bladder problems for many years & been misdiagnosed with antibiotics pretty much every time--an automatic reflex with doctors unless you stop them. I am wiser now and suggest that anyone suffering IC Flares should consider if they are highly sensitive because this appears to be a large part of the reason we get them (Check out Elaine Aron's test for HSPs (Highly Sensitive People) on the web. I don't appear to be sensitive to foods but overwhelm and stress are very hard on me. I now do tapping (EFT--Emotional Freedom Technique) every day and when I have a flare, I do tapping over and over and over (you can't overdose on it). I use the method suggested by Rue Hass in her book This is Where I stand for highly sensitives. I noticed as well that in Nick Ortner's book on tapping for pain control has a foreward written by a urologist. I also now use castor oil packs regularly as a preventative. I have never been as clear of IC Flares as I have been in the last year because at the first symptoms I start tapping over and over--I really do think that tapping helps a lot. I also take turmeric daily because my cousin (we inherited the same bladder problems) took turmeric and barley grass daily for well over a year (for arthritis) and to her surprise she ended her persistent flares--I don't know if they help me but I'm taking turmeric tablets now because they appear to be good for me, i now do my best to walk away from stress and overwhelm. I wish I'd known about all this many years ago because it would have saved me a lot of pain and unnecessary antibiotics.
Hope the above helps somebody--IC Flares are really bad news.
Patty on April 05, 2019:
Thank you for all this great information!
Sherry Hewins (author) from Sierra Foothills, CA on November 14, 2018:
Thank you Meg, It always makes my day to hear that my article has helped someone. So sorry you are still struggling with these awful symptoms though. I have not read the book you mentioned, so you be the judge. If it helps you, that's wonderful.
Meg-lw12 on November 14, 2018:
I wanted to let you know that your article has been a tremendous life saver in my life. I will never forget the day I woke up to this life changing mystery Illness, disease, infection or whatever you want to call it. I have been dealing with urgency, frequency, pressure and tissue like particles in my urine off and on since May 31st. The extreme panic attacks and anxiety that first came at the beginning of feeling all these symptoms were almost unbearable and I just mourned the “past life” before all this happened. After numerous trips to the ER and doctors, all tests came back perfectly normal. So now I’m my own advocate and currently searching for an answer. I remember the morning I stumbled upon your article and it gave me SO MUCH hope and to keep moving forward in my life. Being only 26 years old, this was hard to accept. I am currently going through my third flare up but find that my trips to the bathroom are not as frequent. You are so right that a low acid diet makes the world of difference and I feel that eating many foods that are alkaline helps with the slight burning and frequency. I have taken the supplements recommended and eaten the foods described above and have found some relief!! It seems when I stray away because I feel better it happens all over again. (Shame on me) In this time of trying to feel better, I have been researching and trying to find a diagnosis to what many of us on here are describing. I have found little to nothing other than this “feeling” that is being felt is nothing more than imagination or there is just no cure. I can’t live with this diagnosis—I don’t want to manage, I want to HEAL.
I came across a book called the medical medium and just started reading it. I was wondering if you have ever heard of it and if so, what are your thoughts? Is it worth the read?
Again, thank you for sharing this. It literally saved me from my most worst times in my life. Bless you and helping the hundreds of others that have come across your article. Sending so much love to you!
Sherry Hewins (author) from Sierra Foothills, CA on October 23, 2018:
It certainly can linger eileenmissouri. If you have had repeated bladder infections, you are a prime candidate for this type of problem. Get on that low acid diet ASAP.
eileenmissouri on October 22, 2018:
I feel very optimistic after reading this article. I have off and on had UTI infections thru-out my life...i am now 39. But a resent bladder infection i had that seem to clear up came back after a few weeks, and to me seemed not to be clearing up the 2nd go around...but my urine was clear as my Gyno told me today. Which believe me was super frustrating. I was upset. What i am having now is not completely typical of my UTI symptoms...more like irritated bladder wall and much frequency to urinate (which is not like me). I am such a worry wort, my mind always goes to the worst like tumors squeezing my bladder or something crazy. Which i did have a scope done 2 years ago when i was having quite a few UTI infections...but it came back fine thankfully
So i have been searching and searching if you can still have irritation and spasms even after the infection clears....so from what i have read you do think the symptoms can linger?
Sherry Hewins (author) from Sierra Foothills, CA on October 01, 2018:
Thanks for commenting Scarlett24. Sorry you're suffering, but I'm glad if I can be of some help. Fingers crossed for a speedy recovery.
Scarlet24 on October 01, 2018:
This is a great, super thorough article. I've been having a bladder spasm for about 10 days now and trying everything to calm it down. I believe it's only spasm/inflammation as I have urgency/frequency but no real burning. My anxiety and depression became a huge issue with daily panic attacks, as I feel like this will never go away. Reading your account gives me some hope though and reminds me to keep on with my diet and relaxation methods.
VM on September 16, 2018:
Please guide me. If supplements with shellfish don’t suit then will vegetarian glucosamine is an option? Will it help a little.
Carolyn Talberg on September 14, 2018:
Please stay away from the Kefir. Fermented foods are a no no as I am sure you have figured out. My Urologist tells me to keep away from all fermented foods. Stay away from nitrates as well. I wish you the best!
Sherry Hewins (author) from Sierra Foothills, CA on September 13, 2018:
Christy, that is so frustrating, and a warning to those of us who have been symptom free for a long time. You never know when it might come back.
I certainly think the intense exercise could be a factor, but it sounds like you have already figured that out.
Get well soon.
Christy Hollister on September 13, 2018:
I am so frustrated and in shock that after 20+ years of being symtom free of IC, eating and drinking absolutely anything and everything without a care in addition to having intimacy with my fiance with absolutely no pain during or after. Two months ago out of the blue I got bad spams in my bladder and thought for sure it would go away but unfortunately has not.
I eat very clean most of the time, exercise 5x a week and take excellent supplements, after all these years I was convienced it was totally healed! Only thing I did differnent in the month of June is overdue it with exercising, I as powerwalking 6 miles at a time, spinning, light weight training and road cycling, I am wondering if by some chance I damaged my bladder in some way with extreme exercising...as usual it is a mystery why this is back...I have no burning, urgency or frequency just constant bladder pain with sharp spasms. Oh just to add to my frustration...I discovered how wonderful kefir was so I drank it 3x a day and my bladder pain stayed @ level 1-2 and I was elated thinking I had found the answer for me and then all of a sudden the flare was unbelievable and after backing off and trying again the same thing happend so now I can't even drink the kefir any more...:(
Sherry Hewins (author) from Sierra Foothills, CA on September 11, 2018:
That was 4 months total, but just because that's what happened to me, it doesn't mean it will be the same for you.
VM on September 10, 2018:
Sherry, you mentioned your flare up lasted about 4 months. Was it 4 months after you started Glucosamine. Or was it total of 4 months. Thanks.
Maria on August 31, 2018:
I did take antibiotics they seem to help me when i drink pepsi or coca cola then it burns more could that be cause of uthera burning when i pee it burns at end when i peee
Sherry Hewins (author) from Sierra Foothills, CA on August 31, 2018:
Maria, it sounds like you might have Urethral Syndrome. Have you been to the doctor? Sometimes it is caused by bacteria, and antibiotics will clear it up, so go if you haven't already. Sometimes it is caused by chemical or mechanical irritation. Pay attention to your TP and feminine hygiene products.
Maria on August 30, 2018:
My uthera burns when i have to pee there is no blood urine colour clear i drink alot of water what is the cause of burning plz tell me. I dont have uti sympotms
Sherry Hewins (author) from Sierra Foothills, CA on August 27, 2018:
Sara, I would say that the pain diminished gradually. It just got less intense, and I could go longer between trips to the bathroom until I was finally OK.
The main time that I noticed the cloudiness and the tissue in my urine was when I went to the doctor. She even remarked on it. I didn't really examine it at home on a regular basis.
I think the symptoms seem worse at night because you don't have the distractions that are around in the daytime. There is nothing to focus on but your symptoms.
As you have said, the anxiety and depression are a very challenging part of this condition. I think distraction is a useful tool to combat those feelings.
Odd as it sounds, if you can find something you can really focus your attention on you might even forget to go to the bathroom every ten minutes.
Drawing and writing were good distractions for me.
Sara on August 27, 2018:
First off, I just want to thank you for continuing to respond to comments so long after your healing journey ended. I read that your longest flare lasted about 4 months. Would you say that the pain and cloudiness lasted that long as well, or did those symptoms go away first until the only symptom was frequency? If so, approximately how long did it take for the pain and cloudiness to disappear? What you say about having pieces of tissue in your urine is what I am seeing. Fine levels of cloudiness along with larger tissue-like particles. I also find the pain gets worse at the end of the day, even if I haven’t been moving much. This may be due to drinking less water in the evenings (as I prepare to sleep — don’t want to wake up too many times in the middle of the night). I try to drink between 2-3 litres of liquid a day; I find I have less pain this way but I do end up using the washroom every 30 minutes or so. As soon as my bladder fills up to 150-200 ml (yes, I have measured), I must void. Things that seem to be helping are homemade chicken broth and watermelon. I also started taking a glucosamine and chondroitin supplement as you have suggested. The worst part of all this is not the physical symptoms but the depression and anxiety that come with it. I try to stay positive as much as possible but it can be hard at times and I find myself crying or despairing that I will be in pain like this forever. Your blog helps me have hope! Thanks again.
Sherry Hewins (author) from Sierra Foothills, CA on August 27, 2018:
Sara, My urine was cloudy too, and it appeared to have small bits of tissue floating in it. I would expect for that to clear up when the pain subsides.
Sara on August 26, 2018:
I’ve been struggling with a UTI for the past 6 weeks. Was prescribed the wrong antibiotics 3 times, then after the 4th antibiotic, I developed a fungal Uti. After taking diflucan for one week, my symptoms persisted despite a negative culture (Urinating every 30 minutes, burning in the urethra that doesn’t go away, pelvic pain and cloudy urine that sometimes has very large flakes in it). I saw a urologist who said that symptoms due to inflammation can persist for up to 3 weeks after an infection was cleared. He told me the flakes in my urine were epithelial cells and that it was like I had an ulcer in my bladder. After reading all the comments here I know what he said is true, however I am concerned by the continued cloudiness of my urine. I test my urine at home using dipsticks and sometimes they show positive for leukocytes. Is it normal to have cloudy urine on top of the pain symptoms after the infection is cleared? I should add that I’m following the low acid diet and have not had any coffee, alcohol, chocolate etc in weeks.
Sherry Hewins (author) from Sierra Foothills, CA on August 24, 2018:
Have you been checked for a UTI? That would be the first cause to eliminate.
Maria on August 20, 2018:
My uthera burns when i have to pee there is no blood urine colour clear i drink alot of water what is the cause of burning plz tell me.
Kim on August 07, 2018:
I am so glad I found this information, thank-you for sharing. After reading some of the posts, I think I ended up with trouble due to trying to lower my cholesterol with dark chocolate and strong teas, a few other things added to my diet as well. I'm going to try to eliminate these and see if it helps. I quit smoking and wouldn't you know, I had a cold sore in 2 weeks and a this bladder issue in 3 weeks, maybe the stress of it all didn't help as well. I tried the baking soda and I do believe it is helping for now. Thanks again!
Aleksandra on July 19, 2018:
Hello Sherry - I hope you are still doing well. I have found natural way of stopping the cycle of my UTIs but now I have to deal with the residual inflammation. Overall, mine is not bad and I can go months without any pain. I would say coffee is the only thing that sets me off sometimes - like it did yesterday. Now I am sitting here in a flare and I know I need to actually stop and lay it off for at least a year and do my body a favor and let it recover. I got the supplements you reccommended, with the exception of the calcium and vitamin D. My question for you is this: How long were you on these supplements? Was it a year, two? Essentially I want to know how long it took for you to heal yourself and when did you stop taking them. Did you gradually reduce them and then stop all together or stop them all at once and at what point was that and how you knew you were ready? I am guessing you also gradually reintroduced foods into your diet one by one - since for me there is only one irratant, I am planning on giving it a year. Can you just give me an idea how long this process took you and how you weaned off ?
Sherry Hewins (author) from Sierra Foothills, CA on June 21, 2018:
I hope you feel better soon Christy. You are very lucky you got a ten year break from symptoms. I hope this relapse is short lived.
Christy on June 18, 2018:
I am so glad I happened upon this. I've been suffering with this for the past week again. I had the same thing in April. All tests came back fine. Blood in urine. Dr. Wants me to go for an ultrasound bit I put it off because I had felt better. The last time this happened to me was 10 years ago. Same symptoms. Blood in urine, etc. My Dr at the time gave me antibiotics and nothing worked. She finally told me to stop wearing underwear that maybe it was from sweat. It lasted four months that time. Then was gone till now. I'm going to watch what I eat and what triggersbit and start to relax. Hope and pray I feel better soon because this makes you miserable. I'm sorry for anyone going through this but, happy to know that others understand how it feels and have found things helpful. So thank you!
Sherry Hewins (author) from Sierra Foothills, CA on June 09, 2018:
Faye, wow that's really tough. my longest flare lasted about 4 months, but everyone is different. Are you following a low acid diet? Have you consulted a urologist? Other than what I said in the article, all I can tell you is to keep trying to find something that helps you. I hope you find some relief soon.
Faye on June 08, 2018:
Thank you so much for writing this article. How long did you have the symptoms for before you were able to get rid of it? I've had mine for almost 2 years now and I'm starting to lose hope. It's interfered so much with my life and career.
Jackie MN on June 06, 2018:
I stumbled upon your article while not being able to sleep, due to the constant urge to urinate and the pain I am in.
About 3 years ago I started to get UTIs every couple of months. I would drink lots of water and take some cranberry pills. Last summer I went to the doctors. She said all my symptoms sounded like a UTI but my test came back with no bacteria. I never thought twice about it, until now. It's been about a week and my daily routine of lots of water and cranberry pills isn't working. I've almost peed myself twice now, while running errands and just when I thought it was going away it seems to have gotten worse. It is a constant and incredibly urgent feeling of having to urinate also accompanied with a burning sensation. It's very uncomfortable and leaves me frustrated and crying. There is no odor or blood. And I have noticed it happens a lot more in the summer ( I tend to spend every weekend in a bathing suit and my dr told me a wet bathing suit can lead to UTIs) After I thought it was getting better and it got worse, I realize I wore tight yoga pants for a whole day and am now wondering if all these things will affect it. I also saw a comment about having your period and wearing tampons. Is this something that can make it worse? I've never been diagnosed with anything but UTIs and this time around with what seems like no end in sight I went online and googled symptoms that mimic UTIs, this is where I found your article. I'm amazed because after thinking I must just suffer from chronic UTIs I'm realizing this could be something else.
I will be trying to change my diet to see if that helps. Any other advice would be greatly appreciated. Thanks!!
Laura on June 04, 2018:
I'm not sure what I've currently been experiencing and wondering if you've heard anything similar this. I drink plenty of water and eat well, but my urine is horribly pungent normally mid-morning, not every day as it tends to come and go. The smell ranges from ham to that sulphur smell after you've burnt a sparkler and even for a few weeks it smelt like manure. The smell lingers from 30 minutes up to hours. I've been to the dr twice for a urine test but both times it wasn't when it was smelly and bacterial test came back negative.
When I was younger I used to get chronic uti's, which I rarely get now but when I do I use baking soda which stops it in its tracks. I think I have an overactive bladder though as I get strong urgency to urinate. This is driving me crazy! What are your thoughts?
Sherry Hewins (author) from Sierra Foothills, CA on June 02, 2018:
Gale, you probably have some lingering irritation from the UTI. The same things I have recommended in the article should work for you. Low acid diet, baking soda, relax the pelvic floor muscles, etc.
What medication are you taking? As I mentioned before, I needed a stronger dosage before my medication was effective.
Gale on May 31, 2018:
I started this journey back in November when I had sinus infections. I went thru 3 round of antibiotics in 3 months and finally got over that. Then I started having yeast infections which I have never had and I am 60 years old. Then the UTI started about a month and 1/2 ago and again had never had one of them either. My family dr said I had bacteria in my urine but no blood at the time. I recently went for my pap smear and told her I had a UTI previously and she did a urine test and I had blood in my urine. She then did a culture and it did not test positive for infection. I have no pain but have to pee about every 30 minutes.What recommendations do you have? My gyno did give me something to ease the spasms but it did not help.
Sherry Hewins (author) from Sierra Foothills, CA on May 30, 2018:
Beth - I think your on the right track. No matter what the cause of the irritation, the same food will aggravate it.
Beth on May 30, 2018:
Thank you Sherry. It’s so hard to figure out which foods are the culprit! I was actually diagnosed with Cystitis Cystica after a cystoscopy and put on long term antibiotics ☹️ So it’s a bit different but still, an irritated bladder. I’m trying many of the tips on here!
Sherry Hewins (author) from Sierra Foothills, CA on May 29, 2018:
Beth, If I drink orange juice, I can feel it within 15 minutes. It does not take long to get to your bladder, and if your bladder is already irritated, you will feel it.
Jennifer on May 29, 2018:
Uh oh, got back to maybe a little too much coffee, some wine and chocolate (meno balls/fat busters) Also was drinking water with lemon flavoured stevia and it all started to lead to a subtle burning feeling again - just took baking soda in water and will halt the other offenders again. It can really snowball with a few acidic foods! Thank God for this spot!
Beth on May 29, 2018:
Thanks for the helpful advice! I’m wondering how soon after eating an irritating food, do you notice symptoms? I’ve had times where, right away, I was suffering but it seems impossible that it could happen that fast!
Justine on May 23, 2018:
Just wanted to say thank you so much for this article. My grandma had IC and I’ve been terrified I have it as well. I was diagnosed with ureaplasma this week and am on antibiotics for it. Thankfully my symptoms are improving but I was in a spiral before my diagnosis and reading this calmed me down and gave me hope. THANK YOU!
Sherry Hewins (author) from Sierra Foothills, CA on May 23, 2018:
Thanks for the feedback. A cold compress is soothing for the outside, and the relief lasts for a while afterwards; of course that is difficult to use when you are not at home.
You could try a diaper rash ointment with zinc oxide in it. Just use a little though, it is messy and big gobs won't help any more than a thin film.
Fay Garnham on May 23, 2018:
Exterior burning and frequency podt UTI's. I found Apohealth's Cystitis Relief helps me. 1 x 4 a day for 5 days. 2 x 4 is a waste and does not work better than 1 x 4. The only thing I've been eating which I see is a no no, is choc chip cookies. Tomato and onion in a salad last night and today I'm suffering. Is there an ointment one can use the relieve external burning?
Sherry Hewins (author) from Sierra Foothills, CA on May 21, 2018:
Jasmin, Congratulations on your engagement. I'm so sorry to hear that these terrible symptoms are interfering with your happiness.
I'm glad I could give you encouragement. I really wish I had a magic pill that would just make it all go away.
Jasmin on May 21, 2018:
Thank you for writting this. I relate so much. I am in the thick of things at the moment so I really appreciate the positivity and hopefullness of this post.
I had a UTI in March that must have done some serious damage because I'm still currently dealing with the aftermath. I have a little pain but main problem is frequency. It is completely debilitating at the moment- like every 30 mins. I am on the drug Tropsium which seemed to help for awhile so I am confused at why things got so bad over the past 3 days- my thought of course is that it could be IC.
I plan to eat as alkaline and healthy as possible and start some new supplements. Im 40, just got engaged and should be on cloud 9. This situation with my bladder feels like im being robbed of my joy sometimes. Its just so hard to stay positive when you dont know what is causing it, how to fix it, and how long you may have to live this way- oh and my doctor and insurance sucks too. I just have to have faith that it will eventually pass. You're post helped me hopeful again. Thank you!
Anita Whitten on May 09, 2018:
I’m wondering if supplements of Tumeric may be causing my bladder flair up.
Omar Faruq on May 05, 2018:
Hope you are well. I have been suffering from the problem for 12 years. My Urine culture report shows a large list of of antibiotic which are not applicable for me but I had to take a lot of antibiotic.I could not take any sugar,meat,acidic foods.I feel burning in my urethra. My VDRL TEST is negative, pus cell is present in urine.
Please help me.
Alyson on April 18, 2018:
Thank you Sherry and Carolyn for responding, it's nice not only to read others stories but also be able to talk to you. Toviaz is working amazingly for the urgency and frequency. I feel great except in the morning before I've had naproxen, some pain when urinating. It's been about 1.5 weeks since I had 2 glasses of wine so I know I have to wait it out and wait longer this time before having alcohol. I'm thinking in a couple months I should feel great (hopefully) and then give it a couple more months on top of that before introducing coffee and alcohol back.
I have a cystoscopy scheduled for June 1, I don't believe they will find it is IC but just inflammation, but I think I should do it anyways to know 100%. I am a bit concerned with getting a UTI from the instruments but will take D Mannose that day. Hoping I don't regret getting it done :)
Sherry Hewins (author) from Sierra Foothills, CA on April 16, 2018:
Like Carolyn, I also was able to go back to my regular diet once I got well. I drink two cups of coffee every morning, and have a couple of beers occasionally. I eat chocolate, but I go more for a chocolate chip cookie rather than chocolate fudge with chocolate frosting.
Carolyn Talberg on April 16, 2018:
I was able to go back and drink coffee after the first go around a few years ago. This go around I was feeling great for about a month and I started drinking coffee - 1 cup and I made it weak. Did not bother me. I slowly added other foods and I had no issues for weeks. Unfortunately, I went on vacation and started to eat too many acidic foods and I have had a bit of a relapse. Not a bad flare thank goodness, but enough that I am back on this acidic free diet. I jumped the gun too quickly and I will not make that mistake again! I have been feeling better for about a week since I regressed. I am going to continue on this diet for at least 3 months before I re-introduce anything! My bladder needs time to heal entirely.
I am hopeful I will have a complete recovery now as I did a few years back. I just need to be vigilant about my diet and once I heal I need to remember to not eat too many acidic foods in a short period of time for the rest of my life! I do not drink any alcohol so that is not a problem for me!
I believe what set off my second flare after a few years, was
eating too many acidic items in a short time period and then eating Thanksgiving desserts is what set me back. Also, I was under a lot of stress, not drinking enough water to keep me hydrated, eating a lot of dark chocolate and other acidic foods. I was tested for a UTI but it came negative as it always does!
The Toviaz has helped a lot. I hope you are able to get some relief from it!
All my best to you,
Alyson on April 12, 2018:
After 3.5 months I was just put on Toviaz to try out. Between the two times you have been dealing with this, did your bladder go back to normal? Were you able to drink coffee and alcohol again?
Just wondering if you also have an idea what set it off again, perhaps another UTI?
Sydney on April 09, 2018:
Hi all, it is so comforting to read that I am not alone in this situation. At Christmas last year (2017) I started peeing often, burned, and had pain so I went in and they said I had a uti. They gave me Nitrofurantoin and sent me out. The side effects were awful so I went back and they gave me bactrim which did nothing at all. After a few weeks the burning and pain went away but I still peed every 30 minutes. In January I went to my gynecologist and she did a test and said I still I have a uti. I don’t remember what she gave me but it didn’t do anything either. She did a culture and it said I didn’t have an infection and I should see a urologist because I could have something else. My urologist sent me in for a ultrasound and had me do blood test and urine culture. The culture results took a while to come in but my ultrasound was clear. He then sent me in for a CT which was also clear, but my culture results had come in and showed I had a type of staph bacteria in my bladder. He gave me macrobid which seemed to help at first but I then went right back to the way I was. He wants me to go in for a cystoscope but I’m trying to avoid it at all costs. I had gotten to point where I was only going every hour and a half to two hours which was better and I started burning when I pee. I can’t get in to doctor so I started taking azo and now I pee every 45 minutes,burn, and have some discomfort, and have a hard time even trying to go. I have no idea what’s wrong with me. I’ve had nothing but water since December and have cut out all acidic drinks. I can’t go out and do anything without hoping there’s a bathroom nearby. My quality of life is completely shot and I have started figuring that this just something I’m stuck with. I’m going try and see if changing my diet works. It seems to have helped a lot of people on here. After four months of this I’m ready for it be done with. You guys have me gain hope again.
Alyson on April 05, 2018:
Your story sounds exactly like mine. Really bad UTI in December in my bladder, two rounds of cipro later and then half way through the second round pressure and urgency. Infection was gone and told "lingering inflammation" and to "ride it out" basically. Started feeling better after taking Cystoplus for a week but I was still taking Macrobid at the time to prevent UTI's which set it off again. Since January I have gotten better and worse from alcohol and coffee mostly. I stopped drinking coffee in January and right now I am at 7 weeks without alcohol and am feeling better. Right now I mostly have discomfort only when having a small pee, if I have a huge pee that I am bursting with it feels great. I am going to go for a Cystoscopy to check out my bladder. My gyno told me two weeks ago that it most likely is inflammation and to drink a crap ton of water and take NSAIDs every day (Aleve is my choice, works the best - 2 220mg, 3/day with Zantac to protect your stomach) to bring the inflammation down. He said after a month he will see where I am at, and possibly put me on a stronger anti inflammatory - as prolonged inflammation can cause scarring. The one thing my family doctor told me is it could be inflammation, or there could have been some damage/irritation to the first layer of my bladder. I did recently purchase Bone Broth powder - Bone Broth repairs the lining of your gut and bladder. I am vegetarian, so this was a bit of a difficult decision but I decided it was well worth it for my health and possibly why it has been 3+ months of this I am thinking - because of my vegetarian diet. Just a though. Also, I am taking 4 tablespoons of Aloe Vera gel (Inner fillet) 2-3 times a day on an empty stomach --- before breakfast, and before bedtime for sure and sometimes once in the afternoon. I have found this to help alot as well. It is said to act as a natural NSAID for inflammation and also helps with the mucous layer in your bladder.
bath life on April 02, 2018:
I am sitting in the bath reading these comments, as I have plenty of time to do research when cystitis hits. I’ve spent hours in here! I have been a long term sufferer... Since I was a child. A virgin. My mum and my grandma both had the same weak spot. People tell me “oh always pee after sex” lol are you kidding me!? I know all the tricks!!! Let me tell you, there is much more impact on one’s sex life than going to the bathroom after. If only it were that simple.
I drink three litres of water a day, also make sure I have the correct vitamins and minerals to retain that hydration... I try to avoid wearing underwear at all, even being trapped in breathable cotton begins to irritate at the end of the day. I can’t wear bathers, and the hormonal change of getting my period always brings cystitis on, even without the use of tampons. I can’t get cold or sit on something cold, I can’t sit for too long in one spot, and I’m careful with my diet. On that note, I noticed some advice about avoiding lemon. Lemon actually becomes alkaline in the stomach because of the way it’s digested. As does apple cider vinager. I recommend the consumption of these to things when suffering. However I’m not a doctor, but they don’t yet understand the symptoms of cystitis without bacteria present anyway... So maybe that’s a good thing! Docs prescribe antibiotics with puzzled looks on their faces, send you off with your tablets that will probably lead to thrush (which is not ideal at the same time for obvious reasons, trust me) and they also can make non-bacterial cystitis worse as they eliminate good bacteria in your body too. You need that good bacteria if you are to have any chance! Acidophilus and kombuca are your friends, as are Chinese herbs. Believe me I am no hippy, just saying the only tablet that has given me relief is a tablet called “urinary tract support” by a company called Ethical Nutrients. If you have never tried these, get a bottle. Thank me later. The only time my cystitis esculates to the point it’s at right now (blood and blood clots in all of the urine, not just at the end of urinating, and a visibly inflamed urethra) is when I wake up with it at night. I can feel it happening in the day and take these tablets I can generally get it under control.
I hope this helps someone, I’m off to put my adult nappy on and sleep on two beach towels x
Me on March 31, 2018:
You are amazing for sharing this wealth of information. Bless you! xoxo
Surrah19 on March 23, 2018:
I am crying tears of relief as I read your post. I have always had bladder issues caused by too much Vitamin C and the doctors have never believed me. I’ve felt very alone. I have had similar symptoms and have had significant improvement after pulling vitamin c from my diet (including the numerous additive forms in foods and even in things like makeup). I continue to try to fight and improve every day and I am hopeful it will completely be under control at some point soon.
Toria on March 22, 2018:
Thank you so much for your support. It's really appreciated and your advice was great.
Bit of an update. Have had a really good couple of days this week, nearly three weeks into my diet. After cutting literally everything, I've found that gluten is ok as are most vegetables, which I'm so happy about. So basically I'm inadvertantly vegan at the moment, but it's ok. Going to try dairy again in around a week - but not any of the acid foods on the list yet as I don't think my bladder is ready yet. Proud of myself for lasting for over 6 weeks without any caffeine, alcohol, fruit juice and soda now (I cut these prior to the crazy diet). I love water, mint tea and have found food-wise that rice crackers avocado with sea salt and olive oil is yum.
I accidentally had some sweetener on a rice cracker the other day though and that really effected me - sweetener beware!
I've now had my ultrasound. Nothing is seriously wrong with my bladder. Now have another one for anything gynae related. Unfortunately, I had a bit of a set back this week as went to the doctors and she made me have an impromptu smear in case I had cervical cancer. All I can say is that it set my urinary tract on fire for around 24 hours. But I'm so pleased to say that with a lot of self-care my bladder was back to the stage is was before within 48 hours.
I've also started taking marshmallow root, glucoamine chrondoitin, calcium with vitamin d, d-mannose and zinc - finding that out of all of them the marshmallow root is the most soothing for my bladder. I live in the U.K., and had to order it from the US, so any Europeans wondering whether it's worth it, I'd say try it as I've definitely seen an improvement.
Prelief works a dream for meals that you aren't 100% sure are totally safe. Again, not available in the U.K. but Amazon UK still supplies it.
In addition to the ultrasound for gynae stuff I have around a month until I see a urologist. My doctor has already said that they're likely to go straight for a cystocopy - which I really don't want. Considering how bad my urinary tract felt from a smear, I can't imagine how bad a cystocopy will be. So hoping I continue to improve over the next month or so and I'm not forced to have it.
Will keep everyone updated :)
Jessica on March 20, 2018:
Hi all! This forum has given me such comfort knowing that I'm not alone. I had UTI Symptoms back in December 2017. My UTI symptoms consist of frequency/urgency and no burning when peeing. My doctor at the time was not available for an appointment so he prescribed me antibiotics without a urinalysis. I took Bactrim for 3 days and had terrible side effects. I took an at-home UTI test and it tested positive for Nitrites. On the last day of the antibiotics it began to test negative for Nitrites. I ended up having chronic pelvic pain (feels like period cramps) and a low-grade fever and went to the Urgent Care on New Years Eve. The doctor there just told me it was ovulation pain and gave me an injection of Toradol. Flash forward to February where I still have chronic pelvic pain. I went to another doctor who performed a swab on me and urine culture test which both came back negative. I received an pelvic and trans-vaginal ultrasound which also came back normal. My gyno prescribed me Macrobid after suspecting I might still have an infection even with a negative culture. I took the antibiotics and still had chronic pelvic pain. My gyno suspected that I may have inflammation and scarring from my previous UTI and told me to give it time to heal. It started to feel better and almost 100% better until I was on vacation. The entire vacation I felt fine until the very last day (March 8th, 2018) I decided to drink a strong cocktail. That night I felt the same urgency, frequency and pelvic pain begin. From March 9th until now I began to feel the same symptoms but they are beginning to subside again. I've given up alcohol since I believe it was a trigger. My gyno is recommending for me to have a cystoscopy done and see a urologist. I am planning on contacting this urologist but am hesitant. I do have chronic pelvic pain and I urinate almost every hour at work but do not have pain when urinating just a discomfort after emptying out my bladder. I also do not have any pain with sex. I am just worried since I felt like I was back to normal a few weeks ago and now I have a dull ache not as severe as last time but the same type of feeling. If anyone has any advice for me, success stories or any similar stories, I'd love to hear from you.
Tara on March 20, 2018:
Thank you for writing this. I have felt like I'm going crazy for years now. I have tested negative for a UTI 3x and have an appointment with a specialist in a few months. Sometimes my bladder issues have taken over my life. I loved reading through the comments, since I suffer from the same things most of you do. I wanted to say 2 things that have saved me. I stopped eating any wheat products and it cut down on flare ups by 90%. And also... ALKA SELTZER. I take it when I feel a flare up and it helps amazingly within an hour. Hope this helps some people!
Sahnei on March 14, 2018:
I got a UTI in 2016 and was given Rocephin. Most symptoms cleared, but the smelly urine remained. All of my tests were negative for bacteria for two years. In April of 2017 I have another urine sample to my PCP. It came back clean but a week later the lab sent me something saying there was blood and that if my next culture showed it In would have to go to a urologist. So in Dec of 2017 there was blood again and off I went to the urologist. i told him that I'd always felt like I had to press down to release since a child but I had lived with it and the thing that bothered me was the smell. He dismissed it and said I was healthy and to follow up in 6 mos as he didn't find any blood and there has to be 3 molecules or more of blood in order to treat. A week later I developed a yeast infection. I treated it . Two weeks later (2018) I had the horrible symptoms of a UTI. This time it was worse. The burning, smell, and frequency. No urgency. C&S came back showing bacteria proteus mirabilis. A tough bacteria to control especially with me being allergic to a few medications that it was sensitive to. I had two choices to either take a med I was allergic to or go on IV antibiotics that was very dangerous. I prayed for several days as to what to do. I went to a walk in one evening with back pain and the NP told me I'd better do something before it progressed. I took the one I was allergic to and ended up in the ER. I was red from head to toe and swollen. Er doc says he did a urinalysis and found no infection. ????? I was confused but feeling worse. His C&S did show blood though. My urologist said you have no choice. Go on the IV. I did with my head hung low. I know how my body reacts to antibiotics. It was a nightmare. It took me time to even recover from the antibiotics.
Right now. I have intermittent back and pelvic pain. I can literally feel my bladder fill up and I haven drank anything ! I have to go to the restroom sometimes every 45 min. Sometimes once every couple of hours. All tests have come back negative at this point as far as bacteria. Because I thought antibiotics failed. I cannot move my bowels on my own without an enema. I have completely changed my diet absolutely no sugar. I drink plenty of water. My PCP told me to take cranberry pills. I did for a few days and then one day I started peeing every 45 minutes. I didn't know if it was the cranberry pill or the OLE I'd taken. I cut out OLE and continued the cranberry pill. I ended up having to take AZO because I couldn't sleep. I was fine for the next day or so and then I wasn't. The yeast was raging at this point and Diflucan was like candy. I stopped the cranberry pill and decided to take Vit C because I wasn't sure about the infection since that particular bacteria likes to hide and not show up on tests. I was fine with the first dose of 1000mg and thought I could flush it out with 1000 more. I peed all night and woke up in the morning feeling that twinge in my bladder. It's not painful but it's like I can feel it and it's uncomfortable. But my lower back and pelvic pain is about a 3 from time to time. I've never had back pain before this UTI. I'm thinking that it's possible that the cranberry and Vit C possibly irritated me but the type of bacteria I was dealing with thrives in alkaline conditions which is completely opposite of 90% of bacteria and UTI cases. The bacteria that was found despises acidic conditions,but as of last urinalysis it's not showing up but I have these symptoms!! Argh!
Alyson on March 13, 2018:
Reading many of these comments I hope all of you are healing and feeling better. I am prone to UTI's and in December 2017 (2.5 months ago) I had a really bad one that I could feel was in my bladder. I took a round of Cipro, which didn't really clear it as I didn't realize until the last day I wasn't supposed to take a multivitamin at the same time. 3 weeks later I had to refill Cipro. Knowing about the multivitamins, I felt better within a day. 3 days into it and felt 110% but wanted to finish the course just in case. About 4 days in, I felt intense bladder pressure and frequency and went to Urgent Care. The Dr told me the infection was gone, and that this was inflammation. I did another urine test a week or two later at the walk in, and told the same thing. Since then I have done everything: cut out coffee, alcohol, tried the Marshmallow root and Slippery Elm, multivitamin, Omega 3 etc.
About a month and a half ago I started Acupuncture which has helped, and am taking Chinese herbs. In less than 2 weeks this will be three months of this, pressure/sensitivity in the bladder and sometimes urethra discomfort. I am starting to go crazy. Symptoms will improve and then get worse, or change. Last week I felt great except if it wasnt a huge pee, I was left with a bit of pain/discomfort in my urethra. Now, the sensitivity is back in my bladder. I was told to take NSAIDs for the inflammation, which do help. But, as they do not actually fix anything I wasn't sure if it would help for now**, but make the healing process take longer?
I don't believe it is bladder spasms, but inflammation as it is sensitive all the time and to the touch. My Acupuncturist did say it feels tight. Maybe I should try antispasmodics??
I can't imagine this going on for another 3 months. I am thinking about taking NSAIDs daily, while my body heals. What are your thoughts on using NSAIDs for this??
Carolyn on March 12, 2018:
I feel for you! I have suffered two bouts of this in 4 years. It takes a while for your bladder to heal. Patience is needed and that is so hard when one just wants their life back and in my case I just wanted my coffee back as well! My Urologist has said that the lining of my bladder had thinned and that causes inflammation which in turn causes bladder spasms. They are very painful. To me it feels like a rug burn on the inside of my bladder, sometimes urethra pain/burning and of course the constant urge to want to go to the bathroom.
For me temporary relief came from the following:
Ibuprofen (I took 800mg in morning, afternoon 600mg and another 600mg before bedtime)
The baking soda took the edge off.
Hot baths and heating pad in bed.
Prelief before eating anything.
YouTube has videos for relaxation and some even to promote healing.
It took me a few months before my primary referred me to a Urologist (had already done the Gynecologist route to no avail). He put me on Myrebetriq and that helped to calm my bladder down. He explained the importance of eating a completely acidic free diet and to keep myself well hydrated. I drank at least a cup of water an hour and many times I would sip on hot water. It took a few weeks before I saw improvement. It then took 3-4 months before I was completely symptom free. Then I slowly introduced back the no no foods.
I just had another bout and I had forgotten how hard it is to go through this. The quality of life is drastically reduced. This time around I am taking Toviaz and it has been a god send. I am now becoming symptom free after a solid 6-7 weeks in pain! (I could not get in right away to the Urologist). My doctor will start to ween me off the Toviaz in the beginning of May! In the meantime I continue all the self care I can! I trust I will heal as I did in the past.
I wish you a speedy recover and please update here on how you are doing Toria.
All My Best,
Toria on March 10, 2018:
Hi I've been suffering really badly since the middle of January with the constant urge to urinate combined with bladder pain. I've had two sets of antibiotics from the doctor, despite saying that there was no bacteria in my urine. I'm in my late 20s so it shouldn't be hormonal.
After my latest (fourth) trip I'm now having an ultrasound next week. I don't feel like my urine is particular acidic and drinking baking soda has little/no effect. I take d mannose and vitamin e everyday. I've also tried taking prerelief before meals in case it was acid as well. I'm currently searching for a brand of gluscosamine that doesn't have vitamin c in. I've also tried zinc, uva ursi, spirulina (I thought it might be that I was nutrient deficient), cranberry tablets (stopped that after my research!), and a lot of ibuprofen to try and reduce any inflammation in my bladder. I've also been drinking a lot of chamomile tea (though I've now cut that as you'll see below).
I just wanted to clarify some of the dietary stuff. After doing a lot of reading, I got the to the point of frustration last week that I literally decided to cut everything from my diet.
To clarify, I haven't had any coffee, alcohol, soda or fruit juice for over a month now - this has made little difference though the one time I did have a soda before I cut it out did increase my pain level, so this was effecting it before.
So after this making little difference, i decided to take it to the next level.
I've been keeping a food diary and have cut all gluten, dairy, soya, sugar, fruit etc from my diet. I drink only water. It now literally consists of oatmeal, vedgetables (not including any nightshade vedgetables, tomatoes etc) and poultry/fish with the occasional rice cake.
However, I've been doing it for a week and have found it has made little difference.
I've also found that when I did try and drink dairy it actually increased my pain - more than at any other time - and the high level 'give me all the pain killers' pain lasted around two days.
My pain is continuing to maintain since these drastic diet changes. I know it's only been a week, but how long did it take for your symptoms to start decreasing Sherry/others based on dietary changes?
I know the diet may not help and everyone is different, but I basically want to give myself a time line so I have something to aim for! Feeling pretty awful mentally and physically because of the whole thing but keeping strong. I find distraction works the best and I continually mentally tell myself I don't need to urinate despite the pain, as it's the worst when I do try and go and there's nothing to come out. This means I can last for around 2 hours at work.
I'm also incorporating pelvic exercises as well.
Any advice would be appreciated.
Tricia98765 on February 22, 2018:
I have been suffering from bladder spasms since February of 2016. The urologist gave me a sonogram and a cystoscope but found no underlying cause. For me, my symptoms started 2 months after menopause, so I don't know if it is related. I discovered your article about a year ago, and several of your suggestions help, but still I suffer about 3 days a week. I have ph testing strips and I know that when I'm having symptoms, my urine is acidic. Drinking the baking soda water that you suggest always helps. I am not a coffee drinker, but I do know that when I drink strong tea the symptoms get worse. Other than the tea, I have not discovered which foods are triggering my bladder spasms. Taking AZO helps (the one that contains phenazopyridine, not the one that contains cranberries). My urologist said since I do not have a UTI, it is ok to take it for more than 3 days. RECENTLY I FOUND SOMETHING THAT HELPS ME, so I decided to share. LEMON JUICE added to my water. I discovered that this helped on accident. I noticed my symptoms were always happening at work, not at home. I work long shifts, and by the end of the day I am often doing the "potty dance". Emptying my bladder does not help and I am miserable. I tried to figure out what was different about what I was doing at home where I rarely had symptoms, and at work where I always have symptoms by the end of the work day. At home, I drink tap water and add lemon juice ( I do this because I like the flavor). This is mostly what I drink, other than an occasional weak tea or milk. At work, I always drink bottled water. So 3 weeks ago, I started adding lemon juice to my bottled water at work. I have now seen a noticeable improvement in my symptoms. If I am already having symptoms, the lemon water does not cause great improvement like the baking soda water does, but I have found that I drink lemon water consistently, it stops the problem from occurring in the first place, or makes the symptoms much less severe. I drink 1 or 2 sixteen ounce bottles a day (with lemon juice added). I hope this may help someone. :)
JW on February 22, 2018:
I was diagnosed with advanced UTI September 2017, was rx antibiotics and the infection cleared no symptoms until 6 weeks later I felt UTI symptoms. Gyno tested Amanda urine analysis showed a “borderline” UTI.. went on antibiotics no help, went on two more rounds of antibiotics pain increased. All tests negative for UTI - mri was clear. Urologist suggested I was suffering from pelvic spasms however I disagree.. i am certain it is My bladder, cut out alcohol and started excercising 3x week symptoms greatly subsided but a dull pain remained unless my I was constantly drinking water. Had coffee - no pain, OJ -no pain. No urinary urges just pelvic pain. I noticed when I have an a sip of alcohol i experience immediate pain, prior to alcohol actually be reaching my bladder. All gyno test negative - cystoscopy resulted in all negative findings. It has been 6 months and the pain hasn’t improved worried I have IC even though urologist said no.. has anyone experienced alcohol as a trigger upon first sip??
YYas on February 20, 2018:
I would like to thank you very much for your article. I found it very supportive and encouraging at some point in my life. I can't say that I completely recovered from UTI, keeping a diet is sometimes very hard and it requires a lot of strength. I would like to send a message to women who are still struggling with the symptoms and have no idea what is going on.
I have struggled with this problem for a year, but here is what I came up with recently. Most of the docs treat you with antibiotics without taking the time to figure out what could be the real REASON for the symptoms. My urologist simply said that I'm one of the unlucky women and prescribed me the same antibiotic which I specifically told her I'm resistant to. After completing the 5th course of antibiotics in the past 6 months, I struggled with pain, discomfort, chills; it affected every aspect of my physical and mental life. Now I truly believe there is always a reason for that, it's not random. I started calling that doctor saying that I now have back pain. She prescribed me a low dose antibiotic to take while symptoms persist. Why? I had no bacteria at that time. I didn't do that, instead, I insisted to refer me to ultrasound of my kidneys. The ultrasound showed that water was getting stuck in one of my kidneys... So the urine doesn't go through ureter to bladder easily. It gets stuck there and comes back to kidney.
I found another doctor after a while. She was very familiar with diet and natural treatments. Most of the doctors don't know what d-manose is. I think a very good doctor is NOT the one who got his/her diploma, but the one who continues to study and stays current with the research news. However, we can't get diagnosed without doctors. They should test us anyway: urine tests, cystoscopy, ultrasound an CT scans are very important in all the cases when you are struggling with UTI and Cystitis for a long period of time. I would like to encourage everyone to go ahead and do not let doctors disregard their symptoms with enormous amount of antibiotics.
Sherry Hewins on February 20, 2018:
Ginger, have you changed your diet? You might try taking Prelief before meals. Definitely get off chocolate, soda, and citrus fruits.
Neva on February 15, 2018:
The oxybutin chloride made my symptoms worse. It inflamed my bladder , caused agitation and I urinated more had urge to pee and nothing came out. Diet is the key. Took Xanax and Tylenol
Ginger on February 11, 2018:
Thank you for sharing your story and creating this forum. I've been in misery since Thanksgiving. Went to gyno, was diagnosed with bacterial infection and uti. Prescribed Macrobid, which did not relieve uti symptoms. Had horrible back pain, heart racing, and uti symptoms. Gyno sent me to ER, there I received 10 day prescription for Uti - my bloodwork was all normal. I was told to follow up with Gyno in a week. Uti symptoms of constant urgency never relieved, Gyno said she couldnt help because this Uti test was negaive, so I was referred to Urologist. Urologist took urine sample to be cultured and ordered Ultrasound. Ultrasound was normal however urine showed a drug resistent bacteria, 10 days of cipro was prescribed. Finally, I began feeling better. Unfortunately, a week after stopping antibiotics all the pain and awful urgency returned. My new gyno found no bacteria in my urine culture last week. Throughout this I've been taking every supplement recommended - women s probiotics, dmannose, uva usi, marshmallow root, bromelain. Nothing seems to help. This horrible condition is effecting my mind too, can't think straight or focus well. I am a teacher, each day is a struggle to get through. I'm not sure what to do next. No Dr has been able to help. I'm worried I have a persistent embedded uti & the bacteria is not showing, doctor won't prescribe more cipro which is the only thing that ever helped. in addition, I just turned 50 so my hormones may be a factor. Any ideas?
Caeolyn T on February 10, 2018:
Ibuprofen is perfectly fine. My urologist said I could take 2 three times. I took 4 (800mg) and then 2 or 3 for the rest of the day. They have 800mg ibuprofen, but it is only available by prescription. I told my urologist that I was going to do that and he said one can safely take ibuprofen everyday for two weeks. Two or three did not cut it for me - the pain was horrible and 800mg took the edge off. I would ask your doctor however as I am not a doctor! What helped me tremendously is the AZO pills.
I had a bladder flare for the first time a few years ago and I recovered. It took months, but I did make a full recovery. I just had another flare up in November and I am just now feeling like I am healing. It was so hard to suffer from it again. I had forgotten how it ruins the quality of your life. This article was a life saver for me a few years ago and again this go around. Thanks Sherry for bringing hope to so many! ❤️
Sherry Hewins (author) from Sierra Foothills, CA on February 09, 2018:
As far as I know, Ibuprofen is not bad. I say, if it makes you feel better, do it. Perhaps some of my friends will chime in on this question.
marciazhat on February 07, 2018:
Thanks for such an informative post. I have the usual symptoms minus pain upon urination. Testing by the urologist has ruled out anything "bad" but there was blood in the urine (not visible) and so I was sent to the gyno for HRT as I am of that age. So far HRT (which I do NOT want to be on) is not helping but I'm glad because I want to discontinue it. So back to the urologist I go and have been on Myrbetric for a week now. I read that it can take over 4 weeks to work and no, the Dr didn't tell me that, I had to find that out on my own. He also gave me samples for 2 weeks only and no script so I'll have to pay to find out if it is working. I have been on what I thought was a good diet for a few weeks now but see that the homemade lentil soup is probably what is hurting right me now. I will adjust my diet but do notice that ibuprofen definitely helps. And here is my question. Is ibuprofen bad for the bladder? I'd hate to find out that what makes me feel better is really making me feel worse. Not sure that asking the doctor is so wise these days so maybe someone out there knows. I'm grumpy. But thanks again for such an informative post and the willingness to share it with us. xo
Natalie on February 03, 2018:
Ugh...Going through this now! Was told I had a UTI by BO 3 rounds of antibiotics, went to Urologist and she didn’t see anything. Having issue once more, and my urologist is very active in my health. The waiting (especially during a weekend) is hard. Thanks for the advice.
Carrie on January 17, 2018:
Thank you for your helpful information. I am hanging on to hope that my symptoms will go away with time as my urologist keeps telling me. I had a bad UTI 3 months ago the infection went away but lingering symptoms of bladder pressure and urethra discomfort also frequent urination decided to stay. I have had a full work up to rule out everything possible. Custom showed urethritis and inflammation at the bladder neck. I was put on low dose antibiotic for 3 months and toviaz for bladder control. I am 3 weeks in to this treatment plan In addition to diet change and taking bladder healing supplements. I am desperate to get my normal life back like it was before all this started. It has been very hard mentally and physically. I have had good days as if the symptoms were gone only to be followed by bad day to remind me they were still there. I will continue to pray this nightmare will all go away. I am other wise healthy. Any success stories would be great to hear. Thank you.
Jennifer on December 30, 2017:
Thanks, Sherry, I had no coffee today and feel quite a bit better. I think it was a perfect storm of circumstances - menopause and thinning bladder etc. tissue, infection and too much acidic food/drink. This forum is a godsend!
Sherry Hewins (author) from Sierra Foothills, CA on December 30, 2017:
Thanks for sharing your story Jennifer. I hope you have nipped the problem in the bud.
Jennifer on December 29, 2017:
Thank you! Just had a couple of bad bouts with urgency burning- the first preceded an actual UTI and the second happened with no bacteria present whatsoever a month later. Was drinking lemon water every morning and I've stopped that! Doctors office said my sample did contain some red blood cells, leukocytes and pus, so I know there is inflammation. Will give up even the once a morning coffee, chocolate and wine. For the second episode I'd had a small carbonated drink hours before and I sure won't do that ever again! I think doc will order an ultrasound just to check.
Anne on December 04, 2017:
I can’t thank you enough for this blog that helped me through the bladder pain that I suffered from since February. Before that, I had uti episodes that were treated with antibiotics and I suppose some ‘uti’ symptoms that were really bladder irritation. From your blog, I learnt that my urge to urinate and pain were due to acidic foods and an over sensitive bladder. Almost recovering from these symptoms, I had a flare up yesterday. Remembering that oatmeal may have helped before, I had a bowl this morning and am feeling back to normal. Hope this tip helps anyone looking for additional support. Thanks again!
Luise Smith on November 29, 2017:
I'm new here...want to add my experience. Had what seemed like a mild uti a month ago, got Bactrim. It started to slightly help by 5th day (of 5 day Rx). Went back to doc he said no infection. Had the pelvic pain, urethral pain, back pain. Spent 3 weeks pretty much hostage in my house with hot water bottles. Took uva ursi and marshmallow root, magnesium, no coffee,tea, chocolate, gallons of water. Back to doc, he insisted no infection and that I should go ahead and have coffee. I asked what to do about the pain, he says "no infection", like if he keeps saying it, that it won't hurt any more! I can go max 2 hours without feeling like I absolutely must pee. And I'm going away to work in a very remote area for 4 months....I do have another 5 days of antibiotic if I need it, and will take my supplements with me. The hardest part is feeling almost suicidal as the pain just doesn't go away! It can lessen, but is always there. I guess I'm on the road to recovery as a couple times I felt like I had some energy, but during all this I was exhausted and would fall asleep in my chair like my old grandfather. It does help to hear that others have gone through it. It doesn't help that I only have one kidney (living donor) and worry that there is actually an infection which will go into the kidney. My next step is physio. I take a bit of baking soda when it gets really burny feeling. It's soo awful when your doctor shrugs this off. I did get him to send away for a lab culture though, rather than just the office test. Waiting to hear. Thanks to others for posting their experiences, it helps!
Sherry Hewins (author) from Sierra Foothills, CA on November 22, 2017:
Thanks so much for your input! There is so much still to be learned about these symptoms. It is good that we who have them can help one another.
yiashnee white on November 22, 2017:
I just wanted to start off by thanking you for your blog about this subject. I experienced what I assume is a bladder spasm ad irritable bladder for about 3 weeks and I was emotionally drained (and of course in so much pain), and this blog was the only thing that made me feel supported. I have had recurrent utis for 5 years (I am 23) and this time it wouldnt go.. and then i realised it was potentially IC . I have seen a urologist but I found the main thing that worked for me is an ultra clean diet, and the supplements that are mentioned on this blog. Another thing i would like to suggest is cranio-sacral osteopathy. I am an osteopath and I received treatment on my pelvic floor muscles, bladder, cranium and sacrum as my bladder was sort of hanging (in basic terms) and my pelvic floor was overworked and tight. This helped so so so much. The osteopath also worked on my sympathetic nervous system by manipulating my thoracic spine as this becomes overworked and can change the way our bladder and other organs function. So please please see an osteopath if you are suffering. Definitely as if they are cranio-sacral based with some structural imput. Again, thanks so much for the support and to everyone who comments!
cw/me on November 13, 2017:
Maria, I am happy to hear my input has helped you. My main symptom was excruciating pain in the vulvar region which lasted at least 7 months, waxing and waning in intensity, until about the end of the 8th month it was bearable.
Before that point, not a day went by when I wasn't in extraordinary pain from the overwhelming burning sensation. As you already know, everyone is different in terms of their symptoms. For me, frequency was not the main issue. I did not need to pee very frequently, except in the beginning, but there were days when I had more urgency. For at least the first few months, I was peeing more than usual and getting up at night to pee. I forget how long that lasted, but probably several months.
The healing process is also non-linear, which means you aren't necessarily going to feel a little better every day until everything is healed. There will be ups and downs. And you will get impatient being unable to eat and drink what you want and will fall off the wagon here and there, which will provoke symptoms that make it seem like you are not moving in a direction of healing, which isn't the case.
Feeling better meant I could get through at least a couple hours each day without pain, and then very gradually, entire days and then weeks and then to a point where I don't even think about it until there's a slight tingling from something I ate, which still does happen. It is actually happening right now as I tried to re-introduce NutraSweet and find my bladder wants nothing to do with it.
It was probably a year before I went days or a few weeks without any pain. But the most disabling pain took about eight months to subside. I knew I was getting better when the pain lessened and I was able to introduce foods I couldn't eat before.
Today, I am doing much better but my bladder has been slightly impaired and I don't know if that is reversible. I have read it can take up to three years, maybe more, for a bladder irritation to fully heal. I never used to feel a strong, sudden urge to pee after drinking coffee, for example, and many times it feels like my bladder needs to empty out more after I pee, but I don't strain and just wait for a little more to come out when it wants to. I was never that way before. I think this is also a factor of age and being in late perimenopause.
I hope this is also useful info to you. Four months seems like an eternity when you are in such discomfort, but in terms of healing your bladder, it's still very early days. So keep doing what you are doing, watching what you eat for now and doing your best to control flares. And above all, don't stress that you are not getting better. Not only is that likely to be untrue, but stress makes everything worse.
Sherry Hewins (author) from Sierra Foothills, CA on November 12, 2017:
Maria, I think your experience is very typical. Perhaps I made my journey seem too simple. I definitely had my setbacks.
Even though I describe myself as being healed now, I think I still visit the bathroom more than the average person. I think my bladder is just a little shrunk and a little damaged.
So, you may end up with a new normal, but as long as your general direction is toward getting better, I think you can get to a comfortable place. Unfortunately, it is a slow process.
Maria on November 12, 2017:
Sherry, Your 2 cents is ALWAYS welcome. :) I shoudn't really be complaining about one every 1.5 hours but its a long way from my normal and I'm still having flare-ups where I do pee more often accompanied by the burning/pressure. I wonder if the road to healing should have so much of this two steps forward, one step back kind of thing. I thought Id feel progressively better as its been almost 4 months and still having bad days and even my good days are peeing every hour and a half. It sounds like your road to getting better was more straightforward. You cut out the acidic foods and things got better. I know everyone is different though..
Sherry Hewins (author) from Sierra Foothills, CA on November 11, 2017:
Maria, I know you didn't address your question to me, but I thought I'd put my 2 cent in. Peeing only once every hour and a half would have seemed like heaven to me when I was at my worst. I was struggling to wait even 10 minutes.
Maria on November 10, 2017:
cw/me - question for you about what 'feeling better' actually felt like. I ask because I'm almost 4 months into this bladder irritation and even on days I'm not in pain, I'm still peeing every 1.5 hours during the day and about 3-4 times at night. So I'm just questioning if I'm really getting better. I guess what I'm asking is how did you know you were getting better? As for me I'm still having small flares as I try new foods and like I said, even on 'good' days I'm still peeing frequently, though there is no pain/pressure. (I'm really going to slow down and use your method of introducing things after 2 weeks of mini amounts. I think I've been impatient and not doing that has been the cause of some flares that could have been avoided. Like you, the acidic food list is no help. I react to things that aren't acidic, it's kind of random like you said). Anyway, did you still have frequency as you started to get better? When did the frequency start to go away? Thanks again--reading about your experience on this thread has helped me more than you know.
Lu-T on November 09, 2017:
Heres my story....had abdominal pain , groin pain, pelvic pain for almost 3 months...went for a Ct Scan yesterday and thank God it showed nothing..no cancer no tumors,nothing. But I still have the pain. Has anyone experienced this?
Lu-T on November 02, 2017:
cw/me Thanks for your thoughts... GP thinks it may be something else so he will probably order a CT Scan. Right now I'm up in the air. He said he never heard of bladder pain lasting as long as I have had it. Please keep me in your prayers. I will keep you in mine.
Sherry Hewins (author) from Sierra Foothills, CA on November 01, 2017:
Kay Dee - I'm so glad you got help from your urologist, and that have found your way to healing.
cw/me on October 31, 2017:
Hi Lu-T, I also had that groin pain more on one side of the groin than the other which varied from stronger tingling/burning to dull tingling, which was always there and stayed for many months. As I continue to add different foods I've avoided for a year because of my bladder, it periodically comes back but is faint and nowhere near as bothersome.
It's a great idea to get checked out and alleviate your fears, as all those thoughts of what if it's something serious eventually get to you. I went through all of that. I couldn't even walk for the first several weeks because my back was in such terrible shape and my legs were numb. The inflammation was irritating an existing back problem. That went away after several weeks; however, everyone is different so do not get into the thinking that someone else was better in this many weeks, so why am I still suffering.
I've also experienced abdominal bloating but that has been a problem since I went into perimenopause so I don't know if it's truly related. Everything you're describing sounds like the familiar symptoms of lingering bladder inflammation. Just keep your dr. in the loop and continue to be careful about what you eat and drink. Dr's are often clueless about bladder inflammation. You probably need relaxation and reassurance more than any other treatment. I know what you are feeling and thought this was how I was going to feel for the rest of my life. When I get flareups now and again they are very minor. It has been almost 17 months for me and I do still feel some effects triggered by certain foods. I hope to keep improving and am thrilled that I'm nothing like the pain-riddled mess I was last year. It takes time so hang in there!
Kay Dee on October 31, 2017:
Today is Halloween and my trouble started on Memorial Day weekend and I finally feel better. My GP was no help so I went to a urologist after the first week. He was a huge help. What helped the most was not eating anything acidic (I ate lots of chicken and baked potatoes), drinking warm water with baking soda, and a combo of glucosamine chondroitin and calcium citrate w/ vitamin D (taken together). I was craving something sweet, so I ate fruit loops, bad idea.
It takes time. Be patient and don't give in to temptation until you're completely healed. Then introduce the most important thing to you first and slowly. I started with half a "clean" multi vitamin. Not brave enough to start vitamin C yet. I have one cup of low acid decaf in the morning, I've tried wine several times with different results, and I eat most everything like before except cured meat. Although I try to avoid chemicals in my food now. I also try really hard to reduce stress. I was a crying mess after reading posts of people who never recovered. I told my husband that I could never go on vacation or out to eat or have any kind of life away from my potty. Anyway, the stress didn't help. For me it's a trigger. You will feel better. It will take time. I realized that I had been having simptoms for years, mostly when I had to much coffee. (road trips) The most important thing I learned was that I have to be in control of what goes in my body because it's my responsibility and I have to deal with the aftermath.
Lu-T on October 30, 2017:
I'm going to my GP on Wednesday because back pain is really bad today. I'm wondering if I have a Kidney Infection . My problem started out as an infection. I have been testing it myself. Maybe my dr will send it out to lab. I wish there were answers to all this. At this point I just need relief. I haven't gotten any relief from the Bladder Q I have been taking. I'm getting upset at this point. Thanks
Lu-T on October 29, 2017:
Thank You all for be patient with my questions.. Is groin pain part of all this? I'm 2 and 1/2 months dealing with this problem...Right now my Bladder pain is minimal.. I haven't even been complaining about it. Just a little sore. Pain in right side of groin is like a tingling feeling. My lower back and sometimes upper back is the worse. Will the back pain go away when the bladder heals. Am I expecting too much too soon.? Thank You All Again and I wish you all a speedy recovery! PS Checked My urine this morning and No infection.
Lu-T on October 28, 2017:
Had anyone experienced Bloating in the abdomen?
Sherry Hewins (author) from Sierra Foothills, CA on October 25, 2017:
Several people have mentioned the subject of hip pain. I think this is a good time to remind people that, while symptoms may seem related, sometimes they stem from a different issue.
I have pain that I would have described as hip pain, but it stems from my sciatic nerve. The sciatic nerve runs down your leg from the spine, many people experience the pain in their hip. Sciatic nerve pain is common and it can be caused by anything that puts pressure on that nerve.
Melisa on October 25, 2017:
Lu-T, I do have pelvic pain but it is not as severe as my bladder pain, it is more of pressure in that area and sometimes burning. Prelief has also helped me feel a bit better, I take it with most meals. I don't have back pain, but bad hip pain. Have they done a kidney scan to make sure you don't have kidney stones? I had someone teach our to me on another site who had all the same symptoms and the docs missed her kidney stones on the scan and then months later she passed a huge stone. I don't know but it could be worth mentioning. Also, has your doc tested for ureaplasma bacteria? It doesn't show up on a normal urine culture but it causes the same symptoms. Best of luck, keep us posted!
Savannah Moss on October 24, 2017:
Marshmallow root gelcaps helps my bladder pain during a flare up. And progesterone cream helps a lot too. I put a little progesterone cream on my stomach when I'm on my cycle. My bladder flares up due to hormone fluctuations.
cw/me on October 24, 2017:
Maria, some other things I did to help heal was drink a gallon of water a day to make sure my bladder was well flushed out; I also found that vigorous walking alleviated the pain and discomfort of urethral burning temporarily; I introduced different foods back into my diet one at a time, allowing about two weeks before deciding if I was able to tolerate them or not and kept a food journal to figure out what might trigger a reaction. A confusing process in the beginning, until you are able to see a pattern after consuming certain foods and discovering the timeframes in which they may cause a reaction. I took a glucosamine and chondroitin supplement 3x daily to coat the bladder lining, which takes at least 3-6 months to take effect. Besides that, I couldn't really do much else but wait for the damaged lining to repair itself.