UTI Symptoms Not Caused by Bacteria: What Worked for Me

Updated on January 11, 2018
Sherry Hewins profile image

I have always been interested in health issues and healing. This is my experience with bladder spasm and UTI symptoms.

Woman in pain
Woman in pain | Source

I Have to Pee all the Time, But I Don't Have an Infection

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?

When I was in this situation, I found out that antibiotics don't help; in fact, they may make things worse. Often a doctor will prescribe antibiotics for UTI symptoms without performing a urinalysis, but that can be a mistake if you're actually dealing with a condition such as bladder spasm or, worse yet, interstitial cystitis. After what I have been through, I would recommend that you insist on a urinalysis before taking antibiotics for urinary symptoms.

Through research and trial and error, I found the things that worked for me. I now have been pain-free for over a year and a half, 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 Spasm

The urologist I went to called my problem "bladder spasm," and 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 of bladder spasm at some time in their lives, but recover from it completely.

I am not a medical professional. I am sharing my experience in the hope that it helps someone else who is going through this. Every person and every bladder is different. As my urologist pointed out, there are many things that can cause the same symptoms, and the cause of bladder pain can be hard to diagnose.

The Symptoms of Bladder Spasm

The most common symptoms of bladder spasm are:

  • Urinary frequency and urgency
  • Urethral burning
  • Pelvic pain

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.

If you show up at a doctors office in that condition, it will be even harder to be taken seriously. (In fact, when I showed up at the ER in tears, I was prescribed Xanax by a doctor who obviously thought I was just hysterical.) 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.

Bladder First Aid

I'll get into more details later, but if you are suffering right now, this is what I would do:

  • 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 anything any of the doctors I had been going to for months had.
  • 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.

Don't Strain When You Urinate

This is really important. You've probably been straining to empty every drop when you urinate; try not to do that, it's making things worse. The muscles in that area are all tense, and the nerves are overstimulated. You need to calm them down

Baking Soda
Baking Soda

Stop Drinking Cranberry Juice!

Do not drink cranberry juice or other fruit juice! it 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 Acidic Food and Drink

  • Immediately stop consuming all carbonated drinks, alcohol and coffee.
  • Do not eat any chocolate.
  • Drink plenty of plain water, but do not force yourself to drink gallons. Simply drink a glass whenever you think about it.

I give a more comprehensive list of "trigger foods" toward the end of this article.

What To Avoid: Don't Sabotage Yourself

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 Have

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 other options are Marshmallow Root, Chamomile or Catnip tea. 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.

Source

What's Wrong with Me? Could It Be Interstitial Cystitis?

The answer to that question is maybe, but maybe not.

If you are researching these symptoms on the Internet, or talking to your doctor, you may have heard of interstitial cystitis (IC). It is a chronic inflammation of the lining of the bladder.

If you have urinary frequency and urgency, urethral burning, and pelvic pain, you probably have cystitis, which is bladder inflammation. If it doesn't go away and no other cause can be found for it, then it may be interstitial cystitis.

Interstitial cystitis is often mistaken for a urinary tract infection. Patients may 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.

IC is a chronic condition. Just because you have urinary symptoms without bacteria does not mean that you have IC. It is a possibility, but many people, especially women, have these symptoms yet they recover completely.

Seeing a Urologist

Once your GP recognizes that you don't have a garden-variety bladder infection, you will probably be referred to a urologist. All of this takes time, and it will likely be a couple of months before you actually see the urologist. Usually the first thing he will want to do is a cystoscopy, for which 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 away. He said that if I got better before then, I should call and cancel.

The idea of that test really freaked me out, given the way I was feeling. And reading the interstitial cystitis forums I found online, 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, one of those conditions you just have to live with.

Don't Lose Hope

Now, looking back, I think most people who get over their problems never go back to the forum to share their story, so just because you don't see many success stories doesn't mean they don't exist. I did get some good advice for dietary changes and supplements from the IC forum, but I had to do a lot of digging. Here, I've tried to condense the information that helped me to make it more accessible for someone having a first experience with bladder irritation.

I never did have the cystoscopy. I was able to get my symptoms under control and opted not to have it. The cause of interstitial cystitis is mysterious, and I was never diagnosed with it, but I feel as though if I had continued to irritate my bladder, I could have developed this chronic condition.

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, despite your best effort, you don't get better, by all means have the test. If it turns out you do have interstitial cystitis, there are medications and treatments that may be beneficial to you.

You Don't Have to Live with Cystitis

You Don't Have to Live with Cystitis
You Don't Have to Live with Cystitis

I found great advice in this book; it was recommended to me by my urologist. I found it to be very helpful and informative. It goes into depth about the causes of cystitis, how to reduce bladder pain and how your diet can impact the condition.

 

Healing an Irritated Bladder: What Worked for Me

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 Interstitial Cystitis diet or IC diet, you will get a lot of varying advice on this. Different people seem to have different triggers. The ones I mention below 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 it within 10 minutes, burning my bladder.

This list is a good starting point. Pay attention to you body. If you feel worse, ask yourself, "What did I eat?"

Common Food Triggers

Spicy foods are one of the triggers that may cause your symptoms to worsen.
Spicy foods are one of the triggers that may cause your symptoms to worsen.

Foods to Avoid for Bladder Spasm or IC

  • Cranberry
  • Fruits other than pears
  • Coffee
  • Chocolate
  • Alcoholic beverages
  • Tomatoes and tomato sauce
  • Spicy foods
  • Carbonated beverages
  • Aspartame
  • Aged cheese
  • Sour cream
  • Yogurt
  • Corned beef
  • Cured meats like salami, bacon, or ham
  • Vinegar
  • Salad dressing
  • Mayonnaise
  • Lentils
  • Tree nuts
  • Onions
  • Soy
  • Preservatives
  • Artificial flavors
  • Vitamin Supplements - Especially Vitamin C

What to Eat

Most vegetables, meats, breads, and dairy products will be fine.
Most vegetables, meats, breads, and dairy products will be fine.

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 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.

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 this helps prevent vulvodynia, an associated condition which 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 acidic foods, even with it, until you get your symptoms somewhat under control. But I did use it occasionally as a precautionary measure if I needed to eat out, and I used it more often as my bladder improved and I was able to return to a more normal diet.

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, Chondroitin 200 mg, just because it doesn'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 did help 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.

This Is Based on My Personal Experience

I am not a medical professional. I only want to share my experience in the hope that it helps someone else who is going through this. Every person and every bladder is different. As my urologist pointed out to me, there are many things that can cause the same symptoms, and the cause of bladder pain can be hard to diagnose. What worked for me may not work for you. If it doesn't, don't give up; keep trying until you find something that does.

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.

Some Seasonal Advice

It is December 21 when I am writing this, and I am seeing a spike in visits to this page. That is making me recall the time when I had my very worst flair. It was Christmas time, and the office I work at was full of tasty treats. I love chocolate, and I was not able to resist the lure. If you are suffering right now, and you are eating a lot of chocolate, please stop!

I know it's hard, but nothing is worth that kind of suffering. Give yourself a gift for Christmas. The gift of healing!

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 unexplained bladder pain.

© 2012 Sherry Hewins

Comments

    0 of 8192 characters used
    Post Comment

    • profile image

      Tricia98765 33 hours ago

      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. :)

    • profile image

      JW 34 hours ago

      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??

    • profile image

      YYas 3 days ago

      Hi Sherry,

      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.

    • profile image

      Sherry Hewins 3 days ago

      Ginger, have you changed your diet? You might try taking Prelief before meals. Definitely get off chocolate, soda, and citrus fruits.

    • profile image

      Neva 8 days ago

      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

    • profile image

      Ginger 12 days ago

      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?

    • profile image

      Caeolyn T 13 days ago

      Marciazhat

      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 profile image
      Author

      Sherry Hewins 13 days ago from Sierra Foothills, CA

      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.

    • profile image

      marciazhat 2 weeks ago

      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

    • profile image

      Natalie 2 weeks ago

      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.

    • profile image

      Carrie 5 weeks ago

      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.

    • profile image

      Jennifer 7 weeks ago

      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 profile image
      Author

      Sherry Hewins 7 weeks ago from Sierra Foothills, CA

      Thanks for sharing your story Jennifer. I hope you have nipped the problem in the bud.

    • profile image

      Jennifer 8 weeks ago

      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.

    • profile image

      Anne 2 months ago

      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!

    • profile image

      Luise Smith 2 months ago

      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 profile image
      Author

      Sherry Hewins 3 months ago from Sierra Foothills, CA

      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.

    • profile image

      yiashnee white 3 months ago

      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!

    • profile image

      cw/me 3 months ago

      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 profile image
      Author

      Sherry Hewins 3 months ago from Sierra Foothills, CA

      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.

    • profile image

      Maria 3 months ago

      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 profile image
      Author

      Sherry Hewins 3 months ago from Sierra Foothills, CA

      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.

    • profile image

      Maria 3 months ago

      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.

    • profile image

      Lu-T 3 months ago

      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?

    • profile image

      Lu-T 3 months ago

      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 profile image
      Author

      Sherry Hewins 3 months ago from Sierra Foothills, CA

      Kay Dee - I'm so glad you got help from your urologist, and that have found your way to healing.

    • profile image

      cw/me 3 months ago

      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!

    • profile image

      Kay Dee 3 months ago

      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.

    • profile image

      Lu-T 3 months ago

      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

    • profile image

      Lu-T 3 months ago

      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.

    • profile image

      Lu-T 3 months ago

      Had anyone experienced Bloating in the abdomen?

    • Sherry Hewins profile image
      Author

      Sherry Hewins 4 months ago from Sierra Foothills, CA

      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.

    • profile image

      Melisa 4 months ago

      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 profile image

      Savannah Moss 4 months ago

      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.

    • profile image

      cw/me 4 months ago

      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.

    • Sherry Hewins profile image
      Author

      Sherry Hewins 4 months ago from Sierra Foothills, CA

      Maria, I didn't know what triggered the flares at the time, but I was completely ignorant about all of this. I imagine I was doing everything wrong, just living my carefree life.

      I think the last one I had was due to consuming large quantities of chocolate on a daily basis. It was the holiday season, and it seemed to be everywhere.

      Then of course, when I had symptoms, I would go for the cranberry juice. I think it just made everything worse. Plus, I wouldn't give up my coffee habit, and the constant straining to empty my bladder got my muscles all tense.

    • profile image

      Maria 4 months ago

      cw/me-- Thank you so much for the encouragement. It really does help to talk to other people who have gone through the exact same thing. That is amazing about the ice cream and the nuts! Congratulations! I hope to feel as good as you do one day soon. Btw, I use D-Mannose as well, its been helpful I agree.

      Right now Ive identified gluten, dairy and sugar as irritants and so I've cut those out, but still experience flares at times w/o being able to identify the specific cause which is frustrating. Can I ask you what else you did to heal?

    • profile image

      Maria 4 months ago

      Thanks for answering Sherry. Sounds like we experienced similar starts to our bladder issues. I have actually seen a urologist and she recommended Tagamet but it didnt seem to help and gave me insomnia. I've got an appointment for a pelvic floor physical therapist in November. For now I'm trying to get over this with just diet and some supplements, some of which you recommended. Thank you so much for all the info.

      One last question-- you said you had a few flares that lasted several months each. Do you remember what triggered the flares?

    • profile image

      cw/me 4 months ago

      Maria, three months is really not a long time for healing an inflamed bladder. This process can take up to three years, according to a Harvard study I once read. Be sure you are eating enough high quality protein like chicken, eggs, turkey and even fish, with any sodium/salt carefully rinsed off. I never imagined I would be able to eat nuts or ice cream again and I recently spent a couple of days binging on peanut butter and a pint of ice cream which I rarely eat, and except for a faint tingling sensation, these foods which might've landed me in the ER some months ago did not cause any lasting discomfort at all. Lu-T I did try a TENS machine from Omicron and I don't think it did much for me, but maybe I thought I felt better for a couple of minutes after use. My saviours for mild tingling sensations I occasionally experience have been d-mannose powder and .50mg Xanax as needed. Trust that you will eventually come through this. It is extremely upsetting to believe you will never again be able to eat what you want and might be in pain forever. The far greater likelihood is...you simply need time to heal and you will come out of this just fine!

    • profile image

      Lu-T 4 months ago

      Can I take a Multi Vitamin everyday? And is it ok to fry food? Thank You!

    • profile image

      Lu-T 4 months ago

      Maria.. I had an infection 9 weeks ago and was treated with Macrobid and had a terrible reaction to it. And was told by the doctor that the infection was probably gone. From then on I had bladder pain and pelvic and urethra and back pain. Right now I'm feeling better as far as the bladder pain but not 100%. Pelvic pain on right side has calmed down but not gone. Back pain is better but not 100%. I'm taking supplements that are suggested on here for about 3 1/2 weeks. Not sure if its them helping me or the bladder starting to heal. I firmly believe that my reaction to Macrobid caused this. Some people can tolerate Macrobid and others cannot. I looked up some reviews on this medication and some are scary. Hope you feel better soon!

    • Sherry Hewins profile image
      Author

      Sherry Hewins 4 months ago from Sierra Foothills, CA

      Maria, I would say three months is quite common, and not really a long time when it comes to this condition. The bladder is slow to heal. I know it's a long time to you, when your are going through it.

      You say you are managing the frequency and urgency. That would be progress for a lot of people. Are you practicing relaxing the pelvic floor muscles? That is really important.

      I had symptoms that came and went for a long time, and I didn't worry too much about them until they got really bad and didn't go away.

      I went to the doctor, and he just assumed it was a bladder infection and gave me antibiotics without testing.

      I came back a few weeks later, having finished the antibiotics, but the symptoms were no better. At that time, he did a urinalysis and said there were no bacteria. So, I don't really know if I had an infection either. I'd had them in the past, and that's common in people who have these symptoms. Repeated infections weaken the lining of the bladder.

      Have you been to the doctor about this? There are medicines you can take to help with the symptoms. Some people have good results from antihistamines or antidepressants. Sometimes physical therapy is recommended. If you haven't seen a urologist yet, perhaps you should.

      Here is some further reading for you.

      https://www.ichelp.org/diagnosis-treatment/treatme...

    • profile image

      Maria 4 months ago

      Just checking in again. Its been nearly 3 months since my initial flare-up which might or might not have been caused by a UTI. (I never left a urine sample and just self-treated with Macrobid which was a big mistake since now I dont know why this whole bladder problem started. Could have been a UTI, or there could have been no bacteria and just a bad reaction to Macrobid. I'll never know since I never left a sample!). Anyway, right now I"m learning to manage the frequency and urgency symptoms but they are still there even after going on a strict diet of mainly veggies, brown rice, chicken no fruit and just water to drink for the last 3 months. I'll have a few days where my symptoms recede, but the urgency seems to return often for no reason I can see (meaning I havent added a new food or supplement and still experiencing irritation/flares). So now its just a waiting game and I wonder if I am truly on the road to healing or not. Sherry --does this sound within the 'normal' realm of healing in your experience? I just feel like nearly 3 months is a long time and I should be seeing more progress at this point. Also, was wondering how your bladder symptoms started to begin with-- did you actually have a UTI starting out or did the irritation come out of nowhere? ( From your story it sounds like you never had a UTI but just wanted to clarify, since my bladder irritation seems to have come out of nowhere as well)

    • profile image

      Katie 4 months ago

      Yes,i am experiencing the same thing residual imflammation after uti for almost a month now

    • profile image

      Lu-T 4 months ago

      Melisa Are you having pelvic pain? My pelvic pain is mild but kind of a pinching feeling. It seems all these symptoms are the same. Hopefully its just time that will heal us!

    • profile image

      Lu-T 4 months ago

      Thank You Sherry and Melisa.. My Hip pain and Back pain is the worse of all this.

    • Sherry Hewins profile image
      Author

      Sherry Hewins 4 months ago from Sierra Foothills, CA

      Lu-T - It is definitely a gradual process.

    • profile image

      Lu-T 4 months ago

      Sorry for more questions.. Do the symptoms go gradually or all at once? Do you start to feel better even though symptoms are still there? Thanks for any feedback!

    • profile image

      Melisa 4 months ago

      Yes!! Lu-T! I have incredible hip pain!

    • profile image

      Lu-T 4 months ago

      Does anyone have hip pain or side pain? Has anyone had any success with doctors? Thanks

    • profile image

      Lu-T 4 months ago

      Melisa Glad your feeling better.. hopefully you will be completely well soon!

    • profile image

      Melisa 4 months ago

      Hi Lu-T,

      I'm doing pretty good, as far as pain goes. The antihistamine prescribed to me helped greatly, and I'm continuing with the tips Sherry suggested. The AZO bladder pain OTC med definitely helps with the urgency! I'm still kind of annoyed that the urologist was so quick to call it IC.. they don't seem familiar with bladder irritation after an infection. I'm only 24, so I'm hoping this irritation goes away.. I'm frustrated with my doctor but I'm happy I'm feeling a little better!

    • profile image

      Lu-T 4 months ago

      I was curious if anyone ever used a Tens Machine to help with their pain?

    • profile image

      Lu-T 4 months ago

      Melisa.. How are you doing? I am in the same situation. Diagnosed with an infection from the middle of August. Pain hasn't gone away. Still have back and pelvic pain. I am keeping an acid free diet and on bladder supplements similar to what's suggested on here. In my opinion it seems to be a waiting game and hopefully it will happen. I wish you well and good health! Louise

    • profile image

      Melisa 4 months ago

      Hi all, just wanted you update everyone on my experience. I had an appointment with a urologist on Tuesday. She was very caring and actually very knowledgeable but seemed to think I was a textbook case of IC.. I asked if my bac infection back in May could've caused it, or if it could be residual inflammation and she said maybe but basically said this is IC.. which frustrated me.. she did prescribe me an antihistamine called atatrix and I felt relief immediately. I also started taking azo bladder pain relief and that also helps.. I'm very torn.. while I'm glad the meds help, I'm also bummed the urologist was so fast to diagnose me with IC..

    • profile image

      Lu-T 4 months ago

      cw/me Thanks again! It seems things are starting to calm down for me. Still having some soreness and mild back pain. But nothing like I started out with. I'm watching my diet and taking d'mannose and bladder q (which has a lot of what is suggested on this site in it) I'm actually sleeping better also, which I did not do for awhile. Like you this all started out with taking Macrobid and having a bad reaction to it. Your help is very much appreciated!

    • profile image

      cw/me 4 months ago

      Yes Lu-T, back pain is very normal with bladder inflammation because the same nerves that bring pain sensation to your bladder also affect the spine. I have bad back issues in the first place, and once I was well enough after the UTI that initially damaged my bladder, I went to a spine surgeon who confirmed the reason I was in more pain was probably from the bladder inflammation as there is a connection in the nerve pathways. I also saw a urogynocologist, not a urologist. The urogynocologist was frankly not helpful, nor was my primary physician. I was stunned at how little experience either of them had with lingering bladder inflammation. I simply did my own exhaustive research and cured myself. I wouldn't suggest anyone else do this unless they at least first speak to a primary or specialist and rule out the less likely chances of a more serious condition. The urogyno merely tested my bladder capacity, assessed my pelvic floor muscles, which by the way she said were weak, and it is tense pelvic floor muscles that can often contribute to the problem of bladder pain. She gave me a script to see a physical therapist which I didn't use as I thought it had nothing whatsoever to do with my problem. I recommend you continue to get routine urine cultures about once a month as long as you continue to have symptoms. Sometimes it is impossible to distinguish between an infection and irritation, and if an infection exists, that should be treated right away. But antibiotics may do worse damage, so I would suggest first consulting a doctor as I did to let them know if antibiotics is worsening symptoms, then discontinue them and begin several doses of d-mannose and a gallon of water a day when experiencing a flareup. The body has an amazing capacity to heal itself, though when it comes to bladders, it can take a fairly long time, so hang in there!

    • profile image

      Lu-T 4 months ago

      cw/me Thank you so much for your advise...this has been going on for 6 weeks now.. Lately its a little better. I am taking d mannose also. And just started on Bladder Q.The macrobid made me very sick while taking it. I am also having some back pain with all this. I was wondering if you experienced any other symptoms while going through this. Did you see a urologist? I'm not ready to go that route yet. Thanks Again!

    • profile image

      cw/me 5 months ago

      Lu-T- yes it is Very possible that Macrobid inflamed your bladder and is causing you more pain. This has been my experience twice with two different UTIs and it is no coincidence because each time after two or three days on it, severe bladder pain worse than the UTI started to kick in. The second time, I took only 3 doses, told my dr. it inflamed my bladder and I then stuck to d-mannose powder, taking 1 tsp twice a day for a couple weeks as well as Natrol glucosamine, chondroitin and MSM complex. The 2nd time I was in pain about a week or two, but the first incident I suffered for eight or nine months. Everyone is going to be different. Give the supplements a couple of months. I now only take glucosamine about 1x a day. I personally believe the d-mannose supplement I use has given great relief. I take it whenever I feel a tingly feeling that is an alert sign of bladder irritation, as well as 1 tsp a day as a maintenance dose. Bladders take a while to heal and I hardly ever feel bothered anymore, but it flares up slightly on occasion, and I've yet to try spicy foods after 15 months from the first UTI that caused the inflammation. Good luck, and get well soon!

    • profile image

      Lu-T 5 months ago

      Hi Can someone tell me what Brand of Glucosamine Chondroitin their using and How many milligrams.? And if you have had any success. Thank You!

    • Sherry Hewins profile image
      Author

      Sherry Hewins 5 months ago from Sierra Foothills, CA

      Lu-T - It is common to have some lingering irritation after an infection. That usually resolves on its own, but you can help the process by not eating irritating foods,

    • profile image

      Lu-T 5 months ago

      Thank You for your advice. I had a bladder infection 6 weeks ago and was put om Macrobid ,I was only able to finish 5 full days of the medication because I got very sick from it. The doctor said 5 days should be enough and I no longer have an infection. But I still have pain in the bladder area and pelvic and lower back area. Could this medication have caused my bladder inflammation? Can antibiotics damage the bladder? Will my bladder heal eventually?

    • profile image

      Sarah 5 months ago

      Hi beachk1,

      If you are still checking this site--the next time I peed I tested my urine again and the level of leukocytes had gone way down, so I didn't end up contacting the doctor about it. I kept testing and the level of leukocytes would fluctuate somewhat with my diet so I figured it was just weird lingering irritation.

      I did end up talking with my OB/GYN about the ongoing problem (I don't have any pain! Just sliiight constant urgency) when I was in for a checkup, and she just told me that I should come back to the doctor if it started to negatively affect my life but wasn't very concerned...

      At this point it's been about 5 months of this mild urgency for me. I'm not perfect with the diet but do my best to stick to mild foods and water and I think it's getting better, but it still fluctuates a bit. In fact I thought I might be almost better since it's been so mild over the past few days but tonight it feels worse again. I agree that trying not to tense your muscles makes a huge difference! Anyway, I really miss coffee. Best of luck to you and everyone else going through this.

    • Sherry Hewins profile image
      Author

      Sherry Hewins 5 months ago from Sierra Foothills, CA

      Wow Liz, I'm glad you went to the doctor. Did he say you had a bladder infection? I've never heard of such bad bleeding from that. Did he do a vaginal exam? Do you have a primary care doctor? Stay on top of this one.

    • profile image

      Liz 5 months ago

      I appreciate your article and will try dietary changes. I'm quite frustrated in trying to diagnose my specific symptoms. I've had light bouts of uti symptoms but fairly consistent urgency with no other symptoms for about a year. I'm perimenopausal at 58. When I've had light uti symptoms I've had one of those otc uti symptom-relief tablets n it's alleviated the symptoms entirely. Having had no symptoms, other than urgency, yesterday at noon at work I had urgency, then frequency with little output, then abdominal pressure. As I went to urinate frequently, I noticed first pink in the toilet, then on the to n then clots in the toilet. I felt alot of pressure but not pain, maybe a little soreness upon urinating. The bleeding continued so I went to local clinic ater work. I provided a urine sample that was totally red. The male doctor looked at the primary analysis n said I had a bad infection n prescribed antibiotics. I left there n had no symptoms except mild frequency n no blood at all. I called back today because I have concerns with the antibiotic he prescribed (cipro). I have some abdominal.oreddure today but no other symptoms. Any ideas about how to proceed, what to watch for, would be appreciated.

    • Sherry Hewins profile image
      Author

      Sherry Hewins 5 months ago from Sierra Foothills, CA

      Paula, you might try just reducing the Vitamin C before you quit all the vitamins. It is really the most irritating.

    • profile image

      Paula 5 months ago

      What a great article! I had exactly the same problem years ago: 100% sure I have a bladder infection I was said there is nothing like that. Via my research I found out it is irritation of bladder through tons of juice I drank. I stopped and started to drink water instead and symptoms were gone. I didn't even had to give up a cup or two of coffee/day. The rule don't eat it if you wouldn't put it on open wound will stay with me forever :))

      I got to your article here because I started to take, due to my perimenopause symptoms, a lots of vitamins and started to buy in Mariano's those pure juices, they are squeezing every day, freshly, to enhance it. And the symptoms are back: it is actually only the one - irritation after urination. So while I think I need those vitamins, because they are making my PM symptoms much much better, I am leaving juices out of it. Multivitamin package I am taking is having 500mg/vitamin C and also higher dosed of A and Bs. I read that all of those can trigger the irritation of bladder. So, if I won't improve after juice quitting, I will have to consider quit those vits as well.

      Thanks for all great tips brought by your great research :)))

    • profile image

      Jamie 5 months ago

      Thank you so much. Your advice reversed years of suffering that my doctor was unable to address (she wanted me to take meds, drink cranberry juice and do other things that didn't help at all).

      I am so grateful that you took the time to share your knowledge. THANK YOU! The hardest part was stopping coffee but I'm good now!

    • Sherry Hewins profile image
      Author

      Sherry Hewins 5 months ago from Sierra Foothills, CA

      Melissa, a flare can indeed last that long. In fact people with Interstitial Cystitis have to deal with it constantly. Four or five month does not sound unusual. There are people who have been coming back here to comment on their progress for months or years. I'm not trying to scare you, if you are getting better, that's a really good sign. As you progress in your healing, the symptoms get better, but it can take a long time to heal completely.

    • profile image

      Melisa 5 months ago

      Sherry,

      Thank you for your response. Your advice has been so helpful, and I'm so happy I stumbled across this post. I have been relaxing my pelvic muscles and have noticed a great difference. My pelvic floor used to be constantly clenched but I have "trained" myself to relax and a lot of pain has subsided.. my current flare has been going on for over a month with little relief.. my pain levels have def decreased from previous but that dull ache is still present. Can flares last that long? In June and July, I was having a week or two long of pain but then it would subside for a week and come back etc but now it seems here to stay, even with my diet change. Sherry, a question for you- how long would you say the healing process took for you? I found another's blog post who experienced similar things and said it took them about 4-5 months.

      Thank you!

    • Sherry Hewins profile image
      Author

      Sherry Hewins 5 months ago from Sierra Foothills, CA

      Hi Melissa, It is not uncommon to have bladder irritation after a bacterial infection. You are doing the right thing by changing your diet. I hope you are following my advice to relax your pelvic muscles too. New research is showing that to be important, and from my personal experience, I really think it helped. I hope you feel all better by the time your appointment comes. Wouldn't that be great!?

    • profile image

      Melisa 5 months ago

      Hi all,

      I have also been experincing these symptoms since June, and they said it was Ureaplasma, which is a bacteria. They treated it with antibiotics and my symptoms went away for about a week, they retested me and it's clear but I'm still in pain. I had two glasses of wine and I literally could feel it burning my bladder. I'm so anxious that it could be something serious, but I don't have any 'strange' symptoms. I pee often and have no pain when urinating but feel pain when I have to go--almost like pressure/burning in my ureathra/bladder. did others experience this? I stopped eating/drinking irritants, and it's def helped but I still feel almost a dull ache when I have to pee. I see the urologist in a month and am not looking forward to it.

    • profile image

      KH 5 months ago

      Thank you so much for the advice! I started having these symptoms this past may, but didn't know what it was, so I ignored it thinking it was nerves. Then at it progressed, my doctor said it was a UTI. And my symptoms were calm for a while but back in late July, they arose again and and just kept progressivly getting worse. I do not know if I have IC or blatter spasms because this is my first time ever dealing with this so everything all sounds the same to me. I've been getting no relief from medication for 3 months and it is draining me. I will definitely take your advice. I have a meeting with my urologist this week and I too am not so excited about the scope, especially after hearing the feed back from other people on it. Thank you so much for writing this page!!

    • profile image

      Jami 5 months ago

      Hi omg I'm so happy to read this bc at the moment I'm going through something like this I think . I went to a doctor and hospital and they said no uti but I can not stop peeing. And I have pains with my lower back and a pressure pain around my lady parts. But doesn't hurt when I pee. I'm going to try some of your ideas. Hopfully it helps thanks

    • profile image

      Kate 5 months ago

      I have read many articles about IC and this has been the most helpful. Thank you

    • profile image

      Donis Harmon 5 months ago

      I have have seen a Urologist.... have no infection.

      Myrbetriq 50mg x 4wks to calm the bladder with not much relief.

      Contrast CT Scan which was negative.

      I have been off of coffee and alcohol x 5days, but will now follow your recommended diet and have started Glucosamine/Chondroitin today...I have high hopes that all of this will help.

      I am scheduled to have a Cystoscope in 8 days.

      Let the healing hopefully begin!!

    • profile image

      Donis Harmon 5 months ago

      I have been having this problem for about 6 wks and am so happy to find this online....I will follow your advice, thank you so much.

    • Sherry Hewins profile image
      Author

      Sherry Hewins 5 months ago from Sierra Foothills, CA

      Peeing 40+times - I know exactly what you mean. What I can say to you is, reread this article from the beginning. If you are sitting on the toilet and trying to squeeze a few drops, you are clenching your pelvic floor muscles. That is making everything worse. It is very important to relax those muscles as much as possible. In fact, I would say that is just as important as avoiding acidic food.

    • Sherry Hewins profile image
      Author

      Sherry Hewins 5 months ago from Sierra Foothills, CA

      Erika - This isn't really about UTI's, and I have not tried the product you recommend, but I will leave the comment here as it may be useful to someone.

    • profile image

      Erika Keamy 6 months ago

      As a sufferer of UTIs in the past, I would strongly urge women sufferers to try a more natural remedy instead of immediately taking antibiotics. In my experience, antibiotics have caused symptoms (including urgency and that awful burning feeling) to linger for weeks, driving me crazy. I recently had an infection, happened to find Preferred Nutrition UTI drops at a natural food store, and took them (orally with water) for a total of 5 days. I felt 100% better in about 2 days, and within a week the infection was gone, as were all the symptoms. The UTI drops make the bladder wall slippery so that bacteria gets flushed out with the urine. They also have antiseptic and antibacterial properties, so they are a much more effective remedy than cranberry juice or even D-Mannose, which I have taken in the past, but found that it didn't help with a previous UTI.

      The UTI drops are not cheap ($50 for a bottle) and they aren't exactly tasty, but the results are pretty astonishing, and I no longer live in fear of getting a UTI and dealing with the aftermath. I will always keep a supply in my medicine cabinet.

      If you Google "Preferred Nutrition UTI Drops" you'll find reviews on Amazon, and a YouTube video by Dr. Gifford-Jones, explaining the healing properties of the treatment. It's definitely worth looking into if you're prone to UTI problems.

    • profile image

      Peeing 40+times a day,every min or two and the I have to sit for five mins to get one drop to come out 6 months ago

      I am having the issue I listed in title...Doc said blood in urimg been on Cipro today will be my third dose.I DO NOT FEEL BETTER NOT EVEN A TINY BIT!What could this be?I am a 39 yr old female

    • profile image

      kitty kare 6 months ago

      Thank you so much for the information. I too was taking cranberry thinking it would be good. And did not know about all the various foods that are a trigger.

      Recently I found out about castor oil packs which for me relieve the pain almost immediately. Whatever it does, it stops the urgency and pain. Google castor oil for UTIs and will be a ton of information.

    • profile image

      beachk1 6 months ago

      Hey Sarah,

      Did you get any response about the leukocytes? Your story sounds kind of similar to mine. Suddenly two UTIs (never had them before) almost back to back. The first one seemed pretty fine, got antibiotics (too many!!) but then another UTI about 3 weeks later (a different strain). The pain got increasingly worse when I started the antibiotics, and since February it hasn't gone away. I'm basically never without pain now, although it's significantly decreased since February, but sometimes it gets angry for seemingly no reason (food doesn't seem to affect me, unless it's so delayed or takes a certain amount so I can't tell), but I'll smell that odor and the pain will increase and the dip shows leukocytes but no nitrates as well. I take uva ursi, dmannose, drink a lot, etc, and after a day or so it calms back down (not sure if what I do affects it or not)... Did your doctor reply at all about the positive leukocytes but no nitrates?

    • Sherry Hewins profile image
      Author

      Sherry Hewins 6 months ago from Sierra Foothills, CA

      Michelle - Having pelvic surgery is traumatic. I think it is not uncommon to have bladder symptoms in the aftermath. Women who have tubal ligation or hysterectomy will often have such symptoms also. It is possible that your bladder was "nicked" during the procedure. Usually, that will go away as you heal.

      I know it's hard to tolerate right now, and all you can think of is how to make it feel better fast. I wish there was a magic pill I could give you to make it all better.

    • profile image

      Michelle Kukkuk 6 months ago

      Hi Sherry ,

      I just stumble upon your page after nights of searching want can be wrong.

      I had a laparoscopy to remove a cysct 2 weeks ago and ever since my operation my bladder is in trauma! The pain is excatly what you say and its like stabbing knifes that goes into my bladder. And its not a UTI ive been to the doctor and he confirmed not UTI and maybe its a bladder spasm and i must drink Uripas.. and that so does not work! Thank you for insight and help!! I will defenitly start with everything! I just hope this will go away soon.. people talking about months and im at week 2 and feel like im dying.. i had no problem before operation with my bladder had 1 UTI when i was in school thats it! Im 33 now! And after opertion its like this! Feel that the gynae made a mess with me!

    • Sherry Hewins profile image
      Author

      Sherry Hewins 6 months ago from Sierra Foothills, CA

      Carolina

      Yes, I'm sorry but Vitamin C is very irritating. Be sure to read your labels.

    • profile image

      Kim 6 months ago

      Hi - I last wrote 4 weeks ago while in total misery with the ongoing urgency and urethra pain. Thought I would give an update. I did call the urologist that morning as I was desperate for relief. The nurse said my symptoms sounded like I was passing a kidney stone. Given that my CT Scan results just a couple of weeks prior showed I had several stones, that made sense. She advised I take pain meds & drink lots of water. Ended up passing a stone the following morning. The bladder misery stopped immediately! Saw the urologist a week later and he ordered labs - blood draw and two 24 hour urine collections, a week apart - to find out why my body is producing so much calcium oxalate crystals. This may also explain why I have calcific tendonitis in both shoulder rotator cuffs and BPPV (Benign Paroximal Positional Vertigo) on occasion. Got the results yesterday. Turns out I have a genetic condition where my body doesn't produce enough citric acid to break down calcium - or some such complicated thing - which in turn causes my body to produce kidney stones & lots of small oxalate crystals (too small to be considered stones) that sit in my kidney's. Doc put me on a prescription only supplement, which will prevent further kidney stone development. He said simply eating more citrus wouldn't be nearly enough, so the supplement is vital. I still have a 3mm stone in the left kidney, so I know misery is in my future when it decides to pass. At least now I know what was causing all those horrible symptoms since the initial UTI in May. Glad I finally went back to the urologist and no invasive tests were required! Yes, my IBS has still been quite bad lately, but I'll take that any day over the bladder pain/horrible non-stop urgency.

      cw/me mentioned Xanax in a post. If it weren't for Xanax I wouldn't have gotten any sleep during that whole time. I took half a .50 mg tablet every night, which helped my body relax enough to sleep. Because Xanax puts me to sleep (which is why I have the prescrip in the 1st place - sleep issues), I can't take it during the day.

      Want to say thank you for having this site, it is so helpful knowing others are out there who understand what I have experienced. I appreciate all the advice and kind words and hope everyone who has posted finds relief very quickly!

    • profile image

      Carolina 6 months ago

      Thanks Sherry, that makes sense. I bought the supplements you used last night and am introducing them day by day. I did notice the glucosamine chondritin I bought contains vitamin C... should I stay away from that? Thank you so much for your help!

    • Sherry Hewins profile image
      Author

      Sherry Hewins 6 months ago from Sierra Foothills, CA

      Carolina, I think that is a common thing for the symptoms to come and go. If your bladder is already irritated it reacts more readily to foods. If your bladder is healthy, it can handle any food. Also, food is not the only factor. Tense muscles and overstimulated nerves also play a part.

    • profile image

      Carolina 6 months ago

      Also, has anyone tried Accupuncture? I read in some place so that it was helpful in healing the bladder

    • profile image

      Carolina 6 months ago

      Thank you so much for this article! It has truly given me hope! I tested positive for a bacteria called Ureaplasma U. back in May, which is a controversial and tricky bacteria. It basically causes the symptoms of a UTI and the bacteria lives and grows in the bladder/urinary tract. After two rounds of antibiotics, I cleared the bacteria but my symptoms were still present. I was convinced that it was still there, but my doctor did every test imaginable and nope all clear. She never mentioned that irritation after an infection was a thing! I scheduled an appointment to see the urologist in a few weeks but in the meantime I will try you're suggestions. The most frustrating part of all this is that my symptom starts come and go. Two weeks symptom free, and then it will come back. I was eating the same during the time the symptoms were gone so I and curious as to why, but I definitely know that coffee and win every irritates my bladder like no other. Did anyone else have relief for a few weeks and then symptoms return? It's like I can tell that my bladder is irritated, I don't know how to explain it.

    • Sherry Hewins profile image
      Author

      Sherry Hewins 6 months ago from Sierra Foothills, CA

      Ashley - I have had a couple of flares since I wrote this article, but none as bad as what I had before. It has been a couple of years since I had any flares at all, and I eat whatever I want. So, I consider myself completely well.

      When I was having my major problems I was going through menopause, so perhaps there is a hormonal component to it. People often ask how long it took to get better, and I wish I had taken notes at the time instead of having to rely on my memory.

      As for adding things back, I would start out adding one new food a week at the beginning. Better to start out cautiously. Once you've added a few items without having setbacks, you could increase to every three days.

      Here's a pretty good list of foods, I would start out eating only from the "safe" list, and cautiously adding things from the "try it" list. http://www.ic-diet.com/pdf/What-Can-I-Eat.pdf

      Once you feel like you're well on your way to recovery, you could relax a little about the artificial flavors and preservatives. I like to keep them to a minimum anyway.

    • profile image

      Ashley 6 months ago

      Hi sherry, I've looked at this page multiple times over the last year and a half or so. I've had these episodes as you've had but they would go away after 4 weeks or so without me doing anything. But then pop up again. I recently went to a urogynecologst who found inflammation in my bladder but she hesitated to call it IC. I'm now trying to do the diet to see what bothers it, if anything. I'm wondering if your flares ever returned? I'm only 29 and worried this will be a lifelong issue. Also, how did you reintroduce foods, especially ones like preservatives or artificial flavors. Did you use the three day approach to introduce those foods back in? Thanks so much, this page has been so informative and comforting and gives me a little hope that maybe this won't be a lifelong thing for me. I've had it off and on the last yeR and a half or so and been pregnant and had a child during that time.

    • profile image

      Erika Keamy 6 months ago

      As a past UTI sufferer, I just wanted to share a helpful treatment option for UTIs I just learned about that apparently has been used in Europe, and came onto the Canadian market in 2015. It's called Preferred Nutrition UTI Drops. It is an all natural alternative to antibiotics and is very effective, perhaps even more effective than D-Mannose, as it acts as an antiseptic to bacteria. Hope it gives to relief to those of you suffering..

    • profile image

      Sarah 6 months ago

      Hi again, 8 weeks ago I posted that I was going on the low acid diet after a month of slight but persistent urgency and frequency symptoms that started after contracting 2 UTIs in a row this spring. While changing my diet did seem like it was helping for the first few weeks and my symptoms became very mild, I fell off the diet wagon while doing a ton of traveling this past month and the symptoms came back fullll force (no pain, just the mild constant urgency), so even though I was taking Prelief before eating and drinking all the time, it didn't seem to work. I've been taking glucosamine, calcium citrate and probiotics for about a month and recently started taking d-mannose pills and corn silk as well (obviously I'm pretty much trying anything and hoping something works at this point haha). I got at-home UTI test strips that show I've got a lot of leukocytes (but no nitrites) so I'll be contacting my doctor again tomorrow to ask whether that could mean I have some type of infection again, even though she figured the symptoms were just lingering irritation before... ugh. Anyway, just wanted to reiterate your point about changing your diet back to normal too soon being a big mistake :( even with the Prelief pills. I think I've definitely set myself back, although I'm still not sure exactly how long I should stick to the diet for. Thanks again for all the insight, hoping to be better soon now that I'm back on track with the diet. Best of luck to everyone else currently on this road trying to figure out which foods are okay!

    • Sherry Hewins profile image
      Author

      Sherry Hewins 6 months ago from Sierra Foothills, CA

      No worries Maria. I hope you're feeling better.

    • profile image

      MARIA 6 months ago

      sorry, Sherry, I mispelled your name in that last post. :)

    • profile image

      Maria 6 months ago

      cw/me -- Thank you for your helpful advice. I have eliminated peanut butter so now I'm down to very few foods I can eat ( I tried green peas yesterday but that caused me to flare), so Im just going to make sure I get plenty of protein and slowly introduce other foods over the next few weeks. My diet now includes chicken, eggs and whole wheat sprouted bread and brown rice. Sheri and others have recommended veggies as well but I'm a little scared to try them at the moment due to the flare up after the plain green peas last night. I have also started 400 mg of Tagamet once a day which my urogynecologist wants me to try for a month. She says it works in 40% of patients with bladder issues. I'm not really a fan of medication so I'm in two minds about this, but I guess Ill try and see if it goes well. Anyone else tried it?

      Incidentally I'm also taking 2 tsp per day of D-Manose plus the other supplements Sheri has listed above.

    • profile image

      Maria 6 months ago

      Thanks for the advice Sheri. Ive started to vary my diet a bit more. The peanut butter may have actually been irritating me, who knows? Anyway I had another question for you. I know you said you suffered for months because you didnt give up some acidic things right away like coffee, etc. But once you DID start eating the right foods, how long did it take you to recover? (I ask because I personally have eliminated all acidic/trigger foods a couple weeks ago and still don't feel anywhere near normal with flares that still happen every other day or so for some unknown reason. Its only been a few weeks but I need to start seeing a light at the end of this tunnel so hearing how long it took you to feel good again would really help). Thank you again.

    • profile image

      cw/me 6 months ago

      Maria, the concept of "less irritating foods" should not be dictated by our assumptions, but rather, the reactions from our bladder. Foods that are absolutely harmless for one person may create tremendous pain and suffering in another.

      I discovered that nuts of any kind can create a burning effect in the bladder which might be obvious immediately or take a few weeks to accumulate in the bladder lining before causing trouble. For the time being, I suggest eliminating peanut and other nut butters and see how you are doing in 1-2 weeks. If feeling better, try going back on miniscule amounts such as a 1tsp once a day for several weeks, and gradually increase from there. Don't add any other food, supplement, drug or beverage during this testing phase to better pinpoint the cause of your symptoms.

      I recently learned that my last UTI, which luckily was very small, cleared after about 4 doses of Macrobid, and then I was forced to quit due to dramatic increase in urethral burning. As soon as I quit I began taking d-mannose powder in a dose of 1sp twice a day, which I am taking am and pm. So far I am doing much better than I was, but as I learned I have high cortisol levels, which can by a process of a chain reaction eventually make one susceptible to infections like this, I needed to get rid of all forms of sugar and NutraSweet and switch to Stevia. Unfortunately, even its absolutely purest form in tiny amounts it causes bladder discomfort. I wanted to bring this up because even things that sound absolutely harmless in the smallest doses may still be substances your bladder hates.

      You should treat every food you ingest as a sort of a science experiment and it soon will get a lot easier to determine which food, supplements and beverages agree with you and which do not. I strongly disagree with advice I've seen on IC sites that say if you do okay with a food one day, try increasing amounts the following. Wrong! That can spell trouble for your body because certain chemicals may cause a reaction in your bladder right away, and others could take days or weeks to build up. So you want to always take the least amount of a food that you can and see how you react after 1 or 2 weeks, and slowly increase from there. I hope this is somewhat helpful. It is a very long and tedious process but ultimately worth the effort. Best of luck to you getting through this as painlessly as possible.

    working