Finding Relief from Interstitial Cystitis

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Where do I begin? My interstitial cystitis came out of nowhere. I had never had a bladder or kidney infection in my life, and no problems with pain or urinary frequency/urgency. I was in my early thirties when suddenly my symptoms began.

When I started having interstitial cystitis (IC) symptoms, my two children were already in school. One was going into middle school and one was going into high school. I was working as a driver of a school bus. I started feeling urinary urgency so badly one day that I thought I was going to pull my hair out. I would urinate with no relief from the feeling of urgency, going every two to three minutes! I cried, not understanding what was happening to me.

I tried drinking nothing but water and I was relieved when after a few days it seemed to ease. Little did I know that just a week or so later it would come back with a vengeance, even worse than before. I just happened to be in the truck with my husband (he drives a tractor trailer) and we were heading home when it hit. I was incredibly uncomfortable and I remember that day as clearly as any day in my life. I decided I needed to seek medical help.

Getting a Diagnosis

The next morning, I called a urologist and made an appointment. When I finally saw the doctor (crying like a blubbering baby) he examined me and asked if anything big had changed in my life. The only thing that had changed was that I had quit smoking, which I had done since I was 13. He joked and said that maybe I should start smoking again. I was not amused.

He then did some sort of ultrasound, and said that he knew what was wrong with me. I got so excited and thought that now that we knew what was wrong, it could be fixed. However, the doctor explained that it wasn’t going to be simple. I needed to have more tests to confirm, but he thought that I had interstitial cystitis. I had never heard of this disease before. The doctor explained that there was no cure. He said that he would try to help me be more comfortable using whatever treatments he could.

We started with a bladder instillation. This was a cocktail of medications instilled into my bladder through a catheter. This was the first time I had ever been catheterized. I laid on the table , and after a little bit started to feel some relief, but little did I know at the time that it wouldn’t last long.

I had all the tests, and sure enough I had “typical” IC so we begin with a hydrodistention. This procedure helps establish the diagnosis of IC, and sometimes treats the symptoms as well. Fluid is instilled into the bladder through the urethra and the bladder walls are stretched. A small scope with a camera is put into the bladder through the urethra and the bladder walls can be examined for changes that indicate IC.

Trying Different Treatments

After this, I had bladder instillations every day in my urologist’s office. This was difficult because I was still trying to work, and I also had to take care of my family. After a while, the instillations went from every day to three times a week, then down to twice a week. After a couple months of this, I felt like I had no life, and still had terrible pain. I was so miserable and it affected everyone around me. I just wanted to go to sleep and never wake up again. I had no quality of life, nor did my family.

One day, I realized that the instillations were not helping, so I decided not to do them anymore. My doctor agreed and we started different medications. Every one was a process of trial and error, to see what worked. It took us close to a year to get the right medications for me to be able to function so I could continue working, I tried three instillations of DMSO, which didn’t work at all and were terrible. Eventually I ended up taking a lot of different medications: Elmiron (a medication specifically to treat IC),  Detrol LA (for urinary frequency, which I later changed to Myrbetriq), and Pepcid. At bedtime I take Xanax, amitrityline, and Benadryl. I also take Prelief every time I eat. When I am having a flare up I also add Detrol and neurontin.

Giving up Our Dreams of Another Child

During this time, my husband and I were actively trying to conceive, and had been for a few years (my children were with my first husband). After being diagnosed with IC my urologist was adamant that we give up on that altogether, but I wasn’t willing to do that. I did see a gynecologist and after a few months, changed my mind about trying to conceive. I had been having extremely heavy periods and got an infection with each period. I decided to get a NovaSure endometrial ablation, and had my tubes tied. I was very upset afterwards because this took away my husband’s only chance of ever becoming a father, but for my health it was the best decision I ever made. I stopped getting infections and basically have no periods anymore, just very occasional spotting.

Although we were no longer trying to conceive, IC took a terrible toll on our sex life. We had been fairly active–after all, I had been trying to get pregnant and had only been married a few years. But with IC, when I have sex I am in incredible pain afterwards, sometimes for more than a week. How is it that something so natural can cause so much pain! In a way I know I am lucky, because I am ok to have sex, but have the pain afterwards. I know that a lot of people with IC can’t even have sex at all because it is too painful. The only thing that relieves my pain after sex is antibiotics, which is very odd, because I’ve been tested for infections after sex several times and have never had an infection.

This past year. my urologist retired, and it broke my heart. I have tears in my eyes even now as I type this. I loved him for taking such good care of me, especially since I’ve read so many horror stories of others who weren’t believed, and were told it was all in their heads. He was so good when I heard of some new treatment or medication to try. He wouldn’t hesitate to let me try to see if it was something that would help me. Luckily my new urologist seems okay so far. I told him right away that I was very afraid that if I didn’t continue to get proper treatment, I wouldn’t be able to live day to day and function.

Moving Forward

As I write this, I’m sitting here with a trial interstim device. This device, if it works, will be implanted in my lower back and stimulates the nerves that control bowel and bladder function ( It can help relieve symptoms of urinary frequency and urgency. I received this on June 23th (my 15th wedding anniversary). I’m playing the waiting game with my bladder to see if this is what comes next for me. If it works, I will get a permanent implant, and I hope that I will be able to reduce some of the medications I am on. If it doesn’t, I will just continue on with the mountain of medications I take daily to live as close to “normally” as I can.

Treating my interstitial cystitis has constantly required me to try new things to see what works for my body. Every new treatment is trial and error, because there is nothing that really works well for all IC patients. I have been lucky so far to have been able to get some control over my IC symptoms, with the help of my doctor. Living with IC is a constant struggle to gain the best quality of life I can have.


  1. Thank you for sharing your experience with IC. I began to have what I believe to be a minor type case of IC a year ago with the frequent urination day and night. First I thought I was having a couple of UTI’s so when they did not go away I visited my doctor’s office. They did the typical dipstick test and said I had hematuria. This put me into immediate panic as I thought the worst. So they gave me antibiotics hoping it would clear up; it did not. I redid the same dipstick test a few weeks later with even more bleeding. Although the bleeding was microscopic they (and myself, of course) were still very concerned and I was sent to a urogynecologist to examine further. I gave them my symptoms and asked if it could be due to IC. The doctor said it might be, but to go to the urogynecologist for a better diagnosis. I thought it would be a fairly simple pelvic exam. To my horror and pain the urogyn wanted to do a clean urine test. This involved a quick cathetertization which hurt like no other pain I’ve had before. I even screamed out. Then she (the urogyn) told me that my urethra is very narrow. Wow. No joke. I read that that happens mostly due to injury & I think I got injured when they cathetrtized me during childbirth decades past. Test came back again with more hematuria. I decided that after this I will not be subjected to another internal exam from the urogynecologist as I did not want to suffer more pain and anguish. To which the urogynecologist said that I could do it while sedated in the OR. I read about complications & decided not to do it. I continued reading all that I could about IC, and I am still very much convinced that I have IC. It is not as terrible as what others experience, but I do have similar symptoms especially when ingesting anything acidic. For instance, if I drink even one small glass of wine (white or red doesn’t matter which) I get a weird feeling in my bladder. It feels uncomfortable like it’s burning, irritated. Then my bladder needs to be emptied asap. I thought that this was a normal feeling until I happened to ask my husband and my son if they ever feel this way. They said ‘no’. So it’s just myself and that’s why I am sure it’s IC. I do wish doctors would just be honest and tell patients that there is a chance it’s IC they’ve go rather than subject them to invasive, painful tests that could result in complications and which may not even be necessary. I think their decisions oftentimes may have to do with the profit from such tests.

  2. Thank you so much for sharing your story. Our experiences are incredibly similar, it’s nice to hear that someone else has so much of the same experience. Although, I am sorry anyone has to experience this! It’s been a few years since this was published. I hope you have continued to have progress in managing your IC. I just had an ablation, and that’s what brought me to your article. I’m hoping for a happy result. Right now I feel like I’m having a severe IC flare, but I’m just a few hours post procedure.

  3. I’m glad you mentioned that feeling the need to urinate with no relief from the feeling of urgency afterwards is a symptom of interstitial cystitis. My daughter is noticing she feels frequently the need to use the restroom and tells me it’s painful when she does. I’ll have to find a women’s health center in our area that can consult with her and treat her possible interstitial cystitis before it becomes painful and serious. Thank you.

  4. IC could be autoimmune related. Be sure to have inflammation labs done to identify and possibility of autoimmune disease…they are commonly related. Diet is significant for anyone with any autoimmune disorder! Consult with a physician who incorporates homeopathic/diet/vitamin into health and healing.

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