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.
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 (http://www.ichelp.org/diagnosis-treatment/treatments/neuromodulation/). 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.