Living with Interstitial Cystitis

I am a 30-year-old wife and Mom of 2. My IC first started around the time I got pregnant with my first child. It wasn’t until 4 years later (after my second child was born) that I was diagnosed. I though it was just ovarian cysts and recurrent bacterial vaginal infections. Finally my GYN did a laparoscopy to check for endometriosis and only found some small ovarian cysts. I was really frustrated at this time. I though I was crazy and I think my husband did too. My pelvic pain radiated to my low back and I compared the pain to early labor. I would have urgency, but my stomach would hurt while and after I urinated, but I still felt like I had to go. It hurt to have sex and it was starting to affect my marriage. I just wanted to sit and do nothing. I am a very active person with 2 kids and a LIFE! I refused to let this ruin me.

I went back to the doctor and insisted that something was wrong. My GYN suggested that I see a urologist that I might have IC. I am a medical assistant and immediately started to research IC When I read the symptoms it was like turning on a light switch. I didn’t feel crazy anymore. I had a name for my problem…if it were only that simple.

The first urologist I saw diagnosed my by doing a cystoscopy w/ hydrodistention under anesthesia (only do it this way! too painful in office). Then I was started on Elmeron, which I took for six months with no relief. I tried numerous other drugs such as Detrol, Ditropan, Elavil, etc. I could not tolerate the side effects. I went through numerous painful instillations of DMSO, which helped for a short time, but it was no way to live. I am a very positive, happy person who was getting discouraged and my spirit was getting crushed. I was in pain, which seemed to go in cycles. Worse with every period and dependent on pain medication (tramadol during the day and Vicodin at night).

I found a new doctor that I love and we decided to try something new. I elected to go through with a sacral nerve stimulator (InterStim) to be inserted in my back/buttock, which changes the nerve impulses. It was painful process to go through, but worth it in the long run. I now sleep through the night (I used to wake at least 2-8 times per night to void). It isn’t perfect for my pain, but at least I can make it through the grocery store without going to the bathroom. I still have painful flare-ups and get down at times, but I refuse to let it ruin my life.

I also watch my diet. I know if I eat things that trigger me, I am going to pay for it. You have to make diet modifications or you’re really not doing everything in your power to prevent flare-ups. I know I can’t eat tomatoes or spicy foods and chocolate bothers me, but I indulge on occasion. I hate that I can’t eat the things I like, but it’s like being a diabetic…you have to restrict things because it’s the best choice to keep your body healthy. It sucks, but you have to do it. My husband tells me that he prays daily that I would be free of my pain. I pray and thank God that he helps me cope and keep a positive outlook. I am scheduled for another hydrodistention and dilation next week. (Currently having another bad flare-up) Hopefully I’ll be feeling better soon. Keep the faith. Sorry for anyone who suffers with the illness.