Help My Hurt

Company’s calling - living with the pain of interstitial cystitis

by Marijke Durning, RN on January 21st, 2008

This week, we welcome Sandy Robinson, a wife and mother, from Pennsylvania. She talks to us about her life with interstitial cystitis, which is her third chronic illness; she also has fibromyalgia and chronic fatigue syndrome. She has her own website at http://www.fightingfatigue.org, and forum, http://www.fightingfatigue.org, for people with CFS, fibromyalgia and interstitial cystitis.

Can you tell me about when you first started experiencing the pain and what kind of pain it was?

I first started experiencing severe symptoms of Interstitial Cystitis four years ago. I also have Chronic Fatigue Syndrome and Fibromyalgia and at the time I was having a flare from both of those illnesses that had me bedridden.

I was having trouble breathing and I was having chest pains (later found out it was related to the CFS & FM) and my doctor ordered a cardiac stress test. My IC symptoms started that night after I completed the stress test. I had severe pain in my lower abdomen and pelvic region that was so bad I could hardly walk. I thought that I was just getting another bladder or UTI because I have had at least two of these a year since I was a pre-teen. The symptoms didn’t go away and I continued to get worse. I experienced urinary frequency every 10 - 15 minutes, pain and pressure that were so severe I would lay in the fetal position most of the time. Each trip to the bathroom was as though someone was taking a razor to my vaginal area. The urine burned so bad coming out I would cry. I couldn’t walk for more than a few feet and the only way I could go shopping or get groceries was to ride in an electrical cart.

Did you seek help right away? If so, what type of help and, if not, why not?I immediately called my family doctor for an appointment, thinking at first that it was just another infection. As the days went on I knew there was something else wrong. The pain had spread to my left side and it was very bad. I was also experiencing vaginal bleeding. My family doctor checked for a UTI or bladder infection and was surprised when the results came back negative. I was then sent for a CAT scan of my kidneys and that test came back okay. She still treated me with antibiotics and thought maybe the tests were just not registering correctly. I took the required antibiotics but still the symptoms were just as severe.

After several trips to the ER and my family doctor, I had a family member who had IC Disease. She said my symptoms sounded exactly like hers and she gave me the name of a local urologist. I made an appointment, but I had to wait two months before they could see me. The urologist diagnosed me with Interstitial Cystitis.

What did the doctors tell you when you did seek help?

She thought I had an infection that was not being detected by antibiotics. The urologist immediately suspected Interstitial Cystitis. He scheduled me for an outpatient surgery called a cystoscopy where, under anesthesia, the urologist stretches the bladder with water to see if hemorrhages appear on the bladder wall. With the other symptoms plus evidence of these “Hunner’s ulcers”, that is how it was diagnosed.

What have you tried to help you with your pain?

The pain was so severe in the beginning that I could not find any relief. The urologist would not prescribe me anything stronger than Ultram and that was worthless. It didn’t seem to matter how severe I told him the pain was he wouldn’t give me anything stronger.

One thing that I did do later that helped short-term was to take warm showers, letting the water run over my lower abdomen and my lower back. That helped for a few hours.

I had to go on painkillers because my Fibromyalgia and CFS pain was so bad throughout the rest of my body. My CFS/FM doctor put me on Vicodin and Darvocet and that combination did help to dull the IC pain but it was still pretty bad.

Can you tell me a bit about what worked and what didn’t?

When my illness first began, nothing helped. I couldn’t even drink purified water without having severe bladder pain. I used to drink a lot of diet soda and I had to completely give that up. Once I was off soda for a while I was able to drink water without any problems. Heating pads and warm showers helped. Vicodin and Darvocet helped. I had to avoid all spicy foods, ketchup, orange juice - anything acidic. I purchased some marshmallow root tea from the local health food store and that helped a lot.

My urologist tried me on many medications and Elmiron finally started helping some. I was also catheterizing myself daily with bladder numbing medication to get relief. That helped, but it was not a fun experience!

How does having this pain make affect you in terms of how you live your life?

Chronic pain is very emotionally taxing as well as physically. I became very depressed and thought there was no way I could live much longer dealing with all of this pain. Having CFS and Fibromyalgia was overwhelming in itself, but I had been dealing with those illnesses for many years so I had learned how to cope. Then IC happened and I didn’t know if I could deal with three chronic illnesses. I went through a phase where, if I wouldn’t have had a child and husband to think of, I probably would have committed suicide.

I have since learned and made the realization that this is my life. It’s not fair, but it is what I have to deal with. I have to make the best of what I have to work with and I need to turn a bad situation into something good and try to help others.

I had to give up my career and go on Social Security Disability, so that was a big change for me. I have always identified who I am by what I accomplish. When that was all taken away I had to learn who I was all over again without work.

I think being chronically ill has also made me stronger in a sense. If I can deal with all of this stuff, I can make it through anything.

If you were to look back over what you have tried/haven’t tried, would you change anything? If so, what would you change?

I think I would have insisted more in the beginning of my illness that the urologist see me sooner. I suffered terribly for two months waiting to get in to see him. I shouldn’t have had to do that. I don’t really think there is anything else that I would change. I feel as though I did and tried everything to help that was available to me at the time.

What would you say to someone in a similar situation who is just starting to try to find treatment and relief?

Know that you are not alone. There are many out here suffering and there is light at the end of the tunnel. For most IC patients, the severity of the symptoms dies down after about the first year. There will always be flares but most of us live fairly normal lives.

Ask questions and find online support groups. I started my own forum, http://www.fightingfatigue.org/forum, so that people would have somewhere to go to ask questions and learn how to deal with their illness.

Try to keep a positive attitude and use your suffering as a way to reach out to other people. Start a support group, start a website once you are able - don’t let the illness beat you down. Fight and fight hard.

Sandy, this was incredibly helpful and educational. Many women (90% of people with IC are women) have this disorder and have discussed it with their doctor because of embarassment. I hope that posts like this will help people with IC or who suspect they have IC know that they are not alone. Thank you for taking the time to visit with us.

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POSTED IN: Chronic Pain, Company's Calling, Interstitial cystitis, Pain Management, Unmanaged pain