My Story: Living with Interstitial Cystitis

My Story: Living with Interstitial Cystitis

I am an Interstitial Cystitis (IC) patient, volunteer and patient advocate.

My IC story began on a 2002 car trip from Illinois to Colorado for a family celebration. I noticed that I was constantly asking to stop to go to the bathroom, and was suffering from pain in my bladder that I had never had before.

My mother, who is a retired registered nurse, also noticed how frequent my trips to the bathroom were becoming. When we got home, she said I should go see my family doctor.

Catherine Horine

Catherine Horine

I made an appointment and was given a referral to see a urogynecologist. This was not a specialty I had ever heard of.  Little did I know that I was to become familiar with this specialty and that my life would change forever.

I will never forget November, 2002. That’s when I had my first appointment with my new urogynecologist and was told I had IC. I had never heard of this condition and knew nothing about it.

All I knew was I was going to the bathroom constantly, between 60-70 times per day, and getting up 6-8 times or more at night, which caused severe sleep deprivation.  I was also suffering from chronic pelvic pain, burning on urination, urethra and vulvar/vaginal pain.

My doctor began my treatment with the standard first line of medications and pain management. Unfortunately, it turned out I was allergic to all of the medications that were prescribed. I would become very sick, often landing in the emergency room or leaving work due to severe side effects.

Eventually, working in consultation with my doctor, I elected to have two InterStim sacral nerve stimulators implanted to help my urgency and frequency. InterStim treatment has helped me significantly.

For pain, I have found success with heparin and lidocaine bladder instillations; but this brings with it another set of problems with recurrent infections that I am constantly working to manage.

While I have found two treatments that are helpful, unfortunately they have not been able to give me significant enough relief. As much as I wanted to continue to work, I am now on disability due to the severe nature of my IC.

Since becoming disabled, I have become a strong advocate for IC and the need for better treatments, doctors, fundraising and awareness. I am a patient advocate and help other women and men diagnosed with IC by talking with them on the phone and providing online support.

I am a member of the Interstitial Cystitis Association. I also have an IC blog and Tweet to help provide information, support and encouragement for others suffering with this disease.

I have established a fundraising project with 100% of the money I raise going to IC research. I ask friends and family to make donations instead of giving me presents for birthdays or holidays. So far, I have raised $2,000 for IC research.

Having IC has changed my life forever. I cannot work, socialize, travel or exercise. As any patient suffering from chronic illness knows, this is a lonely life and I spend most of my time being driven to doctor appointments. But I refuse to do nothing and have chosen to do what I can to help others suffering with this horrible and debilitating disease.

I can talk to them on the phone, help answer questions and provide support and direction toward resources. I can write Congress asking for support for better research funding. I can write my blog to try to share what I have learned and use social media to help spread awareness.

What helps me cope and “live” with IC is focusing my energy on doing what I can to help others, raise awareness and be active in the IC community. If I can offer even a little information, answers, support, encouragement, or just let them know I care — then living with IC will have some meaning in my life.

12_7.jpgCatherine Horine lives in Grayslake, Illinois.

National Pain Report invites other readers to share their stories with us.

Send them to editor@nationalpainreport.com

The information in this column is not intended to be considered as professional medical advice, diagnosis or treatment. Only your doctor can do that!  It is for informational purposes only and represent the author’s personal experiences and opinions alone. It does not inherently or expressly reflect the views, opinions and/or positions of National Pain Report or Microcast Media.

Authored by: Catherine Horine

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Colleen Dublin

C. Horine: Why would you have two Interstims implanted? Were they implanted consecutively or concurrently? I’ve had IC since I was a child. I was born with a Neurogenic Bladder of unknown etiology that wouldn’t empty properly and old urine would get infected, bladder stones would form, etc.. When I didn’t have an infection, I often had signs and symptoms of one. I had an Interstim implanted in 2000 and when the battery ran out, had another implanted. What has helped my pain (but not urgency or frequency) even better than the Interstim is a Spinal Cord Stimulator that I had implanted for the pain of a back injury. I still have to take pain killers and I know exactly what you’re talking about in regards to having to quit your job, losing friends, people not understanding. Initially before I went on pain medicine, I spent hours and hours screaming into towels that were soaked from crying. You’re right about baking soda giving immediate relief (just 1/8th teaspoon helps me), but it also gives me a migraine. I think the best pain relief I’ve ever got was from B&O Suppositories, but they don’t make those any more.

Karlya

I started having symptoms in 1981. I saw 22 urologists and two psychiatrists. I was finally diagnosed in 1997 by the first African American female urologist in the country. I was relieved, to say the least. I’ve been on Elmiron since it became FDA approved and I need pain killers when I have a flare up. I still live with pain everyday. Everyday. Flare ups are excruciating. My supervisors don’t understand even though I’ve tried to educate them on my disease. I had to apply for Family Medical Leave to protect my job. I still get up 5 to 6 times a night to pee so I’m always tired. My current (soon to be ex) urologist who was referred by the ICA is not the least bit interested in my pain. I started going to a pain management clinic nearby. The first set of injections caused a horrific flare up. I’m really afraid to go for the second set. It’s a daily battle. Pain. Frequency. Urgency. Everyday. My life sucks.

Sasha

I have been dealing with severe urgency and pain for over 6 months now. I have not been able to work or pay all my bills. I was finally diagnosed by a urogynecologist after several urologists telling me i am too young and the disease to rare for me to have. I am 27. It seems to get worse at night and I do nothing but cry and wander why this is happening to me. The treatments don’t seem to help and my symptoms are getting worse. This has ruined the relationship with the man I love and ruined my life. J worked so hard for my biology degree and had plans to go back to school for occupational therapy. I am a strong person but am now losing hope.

Jamie

IC has ruined my life. I am in constant horrific pain no matter how many pain killers I take. I’ve tried about 15 different kinds of pain killers and none of them take the pain away completely.. or even half way..it is hard to function every minute of the day. I just lost my job and was harassed even though I tried my hardest. I can’t fathom working again. I don’t sleep, I’m constantly tired, I can’t sleep at night because when its dark all I feel is the gnawing pain, when I do sleep I wake up at least four times a night to pee, I have severe pelvic floor dysfunction and I cannot pee unless I get monthly trigger point injections through my vagina into my pelvic floor with a steroid. It is horrifically painful and I have to do it or I cannot pee. When my shots start wearing off, I still have a constant urge to pee, but I can’t.. So I just sit there and cry, sometimes I fall asleep just waiting for a drip to come out. Any amount of urine sitting in the bladder feels like acid. I give myself daily bladder instillations to calm my pain for a few hours a day just so I can make my bed and do my laundry. All of my credit cards are maxed out and at 30, I still live at home. These diseases have ripped my life from me. Now I have to figure out if I can even get disability. They make the process near impossible, but if these people lived one day in our shoes, they would give it to us right away. Meeting people with IC and PFD has kept me going. Nobody understands, everyone thinks you should start feeling better, but it’s a “chronic” Illness. In 5 years, I’ve been to 10 doctors, and most times I know more than the doctor does. I pray everyday there will be a cure. I would do anything to have my life back… Even just to go for a hike with my fiancé without the pain and without worrying about peeing in the woods. We need awareness and a cure.. So many of us suffer in silence.. This is no way to live.

IC ruined my life for 10 years. I got it in 1992 when there was no internet. It took me 3 years to get diagnosed and my own family turned against me. I lost my job of 16 years. I have been in remission for 10 years but I will never be able to replace the years it took from my life.

Jackie Has IC

I also have I.C. it’s hell. The pain is horrid and can come on suddenly without warning. Along with IC many of us have other disorders, vulvodynia, vulvarvestibulitis, painful intercourse, IBS, FM, asthma, it’s awful. It’s so frustrating as removal of the bladder will not stop the pain, you would think that would be the best solution. Who would have thought that a bladder could cause so much pain, and severe pain. If our pain could be stopped by taking our bladders out, trust me I would be the first in line. —-The internet has been just wonderful for support, talking and meeting others with I.C. is a true blessing, as we all are going through the same thing.

Chris Bombacino

Catherine is my dearest friend. She keeps a positive attitude and keeps moving forward. I admire her persistence and dedication.

Good for you! The ICA is a terrific organization and has moved the ball so far forward with their efforts. Congrats on taking the time you have to help others find answers and relief.
I am also an IC patient, thankfully well-controlled at this time with Uribel.
Best to you,
Joy H Selak

Alisha

It’s just so depressing. Who would have even dreamed this up, I didn’t even know it existed until it was diagnosed. Still new at it. Ugh.