I am an interstitial cystitis (IC) patient and a patient advocate. I also volunteer with the Interstitial Cystitis Association (ICA, www.ichelp.org). IC is a chronic bladder condition that usually consists of recurring pelvic pain, pressure, or discomfort in the bladder and pelvic region, and urinary frequency (needing to go often) and urgency (feeling a strong need to go). As many as 12 million American men and women suffer from IC.

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.

Over the course of the vacation, 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.

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 very 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 between 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 treatments outlined in the AUA Clinical Guidelines for IC along with pain management. Unfortunately, it turned out I was allergic to all of the medications that were prescribed to treat my symptoms. 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 to me, 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 via the ICA Facebook Community.

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 from 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 $3,000 in the last three years 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 from 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.

33 COMMENTS

  1. I’m very frustrated with everything from my debilitating symptoms that bring on so much anger to my doctor who doesn’t listen or care about what i go through. I will just come out and say that as of now i plan to kill myself because i have no money, no support system or family. i look at going to the bathroom every waking second as a low quality lifestyle. it is just like being on life support because a major bodily function has failed and there is no chance of a productive life. i am sick of waking up everyday lonely,angry and lost. my hat off to you for dealing with the crapiest disorder of the world. i say this with the utmost respect and admiration. i can’t do it but admire those who can.

    • Mary, We are a blog and as such do not offer medical advice. But, I am so sorry for the pain, discomfort, and distress you are experiencing. Please, I urge you, to reach out for help from a professional (suicide hotline), family, friends, or your doctor. If your current doctor isn’t sympathetic, then consider finding another. There is help available, please seek it.

  2. Nobody can understand your pain better than a former IC patient. I guess, my story is no different than everybody’s. I was diagnosed more than 11 years ago, went through all the available medicine like elmiron , bladder instillations, etc. I was in unbearable pain, not being able to sleep and spending my nights in the bathroom, I was stuck at home, not ever going out and thought that my life is over, until I understood that nobody can help me, and I need to do it myself. I am blessed to have a very supportive family. My husband and my daughter has helped me a lot.
    3 years ago I decided to start cleansing and have done a long water fast (28 days on water only). Since nobody could explain to me the roots of IC, I was consumed by the notion that it’s just a toxic overload that attacks the weakest body organs, in our case – the bladder. I have done this fast at home all by myself , unsupervised, and it can be dangerous. It was a very brutal and horrific experience. The first 3 days I spent in a bathroom, not sleeping even for 10 min, shaking of a sharp pain (I felt like razors are going through me) and developing high fever. I was nauseous the whole time and it was very hard to drink enough water, so I probably was dehydrated. Perhaps, you can find a less painful way to detox. Yes, I went through hell, it was incredibly painful , but I got better after that, not perfect, not cured though. My IC symptoms dramatically subsided, but I still had lots of healing to do. After the water fast I went on a 99% raw vegan diet with lots of green juices and green smoothies daily. It’s been more than 3 years since, I am feeling wonderful, very happy and absolutely pain free.
    Obviously, my bladder has shrank during the years of my suffering, so I needed to urinate more than a healthy person does, but I feel that my bladder capacity is getting better and better every day. I drink lots of water during the day (2 to 3 liters), plus citrus and green juices (yes, I can have any citrus fruit I want now), and I need to go to the bathroom only once at night, sometimes I sleep through the night. I don’t watch my diet anymore (as long as it’s raw vegan), I can eat any fruits and veggies, nuts and seeds I want, and potassium content is no matter anymore. I can go out, travel and live a normal life again.
    I don’t have any angle, I am not selling anything, no money were spent on my healing process, I have done everything by myself with the help of YouTube videos of raw community and books from our public library. I have used no doctors and no supplements whatsoever. My diet is evolving all the time – I started from raw vegan gourmet food as a transitional diet, and now I am on a cleaner 80/10/10 diet. You can do it too, I strongly believe it!
    I’ve never told my story before, but it was bugging me that so many people need help and I am keeping this to myself. If I can help even one person , if somebody out there is willing to work hard and not relay on doctors who is absolutely helpless, I will be so happy!

  3. Thank you for your courage and honesty in sharing your experience. When I spent time with my gynecologist colleague, IC patients were a good portion of his patients. I encourage all who suffer from this condition or any other chronic issues to keep being proactive in their medical journeys. That is, finding a dream team of doctors who are open-minded and can point the way to legitimate practitioners of integrative/complementary/functional medicine. Western medicine is great for acute problems, dealing with emergencies and for ruling out really bad things (tumors, masses, cancers, etc.). But when it comes to chronic conditions, it’s not where it shines. If we accept that, we won’t keep forcing western medicine to give us answers. Keep looking. The answer may lie elsewhere. Just keep your primary doctor involved in the center of your care. Blessings to you!

  4. Love it Catherine! You are an inspiration for those living with this horrible- lack-of-understanding condition.
    I hope more and more Doctors, Nurses and health care provider will wake and realize that this is real.
    Keep it going!

  5. Thank you for sharing your story. I am an RN and suffered with IC for over 10 years before finally being diagnosed with IC and Hunner’s Ulcers 6 years ago. Bladder instillation with lidocaine and heparin worked for about a year . I was finally able to catch up on some much needed sleep and pain relief. I learned what I could and could not eat by trial and error. When the pain, UTI’s, and frequent urination came back I receive a variety of meds that have helped somewhat. I am on imipramine (blocks pain signals to the brain and also allows the bladder to hold more volume), Macro Bid for constant infections, and Tramadol for the pain. On occasion, I still have flairs that last up to 2-3 wks which are intolerable, but am living with a constant pain level of 4 most of the time. I am unable to walk for any distance (use to hike and now cannot), I can ride my horse but suffer quite a bit after each romp . I am only able to work one day a week and depression is a battle I fight on a daily basis. I have checked out the IC website and the many treatments available. I have no insurance and live in a very rural area. You have any suggestions for me?

    • Chin – It is difficult if you live in a very rural area and have no insurance. However, you should look into getting coverage via the Affordable Care Act on the healthcare.gov website. Many states are expanding Medicaid/Medicare coverage as part of the ACA and yours may be one, so even if you didn’t qualify before, you may now. Check again. But check out what plans are available in your state to see about insurance.

      As for finding a good doctor, unfortunately, it may be necessary to travel further than you would want but if you can find a doctor that can help you more, you may find you won’t need to go as often. It is a challenge. My doctor is over an hour away and I can no longer drive so my 83 year old mother takes me to all my appointments.

      I use instillations to help my pain; I too have struggled with chronic UTI’s and I have 2 InterStim for my frequency. I have severe retention and have to self-catheterize 5 times a day. I sympathize with you so much. I am on Disability and cannot work, travel etc. either. It is hard. I’m sorry for your struggles. I hope you will not give up, keep fighting and looking for better care, try to find insurance and hopefully you can get some better help.

  6. Catherine, thank you for your story. I’m sure most patients can relate to exactly the day and year when they first started getting the symptoms that eventually led to their diagnosis of IC. I was extremely lucky to get diagnosed on the first visit 24 years ago, which was pretty unheard of back then. My urologist was familiar with it and for the next 23 years we went through almost every treatment in the book, including medications, interstim, therapies etc. that exists for IC I even went to Boston to the Lahey clinic back when Elmiron was only being given out on a protocol trial. That drug helped me somewhat for the next 15 years or so, and then, all of a sudden, stopped working. All of my IC doctors (there were 4 in my city) left the state, so hundreds of us IC patients were left without help. I now work with an exceptional pain doctor and primary care physician who are willing to listen to me and try whatever I’ve researched. I’m now trying lidocaine urethral suppositories which are, amazingly, seem to be helping. I’ve got my fingers crossed. It will be the first time I’ve had any relief for two decades. All we can do as an IC patient is be willing to try what’s out there. Penny

    • Penelope; Thank you for your kind comments. You certainly have been through a lot since getting IC. Your story, unfortunately, is not unusual. I do heparin & lidocaine instillations and they work for me, so I am glad to hear the suppositories help you. You are right; we have to keep fighting and trying and new treatments are becoming available all the time! Good luck!
      Catherine

  7. Catherine, thank you so much for writing this and doing what you do . Sometimes this disease leaves you feeling so alone and that no none understands. It is bittersweet to read that someone else does!!!

  8. Catherine,
    Thank you for sharing your story and for all your fundraising efforts. I, too, do not work. Unfortunately, when I first became sick in 2002, I had been a stay-at-home mom for over 3 years already. It took 4 more years to get a correct diagnosis in Fall 2006. By then, I had been out of work to long to claim any disability.
    Keep up the posts. You noted the extreme loneliness that can really affect IC patients. It’s good for anyone suffering out there to see these words of yours…..to know the way they feel is very normal in this situation.

  9. Thank you for sharing your story. I have been dealing with IC after an injury to my colon and bladder that caused a Vesical Fistula. 3 month after Urologist and Surgeon repair the fistula; I developed Chronic IC. I am on disability now as well and would like to help raise awareness in my community since most Doctors where I live at, have no idea about IC or how to Treat it.
    Thank you,
    Betty

    • Betty; Thank you for your kind words. If the doctors in your area or your own doctor seems in need of further education about IC, the ICA has a brand new Continuing Education tool for doctors available for them on the ICA website. It’s free for them and they get Continuing Medical Education (CME) credit for taking the course. I’ll give you the link. I gave this to my doctor (who is knowledgeable but still was very interested in it). See if you can get this to your doctor; it can be very helpful in educating them about the latest research and treatment options.

      http://www.ichelpcme.org/monograph.php

      If you would like to help raise awareness, the ICA has lots of resources on their website to help you do this. I’ll post some links

      http://www.ichelp.org/page.aspx?pid=623

      http://www.ichelp.org/Page.aspx?pid=777

      Catherine

  10. I have been dealing with this since age 12. I’m 31. I’ve applied for disability four times and been denied:( I now have an attorney do u have anything that would help my case i could give him? I have no health insuarance either so I’m stuck. I just lost it but still have to wait 8 more months

    • Nicole; I am sorry that you are having such a hard time getting Disability. Don’t give up. One of the most important things I think your attorney should have, if you have not already provided it, is the Social Security Policy Interpretation Ruling on IC (I’ll provide a link to it for you). This is an extremely important document, as it recognizes IC as a condition that can be a basis for a disability finding, and it provides guidelines for the agency’s evaluation of IC claims. You should be sure your attorney has this document.

      http://www.ichelp.org/document.doc?id=250

      In addition, at this point, I would recommend going to the ICA website and purchasing their Personalized Disability Packet. It’s $40 (if you are an ICA member it’s only $20). If you can’t afford it, ask your attorney to purchase it and take the $40 out of your settlement when you finally do win. This is a very important packet and it includes a personalized letter from the ICA to your judge or insurer to help you to win your case.

      https://www.ichelp.org/SSLPage.aspx?pid=651&nccsm=21&__nccscid=22&__nccsct=Disability&__nccspID=927

      http://www.ichelp.org/Page.aspx?pid=416

      I hope this information is helpful. Don’t give up; keep fighting! If you would like to contact me directly, feel free to do so (remind me when you do that we connected on this site) at my email: hocatwoman720@gmail.com
      Catherine

  11. Thank you for all you do.
    I received my IC diagnosis a few years back and am receiving a lot of treatments. My Urologists is excellent and I know I am Blessed.
    Together we will raise awareness.

    • Annette; Thank you for your kind words of support and encouragement about sharing my story. I am so glad you have an excellent doctor and are getting good care. Yes! Together we will raise Awareness!
      Catherine

  12. I am suffering for years and have major flare ups which leaves me bedridden. I’m on morphine and all kinds of strong meds. I’m considrinG having an operation to remove the and inserting a NEO bladder. This is where they convert part of colon or small intestines into a bladder. I can’t take the pain anymore.

    What is your feeling about this and do u know any other people who had this done alReady

    Please let me know. I’m From Cape Town. SouTh Africa.

    • Ingrid; I am sorry you are in such pain and having such a hard time getting good care. Here in the U.S., bladder removal and/or diversion is not a recommended treatment for IC except in VERY RARE cases. First, I will give you some links to the ICA website that might be helpful. One on Flares and various methods to treat them. See if there is some information there that you haven’t tried that might be worth looking into.

      http://www.ichelp.org/ICFlares

      Next, while you are not in the U.S. I am including links from the ICA on the Treatment of IC as well as a link to the American Urological Association Guidelines on the Diagnosis & Treatment of IC. I would try printing these out and using them to talk to your doctor about the many options available to treat IC. These contain the most current information based on current research and your doctor would hopefully be open to reading about it.

      http://www.ichelp.org/Page.aspx?pid=429

      https://www.auanet.org/common/pdf/education/clinical-guidance/IC-Bladder-Pain-Syndrome.pdf

      Here’s a link to the ICA website page on surgical options. Scroll down to the section where they talk about bladder removal/diversion and why it is not recommended.

      http://www.ichelp.org/page.aspx?pid=384

      I hope this is helpful information. If your doctor is willing, he can contact the ICA directly for information on the latest research and treatments. Their email is: icamail@ichelp.org
      Catherine

  13. Wow, Thank You for sharing your story and all you do to advocate for IC Patients! I can completely relate to your story and it is good to know that we can all put in some effort to help each other and help get the resources and research IC Sufferers need! Great Job with your fundraising! You are an inspiration!
    I thank you for that as it is hard to come by most days.

  14. I was wondering if we could talk I have had ic for four years now and keep getting denied social security and people don’t understand what it is like going to doctors and the er and they don’t know what to due for me. I also did installs and have an interested implant but it just seems to take the edge off and I just don’t know what to do anymore. I have no family but my husband and he gets very frustrated with all the bull from doctors but knows how I feel. I’ve been really down lately and even tried to overdose I’m so tired of people not understanding my situation . Terri Richter

    • Terri
      Go to the ICA website, ichelp.org and search the words “ic disability resources”. Put that in the search box on the website. It will lead you to what you need to do to get your deserved benefits. Get a lawyer. Most will take a small percentage of benefits in a lump sum for payment, if they get you the benefits. And there are good lawyers out there who do this for a living. IC is a recognized disease now as a disability, so they have to listen to you. Make sure you get good reports from your doctors, confirming you have IC. Any other questions, feel free to ask and good luck! Penny

  15. Thank-you for writing about this. I can relate to your story. How hard was it to get disability? My doctors tell me I “look healthy” so I’m probably not a candidate. If it’s not the IC putting me out and frustrating my employers with unplanned time off it’s one of my many other chronic conditions.
    I admire you for spreading the word about this.

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