Interstitial Cystitis (IC) Support Group

Interstitial Cystitis (IC) is a urinary bladder disease of unknown cause characterised by pelvic and intense bladder pain, urinary frequency (as often as every 10 minutes), and pain with urination. It is not unusual for patients to experience nocturia and pain with sexual intercourse. IC is also known as painful bladder syndrome (PBS), particularly outside of the USA.

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Medical marijuana for IC

Hello! I have "classical" IC, complete with Hunner's ulcers, and it is slowly getting worse. I am allergic to most pain medications, and the ones that I am not allergic to don't seem to work. I have tried the usual medications, instillations, hydrodistention, etc., and these don't work either. My urologist thinks that I should be able to wait 3 or 4 months for a new treatment to work, and doesn't want to give me anything in the mean time for the pain. I am missing work and failing tests in school, not to mention the ever-growing pile of laundry and dishes at home because of the pain. I am lucky to live in a state that has a legal medical marijuana program. Unfortunately, my doctor doesn't feel "comfortable" with it as a pain-relief option, and refuses to even talk about it with me. Ditto for all the other physicians and pain specialists in the area. I have been on other support groups where some people have had great pain relief with the use of marijuana. I know it helped me a lot when I had menstrual cramps that were so painful they made me throw up. Marijuana is one thing my body can tolerate, and nobody will talk to me about it. Any advice on how to find a medical marijuana-friendly doc, or how to make a doc realize that marijuana can be effective in pain relief?



Hi Roxy5, first of all you are lucky to be in a legal state for Cannabis. Cannabis is a moderate pain reliever but it's real benefits for IC, to me is the lessening of the spasms.
I have found in my 15 years of experience that a Urologist is there to run costly tests, make a diagnosis, and then shove Elmiron at you. If it doesn't work, then you are "just going to have to live with it. They have ego's that are used to diagnosing, curing, and then saying goodbye. This doesn't happen in the case of IC, there is no cure, and as we are chronic( due to no cure) we are not the type of patients that Urologists like to take on or keep on as patients. It is a blow to their ego's that they cannot cure us and basically send us off to deal with the excruciating pain, alone.

I was misdiagnosed for 10 years and just lived with it :((((
The only people that are going to write a prescription for cannabis in a legal state are usually the ones who deal with pain. Since IC pain can be as severe as late stage bladder cancer pain, this is a part of IC that has been overlooked for far too long. My recommendation would be to ask your PCP for a referral to a Pain Psych and a Pain Management Specialist, one who your doc thinks will write for pain relief and the use of cannabis for your condition.
The Pain Psych is awesome, they understand what we live with all the time, we are their main patients, and they can be very useful in coordinating and communicating between you and your team of doctors. The Pain Psych also helps you deal with the realities of this insidious disease, and how it robs some of us of a "normal" life. I cannot remember a day in the last 15yrs where pain didn't enter my life. Those issues have to be addressed and dealt with psychologically.
The pain management specialist I would ask for a referral to is one who knows nerve pain. Most pain management centers are for orthopedic pain, broken legs, necks, back pain, etc. You need a pain management spec that knows nerve pain and the different modalities for treating this difficult type of pain. Ask, when you make the appointment, or make sure your referring doc asks whether the pain mgt. specialist, knows how to treat nerve pain specifically.
As far a cannabis goes, it does work, it does stop the spasms and lets your body relax and get out of it's pain posture. I had a biofeedback machine that I could take home and use and when I started Physical therapy for pelvic pain, I was given it to become more familiar with the muscles in the pelvis and to see that I had pelvic floor dysfunction. While my strength numbers were in the low but acceptable range, my resting state was awful. I came in and did biofeedback in PT the first time and I rated a 24. The normal number is 3. I could not relax those muscles, I guess as I had been in guarding posture to not be hurt in the pelvis any more. I have had 4 abdominal surgeries already and 2 organs removed needlessly. I worked with my PT for 6 months and she was happy that I could finally get my resting state number down to 16. I went home and used my medicine from God and used the biofeedback machine to see what my pelvic muscles were doing after using cannabis, it was a 3!!!!. I was shocked, so the next time I went to PT, I used Cannabis and walked, I was 2 houses away from the clinic, and when she did biofeedback, I was a 3. She was in shock, she couldn't believe after close to a year of bi weekly PT sessions that I could be a 3. I told her why I was a 3, she didn't doubt me for a second, and said she would be sure to pass this info on to everyone in her field, that this herb does indeed have benefit to sick people. I also suffer from chronic nausea, from the pain, and the cannabis is far superior for instant nausea relief, compared to any pill that has to be digested and usually is thrown up.
After watching my entire family die from cancer and those who used it for palliative care vs. those that didn't the results were exceptional. The ones who used cannabis , were able to eat, and therefore live longer and fight the chemo and cancer better. It is an amazing gift from God, and some people can't have access to a viable herb??? It does work, bring in your history fully documented to your doc for your first visit, make sure to have copies for him/her, so you can just give them everything and they will then have a complete file.

IC is a horrific disease that robs people of their ability to live normal lives, and the strength and endurance, to keep going every day. I hope this helps, sorry it is so long- Good luck to you. If you live in CA, your chances of finding a doc to write is good. Otherwise, you need to make your case, with your history ( I did a chronological timeline of surgeries, treatments, drugs tried, etc) A good pain management specialist is who you need to see for pain relief including cannabis, not a Uro, they are done with you when they make the diagnosis, sadly.
Best wishes to you and your journey through this.

Thanks for the advice. I will definitely try to find a pain specialist. I am so glad cannabis works for you and makes you feel better.

I am an ic patient and I also was misdiognosed for 10 years and told i had bi-polar with possible fibromyalgia... drugged up, put on pain killers and anti-anxiety meds. I went nuts...lost everything including my husband who gave up on me when I got off the meds. he didn't believe i wasn't bi-polar. now on my own for 4 years, multiple dr's, cortect ic diagnosis, hysterectomy, on elmiron, had bladder tx, watching the diet, no pain meds now because 3x week i smoke marijuana. it's illegal here, but i don't care. i feel normal and the anxiety from all the constant pain subsides and i can finally relax. i forgot what that feels like. ic makes me tired and at 40, i sometimes feel 80. i don't want to eat, but marijuana helps all of that alot better then a pharmacy of pills that just make me sicker. with marijuana i can drink more water because it doesn't hurt... cuz so often i am dehydrated from not drinking because it causes so much pain. intimacy is much, much better and i'm finally feeling happy again. no anti-depresent did that for me.

Hi Roxy, I wish that you could be prescribed with medical marijuana. I've never tried it before but my husband told me that it would be better for me to smoke this instead of take Vicodin. I wish it were legal in Wisconsin. What have you tried for pain? Doctors are always reluctant to give out medical marijuana but I wish they would for IC patients. Maybe if you saw a pain management specialist and you showed him/her that nothing else really helps you, maybe then he/she could prescribe the marijuana. I hope that you will find relief soon.
FindingJoy, I'm glad that the marijuana is working for you after everything that you've tried. I'm sorry that you are struggling but at least smoking this is helping you.

You are lucky to be living in California where medical marajuana is legal. Find yourself a pain dr. who will write you a prescription for it and give it a try. I live in Illinois, so it is not legal here. If it was, I would definitely try it. You have nothing to lose except possibly the horrific pain of IC. Even if it is temporary, it would be worth it. I am currently using bladder installations as treatment and they work sometimes, not always. Of course, since there is no cure for our disease, any type of relief is welcomed by me. I am never pain free for long and I am very aware of a halfway decent day. They are few and far between. I'm so glad to have joined this group because I definitely need support. I feel so ALONE in this and that makes me feel hopeless quite often.
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