Interstitial cystitis
Five years ago I fully recovered from medically induced Interstitial Cystitis. I understand the disease is most likely a spectrum of issues, and that the particular cause described below is not the cause for everyone, or maybe even most people who are afflicted. But for the sake of others who are currently suffering from this particular medically induced issue, as I once was, I beg you to read and consider.
In my early twenties, while struggling with a severe and year long bout of acne, I realized after lots of research, that I had a hormone problem. I asked my gynecologist to prescribe Spironolactone, which was all that seemed to be available at the time. The medication worked great initially, but tended to lose efficacy over time, requiring the dose to periodically be raised. Eventually after around 5 years, I reached the maximum dose that could be taken. At this time, I had also started to develop what felt like UTIs, but most of the time the cultures would come back negative for bacterial growth. I was sent to a Urologist who diagnosed me with Interstitial Cystitis. When I told him that my PCP had given me Demerol shots during a bad flair up, and asked what he did, he seemed to think this was some sort of drug seeking behavior, going on a tangent about what he’d seen come from other doctors who did this, that he had protocols that would help, but that would never be one of them, then becoming very short with me and stated that this was a life long condition I would just have to learn to live with. Emotional from this thought and in disbelief that no one out there knew how to fix it, I tried to find a new urologist. Unfortunately, I quickly discovered he was the head of all the affiliated urology clinics within a couple hours from me and possibly in my state, and realized that if he as the top doctor, didn’t have a cure, it was unlikely anyone under him would either. Soon after that appointment, I had a gyno appointment. In talking to my doctor, I discovered he had several patients with IC. He said he took care of them by prescribing a daily to 3 times daily Elmiron capsule, and for flair ups, by giving them a calming bladder wash. He also told me that back in the day, they used to diagnose IC by giving patients a potassium bladder wash and if the patient had a painful reaction, they received the diagnoses. He said they stopped this diagnostic method because the level of pain patients experienced was unethical. I started Elmiron treatments and saw an immediate reduction in the burning sensation I had experienced. Unfortunately I also started running a fever of on average 100.9, give or take a couple points, a couple months prior to my gyno appointment. I was told by my gyno that some people just run on the hotter side of normal and maybe that was why I had a fever. About three months into the use of Elmiron, I developed the worst UTI I had ever experienced. The Elmiron had masked the symptoms until it was so bad that I was urinating blood and pieces of tissue. After this, I became desperate. I had already begun to research Spironolactone alternatives because I had reached the maximum dose, and my acne was starting to come back. During this time, I learned that Spironolactone was a potassium sparing drug. Thinking back to my doctors comment on the old test for IC, I knew then what was happening. I realized I had too much potassium in my system from the
Spironolactone and that it was causing the inflammation, fever, and burning. I stopped taking it the next day.
Bicalutamide seemed to have a lot of promise for a replacement, but from what I read, was only being used in Europe for off label hormonal treatment in women. I made an appointment with my gyno and by the time I was seen, had been off of both Spironolactone and Elmiron for 3 months. The fever and uranary symptoms were gone, although I have discovered that I do run normally about 98.9-99. When I told him that I was no longer afflicted, he also told me that it was a life long condition. He said I should expect it to come back. He did however agree to change my medication to Bicalutamide, and I have been doing great ever since. No acne, no chronic fever and no burning sensation associated with urination or my urethra. It’s been 5 years and I’ve never had another bout of IC. I’ve also never had to up my Bicalutamide dose, and in fact have for the past two years, taken it every other day, sometimes even less, and can even go off of it for a couple weeks with no acne issues.
As a precaution, I recently had a hormone panel done, as I am 37 and wanted to make sure everything looked good, and I and my gyno are happyish with the results.
Unfortunately I’ve now read of a few women who are experiencing similar symptoms after being put on Spironolactone for a long time, and are now on Elmiron to deal with it.
My mind just can’t see the whole picture, but I wonder is it possible that other women who don’t have medically induced IC, have potassium overload induced IC?
Most of the women I know who’ve tried to get Bicalutamide were denied by their doctors, including myself. After my doctor retired, I ended up having to go to a Dermatologist for it, as my new gyno would not prescribe hormone related medication. She stated that she sent all patients to Endocrinologist, or Dermatologist for this need.
Additionally, in going to a speciality women’s clinic for a hormone evaluation, my intake nurse was on Spironolactone and had just started taking Elmiron. When I talked to the doctor at the clinic, she had never even heard of Bicalutamide, and when I explained my past situation, her only comment was to ask if Elmiron had worked for me. This is thought to be the best clinic in my state for women’s health.
For all the women out there who are suffering unnecessarily, I’m begging that you please consider taking up this cause. I’m not saying that Bicalutamide is the hormonal answer, as who knows what it may also eventually cause, but taking people off of a medication that is causing severe inflammation of the urinary tract and or bladder, is important. I would rather have severe acne than go through that ordeal again.
If someone has already figured this out, amazing! I will be so glad to know this and will continue to help spread the word! But I am sending this to everyone I think has a stake and who could possibly fix the problem, because I don’t believe it is yet known.
None of this is for me or my gain, but because I care. I don’t mind sharing medical records, but I don’t want or need any recognition from this discovery. If you will take this on for no other reason, please consider that whoever does prove this theory, could gain some notoriety because of it. Why not let that person be you?
A bit of an after the fact disclaimer, I homeschooled myself in the back woods of southeast Arkansas, and because I didn’t have the necessary tools for the job, my education was lacking. I often struggle to articulate my ideas and thoughts, as well as struggle with grammar, sentence structure and spelling, so if there is anything I left out or didn’t explain well, and you need clarification, please don’t hesitate in asking.
Additionally, there are other things that I did not include because I didn’t feel were relevant, but are a part of my medical history, and I’m happy again to disclose whatever is needed, including non related info.
Tanya
Interstitial cystitis
Five years ago I fully recovered from medically induced Interstitial Cystitis. I understand the disease is most likely a spectrum of issues, and that the particular cause described below is not the cause for everyone, or maybe even most people who are afflicted. But for the sake of others who are currently suffering from this particular medically induced issue, as I once was, I beg you to read and consider.
In my early twenties, while struggling with a severe and year long bout of acne, I realized after lots of research, that I had a hormone problem. I asked my gynecologist to prescribe Spironolactone, which was all that seemed to be available at the time. The medication worked great initially, but tended to lose efficacy over time, requiring the dose to periodically be raised. Eventually after around 5 years, I reached the maximum dose that could be taken. At this time, I had also started to develop what felt like UTIs, but most of the time the cultures would come back negative for bacterial growth. I was sent to a Urologist who diagnosed me with Interstitial Cystitis. When I told him that my PCP had given me Demerol shots during a bad flair up, and asked what he did, he seemed to think this was some sort of drug seeking behavior, going on a tangent about what he’d seen come from other doctors who did this, that he had protocols that would help, but that would never be one of them, then becoming very short with me and stated that this was a life long condition I would just have to learn to live with. Emotional from this thought and in disbelief that no one out there knew how to fix it, I tried to find a new urologist. Unfortunately, I quickly discovered he was the head of all the affiliated urology clinics within a couple hours from me and possibly in my state, and realized that if he as the top doctor, didn’t have a cure, it was unlikely anyone under him would either. Soon after that appointment, I had a gyno appointment. In talking to my doctor, I discovered he had several patients with IC. He said he took care of them by prescribing a daily to 3 times daily Elmiron capsule, and for flair ups, by giving them a calming bladder wash. He also told me that back in the day, they used to diagnose IC by giving patients a potassium bladder wash and if the patient had a painful reaction, they received the diagnoses. He said they stopped this diagnostic method because the level of pain patients experienced was unethical. I started Elmiron treatments and saw an immediate reduction in the burning sensation I had experienced. Unfortunately I also started running a fever of on average 100.9, give or take a couple points, a couple months prior to my gyno appointment. I was told by my gyno that some people just run on the hotter side of normal and maybe that was why I had a fever. About three months into the use of Elmiron, I developed the worst UTI I had ever experienced. The Elmiron had masked the symptoms until it was so bad that I was urinating blood and pieces of tissue. After this, I became desperate. I had already begun to research Spironolactone alternatives because I had reached the maximum dose, and my acne was starting to come back. During this time, I learned that Spironolactone was a potassium sparing drug. Thinking back to my doctors comment on the old test for IC, I knew then what was happening. I realized I had too much potassium in my system from the Spironolactone and that it was causing the inflammation, fever, and burning. I stopped taking it the next day.
Bicalutamide seemed to have a lot of promise for a replacement, but from what I read, was only being used in Europe for off label hormonal treatment in women. I made an appointment with my gyno and by the time I was seen, had been off of both Spironolactone and Elmiron for 3 months. The fever and uranary symptoms were gone, although I have discovered that I do run normally about 98.9-99. When I told him that I was no longer afflicted, he also told me that it was a life long condition. He said I should expect it to come back. He did however agree to change my medication to Bicalutamide, and I have been doing great ever since. No acne, no chronic fever and no burning sensation associated with urination or my urethra. It’s been 5 years and I’ve never had another bout of IC. I’ve also never had to up my Bicalutamide dose, and in fact have for the past two years, taken it every other day, sometimes even less, and can even go off of it for a couple weeks with no acne issues.
As a precaution, I recently had a hormone panel done, as I am 37 and wanted to make sure everything looked good, and I and my gyno are happyish with the results.
Unfortunately I’ve now read of a few women who are experiencing similar symptoms after being put on Spironolactone for a long time, and are now on Elmiron to deal with it.
My mind just can’t see the whole picture, but I wonder is it possible that other women who don’t have medically induced IC, have potassium overload induced IC?
Most of the women I know who’ve tried to get Bicalutamide were denied by their doctors, including myself. After my doctor retired, I ended up having to go to a Dermatologist for it, as my new gyno would not prescribe hormone related medication. She stated that she sent all patients to Endocrinologist, or Dermatologist for this need.
Additionally, in going to a speciality women’s clinic for a hormone evaluation, my intake nurse was on Spironolactone and had just started taking Elmiron. When I talked to the doctor at the clinic, she had never even heard of Bicalutamide, and when I explained my past situation, her only comment was to ask if Elmiron had worked for me. This is thought to be the best clinic in my state for women’s health.
For all the women out there who are suffering unnecessarily, I’m begging that you please consider taking up this cause. I’m not saying that Bicalutamide is the hormonal answer, as who knows what it may also eventually cause, but taking people off of a medication that is causing severe inflammation of the urinary tract and or bladder, is important. I would rather have severe acne than go through that ordeal again.
If someone has already figured this out, amazing! I will be so glad to know this and will continue to help spread the word! But I am sending this to everyone I think has a stake and who could possibly fix the problem, because I don’t believe it is yet known.
None of this is for me or my gain, but because I care. I don’t mind sharing medical records, but I don’t want or need any recognition from this discovery. If you will take this on for no other reason, please consider that whoever does prove this theory, could gain some notoriety because of it. Why not let that person be you?
A bit of an after the fact disclaimer, I homeschooled myself in the back woods of southeast Arkansas, and because I didn’t have the necessary tools for the job, my education was lacking. I often struggle to articulate my ideas and thoughts, as well as struggle with grammar, sentence structure and spelling, so if there is anything I left out or didn’t explain well, and you need clarification, please don’t hesitate in asking.
Additionally, there are other things that I did not include because I didn’t feel were relevant, but are a part of my medical history, and I’m happy again to disclose whatever is needed, including non related info.
Tanya