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Sorry this is so long, but it was totally cathartic to write!
When I found the ICN, not even 7 months ago, I never believed I would be posting in this forum. I read this forum, and the remission forum with such mixed feelings: happiness for those who were feeling better, but sadness because I thought it would never be me.
When my symptoms began last July, it was mainly massive pelvic pain. I never had bladder pain, or urethral pain, and only peed a few more times than a "normal" person. I went through test after test, and doctor after doctor, before finally finding my current gynocologist, who told me he wasn't going to give up until he figured out why I was in so much pain. He didn't hesitate to prescribe me painkillers, which I did NOT hesitate to take! We tried muscle relaxers, birth control pills, a CT scan, a laparoscopy... we found out I had ovarian cysts, endomitriosis, and cervical changes... and still, nothing was getting better. I was at the point where I could only make it into the office once or twice a week, and generally had to leave before 5. Thank God for my boss, who honestly has to be the world's most understanding person. She suggested we turn my position into a full-time work-from-home job, but I told her I wasn't at that point yet. Almost... but not quite. My best friend was my heating pad, and I couldn't go ANYWHERE without it.
My gyno finally suggested IC, and did a potassium sensitivity test. He assured me he really didn't think it was IC, but had no other tests to run to figure out what was causing me so much pain. Turns out- I had an immediate painful reaction to the PST. I went home with a prescription for Elmiron, and not much hope. My doctor didn't know a lot about IC past the PST and prescribing Elmiron. He suggested we do DMSO instillations, but I told him I needed more time to research what was going on with me. He sent me to a physical therapist who worked with pelvic floor problems in the meantime.
It was then that I found the ICN. I found out that there was a diet that I should be on. That there were medicines that might help me besides Elmiron, and that many people found their way out of the pain. I found it hard to believe that could happen to me, but I went back to my doctor the next week, with a request... put me on hydroxyzine. I started going to PT, and found a urologyst who specialized in IC. He immediately started me on amitriptyline, and told me that he didn't think further testing was necessary. He believed I had mild IC, and that the main cause of my pain was my tight pelvic floor. He made sure I was on the diet, and told me to continue my PT.
By this time, the pain was already starting to lessen because of PT. I was concerned because I was having some bladder symptoms: pain on urination, a general feeling of "uncomfortableness" in my bladder. My gyno said I had probably been having these issues all along, but that they had been masked by my massive pelvic pain. I made sure to stick closely to the diet, and take my medicine every day. By early December, I realized I was having more good days every week. I managed to come back to work full time, but still never left home without my heating pad! By mid December, I realized one day that, while I still brought my heating pad to work, I hadn't gotten it out to use in days. By January... I didn't bring it with me anymore.
In early February, I found out I was pregnant. I immediately stopped hydroxyzine and amitriptyline, but decided to stay on Elmiron. Six weeks into my pregnancy, I realized my pelvic pain was coming back. Going off the amitripyline definitely made a difference. At seven weeks, I went in for an ultrasound, and we found out there was no baby- only an empty sac. My gyno told me it was most likely a blighted ovum, and to come back for another scan in a week. When I came back a week later, my pelvic pain was pretty awful again, and there was still no baby. I got cyctotec to start a miscarriage, some Vicoden for the pain, and strict instructions to immediately restart my meds.
The miscarriage was much worse emotionally then physically. We do intend to try again, as soon as I restart periods. I've been back on my meds for 3 weeks now, and am feeling amazing. I've had no pain- bladder, pelvic, or urethral, since about two days after I restarted meds. I've been experimenting with the diet, to see what I can handle. (This has been the first time I've done this since November). Turns out... there isn't much I can't handle. I think I am one of the lucky ones for whom Elmiron performs its magic. I feel like me again- the me I was before last summer.
I know I will have setbacks, and that things won't always be this good- but I'm just so thankful I've FOUND good again, when I was so sure that it wouldn't ever be the same as it used to be. And it's not the same- now, when I wake up and I'm not in pain- I'm grateful. I don't take it for granted, and I never will again. For anyone reading this, at the beginning of the IC journey- I was there. I was where you are now. Hopeless, crying, in pain every day... and you can be where I am now. Don't give up.
When I found the ICN, not even 7 months ago, I never believed I would be posting in this forum. I read this forum, and the remission forum with such mixed feelings: happiness for those who were feeling better, but sadness because I thought it would never be me.
When my symptoms began last July, it was mainly massive pelvic pain. I never had bladder pain, or urethral pain, and only peed a few more times than a "normal" person. I went through test after test, and doctor after doctor, before finally finding my current gynocologist, who told me he wasn't going to give up until he figured out why I was in so much pain. He didn't hesitate to prescribe me painkillers, which I did NOT hesitate to take! We tried muscle relaxers, birth control pills, a CT scan, a laparoscopy... we found out I had ovarian cysts, endomitriosis, and cervical changes... and still, nothing was getting better. I was at the point where I could only make it into the office once or twice a week, and generally had to leave before 5. Thank God for my boss, who honestly has to be the world's most understanding person. She suggested we turn my position into a full-time work-from-home job, but I told her I wasn't at that point yet. Almost... but not quite. My best friend was my heating pad, and I couldn't go ANYWHERE without it.
My gyno finally suggested IC, and did a potassium sensitivity test. He assured me he really didn't think it was IC, but had no other tests to run to figure out what was causing me so much pain. Turns out- I had an immediate painful reaction to the PST. I went home with a prescription for Elmiron, and not much hope. My doctor didn't know a lot about IC past the PST and prescribing Elmiron. He suggested we do DMSO instillations, but I told him I needed more time to research what was going on with me. He sent me to a physical therapist who worked with pelvic floor problems in the meantime.
It was then that I found the ICN. I found out that there was a diet that I should be on. That there were medicines that might help me besides Elmiron, and that many people found their way out of the pain. I found it hard to believe that could happen to me, but I went back to my doctor the next week, with a request... put me on hydroxyzine. I started going to PT, and found a urologyst who specialized in IC. He immediately started me on amitriptyline, and told me that he didn't think further testing was necessary. He believed I had mild IC, and that the main cause of my pain was my tight pelvic floor. He made sure I was on the diet, and told me to continue my PT.
By this time, the pain was already starting to lessen because of PT. I was concerned because I was having some bladder symptoms: pain on urination, a general feeling of "uncomfortableness" in my bladder. My gyno said I had probably been having these issues all along, but that they had been masked by my massive pelvic pain. I made sure to stick closely to the diet, and take my medicine every day. By early December, I realized I was having more good days every week. I managed to come back to work full time, but still never left home without my heating pad! By mid December, I realized one day that, while I still brought my heating pad to work, I hadn't gotten it out to use in days. By January... I didn't bring it with me anymore.
In early February, I found out I was pregnant. I immediately stopped hydroxyzine and amitriptyline, but decided to stay on Elmiron. Six weeks into my pregnancy, I realized my pelvic pain was coming back. Going off the amitripyline definitely made a difference. At seven weeks, I went in for an ultrasound, and we found out there was no baby- only an empty sac. My gyno told me it was most likely a blighted ovum, and to come back for another scan in a week. When I came back a week later, my pelvic pain was pretty awful again, and there was still no baby. I got cyctotec to start a miscarriage, some Vicoden for the pain, and strict instructions to immediately restart my meds.
The miscarriage was much worse emotionally then physically. We do intend to try again, as soon as I restart periods. I've been back on my meds for 3 weeks now, and am feeling amazing. I've had no pain- bladder, pelvic, or urethral, since about two days after I restarted meds. I've been experimenting with the diet, to see what I can handle. (This has been the first time I've done this since November). Turns out... there isn't much I can't handle. I think I am one of the lucky ones for whom Elmiron performs its magic. I feel like me again- the me I was before last summer.
I know I will have setbacks, and that things won't always be this good- but I'm just so thankful I've FOUND good again, when I was so sure that it wouldn't ever be the same as it used to be. And it's not the same- now, when I wake up and I'm not in pain- I'm grateful. I don't take it for granted, and I never will again. For anyone reading this, at the beginning of the IC journey- I was there. I was where you are now. Hopeless, crying, in pain every day... and you can be where I am now. Don't give up.
03/11 
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