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Hey everyone!
I have been lurking on this site since 2006 and finally have decided to register and get involved, and with everything going on lately, it's nice to know I'm not alone. My very wordy story:
I was healthy as a horse as a child, rarely sick with anything besides the common cold or ear infection. I was in nursing school when my symptoms started. Symptoms started in 2004; frequency/urgency, bladder pressure/very mild pain, and painful intercourse. Went to multiple doctors (obgyns, internal medicine), and they were more concerned about the painful intercourse at my young age and brushed off the bladder complaints, even though my bladder was driving me crazy. I had pelvic exams, std tests that all came back negative. I had countless urine cultures and urinalyses come back completely normal. I knew it wasn't in my head, even though I think many of those doctors thought it might be.
When I got referred to another obgyn about the painful sex, he finally asked the question that led to the road of diagnosis: how many times a day do you go to the bathroom? As I started explaining how my life revolved around the toilet, he kept asking more questions that nobody else ever asked and I felt as if he was reading my mind! He understood! He said those magic words: "I think I know exactly what you have", something called interstitial cystitis. This was in Feb/March 2006, a year and half after the symptoms started, and I was almost done with my 3rd year of nursing school (IC was not taught at my nursing school). He conducted the potassium sensitivity test, which was immediately positive. The potassium felt like acid eating away at my bladder instantly. I can't describe that pain. I was then referred to a urologist.
Based on my symptoms and potassium test, the urologist thought I was a classic case IC patient and did not see the need to do a cystoscopy at that time. He put me on Elmiron (which I still take), Detrol (stopped taking due to retention), and Elavil (stopped due to severe drowsiness). I had some urodynamic testing done at the time but due to the retention from the detrol, they couldn't get good results. The Elmiron started working about 5-6 mo. later and along with dietary changes, I went pretty much into a period of remission for the rest of 2006, 2007, and the first half of 2008.
The pain started getting noticeable in 2008, and one day I finally ended up in the ER because of it. I was referred to a urologist (I had moved away from my last one). I should have known this was going to go nowhere when he walked in the room and said to the effect that young people don't usually have IC and if they do, it's very mild.
He diagnosed me with Pelvic floor dysfunction (still dealing with) and scheduled pelvic floor PT and an in office cystoscopy. Well the cystoscopy was excrutiating and I was screaming at him to pull out the scope within seconds, needless to say, he didn't get a very look inside my bladder. 
With him, I got a couple trigger point injections and finished a course of PT and things were slightly better. I stopped seeing him asap due to what I feel was a serious lack of compassion.
Fast forward to early 2009 to the months leading up to my wedding, the painful intercourse was out of control and the frequency was worsening, but I was just trying to ignore it, figuring it was due to wedding stress. Thankfully, my now husband has always been a saint through all of this. When I moved after my wedding, my new simply PCP told me to use more lube. That didn't work. Over the past year, it got bad enough that we could no longer have sex.
At this years annual exam, my PCP said I had what appeared to be vaginal atrophy, so that with the increased pelvic pain, painful sex, and frequency, led to a new obgyn referral. This one takes a special interest in IC patients and is very knowledgable.
He diagnosed me with severe vulvar vestibulitis and was recommending a vestibulectomy. I was too tender for another round of PT for the PFD at this point. I had 4 weekly instills of heparin with no improvement so he referred me to his friend, who is a gyn that is a pelvic pain specialist. He said my pelvic pain and VV was so bad that he recommended a v. vestibulectomy, exp. laparascopy, and cysto with hydro., all of which I am now recovering from.
My 2 IC-knowledgable gyns both did my surgery a couple weeks ago
. They found and removed endo, dx pelvic congestion syndrome, and was able to completely confirm moderate IC (I was shocked when I saw the video and pictures). They took out a lot of vulvar tissue due to my inflammation running much deeper than expected.
As I sit at home and recover (had a couple complications that will have me out of work till early Feb), it's blatantly clear that I will never be able to escape these health issues, even at my young age. I'm so grateful that I have found 2 compassionate doctors willing to get to the bottom of things and get me on a treatment plan. It's just nice to know that I'm not alone in this. I have been so comforted on my bad days and nights coming onto this site and seeing uplifting posts. I will no longer be a lurker, I'm stepping up and saying hello fellow IC'ers!! If you made it down this far and read all of this, I'm amazed. So sorry this was so lengthy. It has been a long road.
I have been lurking on this site since 2006 and finally have decided to register and get involved, and with everything going on lately, it's nice to know I'm not alone. My very wordy story:
I was healthy as a horse as a child, rarely sick with anything besides the common cold or ear infection. I was in nursing school when my symptoms started. Symptoms started in 2004; frequency/urgency, bladder pressure/very mild pain, and painful intercourse. Went to multiple doctors (obgyns, internal medicine), and they were more concerned about the painful intercourse at my young age and brushed off the bladder complaints, even though my bladder was driving me crazy. I had pelvic exams, std tests that all came back negative. I had countless urine cultures and urinalyses come back completely normal. I knew it wasn't in my head, even though I think many of those doctors thought it might be.
When I got referred to another obgyn about the painful sex, he finally asked the question that led to the road of diagnosis: how many times a day do you go to the bathroom? As I started explaining how my life revolved around the toilet, he kept asking more questions that nobody else ever asked and I felt as if he was reading my mind! He understood! He said those magic words: "I think I know exactly what you have", something called interstitial cystitis. This was in Feb/March 2006, a year and half after the symptoms started, and I was almost done with my 3rd year of nursing school (IC was not taught at my nursing school
). He conducted the potassium sensitivity test, which was immediately positive. The potassium felt like acid eating away at my bladder instantly. I can't describe that pain. I was then referred to a urologist.Based on my symptoms and potassium test, the urologist thought I was a classic case IC patient and did not see the need to do a cystoscopy at that time. He put me on Elmiron (which I still take), Detrol (stopped taking due to retention), and Elavil (stopped due to severe drowsiness). I had some urodynamic testing done at the time but due to the retention from the detrol, they couldn't get good results. The Elmiron started working about 5-6 mo. later and along with dietary changes, I went pretty much into a period of remission for the rest of 2006, 2007, and the first half of 2008.
The pain started getting noticeable in 2008, and one day I finally ended up in the ER because of it. I was referred to a urologist (I had moved away from my last one). I should have known this was going to go nowhere when he walked in the room and said to the effect that young people don't usually have IC and if they do, it's very mild.
He diagnosed me with Pelvic floor dysfunction (still dealing with) and scheduled pelvic floor PT and an in office cystoscopy. Well the cystoscopy was excrutiating and I was screaming at him to pull out the scope within seconds, needless to say, he didn't get a very look inside my bladder. With him, I got a couple trigger point injections and finished a course of PT and things were slightly better. I stopped seeing him asap due to what I feel was a serious lack of compassion.Fast forward to early 2009 to the months leading up to my wedding, the painful intercourse was out of control and the frequency was worsening, but I was just trying to ignore it, figuring it was due to wedding stress. Thankfully, my now husband has always been a saint through all of this. When I moved after my wedding, my new simply PCP told me to use more lube. That didn't work. Over the past year, it got bad enough that we could no longer have sex.
At this years annual exam, my PCP said I had what appeared to be vaginal atrophy, so that with the increased pelvic pain, painful sex, and frequency, led to a new obgyn referral. This one takes a special interest in IC patients and is very knowledgable.
He diagnosed me with severe vulvar vestibulitis and was recommending a vestibulectomy. I was too tender for another round of PT for the PFD at this point. I had 4 weekly instills of heparin with no improvement so he referred me to his friend, who is a gyn that is a pelvic pain specialist. He said my pelvic pain and VV was so bad that he recommended a v. vestibulectomy, exp. laparascopy, and cysto with hydro., all of which I am now recovering from.My 2 IC-knowledgable gyns both did my surgery a couple weeks ago
. They found and removed endo, dx pelvic congestion syndrome, and was able to completely confirm moderate IC (I was shocked when I saw the video and pictures). They took out a lot of vulvar tissue due to my inflammation running much deeper than expected.As I sit at home and recover (had a couple complications that will have me out of work till early Feb), it's blatantly clear that I will never be able to escape these health issues, even at my young age. I'm so grateful that I have found 2 compassionate doctors willing to get to the bottom of things and get me on a treatment plan. It's just nice to know that I'm not alone in this. I have been so comforted on my bad days and nights coming onto this site and seeing uplifting posts. I will no longer be a lurker, I'm stepping up and saying hello fellow IC'ers!! If you made it down this far and read all of this, I'm amazed. So sorry this was so lengthy. It has been a long road.
to the IC Network. I know you'll find a lot of compassion and support here.
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