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My Story
Well, it's almost 2:30 a.m. and I can't sleep so I thought I'd "write a bit" while I'm waiting for some pain med to kick in.
I started having alot of UTI's from about 16 on. One thing I have thought about is that I had severe acne as a teen and I was on Acutane (sp?) for quite awhile. While it did help my acne, what it also did was start up alot of my IC symptoms........pain in my bladder and vagina. I was very "red and irritated" and so the dr took me off of it. Had never seen this side effect where it would "dry out the vagina".
And so the years went by, as with a few pregnancies and births. And right along with, of course, UTI's every time I turned around. (I later found out that most of these WEREN'T UTI's, they'd just throw antibiotics because I had the symptoms, but it never really helped.)
I did go to a Urologist in desparation after my third child was born. He was terrible. Not a very good bedside manner. I was scared to death anyway and two of the first questions he asked me was if either my husband or I had had sex with someone outside the marriage and if we practiced anal sex. I was horrified! He started me on treatments of (I'm not sure what you call these, the instills?) a cocktail he'd mix up and put in my bladder. The ones that leave you smelling like garlic? It was once a week, the nurse did it, and I would have to hold it in my bladder for 20 min or as close to that as I could. It felt like acid. I'd leave in tears. It was horrible. I stopped going.
After my fourth child was born, it hit horribly. I kept calling the ob/gyn, with symptoms of a UTI, he gave me about 5 rounds of different antibiotics and suggested a urologist. I was terrified. The symptoms calmed down. I thought the worst was behind me and hoped all would be okay.
Right before my fifth child was conceived it all started up again. Horrible pelvic pain, bladder urgency, everything. A new gyn suspected IC and consulted a different urologist than the one I'd previously seen and sent me in. I was diagnosed within the month and was just about to start treatment (Elmiron) when we found out I was pregnant. While ON birth control pills. It was probably antibiotics that did it but it was a horrible pregnancy. The urologist tried to "help me through the pregnancy" as best he could but I had to wait until I'd had my daughter before we could really start treatment.
I've been on Elmiron and Elavil for 4 months now. No results yet. We started atarax last week. I'm praying the elmiron will kick in soon. He keeps saying we're going to have to try instills if we don't get results soon from this but I really don't want to go that route again.
Worse yet, the Vicodin I've been using for the past 10 months to manage the pain stopped working. He put me on Percocet, but a low dosage. He just wasn't comfortable with anything stronger, and so I have an appointment the second week of september to see a pain management specialist. I'm praying it's a good one as it's the only one in this small town.
I'm praying for a remission. I did have one about 3 yrs ago that lasted about 6 months that was WONDERFUL. I felt normal, for the first time ever. And I hold on to hope, every day. This board has been a Godsend to me, as unless you've been there, most people don't understand.
Thanks for listening to my story, and for all the times you've helped me through the hard times. I've learned so much through this board. And I'm thankful for that. It gives one the hope and the knowledge they need to try to have as normal of a life as they can.
I started having alot of UTI's from about 16 on. One thing I have thought about is that I had severe acne as a teen and I was on Acutane (sp?) for quite awhile. While it did help my acne, what it also did was start up alot of my IC symptoms........pain in my bladder and vagina. I was very "red and irritated" and so the dr took me off of it. Had never seen this side effect where it would "dry out the vagina".
And so the years went by, as with a few pregnancies and births. And right along with, of course, UTI's every time I turned around. (I later found out that most of these WEREN'T UTI's, they'd just throw antibiotics because I had the symptoms, but it never really helped.)
I did go to a Urologist in desparation after my third child was born. He was terrible. Not a very good bedside manner. I was scared to death anyway and two of the first questions he asked me was if either my husband or I had had sex with someone outside the marriage and if we practiced anal sex. I was horrified! He started me on treatments of (I'm not sure what you call these, the instills?) a cocktail he'd mix up and put in my bladder. The ones that leave you smelling like garlic? It was once a week, the nurse did it, and I would have to hold it in my bladder for 20 min or as close to that as I could. It felt like acid. I'd leave in tears. It was horrible. I stopped going.
After my fourth child was born, it hit horribly. I kept calling the ob/gyn, with symptoms of a UTI, he gave me about 5 rounds of different antibiotics and suggested a urologist. I was terrified. The symptoms calmed down. I thought the worst was behind me and hoped all would be okay.
Right before my fifth child was conceived it all started up again. Horrible pelvic pain, bladder urgency, everything. A new gyn suspected IC and consulted a different urologist than the one I'd previously seen and sent me in. I was diagnosed within the month and was just about to start treatment (Elmiron) when we found out I was pregnant. While ON birth control pills. It was probably antibiotics that did it but it was a horrible pregnancy. The urologist tried to "help me through the pregnancy" as best he could but I had to wait until I'd had my daughter before we could really start treatment.
I've been on Elmiron and Elavil for 4 months now. No results yet. We started atarax last week. I'm praying the elmiron will kick in soon. He keeps saying we're going to have to try instills if we don't get results soon from this but I really don't want to go that route again.
Worse yet, the Vicodin I've been using for the past 10 months to manage the pain stopped working. He put me on Percocet, but a low dosage. He just wasn't comfortable with anything stronger, and so I have an appointment the second week of september to see a pain management specialist. I'm praying it's a good one as it's the only one in this small town.
I'm praying for a remission. I did have one about 3 yrs ago that lasted about 6 months that was WONDERFUL. I felt normal, for the first time ever. And I hold on to hope, every day. This board has been a Godsend to me, as unless you've been there, most people don't understand.
Thanks for listening to my story, and for all the times you've helped me through the hard times. I've learned so much through this board. And I'm thankful for that. It gives one the hope and the knowledge they need to try to have as normal of a life as they can.
I didn't have luck with Elmiron, and though the Elavil worked for awhile, it has worn off and I can't take it anymore. The instills were nightmares!!! Now I'm going on to Interstim for the urgency/frequency/urge incontinence. IC is rough! I see a pain management doc, and it is the best thing in the world! He understands that I am going through pain and that I need help, and he is more than willing to help! My uro was verrrrrrrrrrry leary of prescribing narcotic pills, and the pain management doctor wants to! It's like night and day! Anyways, I wish you lots of luck in treatment soon, and I'm sure I'll see you around the message boards!!
It is nice to know more about you. I didn't know you had so many kids. What are their ages now?
But they were trying to be helpful and I appreciated that.
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