Gayle123
06-20-2006, 05:59 AM
I'm new here, tend to get long winded, but just found you, and wanted to share, and hopefully get some tips, and info (have already read 12 pages & Drs. transcripts ) & realized just how ignorant I am about IC! A Gyn I was referred to told me he was 99% sure that's what I had based on my exam and history. Am seeing a new Uro next month, saw the last one 7 years ago. Just dealt with it since then. Maybe my story can even shed some light for others.
I am 55. It began with UTI's actually, I suppose on honeymoon at 17, off and on for years. The IC SXs began at age 45, with urgency, tenderness, painful sex, burning, some bleeding.
Yearly physical pelvic exam I aways explained to Dr. the pain was due to my "tender" bladder, and to be gentle. At age 49 was sent to Uro due to some bleeding, for Cysto, he found nothing, and explained away my VERY painful bladder and urethera, as just one of those things some people have, and the bleeding due to some tiny blood vessels in my urethera that tend to pop from time to time, nothing to worry about. I felt very sad, knowing I had to live with this for god know's how long, with, among other thing's my sex life being horrible with a wonderful man I had just married! What would this do?:confused:
At the very best, it went at times to a dull pelvic ache, to the awful burning, bladder pain, back ache, but no UTI to go with it. I dreaded the thoughts of going places where I had to do much walking (painful) or riding, (stopping to pee) the pain intruding into every facet of my life. Urgency, up multiple times at night, pain keeping me awak.
Last year, I had a new primary take over my yearly exam, he noticed my painfful exam and thinking maybe an ovarian issue, sent me for a pelvic ultrasound, both inner and outer, filling the bladder for one, then emptying it, and using the wand for the other. Well, the full bladder one was horrid, but the one where she used the internal wand (very gently, I might add) was one of the most painful things I've ever had, and I spent the night in agony, even taking Vicodin I had left over from some dental work. If you've ever had this procedure, you know for a normal person, this should cause no pain what so ever.
So, when the new Gyn I saw last year offered to refer to the Uro, I declined at the time, thinking there was really nothing that could be done for IC, from what I knew about it (obvious very little) and told him if I changed my mind I would let him know.
So, last week, when I had a big flare up of symptoms, I decided to try out one of those AZO kits from the pharamacy to see if it showed an infection; I had a feeling it would not; it just did not feel like a UTI. Besides my usual Dr. was on vacation. Got one, it showed a bit of inflamation, but zero bacteria. Repeated the next morning, same thing, less inflamation. Later on, the same. Never any bacteria.
So, after deciding to read up more on IC, I was shocked to see "me" in so many of these posts. Although many of you here are in worse shape than me. I had NO idea IC could have so many faces. So I called and made that appointment, which is next month. I just hope this Dr. is is least familiar with IC issues somewhat.
Also, I have other health issues that may or may not fit in here; Hypothyroid (treated) for 32 years, Seizure disorder, unknown auto-immune issues with ANA of 1:640, that Drs feel may develop into something definitive in near future. Sick "flu" feelings from time to time, causes unknown.
At least, after reading here, I'll be prepared with questions to ask when I get there!
If you've read thus far, thanks for listening. :wink:
I am 55. It began with UTI's actually, I suppose on honeymoon at 17, off and on for years. The IC SXs began at age 45, with urgency, tenderness, painful sex, burning, some bleeding.
Yearly physical pelvic exam I aways explained to Dr. the pain was due to my "tender" bladder, and to be gentle. At age 49 was sent to Uro due to some bleeding, for Cysto, he found nothing, and explained away my VERY painful bladder and urethera, as just one of those things some people have, and the bleeding due to some tiny blood vessels in my urethera that tend to pop from time to time, nothing to worry about. I felt very sad, knowing I had to live with this for god know's how long, with, among other thing's my sex life being horrible with a wonderful man I had just married! What would this do?:confused:
At the very best, it went at times to a dull pelvic ache, to the awful burning, bladder pain, back ache, but no UTI to go with it. I dreaded the thoughts of going places where I had to do much walking (painful) or riding, (stopping to pee) the pain intruding into every facet of my life. Urgency, up multiple times at night, pain keeping me awak.
Last year, I had a new primary take over my yearly exam, he noticed my painfful exam and thinking maybe an ovarian issue, sent me for a pelvic ultrasound, both inner and outer, filling the bladder for one, then emptying it, and using the wand for the other. Well, the full bladder one was horrid, but the one where she used the internal wand (very gently, I might add) was one of the most painful things I've ever had, and I spent the night in agony, even taking Vicodin I had left over from some dental work. If you've ever had this procedure, you know for a normal person, this should cause no pain what so ever.
So, when the new Gyn I saw last year offered to refer to the Uro, I declined at the time, thinking there was really nothing that could be done for IC, from what I knew about it (obvious very little) and told him if I changed my mind I would let him know.
So, last week, when I had a big flare up of symptoms, I decided to try out one of those AZO kits from the pharamacy to see if it showed an infection; I had a feeling it would not; it just did not feel like a UTI. Besides my usual Dr. was on vacation. Got one, it showed a bit of inflamation, but zero bacteria. Repeated the next morning, same thing, less inflamation. Later on, the same. Never any bacteria.
So, after deciding to read up more on IC, I was shocked to see "me" in so many of these posts. Although many of you here are in worse shape than me. I had NO idea IC could have so many faces. So I called and made that appointment, which is next month. I just hope this Dr. is is least familiar with IC issues somewhat.
Also, I have other health issues that may or may not fit in here; Hypothyroid (treated) for 32 years, Seizure disorder, unknown auto-immune issues with ANA of 1:640, that Drs feel may develop into something definitive in near future. Sick "flu" feelings from time to time, causes unknown.
At least, after reading here, I'll be prepared with questions to ask when I get there!
If you've read thus far, thanks for listening. :wink: