Hello:

My name is Julie and I’m new here…Not sure if anyone can answer my questions, but I thought it would be worth a shot to ask.

I’m 46 have been very healthy up until last January of 2005. I had a total Hyst. (everything removed) back in 2003. I’m on HRT Vivelle Dot and doing great on it.

Last January I remember after sex around (3) weeks later I started to have cramps (period like cramps) went to the doctor checked me out and put me on Flagel…Did nothing….White count was up 19,000 so she put me into the hospital for 5 days…I’ve had every test known to man kind, Altersound, MRI, CT, Lap, all AOK…I’ve also been tested for PID, etc. All AOK….I’ve been with the same partner for over 9 years….

However its one year later and I still have the cramps, flush, hot feeling, white count is 14,700..I just had a “LAP” and he said he saw nothing and it looked good…

Does anyone have any ideas what I should do next…I was on a HMO (and hated it) I’m back on a PPO with my old doctor who I love….She is trying to figurer this out….But can’t seem to find out what is wrong and why I feel so bad 99.9 percent of the time.

Thank you
Julie

Hey Julie-
Sorry to hear you're feeling so poorly. Been there--very frustrating, and I'm sure you're tired of feeling so crummy. Mind if I ask why you had your total hyst? That may shed some light into what's going on. My gyn situation was very similar to yours. At 35-just had twins vaginally. W/out going into too much gory detail-4 mos,one ovary removal and 2 D&C's later I had a total hyst.(Am on Vivelle Dot too and LOVE it...my symptoms/hot flashes started on day 3 in the hosp.) I still had a very high WBC and every test known to man. They initially thought a piece of tissue was left in during the first D&C and that would cause infection. Not so easy. Cut to the chase-took it all out. I was also on home IV antibiotics for 3 wks(twice--once b/f and once aft the hyst)24/hrs a day. Slowly but surely (over almost a year)the WBC went down, and in that area things are fairly normal. They had many "theories" based on my situation, but finally called it an infection of unknown origin-the term was used after WBC came down-never when I was sick. I personally think it had to do with scar tissue and adhesions I had in my abdomen. Did/do you have scar tissue or adhesions? (or excessive bleeding?) ST and Adhesions don't show up on CT/MRI's...and I had a ton of ST. Every time my dr did a lap he's scrape it away--which was good, but just created more. They hyst scars themselves created more adhesions. I'd never known anyone else in this situation but 2 yrs ago my friend's sister had the exact same thing, and now you. Weird huh. I think they just don't know what the heck to do--so they take blood, wait, watch, and stay with the program or try something else. Very difficult when you're the patient. I'm really glad you're w/a dr you like alot--that makes all the difference.

Hang in there-(sorry if I got too personal--and too winded!)Get your rest--and most importantly-take care of yourself! You are not alone!! Gina

Hi:

No I don't mind you ask questions whatsoever...I had my Hys. due to bleeding all the time, I would have a period for 3 weeks stop for a week and bleed again, it was like from day one...At 43 I decided to go for it....I just had a LAP, he found very little scar tissue said everything looked GREAT, he did find one little adhsh. on the bowel and removed it...

This all started right after sex one day (never a problem before that day), the cramps started 2 weeks after....They had me on every pill you can think of (except I react to so many its hard for them to give me much) I see a allergest this month), she then said they can try different pills...

My white count goes up and down up and down, but I hate that HOT/FLUSHS feeling like I have a fever and the flu all at once and then the pain/cramps come on....Then it goes away for a few days and I feel fine, then it just come back....She thinks in a deep infection somewhere in my body that they just can't find...She is going to send me to an infecious disease doctor after I see the allergest this month....It I take the Zitromax I feel good for a week or so, but I've been on so much of it, not sure how much more I can take of it...

I'm going to print out your email and show her, maybe that can help her get to the bottom of this, I just want my life back, NEVER sick until that day....Had my Hyst. went on the Vivelle Dot and never looked back, felt GREAT...

Again, thank you so much for your email...

Take care
Julie