Re: off-topic: pelvic pain--I need help

[Guest guest]

Becky,

The issue of just wanting to be opened up to find out what was

wrong is exactly how I felt in the few months before I was

finally diagnosed with endo.

I told my rheumatologist how much I hurt (I was bedridden most

of the time in the 9 months before I was diagnosed with endo)

and that I wished someone would open me up to see what was going

on. Because I just wanted an answer.

That's when he told me about laparoscopic surgery.

If it is indeed endo it can mess with the uterosacral ligaments

by actually growing on there. Something else I learned about

myself is that because it took so long (9 months from the

beginning of symptoms to the date of diagnosis Aug of 1997) and

didn't push harder to get a bit more help for my pain til

surgery I ended up with more problems. The problems I ended up

with is because of waiting too long my pain threshold got

destroyed so that it's much lower than it used to be even 15

years ago. And I have found that each time my endo acts up

again causing more problems my pain threshold has gotten further

destroyed.

Now because of that and other illnesses such as fibro on top of

my endo I am now dealing with something called Chronic Pain

Syndrome. I found out about it from the neurologist that I saw

earlier in the year and it makes sense especially with the falls

I have taken over the past year or so. Now I know that as soon

as I feel my endo starting to cause problems for me I let the

doctor know right away so that my pain threshold doesn't get

much lower than it is now. Same thing for whenever I get

infections (which I have been prone to since being diagnosed

with vulvodynia and when I do get them I don't get the textbook

symptoms of them the way other women do) now that I know what I

have to look for.

Kristy

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[Guest guest]

A girl I know had PID twice and both times it came from an untreated STD.

-------------- Original message --------------

Does anyone know anything about Pelvic Inflammatory Disease? I haven't been diagnosed with it or anything, but I'm trying to figure out what's wrong with me.

I have severe pain originating around the area of my ovaries and radiating around my hips, and down into my groin and thighs. It has gradually gotten worse over the last couple years. It started with really bad sharp pains (in addition to bad cramps) during my period, but within the last 6 months it's gotten to be any random day not related to my cycle. When I don't have the pain, I don't think about it, but when I have it, it's ALL I think about.

I just had an ultrasound that did not show anything abnormal. My new doc wants to see if the Prometrium (progesterone) I'm starting this cycle (because my P was tested low) will help. If not, she suggests another laparoscopy and a cystoscopy to check for endo and IC. That's fine and it may be that I have one or both of those, but I'm about ready to cut myself open and get the pain out myself! (I'm exaggerating, of course, but I really am at my wit's end with the pain.)

The only other thing I've been thinking about is the possibility that my uterine ligaments are just so stretched out and weak from my pregnancies that they just don't support like they're supposed to. That maybe this is a structural issue?

Any thoughts from you knowledge ladies?

Becky

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[Guest guest]

<<Now I know that as soon as I feel my endo starting to cause problems for me I let the doctor know right away so that my pain threshold doesn't get much lower than it is now.>> Thanks for the info, Kristy. What does the doctor do when you tell him/her your endo symptoms are acting up? Another lap? Or hormonal meds? Yes, even though I've had a lap before, 2 c-sections, and bunion surgery (this last one being just this last Christmas!), I'm at that point where I'm ready to do whatever needs to be done to make the pain stop. 6 months ago I wasn't willing to go through another surgery, but it's gotten so bad in just this last month I can't take it. If it is endo, it's GOT to be on those ligaments! If it is endo, would stretching or yoga or anything like that help at all? Becky

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