ENDO Messages for April, 2007: Re: Alot of questions and no answers...

Re: Alot of questions and no answers...

From: D (anonymous@obgyn.net)
Tue Apr 3 23:16:23 2007

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Hi Tasha -

I'm sorry you are having a difficult time. What you describe could be endo - a lot of it sounds familiar to me and probably others here, too. A lot of women with endo have similar experiences, going through a lot of GI and other tests that often don't turn up anything. It's still good that you had all the tests because they ruled out a lot of other stuff. To diagnose endo you need to have surgery, called a laparoscopy, during which your doctor should remove (excise) any disease they find and take tissue biopsies. A pathologist examines the biopsies and makes the final diagnosis.

Endo is not very well understood, and finding a good doctor to treat you can be difficult - a lot of women travel to have surgery with one of the handful of endo specialists in the country. Learning as much as you can about the disease is very important - many women find that they quickly know more than their obgyn! (which is a sign to find a new doctor)

Many women who have endo have serious chronic pain - if you are in pain and your doctors aren't helping you with it you may want to ask for a referral to pain management. I'm in pain management, waiting until I can have surgery with a specialist, and my pain doctor has made a huge difference. There are some posts on this list over the past few weeks that explain more if you browse back through them or search the forum for "pain management".

There are also a couple links at the bottom of this message to yahoo groups I've found very helpful - the endodocs group is a good place to look for a specialist or an obgyn, and the ERC support group has a lot of very knowledgeable and helpful members. Both groups have archives you can search or browse.

Good luck, and please don't hesitate to ask questions. Dealing with endo (or chronic pain of any kind) can be terribly frustrating and you'll find a lot of women in these groups who can relate to your problems and hopefully help you find answers.

At Tue, 3 Apr 2007, Believe wrote: >
>My name is Tasha, and I just came across this site while trying to look
>up some things about endo. About a yr after I first started having my
>period I started experiencing really really bad cramps. So bad that no
>medication would take the pain away. I would lay down and huddle up in
>a ball and just cry. It was all I could do. No matter how many heating
>pads, hot baths, lying on my back with feet in the air, pain meds, I
>took or did the pain would not let up. I dreaded my period every month!
>About my 4th year into my period the pain let up incredibly and I didnt
>have that bad of pain again for about 1 1/2 yrs. Its starting to come
>back now about every other period. I recently got a yeast infection. Or
>so I think it was because it itched really bad and I was discharging
>alot. I took some over the counter medication and ate garlic for about
>a week. The itching went away. My last 6 periods have been so
>irregular that I keep taking pregnancy tests to make sure Im not
>pregnant. My last period lasted for only three days and then two days
>later I started spotting for about 4 days. My periods have always been
>irregular in one form or another. A few months ago I would get really
>bad abdominal pain everytime before and during my period for about 3
>periods. I went to the ER prly 4 or 5 times. The first time I went
>they found nothing. The second time I went they told me I had a cyst on
>my ovary after doing a pelvic exam. The third time I went they did a
>cat scan and found nothing. The fourth time they did a blood test and
>another xray and said I didnt have a cyst on my ovary and they must of
>diagnosed me wrong the second visit!! The fifth time they pretty much
>just gave me more vicodin and sent me home. I ended up finally making
>an appt with my doctor because not only was the pain not going away and
>my stomach had bloated to where it was firm and I looked pregnant. The
>doctor imediately set me up for a lower abdominal ultrasound. Found
>nothing. Then set me up for an upper abdominal ultrasound. Found
>nothing. Did a lower and upper G.I. Series. Found nothing. Did a
>lower bowel series. Found nothing. I finally gave up on all the tests
>that were doing nothing for me. Since then Ive only had the pain in my
>abdominal once and not as bad as before. Now my periods continue to be
>irregular and every once in awhile very painful.... Can someone answer
>anything for me? I would really apppreciate your thoughts.

-- Find an endo specialist in the ERC's EndoDocs group: http://groups.yahoo.com/group/EndoDocs/

Try an excellent endo support group: http://groups.yahoo.com/group/erc/

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