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edeno pain off/on? edeno pain off/on?

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Unread 02-28-2002, 11:28 AM
edeno pain off/on?

My doctor says she thinks I have edenomyosis. My endo biopsy came up clear so I said to her, "How do you know I have edeno?" She said the only definative way to know is post hysterectomy. She said my symptoms are good indicators (enlarged uterus, prolonged bleeeding even after I have had an ablation of the endometrium 6 years ago). My pain is at the END of my periods and it is extreem lower back pain not your typical pre-menstrual cramping. Now this month came along and is the first month in 6 I haven't had this pain so I'm thinking, does this go away? Is that possible or will I again be in pain next month? I'm not ready to just jump into surgery. Now, I say this because I've had a pretty good month but that could change in two weeks if I am doubled over in pain again! ANybody else have other means of diagnosing edenomyosis? Is your pain sometimes on and sometimes off? Am trying to make an informed decision about a hysterectomy especially until 2 weeks ago I had never even heard of edenomyosis!! THANKS!
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Unread 02-28-2002, 11:36 AM
edeno pain off/on?

Get a 2nd opinion!!! Someting doesn't sound right. Endo pain is off & on -more severe in menstral times. From what I read on internet everyone's pain is different. Check out www.webmd.com if you haven't already. Good Luck to you.

s Loralii
Unread 02-28-2002, 02:23 PM
I believe that you are talking about

a disease known as Adenomyosis.

I had adeno prior to my hyst. and yes, the pain is on again/off again. There were months that I could go 2 or 3 months with very little pain, up until the end.

Towards the end, I began having severe pain almost all month long (it felt like I was carrying a 20 lb. bowling ball in my pelvic area), I began having heavy, gushy, long periods and severe cramps.

It really got to be more than I could handle. Through all of the research that I did, I found that the only cure for adenomyosis is a hysterectomy.

I had my hyst. on 1/8/02 & I have never felt better and I would do it over again if I could go back in time. I do not regret my decision. However, I do know that it is a very hard decision to come to.

I was tired of missing my life. It was not a "quantity" of life issue, but a "quality" of life issue.

I am very happy with the outcome and just thought I would give you my two cents worth.

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Unread 02-28-2002, 06:36 PM
Funny that you say.....

Me too. I'm in pain most of the time, but each day is different.

For the past two days, I don't feel any ovary pain. No sharp pain, no burning, no nothing. Just lower back pain and left hip pain. Then I say to myself, "What am I thinking, having this surgery anyways?" Then, the next day, holy cow, I'm glad I didn't cancel.

Women are absolutely resiliant! (sp?) As soon as we have one day that we feel, 'ok', we think or even try to talk ourselves out of it!

Take care and God Bless you!

extra 's to you!!!

Unread 02-28-2002, 06:59 PM
edeno pain off/on?

I used to have alternating "good" and "bad" months. On good months, I still had to take the maximum dosage of Naproxen, but it would actually work. On bad months, nothing worked. I didn't even have an enlarged uterus, but I had adenomyosis just the same.

Because it can be little bits of endometrial tissue scattered diffusely through the whole uterine muscle, it's very hard to diagnose until the pathologist has the whole removed uterus to examine. Biopsies and MRI's, I gather, just aren't very helpful.
Unread 02-28-2002, 07:13 PM
edeno pain off/on?

I had a hyseterectomy because of endo and huge fibroids. I just had alot of pain with sex mainly and occasionally I'd get some bad pain when ovulating. I'd go see another doctor though, because mine had planned to treat the endo he suspected with laproscopic laser surgery. It wasn't until he got inside with the laproscope that he saw that my endo was so bad he couldn't see around any of it to laser for fear of hitting an organ or something. He also so fibroids while in there. Laproscopic surgery isn't too bad, just had two tiny cuts and just a couple days of it being sore in those areas. I did notice alot of other symptoms with the endo though, I was cold all the time, due to blood loss I think, I bleed really heavy during my periods, yes, lower back ache, perhaps you've got a uterus that's tipped back that way like mine was hence the back aches, but besides the pain during sex, my biggest complaint was always feeling TIRED. I'm only 3 weeks post op, so I don't know yet if I feel better from the surgery or not, I can't take hormones for 3 more weeks to kill of any left over endo, I bet I'll feel really good once I get on the hormones. I'm starting to feel grumpy and I get freezing cold flashes that keep me up because nothing will make me warm. But so many women have told me that they felt a ton better afterward, that I'm convinced I will to once healed well.
Unread 03-01-2002, 09:58 AM
edeno pain off/on?

I have possible adenomyosis too....had a laporoscopy last June and my uterus was found to be enlarged and very spongy in spots...doctor had me take the lupron injections for 6 months which did stop the pain and bleeding...BUT now, 3 months off the lupron, the pain is back and the clotting is just as bad...before the lupron I would have bad months and not so bad months, as far as pain...the clotting seemed to be the only consistant thing! From what I have read, adeno is very hard to diagnose for sure unless you have a hyst...I have sharp "knife like" pains after intercourse and many times during the months, I am in bed for atleast the first two days of my periods and the clotting is so bad, I can feel it sometimes when I walk....but some months are better than others! I would definately get a second opinion....keep us posted!
Unread 03-01-2002, 11:07 AM

Before I came to this board I wasn't sure I really did have Endo. I had a lapa. and the dr. couln't find anything. But he told me before surgery 75% of the time you don't. It was really eating at me maybe I was having this surgery when I really didn't need it. I've been on Lupron for 4 months so I guess I had forgotten how bad it really did get. I remember bleeding for 7-10 days, clotting 2-4 days, being in bed 1-2 days and generally miserable for 3 weeks out of the month. I still wasn't sure if I really needed surgery! Now I remember the heavy gushy periods, the HUGE clots, and the pain during periods that felt like I was in the begining stages of labor. Back Labor. I never knew lower back pain was a part of endom! I would have cramps that would go from my uterus and wrap around to my lower back and even run down to my thighs. How could I forget that!!!!
Anyway, If it wasn't for all of you I don't think I would be going to surgery with peace of mind. I can't thank you enough for just sharing your stories, and being hear. This forum has brought me more information, peace and comfort than anyone or anything else has so far.

I am having surgery March 21. A TVH/BSO and have been agonizing over the need for all of it. Thanks again.


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