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mpathia 02-03-2003 03:43 PM

Confused About Endometriosis...Please Help
I had posted a message regarding HRT before. I received some very good information, however; I am confused about the responses concerning endometriosis. I had a total hysterectomy because of endometriosis. From what the responses indicate, it can return, even after a total hysterectomy.

My doctor told me that the ovaries produce the hormones that cause endometriosis...I thought that was why a hysterectomy was my only option.

Now, my question is...can it return AFTER the ovaries are removed? I didn't know that was possible. Does anyone have any info on this? This is very concerning to me--especially because I am having terrible problems with HRT. I thought the hysterectomy was going to solve my problems, but now I am confused. Please help!

B-Jean 02-04-2003 06:57 AM

Hi mp,
I had a hysterectomy almost a year ago(Feb. 15th, 02) for endometriosis. Endo can grow on other organs-i.e. bowel, bladder,etc. If not all was seen during the surgery and not removed it is called residual endo. What makes it grow back rapidly is HRT's-so if you took HRT's immediately after surgery(now found to be a no-no) it can make it come back with a fury. I did'nt learn this until recently. I was given an HRT before I even left the hospital. I went to a gyn at Mayo Clinic and she said I still have endo(I thought I was hearing things). I now am on a shot a month(depo-lupron) for 6 months and if that does'nt work they will have to do surgery again! If that happens I will be having a specialist on endo do the surgery. There is a place I am checking into now. Endometriosis Care Center-am trying to find out where it is-will post it when I find out.
Good Luck, B-Jean

mpathia 02-04-2003 12:45 PM

Thank you, B-Jean for the info. My doctor prescribed Prempro (which I could not tolerate), now he is giving me another--Estratest H.S.

I am not experiencing any menopausal symptoms as yet, so I really don't understand why I should take an HRT at all. He never told me about the chance that HRT may cause the endometriosis to return. The doctors seem to push HRT, so it is hard to figure out what is best. Do you happen to know how long you should wait after the surgery to ensure no further endometriosis growth? It doesn't seem that the doctors give you enough information to make a informed decision. That's why I'm concerned.

Also, I know that bone mass loss is a factor, however; can calcium supplements be taken to avoid HRT?

You guys are a great information source and I really appreciate all the responses. I've been trying to get info on the web, but to tell you the truth, a first-hand experience is more informational.

Thanks again!

Karla 02-04-2003 02:38 PM

I agree with B-jean. I had a hysterectomy a couple years ago due to endometriosis after 6 months of lupron failed to get rid of it. My dr made me wait 1 1/2 years after my hysterectomy before offering me HRT. He said if I started taking hormones my body runs a risk of getting endo back again. Then he offered after a couple years to put me on estratest or premarin. He said the hormones were low enough that they shouldn't flame up endo but yet it was possible they could. I was having no symtoms of metapause. I have decided also with new news about HRT causing health problems in heart etc. that I have decided HRT is not for me.

B-Jean 02-05-2003 07:33 AM

Hi again,
The gyn at Mayo ordered a bone density test, got my results. I have osteopenia(numbers are close to osteoporosis). I found out depo lupron can cause bone loss-now what to do!!! I just feel like crying :(
Sorry, B-Jean

Pippin31 02-09-2003 10:56 PM

Hi everyone,
I hope this isn’t out of line to ask, but how old are you all? I am 28 years old. I have struggled with twisting pain in lower right side since 13. However, one day it hit and never went a way? I went through every test plus a lapro and nothing was found (except a 5 cm cyst on left). I was put on Lupron and the pain went a way. Doc. Said it is a sure sign of endometriosis. I have been on 1 ˝ injections for 1 ˝ years. He feels it is time to come off. Said I have over extended it as it is. Now, I did go off after my FIRST 6 month treatment and doubled right back over. That is why he put me on it again. Now the past 3 months I have had twisting pain with spotting. He wants to do another lapro. My concern is at 28 that my next step will be a hysterectomy. For any of you who suffered with endometriosis, did you have like a “twisting” feeling. Feels like an ovary in a vice grip!!! Bowel and bladder problems as well. Even riding in a car made the pain worse. Please let me know. My last shot is in 2 weeks and I don’t know what will become of this.

j27 02-14-2003 02:47 AM

Yeah, I know that "twisting feeling" all too well! It is horrendous, and so hard for people to understand- I am 29 and due for my 1st laparotomay next Wednesday. The are pretty sure I have endo too, but they have also found some fibroid tumors- the dr. told me that these tumors can twist off on their own and lose oxygen and start "sloughing off". This or cysts "bursting" and even endo can all cause twisting and stabbing pain. My fibroids have grown a lot and have started to press on my bladder- so I am also experiencing bladder and bowel pain/problems. I have been in constant pain for 2 1/2 yrs- the stabbing twisting pain comes on sharply and often lasts a long time- it's almost nausiating, huh? A laparotomy is a bigger incision- like a c-section and the recovery is longer- but they can see more and take out more (cysts, scar tissue, fibroids...) there are other options before a hysterectomy- I know, I'm trying 'em all because all though this pain sometimes makes me want to throw in the towell- I would love to someday have a child. See a specialist if you aren't getting all the answers- good luck!

Pippin31 02-14-2003 01:39 PM

Hi J27,
Man I thought I was losing my mind. So, other’s suffer with “twisting” too??!! It is so hard to describe to doctors..they ask” is it a sharp, stabbing, burning?” I say no “twisting”. They look at me like I am nuts. Anyway, I do see a fertility specialist who put me on Lupron which did help!! Now the pain is coming back on the Lupron so he wants to go in and look around. (I have been on Lupron 1 ˝ years which puts me into temp. Menopause).
Please ,Please ,Please let me know how things work out for you. Good luck with your surgery. By the way, did they ever try you on Lupron?

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