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Old 08-05-2010, 08:47 PM   #1
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Does endometriosis cause lifelong damage?

This subject came up on another thread "Can endometriosis cause nerve damage", and it left me with this question.

Does endometriosis cause lifelong damage?

Considering all the possible sites that it can attack, and all the potential for causing organs to stick together, for adhesions, scar tissue and such...what happens when the day comes that the active endometriosis is over?

My doctor keeps telling me that I am ONLY 7 years away from likely menopause, like that is the last day of my life!

What happens afterwards?

 
Old 11-08-2010, 04:37 PM   #2
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Re: Does endometriosis cause lifelong damage?

Quote:
Originally Posted by writeleft View Post
This subject came up on another thread "Can endometriosis cause nerve damage", and it left me with this question.

Does endometriosis cause lifelong damage?


Well I know someone who when they had the laparoscopy there was scar tissue. Scar tissue doesn't usually leave so for that person at least the damage is probably lifelong, however the pain seems to have decreased over the years appears mostly at period time and may eventually go away altogether when there are no more periods. The reason for this is attributed to a changed lifestyle from the past.

Considering all the possible sites that it can attack, and all the potential for causing organs to stick together, for adhesions, scar tissue and such...what happens when the day comes that the active endometriosis is over?

My doctor keeps telling me that I am ONLY 7 years away from likely menopause, like that is the last day of my life!

What happens afterwards?

Last edited by sjb; 11-08-2010 at 04:38 PM.

 
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Old 11-08-2010, 06:58 PM   #3
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Re: Does endometriosis cause lifelong damage?

Hey Janet...been wondering how you are. How are you doing?

I had my radical hyst at age 32 because of endometriosis and bad, rapidly growing fibroids. I had endometrial tissue all the way up to my rib cage, my ovaries were completely encased in the stuff and stuck the back of the abdominal wall. It was all over the place. Uterus stuck to bladder, bladder stuck to abdominal wall.

After surgery my doc put me on estrogen only rather than doing the 3 weeks of estrogen and 1 week of progesterone, mimicking the normal cycle. By doing this, I was put into instant menopause. This caused the endometrial tissue to shrink and no longer bleed monthly. The pain slowly went away.

However, I had to keep going for PAP tests regularly and internal exams as endometrial tissue can act like ovarian tissue and you can get a cancer in it similar to ovarian. So the OB/GYN visits continued until I was off estrogen at 52. Only no estrogen will get rid of it completely.

Once you stop estrogen through menopause, the tissue shrinks and slowly dissolves. But boy it can be a real problem until then. My sister had it too and it put her into early menopause at 41. My mother had it too. So I put my daughter on birth control pills at 16 to help her avoid it. Worked.

Wish they could do more for you than just give you pain meds.

hugs my friend...........Jenny

 
Old 11-09-2010, 07:14 AM   #4
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Re: Does endometriosis cause lifelong damage?

Just wanted to add, I got an email after posting this pointing that some kinds of birth control have been linked to cancer so putting my daughter on birth control at 16 may have been risky.

That is why I posted about endometrial tissue possibly causing a type of cancer as well. It is important for anyone on the pill to get regular check-ups as it is for anyone how has had a hysterectomy with endometriosis.

My daughter will be 35 in January and has no problems and continues to see her GYN annually and report any problems. They are talking about taking her off the pill after 19 years but because she gets migraines and migraines are linked to stroke and so is the pill. But first, they are doing a full neuro work-up to make sure she is okay.

She is a career woman and has not had any children at this point and hopefully if she does decide to get pregnant, will be able to thanks to preventing her from getting endometriosis.

Jenny

 
Old 11-09-2010, 04:24 PM   #5
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Re: Does endometriosis cause lifelong damage?

Hi Jenny,

I had forgotten about this thread, and now I have some more to add to the story too.

Several more gyno's have been consulted, now I have two working on my at once, and one of them is just like Judge Judy! No one will risk any procedure more than a biopsy so far. No belly-cam, no surgery, no anesthesia..no birth control pills. I am taking 800 mg Danazol with the recent Depo Provera injection. I also had the Lupron Depo which shot me into menopause too-what a ride that was!

For the last 3 months I have been bleeding, calling for another kind of treatment. It has left me anemic enough to need venafer (spell?) infusions. The next idea was an endometrial ablation so I was sent to another obgyn who specializes in them and has use of hospital facilities at our renowned Womens Hospital.

First he wanted a few more tests, biopsies of the endometrium, the uterus, and once he looked inside, he then wanted one of the cervix too-he said it did not appear normal. His idea is to insert a 5 year IUD, slowly producing hormones that will eventually stop the periods althogether.

My concern is...are these the same hormones that lead to stroke? I cannot have those, & I know very little about this area, I have only been sick with it for 8 months. I am being seen by a pain management doctor, the only solution for the pain so far.

I am planning on running all of this by my neph, just to make sure it's all good for my kidneys. Any thoughts on the Mirena IUD? I would rather not have one, but if it works-

I am waiting for my biopsies results and have 4 weeks to research and decide.

Any suggestions? Thanks Jenny!

ps. my mom had it too,

 
Old 11-10-2010, 04:24 AM   #6
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Re: Does endometriosis cause lifelong damage?

Hi There! I know someone who was desperate to stop their period because she had a rectal fistula and there were bubbles coming out of the vagina. This person did not want any period until the doctor could be seen because she did not want any blood entering the abdominal cavity and she did not know if the fistula opened up into the abdominal cavity or not. She read that red clover contains estrogen properties. So she ate some raw. Deciding that eggs from chickens also probably contain hormones from chickens at ovulation time she decided to use more of that also. Having had periods start at the wrong times in prior years from using peanuts, spinach, beets citric acid (manufactured using a mold process from beets sometimes and sometimes from tapioca)and corn. These were eliminated totally from the diet at that time. I believe this allowed a period free time for a few months until the doctor could be seen. (she did have one just before the doctor however). There were no obvious repercussions and the doctor found furthermore that the rectal fistula had closed(other things were done to close this) and there was no need for surgery. The surgeon said she could see the scar from the healed fistula area and that if there is one now it is too small for surgery and there would be no need for it unless there were poop or brown smelly discharge coming out of there.

Last edited by hb-mod; 11-10-2010 at 12:10 PM. Reason: Removed Quote. Please use "QUICK reply" rather than "QUOTE reply". Thanks!

 
Old 11-10-2010, 10:40 PM   #7
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Re: Does endometriosis cause lifelong damage?

Interesting!

Is this combination of foods part of a culture's tradition, or a holistic treatment of some kind? Who would ever come up with that combination without a lot of practice? Even more amazing it is if your friend did come up with the potion herself. It goes to show what measures women have gone through to find relief from un-welcomed bleeding.

Glad to know your friend found the relief she was looking for. Thanks for sharing your story.

 
Old 11-11-2010, 02:04 PM   #8
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Re: Does endometriosis cause lifelong damage?

Hi There! You are welcome!

 
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