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Endo after Menopause

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Old 04-05-2011, 04:23 PM   #1
Join Date: Apr 2011
Location: Abilene, Texas
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robin09171979 HB User
Endo after Menopause

I had a complete Hyster after many years of suffering with Endo in 2005, in 2009 I had my ovaries removed. I still to this day have pain in random places in my lower abdomen. I even read in a report prior to having my uterus and cervix removed the doctors had to stop because they could not distinguish the difference between uterus and bladder due to massive adhesions and thick scared tissue. I have been to many doctors and here in Abilene, Texas it is horrible finding someone who knows how to treat this disease. My current GYN (Michele Johnson MD) who says she doesn't think I even have endo even though I have records confirming that I do. The pain is horrible, I move I hurt, menopause does not help because I have been told absolutely no estrogen because I have stage 4 endo and they don't want it getting worse...I'm beyond that point. Endo is taking over my life, I don't sleep due to pain, I can't do everything I want to do without being in pain, or having to stop what I'm doing due to the pain. I feel as if when I sit my insides are going to rip in two, if I stand I worry about if my right hip (osteoprosis) won't give out. I hurt all over from the top of my head even in my big toe. I'm fighting social security to be declared disabled because I have problems walking, sleeping, and performing daily activities. I need help but no one has the answers I'm looking for, is there hope or light at the end of the tunnel I have no clue, but I continue the fight hoping that one day I will find peace with this Endo and Menopausal hell I live in.

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Old 04-05-2011, 05:52 PM   #2
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Re: Endo after Menopause

Is danazole avaliable in the US? It is generaly considered the "gold standard" for treating endo drug wise.

If you cant satisfied weith your current gynecologist, seek a referal to someone else.
The desire to take medicines is what seperates man from the lower animals - William Ostler

Multiple anecdotes do not equal evidence - Me

Old 04-06-2011, 05:44 PM   #3
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Re: Endo after Menopause

I understand your frustrations, I struggled for years with endo resulting in complete hysterectomy. I too was told not to go on hormones, but after 15 years of hot flashes and sex issues, I am now on the lowest dose patch.

I know it's hard, but keep searching. My guess is you either have endo in other areas or it is scar tissue. I was lucky in that with 2 laps and 3 abdominal surgeries to stop bleeding from ruptured cysts, that I do not have any problems with scar tissue. But I have read where others have it really bad.

Have you had a lap after hysterectomy to see if endo is anywhere else, or if they see a lot of scar tissue?

Hang in there and keep fighting! It took me years to find the right doctors, you just have to keep at it no matter how exhausting it gets, someone will listen and you know your body better than anyone so do not let them tell you it's in your head. They did that with me and I thought I must be crazy and it turned out that I had a somewhat rare auto-immune disease.


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robin09171979 (04-18-2011)
Old 04-18-2011, 07:19 AM   #4
Join Date: Apr 2011
Location: Abilene, Texas
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robin09171979 HB User
Re: Endo after Menopause

I have been on the lowest dose of estrogen and to no avail it got worse. I was told I have adhesions, scared tissue (endo in my scars) and intestinal endo as well. No lap has been performed in 2 years since the removal of my ovaries. Danizol is approved in the US but I have been told it would cause me too many issues. I have also been on progestrin therapy too but doesn't work. I had 2 rounds of lupron prior to having my ovaries taken out and will never do that again. I can't even take bisphosphanates (fosomax) for my Osteo because it ruined my teeth. After a year of being off it my teeth are stronger and not falling apart so after having massive dental work done to fix that I'm running out of options to prevent other issues. I have endo's evil twin (intersatial cystitis) so I have hot flashes whenever I need to urinate which gets so annoying because its all the time. I need a wide array of specialist to tackle all the issues I have been dealt. So heres to happy hunting to get all the answers I'm searching for.

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