Endometriosis story

  These stories can help other women so they do not feel so alone when trying to cope with effects of this disease.

Endometriosis inside my ovaries!!!

by Tarah

Hysterectomy and rare location for endometriosis.

I have had pain, all the common cyst rupture, endometriosis, cyst growth pain, for 12 years. I've had cysts on my left ovary since I was 17. In Dec they removed my left ovary and found endometriosis inside the ovary, nowhere else, as well as many scars from ruptured cysts and something else I cant seem to remember at the moment.

My ob put me on Lupron (not a fan) and I just had the 2nd shot of a 3 month dose. I have no change, in fact the pain is back and getting severe again. I have severe nerve damage where the left ovary was and almost like referred or phantom pain like the ovary is still there or the right side is just projecting the pain to the nerves on the left.

My left ovary was enlarged and very dominant. Well the recent ultra sound from a few days ago showed my right ovary full of cysts. The ultra sound tech is also a certified RN, has done all of my ultrasounds, said my right ovary is taking on a lot of the characteristics of what my left ovary looked like, and she is the one who told me about the cysts on the right ovary.

I have never had a cyst on the right one. The day prior to the ultra sound I had my hormone levels checked and they are at a null as they should be with the Lupron and these cysts are supposed follicular cysts, and according to my ob should never grow big enough to rupture. (side note..those were the same kind of cysts I had on the left that ruptured).

My question, how can I get the cysts if I don't have the hormones in my system? So my next step was the hysterectomy and removal of the other ovary and tube but I don't want the hormones after.

My question is to all of you, please help me if you can. I know I haven't told you everything, and there is no way you can know all, but when you go though this pain and run-around you kind of understand. What should I do?!?!?!?!?!?!?!

I do however have another appt scheduled with a Dr. who specializes in endometriosis and chronic pelvic pain. I also think he has worked with my rare endometriosis inside the ovary. So if this works out I may get more answers. Unfortunately this will be the 3rd answer after 12 years!!

At least the 2nd one helped to find the endometriosis but I had to have the ovary removed and only then did the pathology results find that!! The first one I was with since 2001 and she didn't ever acknowledge my pain when I would tell her, or insistently go in to see her and ask her about it.

I even asked her if it could be endometriosis. Any help or info on endometriosis INSIDE the ovary would be great. Just as someone else mentioned, I seem to be researching everything myself.


Name: SKL

Title: Estrogen in our bodies

Hi Tarah,

I can relate to your case of endometriosis very much so. In the grand scheme of things, our GYN's know very little about this disease. While it starts from our reproductive organs, the endometriosis implants are able to attach to where they are not supposed to because of our immune systems. The disease should also be treated in the auto-immune area.

As far as estrogen in our bodies, there is no way to stop it completely. Our ovaries are the main supplier. But estrogen is also stored in our fat, skin, and in an area above the kidneys (I can't remember the name of off the top of my head).

Also, and even more scary, is that endometriosis implants are able to cycle within themselves; each having their own little supply of estrogen, and therefore they can cause pain and spread. This is what can happen after a hysterectomy... if not all the implants are removed, and honestly, how can they, when some are microscopic at the time.

I am severely sensitive to estrogen. Any dairy, red meat, medication with dairy binders... all makes my endometriosis flare up (I am 4 years post-hysterectomy and pain starting again). Many women can have this issue, and not be aware.

There is a drug, being tested now with incredibly successful rates of decreasing estrogen levels at their simplest form (such as what's listed above) and is stopping the cycles of the endometriosis implants. Though it shouldn't be used while the ovaries are still present (I was apart of that study).

It seems to be the only thing giving us real hope...

I have had endometriosis since age 11, have been through literally every procedure & drug out there, including experimental ones. I was 4 years pain free after my total hysterectomy and have been on no HRT at all. This year, my pain has returned, and I am looking toward yet more surgery plus the use of the estrogen-killing drug ;)

I hope some of that answers your question, and helps others out there reading this!

Title: Damaged Organs

Name: Joy

I am 54. Many operations of all types, All over my small /large bowel. Scar tissue in Pouch of Douglas. Pancreatic pain and digestive issues after long term use of Danzol. Can no longer take steroids. Refused Zoladex as been on it several years, bones thinning and heart issues.

I lost part of my bowel in 1 Op. I have over the years had increased intolerance to drugs and foods, mushrooms, lactose, gluten and fats. I am in pain most of the day and night. The damage of Endometriosis is causing me so many different problems in different parts of the body.

No one Specialist has answers. The Zoladex was the best drug I took but I went though 2 years to getting on with it. I look great and young for my age. I can't work and my husband finally gave up with the problems and left.

I am worried about coping and our Benefits System as it is not completely supportive of this Disease, and even some Doctors are not up to speed with information. Did you know they have discovered Endometriosis in Male Prostates?

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