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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Oct 30, 2016
Struggling with ovarian pain
by: Anonymous

Hi there
I know your post was a while ago - I wonder if you have an update on your condition? I had a hyster (leaving ovaries)and endo excision in January after 20 years of endo pain. My ovaries have always been a problem - particularly the left one, however endo was only found and excised from my right ovary.

I'm now in a position of considering left ovary removal, as I'm sure its endo inside my ovary - but just haven't heard of this before, other than endometriomas, which I don't seem to have, just cysts (some hemorrhagic over the years). If you have any insight to share that would be great. When you say you had it inside your ovary - do you mean it wasn't an endometrioma?
Thanks and hope you are well.

Jan 20, 2016
Some things to consider
by: Anonymous

Hello. I also have endometriosis. I am not a medical professional, I am only throwing out some ideas. My first suggestion is that if you want children and you still have eggs, ask your doctor about freezing your eggs or embryos (if you have a male in your life that is willing to give up his sperm).

This will probably not be covered by insurance but it's worth looking into & finding out the costs. There is even technology that will preserve or freeze an ovary. My other suggestion is that if you are not in pain & your quality of life is not affected then leave it in. Maybe for the next 2-3 years, the doctors can just monitor your ovary & the growth of the endometriosis.

Also, I suggest that you evaluate your life style. Do some research on cleaning up your diet to alleviate some diseases. Maybe look into Chinese herbs & philosophy on your disease (I don't know much about it). Evaluate your stress levels & lifestyle (work life, social, friends, drinking, smoking, sleeping, dating, family, personal outlook on life, etc.).

Also, work on having a positive outlook on your life and health. You deserve to be healthy! I wish you the best!!!!

Dec 08, 2015
by: Anonymous

I am 27 years old. My first experience with endometriosis I was 17. I was at a stage 1 then so it wasn't very bad. Two weeks ago I had another surgery. I was seeing doctors starting a year ago about the pain and not being able to have sex. I believe my husband is getting fed up slowly.

Today at my appointment I was informed that the endometriosis is inside my ovaries, tubes, and uterus. I was showed pictures from the surgery and my uterus is nearly black. I went from stage 4 to 3 with the surgery because everything outside was able to be cut out. The doctor I am now seeing is a fertility specialist and seems to know more what to do and try.

I have yet to have children so he's working to make me able to and hopefully put off a hysterectomy for another 5-10 years. Maybe you should look into a fertility specialist for more advice?

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