Endometriosis story

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

Contemplating partial hysterectomy

by Greta

I have have endometriosis as long as I can remember but was officially diagnosed in 2010 by laparoscopy. The surgeon removed all the endometriosis he could see.

I also had several organs bounded together by scar tissue. At least that explained the ripping,tearing feeling I would get upon standing, etc. from time to time.

Because I did not, and still do not care for any of the treatment options at that time I opted for none. I tried every natural treatment that I could find after much research. After approximately one year the pain, painful & heavy periods and painful ovulation with bleeding I went back to this same doctor.

I am somewhat interested in the Mirena for treatment since the hormones are a very low dose but I had a bad reaction to progesterone once before. I couldn't stay awake, bloated, nausea, sore breast, etc. I could barely make it to work and couldn't do much when I got there!

Today the doctor and I discussed a robotic hysterectomy and leaving the ovaries so that I would not need hormonal therapy. I know that the ovaries produce estrogen and this would not be a total cure. However, it sounds a lot better than the other options that all involve hormonal manipulation.

I am 42, no children in my plans. I know it wouldn't be a cure all and a good chance for future pain BUT for now I know it would take away a lot of the symptoms that make life miserable away.

I have reoccurring fibroids and my family has high rates of uterine cancer. This is such a hard decision!!! I need to do something as I am tired of this disease ruining my quality of life personally and professionally, tired of the pain, tired of being tired and so much more.


Name: Pamela

Title: Very confused too

I am facing the almost identical situation. I'm forty-seven years old and have been advised that I should have a partial hysterectomy to help with my heavy bleeding, clotting and pain associated with endometriosis.

I don't like to take medication;my body is very sensitive to anything synthetic. I am watching my diet and eliminating anything that can cause inflammation.

I would really appreciate hearing other experiences - both the positive and the negative so that I can make an informed decision.


Name: SLK

Title: Removal of Ovaries

Hi Greta,

If you do not remove your ovaries, the disease will continue to wreak havoc. Endometriosis needs estrogen, so if you still have your ovaries, there is a huge chance you will still be in pain after your surgery, and pretty much guaranteed that the disease will return with a vengeance.

Once all the endometriosis implants are removed, if there is anything left (microscopic), it will need time to 'die out.' You shouldn't be on any HRT for at least 2 years following your hyst. Following your surgery, it would be best to starve the hell out of any estrogen left (it also is stored in our skin and fat cells) with either lupron (which I hate personally) or Femara (check out the studies on this one :)

If your ovaries are present, they will feed any implants, allowing them to grow, and spread. Eventually leading you back to square one.

Please do a ton of research, and talk to A LOT of doctors, endometriosis specialists, not regular GYN's. Also check into the auto-immune aspects of this disease. It's not just a gynaecological problem. Research is your best offence and defence of this disease, I've made so many mistakes by just taking my doctors advice.

Name: Greta

Title: Hysterectomy done but endometriosis back..

Thank you ladies for commenting on me contemplating a hysterectomy. I did have the hysterectomy in November. I do not regret it because now my uterus isn't wreaking havoc. I did keep my ovaries because I didn't want to deal with hormonal hell.

Now 3 months later and the endometriosis is clearly present. Now the doc wants to try Lupron. I simply do not have any time to deal with the side effects of going into instant menopause. I have completely exhausted all of my vacation and sick leave.

It will be a long while before I can do anything of that sort. And truthfully I have no interest in trying Lupron or other similar drugs. I know it helps some but not others. Soooo, I'm back to pain and contemplation...No specialists in my area and the closest ones are about a 5-hour drive..

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