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 returned with miserable symptoms 9 years after hysterectomy

by Angel Christine

When I was 30 I had my cervix and uterus removed. Over the next 9 years I had pain, sometimes even intense pain, lasting anywhere from a couple of hours to a few days. It was manageable and all I took was Aleve as needed.

The endometriosis became worse 9 years after my original surgery- starting in May of 2014. I had a second surgery in June 2015 to "burn off" the regrowths of endo, remove a couple of other tumors (can't remember the names but I had 2 different something-"omas" that I was told are the type that don't go away but you have to have surgically removed) along with removal of my left ovary which "was a mess, covered in endo, and couldn't be saved."

The pain was unchanged after the surgery. I still have my right ovary. I started the depo lupron injections that August 2015- took a while to get it approved through my insurance because its very expensive. About two weeks after the lupron injection my pain was dramatically decreased.

I took the depo lupron injection for 5 months to put me into menopause and shrink any missed cells. After two months of the injection I started add-back hormone therapy to help manage the side effects of the lupron. That didn't help at all. To say the side effects of lupron were horrible is an understatement. But after a few weeks my pain was around a 2/10 and I stopped narcotic pain meds.

During a vaginal ultrasound at a follow up appointment I felt like something tore, maybe an adhesion was ripped loose? The pain came back just as bad as before, about a 7 or 8/10 without any pain meds. I stopped the lupron even though the plan was to do 6 months of it then switch to a birth control pill. Since I was in so much pain and the side effects from lupron were so severe I decide not to have the final two injections and start the pill.

Just fyi, lupron side effects included for me poor balance, blurred vision, extreme fatigue including barely being able to stay awake enough to drive home from work at 5 pm, poor memory and focus, nausea, dizziness, feeling like I was going to pass out when I stood up or hand to stand in place longer than a few seconds, etc.

I've been off the lupron 2 months now. I've been taking a low dose bc pill, can't remember the name right now, and have been on it for 4 weeks. I take it continously, skipping the inactive pills. Lately I've had severe mood swings, crying spells, extreme irritability, depression and just overall miserable as heck.

My family doesn't even enjoy my company. I can't even stand myself. I just called my pharmacy as my dr office is closed, it's a Saturday. The pharmacist told me all the feelings could be side effects from the birth control pill. I'm not even sure exactly how the pill is supposed to help keep the endo from coming back. I'm going to skip the pill tonight and tomorrow and call my GYN on Monday.

I've felt like a crazy person all week. Endometriosis is a horrible illness that causes so much more suffering than I think most people realize. The treatments for it are equally terrible. I've never felt so miserable, out of control, and unlike myself in my entire life.

I'm a psychiatric RN and even I have been at a loss trying to understand what's happening/wrong with me. If you've been through any of the things I have, my thoughts and prayers go out to you.

The last year and a half of my life has been heck spelled with two ll's. It's been overwhelming and hard to function. My quality of life is in the negative. I hope I can find a way to manage this all and get back to me. I'm ready to start living again instead of just trying to make it through the day, one day at a time.

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Feb 15, 2018
Ovary removal
by: Anonymous

It seems that they probably should have removed your ovaries when they did your hysto. The ovaries produce the estrogen that the endo feeds on.

Dec 16, 2016
Some advice
by: Husband

Yeah my current wife has been going through this and I feel so powerless to help her. I wish I could do something as she seems to be in a lot of pain. It started off maybe 5 years ago as only a few days in a month. Now it's almost every day.

She suffers mostly lower back pain but the pain makes her stumble sometimes and fall down due to it's intensity. She has had her uterus removed at a young age due to high risks of cancer when she was 22 or so and only has one of her ovaries left. She is 38 years old now.

I met her when she was 31, I was 22. I hate to see her suffer like this and she has been on Oxycodone/acet for the last few years and it frustrates me to see the doctors just sign pills away with no other alternative ideas on how to help her.

So for all you poor ladies out there suffering though this hell, have you found any relief somehow throughout the years? Does this ever stop? Any advice I could share with my lovely wife that might make the symptoms lesser? Nothing feels worse for me than to feel powerless to help the one I love through this ordeal so any advice would be appreciated.


Oct 12, 2016
End the endo misery
by: Anonymous

My heart goes out to my fellow endometriosis sisters. I am just 2 weeks after a hysterectomy as I had severe bleeding and endometriosis as well. As I am close to 50 I decided to go for total hysterectomy. My gynaecologist told me that I had quite a mess inside and they removed most of the ovaries as agreed.

Still she had to leave a bit of the ovary as it had adhered close to the colon and was surrounded by chocolate cyst. Which was v difficult to remove.

I did a lot of research and discovered that endometriosis can still happily grow and can affect the colon and later the bowels and colorectal area. I should be careful as the remnants of the ovaries can still form their own blood vessels and secrete harmonies which can fuel endometriosis. Further there is the possibility of ovarian remnant syndrome which brings its own set of problems.

Thankfully my gynaecologist strongly dissuaded me from hormone therapy even though I had nightly sweat and start of hot flashes. I am thankful to her as she prevented it refuelling more endo growth.

After that I have become very health conscious and have decided to reduce endo fueling foods and have started to avoid wheat, reduce eating red meat, avoid diary and yoghurt, avoid soya and fermented foods, sugar, alcohol, caffeine( one can always try to reduce intake), eat more organic to avoid hormone intake from foods, avoid preservatives, white flour and canned foods which have additives. Drinking plenty of water and eating coloured fruits and veg including green leafy veg is key. Switching to rice, eating whole grains, buckwheat flour and quinoa is great.

I am hoping this keeps my endo in check. I am grateful that my periods have ended and hope I can be endo free to avoid problems or more surgery.

There is always light at the end of the tunnel.

Sep 02, 2016
Large endometrioma
by: Anonymous

I think the trick is to avoid the HRT. There are other ways to deal with menopause symptoms. I plan to have a radical hysterectomy with out HRT. I would rather deal with menopause than with endo.

Jul 24, 2016
Pain since age 27
by: Anonymous

I had a baby. Endo never went away. I have had almost 10 operations. Henia 4 times where a hole opened after scopes. I was in the original study placebo effects on Lupron. I took the medicine and no results !

That was in 1989. What have they done in all these years to help us! Doctor after and pain Rehab these male doctors tell because nothing showed up in my Ct scan, bladder scope and more that it is impossible to have it back.

I am 61 and on clamria estrogen. I have done the pain meds , acupuncture , ten units and more!
Welcome to the world if ill informed doctors or less passionate people.

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