Endometriosis story

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

hysterectomy but kept ovaries...endo is back & was flared up 6 weeks after surgery!

by Greta

I had undiagnosed endometriosis until I was 40. Always had heavy periods,extreme pain,bloating chocolate cysts and unexplained fatigue that would knock me out!

After discovery of unusual growths in my reproductive areas I had laparoscopy surgery the surgeon found an enormous amount of scar tissue & endometriosis growths he removed. If I remember correctly my ovary was bound to my bladder by adhesions & scar tissue.

The surgery helped but the endometriosis returned full force within a year. I went back to the same surgeon/specialist & agreed to hysterectomy and was very firm about keeping my ovaries. I had done tons of research & knew a hysterectomy was probably not the cure as my endo is/was severe.

Its been 2-3 years since and for the last few months I wake up with pelvic pain & pressure with sharp stabbing pain elsewhere and I know its related. If I stand up or twist sometimes it feels like my insides are stuck together and were torn when I moved! It can drop me to my knees!

I'm becoming grouchy dealing with all this pain, being tired all the time & wondering what to do now..there are no good options!!!! I'm tired of complaining to my husband, family & friends about it. Work is hard.I have low sick leave & vacation balances due to all of this..feeling very frustrated & down about this.

Comments for hysterectomy but kept ovaries...endo is back & was flared up 6 weeks after surgery!

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Sep 10, 2016
by: Heather

I also have the same experiences. I was finally diagnosed after 5 years in pain with prolapsed uterus as well. The dr left ovaries and Fallopian tube saying if they were removed I would have a higher chance of heart disease.

Now on Norco and birth control shot - was pain free for 8 months after surgery now going on another 2 years and cysts are in my lymph glands, bowels, liver exc. just applied for disability and I feel like a wimp but most days I find it hard getting out of bed or even falling a sleep due to pain.

Jan 24, 2016
Endo - hysterectomy
by: Katie

I'm three days out from my third lapraoscopy to treat endometriosis. My first surgery was in Oct. 2014 after more than 5 years of horrible pelvic pain that became unbearable. Two weeks after surgery I was in excruciating pain and my gyno told me it couldn't be the endo and that I was just healing.

The pain never stopped and I had a hysterectomy 6 weeks later, he left my right ovary because it was healthy but all the endometriosis and adhesions were just as bad as when he operated six weeks earlier. However, this time I felt so much relief, for eight months, then the pain was back with a vengeance.

This time I spent weeks researching and found Dr. Nezhat in Palo Alto, Ca. who specializes in treating endometriosis. My surgery was Jan 20, 2016. I had a tremendous amount of adhesions and scar tissue, as well as some new endo growth. He excised the endo instead of ablating it.

Endo MUST be removed at the root or it will just grow back. I also had an endometrioma on my ovary, which he removed so I am now in menopause. His success rates are great but he'll tell you himself he cannot guarantee you'll be endo free forever.

This disease has taken so much: time, energy, money, all of my sick leave, and sometimes my sanity! I wish all women suffering from this all my best. Do your research and always trust your own instincts. Dr. Nezhat offered me hope when I felt absolutely hopeless. Good luck!

Dec 19, 2015
Update from my endo life...
by: Anonymous

Hi Teresa & anonymous, My surgeon did very much want my ovaries removed during the hysterectomy. I insisted he not remove them if they were healthy. I wasn't willing to trade menopause for MAYBE less endo. Problems. I researched a great amount of time to see if ovary removal would stop the pain of endo. The results were not that great!

Many of the women I read about were super depressed about having a full hysterectomy, losing these organs, then going through a horrible menopause or horrible side effects from hormones such as Lupron or both...at this point, I just turned 45 I'm willing to wait for menopause to come on its own time. Supposedly, that is when most, but maybe not all the endometriosis symptoms will subside....also due to my uterus being removed supposedly menopause will come a few years sooner according to statistics...another point I want to make is every surgery is going to create more scar tissue.

I know my laproscopies & hysterectomy caused more. The nature of endo is awful, sad that the implants will even plant in the abdominal cavity...also when they do hysterectomy, if they take your cervix, sometimes endo implants will be "sewn" into the cervix area when they sew it shut... I had implants that were sewed in...doctor said I was probably right on that..

I consider endometriosis to be an autoimmune disease. I have several... I've found that eliminating wheat & gluten, eating healthy, low sugars & lots of healthy oils like coconut, avocado,etc. Makes a difference. Don't get me wrong I cheat on this healthy eating & always feel worse for it but then get back on track like most humans..

I'm still fatigued on a regular basis ( gets old) but I have kind of brutal work hours. I'm up at 3:45am & home at 5:45 pm. I've got to make a huge effort to get even 7 hours of sleep during the work week. Some days my work is physically demanding & I walk miles a day..I've got days where between pain & fatigue I don't know how I pull it off!

I also think when my body is trying to heal from endo. attacks I get sick easier - viruses, flu, etc... Important to support your immune system because between endometriosis & a nasty virus, etc it will take me out!! I have many days where I've got to take pain pills to get through the day... With my sick leave balances low due to on going illness its all I can do in that area.

If either of you would like to chat via email my emails is sdrew1970@hotmail.com please put a subject in the subject line so I don't assume it's junk mail. I've got lots more to say but have already been too lengthy. Happy Holidays!

Dec 17, 2015
After Hysterectomy
by: Teresa

Hi, Greta
It has been 3 years and 4 months since I had my total hysterectomy and since I last posted my symptoms have improved. The pain I had which I think was probably my insides repairing themselves has gone.

I do get bloating and cramps but that is from my irritable bowel which I do think was caused by the endometriosis. I rarely feel pain now but I do get a dull backache and muscle ache in my back, spine, legs, shoulders, neck and jaw, side of head worse on my left side still. I do have to massage these areas most days and I do get fatigued which could be due to menopause.

I get really hot if I get near heat which can be unbearable sometimes but that is mostly in the morning for some reason and I get brain fog and fatigue which is mostly in my muscles a dull ache, for some reason but it's not a pain fatigue its bearable for me anyhow.

I still think a total hysterectomy was the best thing I ever did to treat the pain in my pelvis and I do go out everyday now and don't have that nagging pain any more where as before I would only be able to go out about 2 days a week because the pain was so bad.

A hysterectomy is not for everyone as everyone's body is different and I can't say that you would be pain free. Perhaps because I haven't taken a HRT it's helped. My sister has been on HRT since her hysterectomy and 7 years later she has pain from her chrones disease but she also now has endometriosis back but then perhaps I will in 7 years time.

It's a very hard choice to make and I feel for you. I think once you have a disease inside of your body whether it's endometriosis, arthiritis, chrones, I don't think you can ever get rid of it, it's like it has to grow but you can do things to help the symptoms and it's what works for you.

best wishes to you

Dec 16, 2015
Any updates on your conditions?
by: Anonymous

Greta and Teresa,
Hi, I have read your symptoms and they are so similar to mine. I have stage 4 endometriosis with everything gluing together like yours. I use to have the stabbing pain until I had it all vacuumed out 9 years ago. My pain got much better after that but it's all back.

I am 38 and trying to decide if I should take lupron for six months to dry it up or have a hysterectomy. I am terrified I will have to take hormone therapy that will cause even worse side effects. Teresa, why didn't you take hormones? Isn't it required? Greta, did you decide to get your ovaries removed? I don't know what parts to leave or take out.

Every doctor gives you their best opinion but I want to hear from women who have actually experienced it. Have symptoms gotten any better for either of you? Teresa, you said a full hysterectomy was the best thing you ever did yet you still have horrible pain, and horrible pain for two years afterward?!! The more I read, the more scared and hopeless I feel. My biggest problem is the extreme fatigue, I so badly want to do more but I don't have any energy at all.

I have been through every test in the book and specialist have found nothing wrong with me so it has to be from my endometriosis. I will take the pain and bloating but I can't handle the fatigue! I know I threw at you a lot of questions but I would like to know if your fatigue got better? Thank you so much! Good luck to anyone reading this, it's not fun but I am still alive.

Nov 11, 2015
by: Anonymous

I'm sorry you are in so much pain but I am shocked your surgeon did not insist on you having your ovaries removed as well. They are what produces the hormone that causes the endometriosis to begin with. I really feel like you wouldn't be going through this pain if that had been done to begin with. I hope you feel better soon.

May 18, 2015
Endometriosis after a hysterectomy
by: Teresa

Hi Greta,
I'm sorry to hear that having a hysterectomy has not helped with the pain of endometriosis.

I had a total hysterectomy due to endometriosis.
My endo had grown on every organ, womb, ovaries, tubes, bladder, bowel and appendix and was all stuck together.

I had 4 laparoscopies and removal of endo, and was given zoladex injections in the pelvis for 13 months and again for another 3 months which put me through a mini menopause. I was also given the mireana coil for 3 years which was great as I had no periods but in the end I had it removed because of infection.

I was also put on the Yasmin contraceptive pill back to back for 7 years only having a slight period every 3 months but in the end this was not helping.

My gynaecologist did not believe in hysterectomy as she said the endo will only grow back.

My gynaecologist said she had never seen anything like it, the endometriosis had grown everywhere and for two years she couldn't even get into the pelvis to remove it as it was so bad, so had to put me on the zoladex and mireana coil to try to kill it off before she could operate.

I didn't work for 10 years because the pain has been so bad and my back, hip, leg and down below has been agonizing pain.

In the end I went to a different gynaecologist that treated my sister for endometriosis, and he said the best thing to do was a total hysterectomy,(womb, ovaries, tubes, cervix) as my bladder and bowel was totally stuck together and had also grown into the ovaries.

So I had this done and its been 3 years now and I must say it is the best thing I ever did, although I am getting pain in my groin and leg again but its bearable and I do still feel stiff as I'm stuck inside but without ovaries and the oestrogen in my body hopefully if it grows back it will be slowly.

My sister had a total hysterectomy because of endometriosis but she was put on HRT so she still had oestrogen going into the body where I have managed to stay of off HRT.

After my hysterectomy I had tearing pains, and cramping all the time and it lasted for a good 2 years after, I thought the pain would never go away. It's the tissue and muscles repairing in your body. Did they cut your pelvis as it takes longer to repair.

I still get cramps but otherwise at the moment, besides some sharp digging pains and cramps I have actually been able to live a life and feel much better.

Give your body time to repair from the operation.
Hope you start to feel better soon.


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