Endometriosis pain relief after a hysterectomy

Have you always wondered what your endometriosis pain will be like in the future? I have too. I’ve been trying to seek out women who are further along their endometriosis journey to find out how their pain has improved, changed, worsened or vanished completely.

I’m starting off with the story of a 40-year-old woman who has had a hysterectomy for endometriosis pain. I hope you’ll find her insight helpful.

Please help

I’m looking to interview women who have experienced pain relief following the natural menopause, if you’d like to share your experience (anonymously) on my website please get in touch by leaving a comment. Your email address will only be visible to me and I’ll get in touch with you privately.

Please note

This interview represents just one viewpoint on endometriosis and does not mean that a hysterectomy means an improvement in symptoms for all women. As we all know endometriosis is subjective and everyone experiences it differently. Please speak to your doctor and consultant before considering any new treatment or surgery, they know you best and are best equipped to know your individual circumstances.

Here’s the interview:

How/when were you diagnosed with endometriosis?

I was diagnosed around about 2008, I had such painful terrible periods and was in severe pain, I was sent for a scan and found out I had cysts on my ovaries. They were only small to begin with, so it was decided not to do anything at this time, so off I went still in pain.

Towards the end if 2008 I just couldn’t function, I was in agony, I couldn’t work probably cause of the pain, I was doubled up in pain, I was sent for another scan and the cysts had got bigger, and that was when I was told I had Endometriosis, never heard of this before but I just knew it was extremely painful, walking was painful, sitting down was painful, because I had two children to look after it was decided to have my ovaries removed, I went for my pre-med and there was a note from the consultant saying he thought it was a good idea to have a full hysterectomy because within six months he would be having me back in to take out my womb.

How did endometriosis effect your quality of life?

Endometriosis stopped me enjoying life, for a few weeks I was housebound due to the pain and I would bleed really heavily so I wouldn’t want to go anywhere whilst like this. My husband back then didn’t understand and just went to work and left me to cope with my kids, this was extremely difficult, luckily my mum was very supportive and would help out as much as possible. I felt trapped and I thought this would never leave me, constant agony, heavy painful periods. I was so happy to be having a hysterectomy.

Were you able to start a family, what if any difficulties did this involve?

I was lucky cause I had three wonderful children before the Endometriosis started. So that was a blessing.

Could you tell me what your hysterectomy involved? 

January 2009 I went in to hospital to have my hysterectomy, it was explained by the consultant that we agreed to have a full vagina hysterectomy , I said yes, and why I agreed to have a full hysterectomy was to get it over with because I’m a mum and my children needed me, so instead if going in for two operations I would just have the one.

It went well, stayed in overnight just to be observed. Was told not aloud to do nothing at all for 6-8 weeks, my mum came over everyday and looked after me.
I was put on a high dose of HRT, after a few weeks I started getting hot flushes, they would last seconds but would come n go all through the day but mainly at night was the worse, having to cope with a heavy pain in my tummy from the operation, then having hot flushes to was very difficult to cope with but I carried on. I noticed after a few months the flushes were easing off, I was starting to feel like me again. You ask about the menopause, I can’t answer that because I haven’t experienced it, they did say being only 40 I would have an early menopause but I haven’t yet.

What advice would you offer someone suffering from endometriosis now? 

All I can say is after having the hysterectomy I felt like a new woman, no pains from anything , I was able to walk with out pain and return back to work, my periods had stopped which was fantastic, I had a new lease of life and I was going to live it, I went abit wild, my marriage was ending so I went if the rails because I was feeling so good it was great.

I’m not sure how I can suggest or comment with anyone who has endometriosis because mine was sorted out by the hysterectomy and it seemed all my scar tissue from other operations were on my womb and a lot on my ovaries so I think that’s how I got rid of it.

Only positive thing I can say is if it can be removed via an operation then go for it, your life would return with no pain and honestly you will feel like a new woman.

13 responses to “Endometriosis pain relief after a hysterectomy

  1. Monica McLeod

    I totally agree with your comment about having surgery to free yourself from the pain.
    I had a partial hysterectomy in July 2013. Prior to that I had 5 laporoscopies to treat my endometriosis as well as an appendectomy due to my appendix being covered in endo. During the hysterectomy, my uterus and cervix were removed. At that time my gynecologist refused to take my tubes and ovaries because of my age…..I was 36 at the time of the operation. After my surgery I was pain free for about 10 months. At the end of April 2014 all of my symptoms started to return. It was like a bad nightmare! I just underwent my 8th surgery for endo on November 18th. This time my gynecologist agreed to take both tubes and ovaries. 3 weeks after the operation I am recovering well. I am still off work but plan to return next week. I am happy to close this chapter in my life. Living in pain due to endo has been a struggle for me for 19 years. I am excited to be pain free once and for all!!!

  2. I just had an almost total hysterectomy a week ago. They took everything but one ovary and they excised all of the endo – Stage 2-3. I’m 41. I’m still in pain but I wanted to write that my mom also had endo and had a total hysterectomy (also they took both ovaries) in her late 20s (this was about 30 years ago) due to endometrioisis. She had Stage 4 and was in quite a bit of pain – already had 3 children. She said it was the best decision she ever made and has been pain free since. She took hormones for a while but then went off them. She said she had a few hot flashes but nothing too major. I’m hoping my surgery will give the same results. The surgeon wanted to leave an ovary – but I’ll take it out if things don’t get better. So far I’ve had one exploratory lap w/ appendectomy (June 2014) and then one almost total hysterectomy and endo removal (Dec. 2014). My symptoms were chronic (everyday) back, abdominal, and leg pain on right side for 10 months prior.

  3. Thanks for your informative post about hysterectomy. I have listed your site on a list of endo blogs — you’ll see yours at the end of my post: https://hysterectomy4dysmenorrhea.wordpress.com/2014/12/15/ubiquitous-endometriosis/

    Cheers to feeling better! 🙂

  4. Heidi

    I tried to leave a comment a moment ago, but it may have been lost. Sorry if this posts twice. I had a hysterectomy and ovaries removed in 2008 at age 39. It seemed to help my pain for a year or two but the pain returned a couple of years ago and has steadily gotten worse. I’m scheduled for a laparoscopy in two weeks and I’m incredibly discouraged. Why should this surgery work if the others haven’t? But if I don’t do it, I’m stuck with pain, trouble walking, fatigue, and inability to tolerate sex. So I have to do it. Right? The upside is that in the past I lived in small towns where my stage IV endo was relatively rare. Now I’m working with one of the best doctors in the country. He feels that I’ve been under treated in the past and that HRT was a bad decision for me. Interestingly enough, I stopped estrogen all on my own a few years ago because I felt like I was happier without it. So I have a little bit of hope and I’m also very, very discouraged at the same time. Hysterectomy wasn’t a magic trick for me, unfortunately.

    • Thanks for sharing your experience Heidi. I hope I made it clear enough in my opening that I did not wish to give the point of view that a hysterectomy always means a improvement in symptoms, because it doesn’t always. It’s important for everyone to realise that. I hope to write about where it does not help in the future (I am having trouble finding someone that is willing do do an interview. Let me know if you would be interested. Thank you for sharing your story.

  5. Pingback: Feel Good Friday: 19.12.14 ⋆ Fibro Geek

  6. Pingback: Ubiquitous Endometriosis | da Vinci Total Hysterectomy

  7. Bethy

    This was really helpful to read. Thanks for putting on your site. I had my second laparoscopy a year ago that lasted 4.5 hours. The surgeon was an endo specialist and he removed everything he could see. Unfortunately, I had no relief from pain at all. The only good thing was that my bowels didn’t play up as much for a couple of months. In September the consultant said that sometimes this happens and the next step was to have prostap injections for at least 3 months alongside HRT. I’m now on the waiting list for a full hysterectomy. I know so many people say that it’s not a cure but it’s got to a stage where the pain is destroying my life. It’s lovely to hear a positive story x

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My name is Michelle and I've been living and working with endometriosis since diagnosis in 2010.

I hope to provide some hope for this illness through practical advice and discussion of this awful disease.