Hysterectomy for endometriosis

[Perpetualstateofchaos]

I was diagnosed with endo at 19 told i could never have children due to it but have 2 ds. Ive had 3 laporoscopies with adhesion removal most recently in August 2021 within 6 months pain and all my other symptoms were back despite being on sayana press still. Work have basically told me to stay home as my pain is so bad it's obvious im struggling, im oassing out and vomiting due to the pain im in.
I'm finally about to see a consultant again and im debating asking for a hysterectomy I am aware its not always a 100% cure but i was wondering if anyone has had any experience of a hysterectomy due to endo and if it hwlped

Hopeful bump

Can't add anything constructive but bumping for you.

Hi OP, I had exact same problem as you and had a hysterectomy. Best decision I ever made. What do you want to know specifically?

I had a hysterectomy for the same reason, best thing for me. No more periods and cured the endometriosis. Just watch out for early menopause, But then HRT takes care of that.

I had a hysterectomy in 2019 for endometriosis, adenomyosis and fibroids. I was 39 at the time. Best decision of my life!

I mainly wanted to know if it's likely to work as ive read its not guaranteed to cure endo along with any tips pre and post op. Im a single parent but my parents are going to do my shopping as i know i wont be able to lift anything.
I'm 37 i just cant cope with the pain anymore my dc are suffering as we cant plan days out etc or they are cancelled last minute. Enough is enough time to try take back some contol.

Ive not had a period for years been on contraception as part of my treatment although its not worked.
I'm planning on asking for bilateral salpingo oopherectomy so i known itll be instant menopause

I haven’t had a hysterectomy but have had endo for years, fortunately under control now. From what I have heard, the issues with continuing symptoms after hysterectomy can be due to endo being left behind. In my case it was like glue sticking things together internally, so I can see that causing issues if it wasn’t dealt with. I think the recommendation is to have laser treatment to remove any pockets of endo and scarring when you have the hysterectomy. The Endometriosis UK website is a good resource and they have an excellent forum on the Health Unlimited site - you might get more responses on there, there are some very knowledgeable ladies and of course a great deal of experience with all things endo.

Had a hysterectomy for fibroids and really bad periods 6 weeks ago, after op they told me there was endometriosis there too.

Felt much better as soon as I woke up. Obviously too early to say what any long term benefits are but I had 1 ibuprofen fir 3 days just to help me snooze on a night so the (mild) pain didn't annoy me.. Already feel great.

I had stage 4 endometriosis, throughout my pelvis and in my bowel. Had a hysterectomy 6 months ago - I’m absolutely symptom free. Best thing I ever did. I’m 50. If you’re offered it - take it. I was frightened of the GA, the recovery, the pain, menopause. The GA was a doddle, I could have come home the morning after if I had wanted to, I had NO pain at all. Straight on HRT, not a hot flush at all. Honestly, I’m a different person.

My mum had a full hysterectomy for endo. It did work and she never looked back.. only to wish she'd had it sooner

Thank you so much for all the responses its much more positive than i dared to hope.
Ive had 3 ops for endo under GA so that doesn't concern me. More worried about afterwards and if it was worth the risk but definitely sounds like it is.
Does anyone have any tips for recovery? My dc are 11 and 16 so not too little to help a bit they're both want mum pain free.

The recovery was fine too, had the op on Tuesday, up and about in the hospital on Weds, home Thursday, went for a 20 min slow walk on Friday - built this up steadily for a week after. Felt a little vulnerable and a bit weak. Pottering at home, but no vaccing and carrying heavy stuff, making tea, getting dressed etc no issue. My main problem was that because I had no pain - I didn’t realise when I’d done too much, it was fine, but I’d done too much - I was just tired! Four weeks after I went abroad to see my mum, managed a four hour flight with a carry on bag. Was walking for about an hour and a half at this point. Went back to a fairly physical job at 5 weeks. I had full hysterectomy by keyhole, the surgeon said I was a very complex case, the endo was everywhere and the surgery was challenging. I was totally fine!

I think the issues with endo reoccurring after a hysterectomy from my reading is based around not having a full hysterectomy as in leaving ovaries behind which can make the endo flare up again if some cells still remain (I'm not a clinician so may not be explaining it properly). To be on the safe side I had a full hysterectomy Uterus, ovaries etc removed. I was worried at first because they say the ovaries still have a hormonal function even after periods have ceased but I have had no problems at all and just couldn't take the risk of anything growing back.

@OP Be warned that you may have constipation post surgery. This was the most painful part of my recovery because they had to remove adhesions and separate endo stuck to my bowels, the bowels ceased (due to trauma) It took over a week before i could open my bowels and was by far the most difficult part of recovery.

I was warned about this and i had prepped up with lots of water drinking and even took prune juice to the hospital to sip whilst i was there post surgery, but it didn't work, even the enema didn't work. In the end though after using some medication for a week everything went back to normal. I don't know what i could have done differently.

Thats why i want my ovaries and tubes removing aswell i want to elimate as much risk of it coming back as i can. 22 years is more than enough to live with endo

I've been fascinated reading all the replies to you OP and your concerns too of course! I suffer endometriosis myself just recently last year diagnosed with it after years of pain. Also have fibroids and ovarian cysts. I've been thinking of a hysterectomy for the best part of this year and it's been helpful reading this thread so thank you all. I hope you get your endometriosis sorted OP. Its an awful condition to live with!

I had mine at 40 but not for endo.
I think you'd need the overview gone to or the endo will keep happening.
I took a good few years of nagging at Dr's for them to go for it because Inwas too young!

I didn't really have too much pain. My was done laparoscopically. Bit of morphine in hospital and then just standard pain killers.

I took the 6weeks off seriously, followed the precautions and was sensible.

I have a few issues with my pelvic floor but I've always had that

Im glad you have found it useful too.

Thank you @missingthewinchesterboys . I think my main concern post op is infection. Out of 3 ops ive had infections in the navel wound after 2 of them. Last one required IV antibiotics so plan to ask regarding antibiotics as a precaution

Thought id give a little update. Consultant wasnt keen on giving me a hysterectomy due to my age and the risk to my heart and osteoporosis. I have to have an mri see if my endo has attached organs together (as this could make any surgery more difficult and require extra surgeons and a referral to a specialist endo clinic) and im being put on zoladex for 6 months if the zoladex massively improves my symptoms then she will consider the hysterectomy.

This looks promising @OP. I was also put on Zoladex for 6 mths before they agree to the surgery. It worked, there was no pain during that time but after the 6mths they wanted to shift the goal post again and said I should continue using it for another 6mths at which point I threw my toys out of the pram. They agreed it that day and 3 weeks later I had the surgery.
Wishing you luck with it and don't take no for an answer after the 6mths are up.

Thank you, ill bare that in mind