Hello, I have been to see my consultant and he has given me a couple of options going forward one being a full hysterectomy. After 27 years I am wanting something a little more permanent. My question is how have people got on after a hysterectomy, has this totally relieved your symptoms or do you still have any pain? I am hoping this will be my last treatment, I have tried everything else and I really don't want the injection again because of the side effects. But I don't know anyone else who has had a hysterectomy for endometriosis to ask if it has worked. Thanks for any feedback
Emma
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I had a total hysterectomy (left ovaries but removed uterus, tubes and cervix) and I have to say I was just so happy to have my life back. I didn’t have endometriosis, I had fibroids and they discovered adenomyosis after the op and both made me bleed so heavy and constantly. My mum had endometriosis and had a hysterectomy at 39 (same as me) and she has been fine, I have a few friends where they suffered endo. I have only read in some cases it can come back even if ovaries are removed but I don’t think it’s as bad and is quite rare (again ask a medical professional to confirm as I am only going in what I have read and heard) I haven’t looked back and thought I might as I have no children but I couldn’t take any more pain, unpredictable flooding and being constantly anaemic. Weigh up all the pros and cons and u will decide what right for you, good luck with everything x
Oh great! This is good to read. I’m the same as the lady that asked the question. Pencilled in for December but worried if I’m making right decision. After hysterectomy is there still a long menopause?
in short, best thing I ever did and I wished I’d done it sooner! I had endo, adeno and the histology from the hysterectomy also confirmed fibroids. I’m almost 2 years post hysterectomy and have barely taken a painkiller in all that time! Have lots of tips re surgery prep. Feel free to DM me any questions. Best of luck too! x
Hi. Sorry to hijack! I’m due to have a hysterectomy on 28 February 2024. They’re leaving my ovaries but removing everything else. I would be so grateful for pre and post op tips if you’re willing to share. Thank you x
No problem! I'm actually in the process of writing a post with lots of tips and some of my experience as I do get asked a lot. I'll try and link it here when Its finished. In the meantime here are a few tips (in a random order) ...
The best advice I got on here was to buy loose comfy clothes a size or two up. Dungarees are perfect as they don’t have a waist band. I bought a maternity pair a size up from asos and lived in them, along with a big chunky jumper dress and a lounge suit from m&s. My tummy did not enjoy any waistbands (even on my most comfy pjs). I was advised to set out a few different outfits (including underwear) and put them somewhere easy to reach. That was a genius suggestion as you don’t need to ask for help to get dressed or keep bending down for things.
I wish I’d have invested in a better pair of dungarees (Lucy and Yak come highly recommended) as it took a long time for the tummy to recover. Although I’m active, my body had been through a lot and it needed some tlc, not skinny jeans! I did underestimate that part. I naively thought that at 12 weeks I’d be back In my usual clothes. It just takes time. Everybody is different and recovers at their own pace but we do need to recognise the huge thing we’ve just been through. If you're able to invest in a couple of quality items that are a bigger size, perfect for a swollen tummy, you'll feel so much better about yourself than trying to squeeze into clothing that might be too uncomfortable to wear.
There are a few really good resources on you tube to help you recover. Videos that explain how to get in and out of bed, how to lay with a pillow etc. I would also recommend researching a pelvic floor exercise programme. I did Dr Brianne Grogan /Vibrant Pelvic health’s free kegal camp workouts the month before and I signed up to the lift programme which I completed during the recovery period (and still do now). She gives such good tips on lifestyle, I’ve found it really helpful. (Happy to share links via DM, just ask)
Ask whoever is picking you up from the hospital to bring a pillow with them. Place that underneath the seatbelt and it will really help protect your tummy.
I asked on the forum if anyone had a surgery date close to mine and found a 'buddy' that had her op 3 weeks later. It was nice to be able to chat online to someone in the same situation.
If you can, bulk cook some meals and have them in the freezer for the first couple of weeks. You can be really tired and good nutrition is important but you probably won't feel like cooking.
This is perhaps the most important point - DO NOT TRY TO DO TOO MUCH TOO SOON - Everyone says this but we often dont take it in. Your body has just been through a huge trauma and needs you to respect that. The hoovering/washing/gym/work can wait until BOTH your body and mind are ready.
Remember you're not alone. There are many ladies here who can sympathise, listen and offer tips. Reach out if you need them.
During recovery keep an eye on your wounds. If you spot any redness or weeping seek advice. If your GP cant fit you in that day (mine couldn't) call 111. I found out that surgeries keep a couple of appointments back for 111 calls so don't hesitate if something doesn't feel right. I had an infection in my belly button incision. It was sorted swiftly with antibiotics but if something like that happens, you just dont need the extra stress!
Best of luck with your operation. I hope this stuff helps x
I had stage 4 endometriosis, fibriods, adenomyosis and diverticulitis. I'm 14 weeks post full hysterectomy, they took everything. I had operation in a robotic theatre. I was home 3 hours after coming out of theatre.
Prior to this I have had my internal organs separated 4 times and also had my appendix removed all because of endometriosis.
I have lots of damage inside me but I can honestly say I'm slowly getting my life back after 23 years.
You need to do whats right for but I'm not looking back I'm starting my road to recovery and it's starting to feel good. I wasn't allowed to fly earlier this year due to pain levels. Guess what I'm flying today.
Yes I may have pain because of damage but my organs won't stick together anymore. That's very positive.
If it feels right to you do it, I wish I had been allowed to have it done earlier.
Thanks for posting this.. I’m in the same situation and trying to decide. I’m 50 but the pain for 8 years has been horrendous and getting worse so I had decapeptyl injection and so need to decide by 31 October when I meet consultant if I have another injection or BSO.. bilateral ovary and tubes removed .. but I’m worried if that’s worse than putting up with injections. Side effects from op etc.
Definitely the side effects of the injections were much worse then the temporary discomfort from the op.
I went straight onto a hrt patch after the procedure (I know there’s some controversy re hrt for women that have had endo) but weighing everything up it was the right decision for me.
I’m living pain free and I’m a much happier healthier person for having had the op. X
I am 12 weeks post op for full hystetectomy and bilateral oopherectomy, and I've never felt better. I've had no pain whatsoever except for the first few weeks because of surgery. Best decision I have ever made. And I feel like I have so much more energy.
Thanks ladies your advice it has been amazing. I think I know what I need to do but it's always good to have others experiences and views. This site has been a godsend, there was nothing like this years ago and having others to reach out to is reassuring. Thanks again and good luck on all your journeys x
Do you mind me asking how old you are? I'm 40 and have just been put on a waiting list to have my uterus and ovaries removed. I'm so scared. Unlike you, I've not have any previous surgery but I have been on the pill for over 20 years. My symptoms became obvious when I stopped taking the pill during lockdown. It feels like such a drastic step to take and I feel like I'm in denial over the whole situation.
Hi, sorry for the late reply. I am 45 I have always been resistance to a hysterectomy previously as I didn't know where life would take me but I won't be having a family now and after 27 years I just want something a bit more permanent so I think the hysterectomy is the best option but wanted others opinions on if it worked or not . Over all it seems very positive and has helped me come to terms with the decision. I know it's a drastic step and I have been where you are but I have tried everything else, I feel this is the right time for me to make this decision. Have you spoken to your consultant about how you are feeling? I know not all consultants are the same, some are better than others. I also found this a good forum for advice and support, we are all in the same boat with similar experiences.
hello! I’m in my mid 40’s and had had stage 4 and had my op back in Feb, they took everything. I stayed in for 2 nights as I had a temperature. I had key hole and also struggled with the gasses they pump into you. If they’re doing this with you, I’d recommend peppermint tea, take some in with you as my hospital didn’t have any.
I’m so happy now, totally pain free after the recovery period. It has given me my life back.
I do feel that I didn’t really think properly about what happens after. I was so concerned about the op and if I’d have a stoma or not (I didn’t in the end) that I didn’t think about the menopause.
I totally made the right decision about surgery but the post care regarding HRT has been poor from my GP. They didn’t feel comfortable prescribing due to endo so I had to go back to the hospital. I haven’t really found the right one for me and brain fog is real!!
My only advise would be make sure your GP is up to speed with HRT and endo. Ask loads of questions, if you’re not sure ask again.
I had total hysterectomy Oct 2020 (aged 50). Surgery was keyhole but complicated stage 4 endo diagnosed on the table so it took the surgeon 4 hours to “unstick” me from adhesions throughout my tummy (from bowel, bladder, tubes to kidney etc etc)… in hospital 2 nights, just a drain in the tummy when I woke up. The long and short was i prob had a bit of nerve related damage so had what’s best described as uncomfortable bowels for about 1.5years. What made a huge difference other than time was getting my HRT sorted with the addition of progesterone. Even though I had my cervix removed (which means for most GPs this indicated you don’t need progesterone I think).. the P has massively helped settle the remaining endo related pain.
To the original point - my GP 3 months post surgery suggested no HRT but anti-depressants to help sleep (“menopause is something that everyone goes through” type of guy)… I changed GPs having tried to put up with it for over 6months (silly in retrospect). New GP gave me HRT patches but took another 6 months or so to talk to someone who knew that P was needed for endo folks …. I’m super glad I had the procedure (it was somewhat inevitable that it was going to happen and at the time I had some adhesions that had caused issues, and cysts and fibroids)… i just wish I’d paid more attention to the gyno and sorted my HRT with him so the GPs just got told. However it was also the middle of the pandemic and we did all have a lot going on then! … but that is the biggest lesson for me! It’s 3 years later now and I’m getting back to my old physical fitness self - even though that has taken 2.5years more then I thought it would lol!
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