Hysterectomy : Hi ladies I’m due to have a... - Endometriosis UK

Endometriosis UK

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Hi ladies I’m due to have a hysterectomy,looking to be done in January all being well as discussed with my endo consultant tonight.

I have endo and adeno had 3 surgeries, on zoladex at the moment with hrt have bad days like most of us.

I know this isn’t a cure for the endo but will surely help with some of my pain as I have adeno also.

Can you ladies tell me how you are after having a hysterectomy?

11 Replies

Hi there. Are you having a full hysterectomy with removal of ovaries as well? I had mine in March for cysts , polyps and fibroids but once in surgery they discovered level 4 endometriosis all over my ovaries, Fallopian tubes, womb lining, appendix, bladder and bowel . After 4 hours all of the adhesions were removed from my organs with no damage and it was just easier to remove my appendix ... also my omentum which if the fatty layer in front of my organs as this was covered too . It was tough but it comes with much relief. I haven’t had any pain since at all, none whatsoever and with no ovaries , they are not producing estrogen for endometriosis to grow .. it’s unlikely to return but I am not having HRT as that may stimulate it . I’m 45 so it’s a little early for the menopause, that’s the only down side as that is a battle but getting things calmed down by seeing a clinical herbalist. (But I am always got forums trying to get tips and ideas!) ...... It’s the best thing that could have happened to me as I feel like a new woman in many ways!! I don’t know your situation in terms of what type of surgery (ovaries left or not ) but it certainly was the best option for me ... let me know if you have any queries, I have some good tips for hospital and recovery . Good luck!

Lou93 in reply to 45Bumbleb

Hi thank you so much for your reply, yes I will be having ovaries removed I have to stay on HRT as I’m 27, so glad it’s helped you☺️ please let me know about the hospital tips, thanks x

Hi Lou93, I had mine in July and I'm pretty much back to normal now. No periods, no pain (this was the worst symptom for me and the infertility) no hormonal overreactions every month, I feel the most settled that I have in years. Mentally and physically.

The hrt is working well and I'm looking forward to the future now after my late 20s and 30s were completely ruined. It's shaping up to be the best thing I've ever done.

I had 3 laps before that and was on zoladex and tibolone for years on and off and that was a really good indication of how I'm now coping with the menopause now. It's a lot easier than before that's for sure! Based on my experience I would say go for it and don't look back x

Lou93 in reply to Completer40

Thanks so much for your reply, so glad it’s worked for you ☺️I’m looking forward to having mine as it will be an improvement on what I’m like now x

Hi, I had a full hysterectomy in March due to stage 4 Endo, I read many forums before making the decision as I’m 44 and need reassurance I was doing the right thing, the outcome seemed to be it was the best thing that all the ladies had done.

The Op went really well the only thing that I wished I had researched was the HRT side of it as I left the hospital being told to speak to the doctor 2-6 weeks after Op... called them and they said they were not experts so had no idea what I was to be put on, and what would I like to go on! Not a great help at all - but in the end between the doctor and the HRT clinic we got there, it is a pain as I’m on one gel daily, another gel every other day, pessary twice a week and tablets every night! But everyone’s different.

I have to say I have not felt brilliant since my Op and when I had my first post op appointment with the consultant last week I explained to him that whilst I didn’t have Endo pain, my energy level is not good and I have a constant deep ache in my pelvic! He examined me and as he thought all my pelvic muscles have gone into spasm due to Op which is why I feel like this... I’m now waiting for a physio appointment to come through to sort it out and I’m hoping after that I will be able to say it’s the best thing I ever did!

Good luck xx

Lou93 in reply to Tetley1976

Thanks so much for your reply, sorry that things aren’t great for you at the moment let’s ope physio helps you xx

I’m watching this thread with interest as I am in the same situation, facing everything being removed and into menopause at 41. I’m also concerned about HRT due to family history with cancer and the increased risk HRT could pose. I’d be really interested in hospital tips and recovery tips from those already going through it. I admit I’m a little terrified of it all.

Lou93 in reply to Smokey2020

Hope your doing well, it’s normal to feel like this as it’s the unknown of it all, I just can’t wait to get it done with if I’m being honest as suffered this last year in and out of hospital etc just no life at all even before covid would be in and out 🤣 let’s hope this helps us and I’m sure these lovely ladies will give us some great tips about hospital x

Smokey2020 in reply to Lou93

I hope so to. I’ve had a really odd trip to get diagnosed as was being treated as possible cancer referral for a couple of months before they decided it was endo. It is pretty advanced and impacting bowel. I paid to be seen privately but consultant has said I need surgery through NHS due to complexity and risk. I know I’ll be waiting a while yet due to Covid and waiting lists so just trying to keep pain under control without becoming a zombie on pain relief. Fingers crossed it helps us both get back to a better quality of life 🤞not sure I remember what that was like right enough 😂

Hiya,I'm 31 and had a total hysterectomy but kept my ovaries because I'm only 31. I know they can feed the endo but it's worth the risk for me. I had stage IV endo and suspected adeno but the post op pathology said I didn't have adeno. I've had 6 surgeries (including my hysterectomy) in the last 18 years. This is the only one I instantly felt better from.

I am 10 weeks post op and I feel absolutely amazing. Definitely the best decision I could have made. I'm not in pain all the time, I have more energy, intercourse doesnt hurt. I feel like a new woman. I still get bowel pain but it doesn't last all day. It's more painful moments at the start of the day or if I eat spicy food. I can predict the pain better. But it's minor in comparison to what I've had before.

My one piece of advice is to make sure you get a great surgeon, the quality of the Dr makes such a difference to your experience and recovery.

I hysterectomy is very final so it's good to do your research.

For me I almost wished I'd done it sooner. Reddit have a good sub r/hysterectomy which also has lots of info you might find useful.

Good luck with your decision.

Lou93 in reply to Reen_Bean

Thanks so much for your reply, so glad it’s helped you☺️ i decided to have the hysterectomy a year ago but because of covid it was delayed, I have great support from family about my decision so that helps just can’t wait to get it done now.

Thanks I’ve spent hours looking into things about it just wanted to hear about people’s experiences on here x

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