Hi, I am due to have a hysterectomy in October. Ovaries are going too and there's a strong chance of bowel resection due to recto sigmoid endometriosis.
If anyone has any advice for recovery or can share their experience I would be grateful.
Thank you
Aimee
Hi, good luck with this. Can I ask what you've had to get to this point? My hysterectomy was abandoned on Tuesday when they found my bowel had fused to my cervix due to endometriosis. I still need a hysterectomy so I'm wondering how you have got to this point. When did they discover what you have and how did they make a plan? If that makes sense. Also how old are you (if it's OK to ask). Sending love.
Hey I’m so sorry you didn’t get your surgery, that’s so frustrating! I’m on the exact same position as Aimv, and also have adeno on top of it all. My surgery is next week.
Did you know have a colorectal dr in your surgery? Just don’t understand how they abandoned it instead of dissecting it and free you of more pain and more surgery!
This will be my 3rd surgery. I had the second one in 2022 and 9 weeks later I was already on the waiting list for this one after a massive flare up and new endometriomas forming and pressuring my kidney. As I also have adeno, the hysterectomy was the normal route. I’m 30, don’t have and don’t want children. I’ll have a colorectal from present as I have bowel involvement that is supposed to be superficial and need to do a preparation the day before in case a resection is needed.
I hope this helps and wish they sort you out soon!! xxx
Are you in the US? It's totally different in the UK. I haven't even heard from my surgeon- nothing since I came round and he told me it was beyond his skill set.
No, I’m in Manchester in the UK!
I get it that he wasn’t skilled enough and tbh it is kinda good that he was humble enough to admit it rather than do more damage. You still should have had a colorectal accompanying the surgery according to the NICE guidelines if I’m not mistaken.
Have you been referred to a BSGE centre? I’d not might be worth looking into that xxx
Hello, I am 38, always suffered with endometriosis. I had a lump under my cervix which was found during my smear test so I saw gynae, MRI ordered and then I was referred to a general surgeon for the gynae and general surgeon to work together on one of their joint lists.
General surgeon wanted me to have a CT colonography and flex Sigmoidoscopy for making a plan.
The lump is endometriosis between my bowel and uterus so it's possible I'm all fused together but because the two surgeons are working together, hopefully it can be sorted.
Hope you get the help you need xx
That sounds similar to me but they only discovered the fusion during surgery. Now it's a waiting game. Are you in the US?
No I'm in the UK xx
Oh that's reassuring. I just feel totally forgotten about this week. I didn't know I had endometriosis until Tuesday.
I don't have any experience of this as I've declined to have a hysterectomy, but wishing you all the best with it.
Hi Aimv! I hope you are well and not too nervous for your surgery! I’ll have the same one on Saturday next week.
I found this forum called Hystersisters. I think they are American and not necessarily focussed on endo, but provide advice about all things hysterectomy. It’s very informative and they have checkpoints, questions you should ask, how to prepare, what to do after surgery etc. very helpful!!
Fingers crossed everything will go well in your surgery and your symptoms will improve!! 🌟
Thank you, I'll take a look xx
I can heartily recommend Hystersisters. There are a few Brits (and others) on there too. They were an immense source of knowledge and support pre- and post-surgery for me. Mine was a straightforward total removal of uterus, tubes, ovaries and cervix. No bowel involvement. Am happy to chat about that, if you think it might be helpful. Good luck!
Hi Aimv, I had a full hysterectomy 3 years ago and it was the best thing I ever did. I had endo everywhere and was in pain for years. It's been such a relief. Even the recovery was nowhere near as what my normal life had become. Wishing you all the best. Make sure you have plenty of time of work and take it easy. X
Hello, does a hysterectomy rid endo completely? Thank you xx
Hi Tropic, it has been amazing for me but I live in fear of it coming back again. It can still be present even after a hysterectomy but I think the trick is to keep the estrogen and progesterone hormones balanced. Livial / tibolone tablets have an equal amount of both and that really works for me. It did take about a year to 18 months to get my HRT right, I had to keep trying different things. At the 18 month mark I felt amazing, full of energy. Hope that helps, let me know if you have any more questions x
Hello I hope your surgery goes well. Ive had 4 surgery's now, the last taking my ovaries. My best piece of advice would be to do a lot of research into HRT and to be prepared pay for treatment if the NHS doesn't step up. As a younger person my post op treatment (basically nothing) was useless. Surgery menopause can hit hard and take a while to get on top of, 18 months for me. The level of bleakness I felt really frightened me. Be kind to yourself and be prepared to go slowly if necessary. I can honestly say I feel better now than I have my whole adult life but it's taken money and determination to achieve. I hope you have a consultant who can help you navigate menopause, GP's can't often prescribe the levels we need.
aimv, sounds like you’re gonna have a tough few weeks. Are they managing to do it laparoscopically? I think in a few years time I’ll be doing a hysterectomy as I also have adeno and endo. Can you let us know how you get on with your healing and the journey please? I’ll keep my fingers and toes crossed for you.
I have surgery in just under 4 weeks myself. Lots of people have recommended prepping meals in advance; trying to get as much cleaning etc done before surgery and don’t be afraid to ask for help while healing. Also take a pillow or towel with you to cushion the seatbelt for the drive home. So many people have said that’s a must.
Take care x
Thank you, I will keep you updated. Its on the 10th Oct so it's creeping up quickly. Thank you for the cushion tip, that's a good idea.
I believe the plan is laparoscopic xx
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