Hi everyone,
I’ve been told that (finally) I’ll be allowed to have a hysterectomy for adenomyosis. I was wondering if anyone could share their stories so I know what it’ll be like? I like to be prepared so I’m interested in both good and bad stories. Any tips would be greatly appreciated as well.
Thank you x
HiI had a hysterectomy in November. I’m 53 now 🤦♀️, 52 when had op. Just gets worse 🤣
Back on track, I was diagnosed endo Dec 19, lap Feb 20 and then hysterectomy. There were a lot of adhesions, I had numerous fibroids in difficult places, surgery was a little more complicated. No denying he was a very good surgeon, just not so good at communication. Pelvic area feels great, unfortunately abdomen not so, still trying to find out why.
I would recommend making sure they go through everything with you before op and confirm they will be checking all places they can for endo, getting it in triplicate.
I stayed in for two nights.
What would you like to know? Please ask anything, will help if I can 🙂
Hi I had to jump onto this as a great post JasmineLeah. Do you feel any pain now like labour pains since having hysterectomy? Does it make you feel different as a woman? Is sex still sore? Thank you and hope you are well 💗
HIDon’t worry about jumping in 😀
I still have abdomen pains, pelvic area feels easier apart from when intestine plays up.
Hasn’t made any difference, but can’t comment on the sex bit as not in a relationship at present.
How are you?
Thank you for replying. I have had a few episodes of pain. That’s terrible after a hysterectomy you don’t feel great 🥲
Are you managing the pain ok? At least sort of 🙂I keep hoping it will improve, after talking to dietician I’m hoping for a Sibo test. See if that shows anything. Apparently more common than you think with endo.
I am taking tramadol, it just comes on all of a sudden with no warning. Hope you get to see the dietitian soon. I done the FODMAP diet, I try to eat as healthy as possible but sometimes think I will be in pain regardless x
Just been shopping, nearly killed me, feels like I have appendicitis 🤦♀️ Just taken more Tramadol, I’m not sure it really does anything. Do you find it helps?I thought about FODMAP, it doesn’t really matter what I eat, it’s more just eating or drinking.
I’ve started using lactose and gluten free fortisip drinks, on prescription, courtesy of dietician. Best thing I ever did was paying the monthly unlimited script fee 🤣
How are you today?
Hi nice to hear from you. I find tramadol takes over an hour now to work and sometimes it takes my pain away completely and other times I can still feel the pain. How are you feeling now? I got my decapeptyl injection, hoping this works x
Hi, thanks for responding. I’m 37 so I’m worried about going into the menopause early, and I’m also worried that it won’t cure the pain of my adenomyosis. Do you find the pain easier now you’re recovering? I can barely walk at the moment due to the pain of my condition but I’m hoping to be able to get my life back afterwards. I just don’t want to go through major surgery to be still stuck in the same position.
Thanks xx
Have you talked to gynae or GP about early menopause?Adenomyosis is in the uterus, they can only confirm once they do histology. Mine was enlarged and he thought might be Adenomyosis, but he didn’t put it on the results letter.
I’m not a good example as still have abdominal pain which could be endo still or something else entirely. As he didn’t put about other areas, bladder, bowel I can’t trust him now he’s backtracking.
It’s a tough decision at any age.
Make sure they will get all endometriosis in writing, I thought I had this covered.
I’m sorry you’re still in pain. Is the pain there all the time or is it sporadic?
I had an MRI which showed adenomyosis, but the consultant I saw this week said there’s almost definitely endometriosis there as well. She’s a private specialist. I decided to go private as the NHS are too slow and I desperately need to get back to work.
Do you have an op date? Have you had an op before?
I went private with initial lap, that was first ever op, I just thought it would be done and dusted, gynae thought superficial. Turned out he was wrong.
Pain is there all the time, it depends on what I’ve dine as to level. Just been out shopping, couple of hours. Had Tramadol but might dip in to Oramorph. Just wish I knew what it was causing it.
Wow I could literally have written this post. I’m 40 and currently on a priority list for total hysterectomy due to adenomyosis. But I’m so scared of what it will be like afterwards. Will I still have pain! Will all this be for nothing! What will menopause be like at 40. I just feel really frightened of the unknown. I’m also due to have the injections in the next week to bring on (fake) menopause which will hopefully relieve some of my pain but I’ve read so many horror stories about the side effects I’m not sure what to do x
Hi Jasmine Leah, I had a hysterectomy in Oct 2017 due to adeno. I kept my ovaries as I didn't want to go through menopause too young (I was 42). It helped with the terrible pain I experienced during periods but I have endo in other places so didn't help with that. I had laparoscopic surgery so no massive scaring. Unfortunately I do still have pain with intercourse which definitely got worse following the surgery. I would still say it was definitely worth having it for me despite this as I could no longer cope with periods. It's a very individual choice and only you will know if it's the right one for you. Hope this helps 😊
Thanks for replying. I’m still not sure what to do, my pain is constant, it never goes away, so much that I can’t walk. I’m hoping that the surgery will at least allow me to go walking again. I’m scared that it won’t though and then I’ll have gone through the surgery for nothing. My consultant said that the best thing to do is a hysterectomy but she did say that there is a small chance that it could be something else like my spine or hips and that we could try hormones first to test if it would help. However, that’s going to take another 3 months which I just can’t afford as I need to get back to work soon or they'll have to let me go. It’s all or nothing basically. I’m feeling really stressed about the whole thing x
My specialist is recommending I have a hysterectomy . I was on the list for a lap to see what's causing the cyclical pain I'm getting (half of the month). I had an adhesion that is known about, as the last lap didn't find any endo but found the adhesion but they didn't have consent to remove it. My dr thinks that I probably have adenomyosis (even though none was found on ultrasound) and thinks a definitive approach is the best next step. But.. I'm terrified. I already have problems with lower bowel and I'm very worried that the supporting structures will be gone after a hysterectomy and I will have worse problems. I am 48 so quite near menopause, so I am wondering if I can wait until then, but the pain is so bad I probably can't. Considering the Zoladex injections to see what menopause does to the pain? I haven't given consent for hysterectomy yet, and I'm still in two minds about it. The waiting list I'm on is very long so I have time to think.I've read your other comments and it sound like you are in more need of urgent treatment if the pain is all the time. I still get a few good days, but I think I'd probably be more prepared to go down the hysterectomy route if mine escalates like yours. Sorry for rambling, I'm just really in a weird place with it all. I hope you get the help you need x
Hi I had a total hysterectomy Jan this year I’m 28 was 27 at the time, had endo and adeno. It’s changed my life if I’m being honest no more pain... on hrt but that’s a small price to pay for me with how well it’s all gone!
Any questions feel free to ask X
Hi hope you don’t mind me jumping in here to ask a question. I am on the priority list now for a hysterectomy (I’m 40) I had thought I would keep my ovaries but I had an appointment with my consultant last week and after rescanning me he is now suggesting I have ovaries removed and whilst waiting have the injections to force me into (fake) menopause. My worry is how I will feel going into early menopause and the side effects of this and long term problems. Any advice would be greatly appreciated x
Hi so I was on the injections for 6 months before my hysterectomy, at first I had bad side effects headaches,night sweats but they calmed down after a month or so and I was taking hrt tablets but they changed me to the hrt gel a few months before my surgery.
My consultant asked me way before my surgery if I wanted my ovaries removed and I agreed as I’ve had so many issues with them but was also worried about how I would be after surgery think it’s normal ☺️
Glad I had everything removed as after he said it was the best thing everything was riddled with endo and my womb with adeno.
After my surgery I don’t have many sweats at all or headaches and my back ache has improved and guess what no pain.
Any questions just ask Xx
Thanks so much for taking the time to reply. So do you think having the injections beforehand helped prepare you in some way for after surgery? I have read so many negative comments about the injections I’m scared to try it. But also if I don’t have my ovaries removed I’m worried the hysterectomy will all be for nothing as there’s a chance the pain will still remain. It’s such a hard decision to make isn’t it x
No problem at all, oh yes definitely glad I agreed to try them as this was an indicator of how I would manage after surgery with no ovaries. Yeh it’s a hard one... my consultant said if I didn’t have them out then I would more than likely have to have them removed later down the line as they caused me problems and pain. When are you next seeing your consultant then? X
Thank you that’s so helpful. I saw my consultant last week and after rescanning me he has put me on the priority list now for the hysterectomy. I’ve been on the waiting list since just before the first lockdown but he said it’s just not moving anywhere as such a backlog. He said he would hope I would have the op now by June/July so I’m not sure if I now won’t see him till then or if he will want to see me just before he didn’t say. But my doctor can organise the injections and patches whenever I give her the go ahead x
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