I’m so scared to have my hysterectomy that I’m pretty sure I’ll end up backing out of it.

[Stonecoldhandswarmheart]

I am on a waiting list for a hysterectomy and I don’t think I can go through with it.

I know the internet is full of horror stories but the things that I am reading on the FB support groups are scaring me shitless.

Not helped by the fact that I had a uterine ablation in 2022 which has failed causing me so much pain during each period. I have since discovered (only because I insisted on a MRI) that I actually have endometriosis and adenomyosis, something my gynae should have checked for before any op because having adenomyosis does not make you a great candidate for an ablation. I’m the type of person who likes to know all the ins and outs of everything and previous to the ablation I found out all that I could regarding the procedure and discovered on FB groups many women for whom the procedure failed. This obviously left me feeling nervous so I compiled a long list of questions for my gynae and he assured me failure is very rare, when I next saw him in clinic he turned to his nurse and said ‘Oh, this is the lady who asks soooo many questions hahah!’, I felt like such a twat at the time and am now left feeling so angry because mine did fail and I was justified in asking those questions. Had he done his job properly and checked me for conditions such as endo I may not be in this position now and needing the very operation I had gone out of my way to avoid.

Contrary to what I’ve just said he was actually a friendly, chatty guy but I’m now with the Endo team at the same hospital and under a specialist Endo gynae. He may very well be good at his job (although I really have no idea if he is or not tbh) but one thing I do know is that he is not very personable and has zero bedside manner. He talks over me during every consultation that I have with him and during our first he went out of his way to put me off a hysterectomy yet during the last consultation nearly a year ago he was pushing me to have one hence me now being on the waiting list. I tried asking him if my chronic bowel and gut issues could be linked to endo/adeno but he waved his hand up at my face telling me he was there to discuss my gynae issues not gastro problems yet in the next breath said when I have the op (also having the endo excisied at the same time), if any endo is found on the bowel he will stop the operation and I will need to have another op with a colorectal surgeon on hand which was all totally contradictory from where I was sitting, it was all so confusing. The way he is I feel I daren’t ask him a series of questions as I did the last gynae, I’m sure he would dismiss everything I said. The last letter he sent to me post-consultation was to confirm that I am on the waiting list and then there was a three page letter stating all the things which could go wrong which I know is protocol but for someone like me who has already had a bad experience with one procedure at the same hospital/department and also suffers from terrible anxiety, health anxiety and hospital phobia I am just about ready to have a nervous breakdown over it all.

I know some people go through much worse than I am and have no choice but to have major operations in order to save their lives etc but I am genuinely crapping myself and have been crying daily over it all to the point no one in RL wants to talk to me about it anymore as they have all had enough of me.

How the hell do I get over this obsessional fear (last account I read online was a women who’s poor mum died last year, a month after her hysterectomy because the surgeon had nicked her bowel no one had picked it up and she died form sepsis).

One thing to remind yourself of is that very many people don't post if they had a good or "regular" experience, even on social media groups. I've just been given a date for my hysterectomy and, while on the list, I avoided any of the groups as I do for my chronic conditions as I know I have a bad habit of taking every little thing someone else says to heart and extrapolating it to happening to me. I'm sorry that you have a consultant who has his head so far up his posterior it's a wonder he can see anything. There's unfortunately quite a few, so enamoured of their "brilliance" that they don't think that their patients are actual living breathing human beings with fears around surgery.
I'm not sure if it's in the remit of PALS but it might be worth contacting them and voicing your concerns either in writing or by phone. They may have better luck in getting through to your consultant surgeon that you have genuine concerns and he is failing you by not addressing them.

I am sorry to read what you've said. I had a similar situation in that I had a very traumatic experience whilst having a gynae operation. I then had to have a hysterectomy as a result and was understandably scared. The hospital staff were awful (one female Dr shouted at me to just 'get on with it' when I explained my reluctance / fear re the hysterectomy. Another nurse said I was being "silly" regarding the amount of pain I was in (I had had an operation without anesthetic due to the surgeon being arrogant and incompetent). So it was an awful, awful time.

I did have the hysterectomy but was fearful going into it. As it was, I had one of the best surgeons in the country and he did a fantastic job. I healed very quickly, walked every single day during the six week recovery, didn't feel much pain at all and was relieved that I had gone through with it.

You must be extremely scared and anxious. It's awful because it feels like no one else understands. I felt incredibly lonely. When I had my hysterectomy, I also had a complaint in the system against multiple members of staff due to the failures during my previous operation. Everyone knew and some staff blanked me. The ward nurse (male) didn't speak to me for a week. He only gave in when the surgeon called him out on it.

I would suggest asking PALs for help and possibly having someone with you when you do attend appointments. I tended to shut down in appointments due to the PTSD. You need someone to advocate for you almost.

I felt the same about an operation I needed - right up to the day I thought I may back out. The relief that I did go ahead was fairly immediate and so much better for me long term. Seek support wherever you can; I hope you do go ahead and all goes well.

Thank you, I really do need to keep off the support groups for the time being, they are great for some things but terrifying at the same time.

I think I'd be more relaxed if I had a more approachable gynae but there are only three endo specialists at our hospital, two have terrible reputations for being off-hand (unfortunately one is mine) and the other is lovely and extremely popular, he is recommended time and time again. I saw him privately but he wanted £15k for the op which I don't have and he sadly has a two year+ wait on the NHS.

I don't have a lot of faith in PALS tbh, I did complain to them about my previous gynae not picking up my endo despite seeing him every year for 11 years for consultations, hysteroscopies etc but they just got the department manager to call me with the classic line of 'So sorry this happened to you, we will learn by our mistakes'.

Good luck with your hysterectomy, I hope it goes well.

I am so sorry you had to go through all of that, it's dreadful to think how many women are made to feel as though they are making such a fuss when we are genuinely struggling, it makes me so angry.

It does annoy me with my current gynae, he seems quite off hand and almost argumentative when I'm on my own (I am not an argumentative person at all so no idea why he's so prickly with me) but the couple of times my DH has accompanied me he's completely different and my DH is like 'I don't know what the fuss is, he was really nice' 🙄

I'll have to bring him to the next appointment which will probably be the pre op and I don't expect I'll see the gynae until the actual op though.

This is interesting. I had a hysterectomy in my 50s due to pre cancerous cells. I didn't know I had endometriosis.

The surgery lasted 5 hours as the gynaecologist surgeon had to remove lots of endometriosis including where my womb was fused to my bowel, I didn't need a separate operation. He was pleased with himself because he managed to do it via pinhole surgery. i wonder why your situation is so different.
After the 1st night, I had no pain, took kt very easy for several weeks and am so pleased I had it done.

Support groups really are terrifying- because the people for whom things are going well do not post on them!

I had a hysterectomy some years ago - uterus, cervix, ovaries, fallopian tubes - due to adenomyosis & endometriosis and thickened uterine lining and I am so glad I did! I have had no lasting side effects, quick recovery, and no more bleeding & pain! Hooray! Plus I no longer worry about ovarian cancer. And no scarring since it was carried out vaginally.

Looking back I was a bit nervous before the surgery. Like you I had read accounts that worried me- for instance about prolapse after removal of cervix. But no problems occurred. Nothing at all.

Just make sure you take things slowly in the first few weeks after surgery. Don’t overdo it! (And if you can, get fit before the surgery - though I know that’s easier said than done.) Of course no one can ever guarantee anything, but the chances are you will feel like a whole new woman afterwards. The support groups just show one slice of experience, not the whole picture.

ps my surgeon was a bit of a tit too, but I did not need him as a friend - what mattered was that he was really competent.

if you had cancer/high risk changes then the balance of risk and benefit would almost certainly have been in favour of proceeding rather than coming back another day. They'd have phoned a general surgeon intra-operatively if they'd needed... it's not that uncommon a scenario.

Where someone doesn't have any worries about malignancy and if things look surprisingly 'involved' from a bowel PoV on the inside then it is often better to wake up and plan for a more involved procedure with the colorectal surgeons available, patient properly consented for bowel surgery etc. If they know from the start the bowel's going to be tricky then they'll usually plan it as a combined procedure.

I think because the MRI report states deep endometriosis, diffuse adenomyosis then goes on to mention a nodule in the pouch of Douglas and some endo deposits on the ovarian ligaments with no mention of anything on the bowel he obviously doesn't want the expense of having to arrange an op with another surgeon there when it may not be necessary but he says if he goes in (it will be via robotic laparoscopic surgery) and he sees it in the bowel he'll do all he can and then he'll have to arrange with a colorectal surgeon on hand. He is an endo specialist and it's a bsge hospital but he obviously doesn't have specialist colorectal surgery experience?

Tbh, I'm desperate to get it all out as I'm scared of oc and of any uterine cancer going undetected due to the ablation but I just wish it wasn't such a big scary op with so many things which could go wrong. I know the surgeon has to send the letter listing it all but I'm genuinely one of the worst people to view these things and I know I shouldn't go on the support groups!

Good to hear yours went well. Thank you.

The endometriosis was first diagnosed during surgery. Unfortunately as it was during covid, I didn't get to see the surgeon after or have any followup at all, hence why I'm interested. Maybe I should have asked but I felt fine so didn't.

I was thinking about posting my positive experience on the hysterectomy forums, but worried I'd sound smug, so didn't. In retrospect I should have, as previously stated the forums tend to focus on a minority who have a difficult recovery.

I had a hysterectomy 18 months ago. Honestly, it was easy and life changing for the better. I had vaginal and keyhole. Expected my bits to feel battered - nothing. Stomach was tender. Just on normal painkillers from day 2. Home next day. Worst thing was the awful shoulder pain from the wind they pump you with but walk around and it went after a day. Excuse to do nothing and lift nothing was wonderful. Worst week was week five when you start doing too much. I went away in the caravan three weeks post op - was fine. I know that having a full abdominal op is far more of a process with a longer recovery time but it is all doable. On social media or support groups, you get people posting who have more difficulties but you don’t know their health, size, lifestyle, pain threshold, circumstances - there are so many variables and some just are lonely or have little support or are anxious. They are not necessarily representative of the thousands who have this surgery. When I had cancer, I remember reading the support group page and being horrified by the tales of awful side effects from medication to prevent further recurrence- tthe reality was that one type did me no good, went to specialist got another type - yes some side effects but completely dealable with. Don’t be put off an op which you need by others’ tales.

That’s fairly normal
I had an endo surgery with a bowel surgeon on standby but he ended up operating for 3hrs on my bowel
My endo surgeon is great but my bowel was folded in half and it needed a specialist for that bit. If it was minor then she would have carried on and done it

Thank you so much, I really needed to see that today. I have been having a big wobble recently.