Feeling very anxious about my hysterectomy after reading horror stories on support groups

[UnitaBath]

I have a hysterectomy mid October - I am shitting myself.

I have struggle for years with gynae issues and have had endless treatments and procedures but nothing has helped. A year ago I decided to go on a waiting list for a hysterectomy, I knew it was a long NHS wait so I shelved the worry and got on with things kind of hoping menopause would kick in and all issues would resolve/disappear but I am 53 and still having a cycle so I continue to feel like crap a lot of the time (but it's been so chronic that I just put up with it I suppose).

So my op is now scheduled for October, I have had the pre-op appointment and I am now just waiting (and fretting and stewing in my own juices!). Of course I have done the absolute worst thing a major worrier can do and I have joined all the hysterectomy support groups on FB and Reddit. Google will tell me that most women don't regret their hysterectomy but these support groups say otherwise and now I am seriously thinking of backing out. Logically I know people who have great experiences of things don't often take to the internet and those with bad experiences need support and guidance but my brain isn't getting that message.

I have adenomyosis, a failed uterine ablation, a retroverted uterus which I am sure presses on my bowel causing my digestive issues and I also have endometriosis. My gyane is an endo specialist and is planning a robotic laparoscopy hysterectomy with excision which I thought would be easier but these support groups are full of these scary stories which include all kinds of disasters such as loss of blood, bladder or bowels being cut by mistake, blood pressure dropping or going so high they nearly died, unmanageable pain, prolapses, massive weight gain post op, instant surgical menopause which causes horrendous symptoms. One woman has told me this morning that since her hysterectomy she has had to have further ops every year since and has terrible nerve pain and uncontrollable interstitial cystitis.

The problem is I had my fingers burned with the ablation, the internet is full of women telling others not to have this procedure because it has left them with more issues but I ignored that and took my gynae's advice but mine did fail and I too became one of those women so now I am stressing the hysterectomy will go wrong too and thinking to myself 'Wtf am I doing/going to do'

Thank you. I have felt like crap for decades, you just kind of put up with it when things become chronic, don’t you, it’s your normal and you can’t ever envisage anything different, that’s where I am right now. Hopefully things will change for the better post op and if it improves my digestive issues that would really be the cherry on top because that rules my life the most.

I had a laprascopic hysterectomy in July and my recovery has been fab. I posted on the lead up, here’s the thread. It’s full of great advice from people on here.

https://www.mumsnet.com/talk/womens_health/5538268-dos-and-donts-for-hysterectomies?utm_campaign=thread&utm_medium=share

Lily livered? You and me both OP.
It’s a rollercoaster of knowing it’s a solution but being terrified of having it.
The worst part is waiting which gives you time to worry. If there’s any chance of a cancellation before October take it.
In the meantime identify your fears then read through the threads on MN about hysterectomies. I’ll have used a different username to reply to others because I’ve been where you are, know how you feel and how you’ll be once it’s over. If you don’t find the answers, ask for them here. 🤝

Please contact the hospital / NHS / your doctor and get all the info you can on your surgeon. If it were me, I'd have a folder on them in our face to face discussion, tracking their life history from birth to their most recent employee review.

Only mildly exaggerating. As a minimum, you will feel safer and more assured by knowing their surgical stats (if you can get this info, though numbers alone aren't enough as some surgeons take on more difficult cases - qualitative analysis / accompanying qualifying (redacted) notes on any issues are necessary). You will feel better being armed with info about the person operating on you and we should all have access to this info as standard.

Additionally: this surgeon knows that they are under scrutiny and that mistakes won't be swept under the rug.

Something important that people forget about is basic biology. You care more about a person you know than one you don't. The more contact you have with the surgeon and people operating / responsible for your care: the more care they will take. They'll be more likely to advocate for you. Especially if they like you, but that's actually not necessary.

That's the only thing that would put my mind at ease.

I wish you the best for your operation.

I had my hysterectomy done about 13 yrs ago, and can honestly say I was in no pain when I woke up from the op.

I had an interview for a fantastic job 5 days after the op and they offered me the job starting the following week, it was full time and too good to turn down. I made them fully aware about the op, and they were happy for me to work at my own pace till I was fully recovered.

I know not everyone has the same, but for me it was instant relief from the pain I previously had.

Please don't worry and listen to your body, if it says rest then rest.

Good luck

I had a hysterectomy last year for endo, fibroids and adenomyosis. I had to have an open one with a cut from navel to groin because of the amount of scarring. There were problems with my bowels and bladder all attached to the womb with adhesions, this was all sorted during the op. I had a week in hospital on a pain relief drip, which kept me comfortable. It took me 6 months to fully recover, but only the first few weeks had real pain and I was on opiates the whole of that time so it was manageable.

All the bladder and bowel issues I previously had disappeared with my womb and I think the hysterectomy is the best thing I've ever done.

You'll be fine, remember you often have to ask if you need pain relief, they don't always offer. Your recovery will be a lot quicker than mine as it's keyhole. Good luck!

Thank you, I will take a look at that.

Good to hear it has all gone well for you.

Thank you so much, I will go and have a look through MN for hysterectomy threads.

Sadly I can't bring the date forward via cancellation, I help care for my mum who is in the advanced stages of dementia and we needed the extra time to arrange for mum to go into respite care. We are currently in the process of viewing several care homes in our area, we have about 4 more to go and hopefully can get mum booked in. That will give me some peace of mind knowing mum is being cared for and dad can relax for a few weeks whilst I stay at home.

Mine was 4 years ago, I was initially frightened, on the day I just wanted it done, and over. Best thing I ever did. No pain at all. Went on holiday three weeks after - on my own. If I had to have it again tomorrow - I wouldn’t have a worry.

You might just surprise yourself.

Thank you.

Sadly my surgeon is the least personable health professional I have ever met and I've seen quite a few over the years. He is very abrupt and verging on rude at times.

However, I am very fortunate the hospital I attend is a BSGE centre (the nearest is miles away), he is supposed to be a very good endo surgeon and is one of the clinical leads at the centre, he is advanced trained in laparoscopic surgery. I have already put all of his details in ChatGPT and it's all very positive.

The wife of my DH's work colleague is a nurse and has recently retired. She worked in the department and says he is a very good gynae and she would have no issues having him as her surgeon so even though I am petrified and not his biggest fan I have to hold on to some hope that he is very good at his job.

Fingers crossed.

Thank you that is so reassuring to me, I have seen quite a few navel to groin hysterectomy stories on Youtube and Tik Tok, they all look very drastic but I am amazed how quickly everyone has recovered . So good to hear it worked out really well for you.

Thank you so much, I do love a positive story, keeps me feeling more positive about it all.

At the risk of revealing too much...I had it done 20 years ago after a history of periods all over the place followed by a stage 4 cervical cancer scare. Laparoscopy.

On my follow up appointment 28 days later, the consultant said I could resume sexual relations at six weeks post op.

Too late, Doc...already resumed AND enjoying climaxes!

Well that's superb news! That would definitely help put my mind at ease!

I had mine in october 2024. Thankfully didn't read horror stories until afterwards but they did freak me out so I had to stop. Recovery was tough but I am so so pleased I had it done. I have colleagues who suffer badly with their periods and heavy bleeding etc now and I can hardly remember what that was like now im free of it all. One helpful thing I read is that it takes up to 6 months to feel as well as you did pre op and another 6 months to feel better than you have for years and that is so true. Rest during your recovery but make sure you walk every day. Take all the help you can get and as much time off work as you need. Get a grabber so you dont have to bend and just concentrate on healing for the first few weeks. Seriously, it will transform your life for the better 😀iit feels scary but its so worth it. An important thing to remember is not to have penetrative sex too soon afterwards .. guidance is all over the place on this but my surgeon said 12 weeks as a minimum. Happy to answer any questions as I had found it hard to fi d positive support and stories.

Thank you so much, that's really helpful.