Has anyone had a hysterectomy?

[MyheartgoingBoomBoomBoom]

What has been your experience with the op and recovery?

I am almost 51 and have recently discovered the reason for decades of gynae issues that I’ve suffered are probably all down to the deep endometriosis which has recently been found on a pelvic MRI. It has also picked up severe adenomyosis.

I now have to wait on a very long NHS list to see someone from the endo team. My gynaecologist has said I will most probably need a laparoscopy to confirm the endometriosis followed by a hysterectomy.

Tbh, I don’t have a lot of faith in the NHS, not only for this huge delay in my prognosis and treatment but also due to family members who were let down badly. I’m petrified of having a big op such as a hysterectomy.

I have also suffered with daily, awful digestive issues for 25 years (maybe connected to the endo, maybe not, after 25+ years of being told most of my issues where in my head I don’t know anything anymore) and am really worried the hysterectomy will exacerbate the gut problems as I’ve read the op can very much disrupt the whole digestive system.

If you have had a hysterectomy how did it go? What was it like and how was your recovery?

Should add that I have quite a physical job (PA for a disabled person) so will probably need quite a bit time off (which in itself will be an issue as I’m self employed).

I am honestly so anxious about the whole thing and wish there was a way to solve the problem without major surgery but I appreciate life never goes smoothly.

How will it be done?

What is their rationale for the surgery? Are you postmenopausal? Endo and adeno tend to improve/go away after menopause. If not there are other treatment options like zoladex or prostap which can put you into an artificial menopause.

If you don't want a hysterectomy then don't feel pressured into having one. There are still options available to you.

I’m not sure tbh as I’ve not seen the endo team yet, my gynae said I’ll need the hysterectomy.

I've had a hysterectomy 🙋‍♀️ I had it done in 2016. I read so much on the Internet prior and heard so many horror stories about awful recoveries etc, I was very anxious! The reality is, I was in 'discomfort' and bed rest for around 3 weeks at home, but could slowly hobble about to go to the loo etc (just very slowly and carefully so as not to tear any stitches) I had a good support system, DH was amazing bringing me food and drinks etc. You'll definitely need someone around the first 2/3 weeks.
I was back at work within 6 weeks, although at a desk (definitely would have been longer if I had to lift or do a manual job as you risk tearing)
It was a much easier process than I had expected and I had abdominal surgery. A lot are keyhole, which is a much faster recovery.
I've had no issues since, and kept my ovaries so didn't go into Menopause.
No periods is a god send 🙏

Lurking as I'm being seen by an endo specialist centre next month

I am still having monthly periods so in peri.

The hysterectomy will be due to the adenomyosis.

From everything my gynae has told me and from what I’ve been reading online adenomyosis doesn’t go away post menopause. I also believe it’s not fully diagnosed until the uterus is examined post hysterectomy. I definitely wouldn’t even contemplate a hysterectomy if I was only dealing with the endo.
Hopefully some meds such as those you’ve mentioned will see me though.

I have joined lots of endometriosis support groups and from the info I’ve gleaned, it’s seems many do find relief post menopause but quite a few still have issues. Just hope and pray that I will fall into the former category 🤞

BringMeSunshine48 thanks for your positive story, I am a bugger for going down rabbit holes full of scary medical tales.

Paw2024 good luck, hope it goes well.

Just to say - a hysterectomy doesn’t solve the endometriosis. You need to find out what stage your endo is and where it is in the pelvic cavity. Unless all regions of it are excised then you will still experience symptoms from it I’m afraid.

I had a radical hysterectomy in 2018. I hardly remember anything about it to be honest, no aspect stands out as memorable. It all went smoothly. I was home after 24 hours. I was back at work full time after 6 weeks. I don't remember any particular pain or disability. Nothing remarkable at all.

No menopausal symptoms either, well maybe the occasional hot flush, nothing more

I LOVE the fact I never have to worry about periods again.

I had one 3 years ago age 52, also had tubes and ovaries out. I had a history of breast cancer and had developed pre cancerous cells in my uterus.

Recovery didn’t take long but the first couple of weeks were harder than I had anticipated. Pain and bloating were an issue. Probably not helped by the fact that I’m allergic to codeine so couldn’t take them, which left ibuprofen and paracetamol - they didn’t help much.

After 4 weeks I was feeling much better and more like me. I was working in a nursery so took 6 weeks off.

I had hysterectomy a few years ago, by keyhole surgery. My recovery took a few weeks, but you’re more active then you think.

week 1 - sluggish, post op, probably effects of a anaesthetic, sat on sofa, watched films, read books, did nothing (quite enjoyable in one respect)
week 2 - more active, short walks, still took it easy, had mum staying to help out
week 3 - light cooking, became more active,
weeks 4-6 - increasing mobility, and doing stuff,

Back to work after six weeks, but also desk job.

The main problems was tiredness, constipation and shoulder pain. Don’t recall too much pain from op, more uncomfortable around stomach region. You have to take it easy and listen to your body. You may only have small wounds on the outside, but there’s huge healing going on insides. You can’t lift, carry heavy things, stretch to get things etc.

My story is identical to this. First 3 weeks recovery was slow but by week 5 I was ready to go back to work. Glad I had it done and had normal menopause about 8-10 years later.

I should have said in my OP (sadly can’t edit it now) the main reason for the hysterectomy is due to the adenomyosis, the MRI happened to pick up deep endometriosis too. Obviously will need a lap to discover the full extend of the endo.
My sister has endometriosis so sadly I’m all too aware it doesn’t go away.

Me too! Googling is our worst enemy! In a way, because I'd 'over googled', It helped because I was utterly dreading it - it came as a pleasant surprise how easy the whole thing was compared to what I was expecting!
You'll be absolutely fine, 6 weeks goes quickly. Enjoy being waited on in bed if you have support around you! 🥰

sharptoothlemonshark that’s so good to hear, thank you.
Thank you MissyB1
Thanks Riverlee good to hear it went well.

I'm 8 months post abdominal hysterectomy and it was the BEST thing I have ever done. The days after the op I was a mess and thinking "why did I do this" but just take it really slow and steady and you're soon back up and running, with all your gynae problems behind you. After 3 months I thought I was back to my old self but looking back it actually took 6 months to get my full strength back, and now I felt amazing!

Best advice I can give is to get as fit and strong as possible before the op which will help your recovery.

BringMeSunshine48 that’s how I end up, I work myself up for the absolute worse case scenario so hopefully it can never be as bad as I anticipate lol!

I had a hysterectomy when I was 40. I'd read (and heard) horror stories of recovery times and was wondering how on earth I was going to cope with 2 small children (was a single parent at the time).

In reality the first week was bed rest, second week taking it easy and third week I was pretty much fine and back to driving. I've had much worse recoveries from more 'minor' ops.

Thanks for putting my mind at ease.

Total hysterectomy at 40. Spent 24 hours in hospital after keyhole surgery. Recovery was fairly easy and I was back to work (desk job) about 2.5 weeks later and driving myself there. The menopause however was another thing entirely and that made me feel awful for a few years.

I had a full hysterectomy last year after years of suffering with endo, recurring complex ovarian cysts and adenomyosis. I was told that the cysts could have become malignant in time. Also the bulging of the uterus caused by adeno can cause pressure on the ureter and in turn cause kidney damage - in my case this was happening.

I waited about 14 months for the op . It was done by laparoscopy. My op was at 11am and I was home in my own bed by 4pm the following day. I was moving around and showered myself the morning after my op and tried to walk about the house a little bit for the first few days. About 5 days after the op I had a short walk outside and about three weeks post op I was pretty much back to normal. One of the trickiest parts for me was getting the bloody surgical stockings on.

Leading up to the op I worked on my fitness by walking regularly and lost a bit of weight to give myself the best chance of quick recovery.

The most challenging part for me has been getting my hormone levels to a reasonable level again. It's been trial and error for the past year but we are getting there and the consultant and nurse at my endo clinic have been AMAZING in their after care. I went straight onto HRT because I was 45 and barely in peri-menopause so crashing straight into a surgical menopause would not only have been mentally catastrophic but also increases later risk of bowel cancer and dementia.

All in all, whilst it is not a particularly pleasant experience to have to go through, it hasn't been awful. Good luck.

I am concerned this undiagnosed endo has caused issues in other parts of my body. I’ve had so many issues with decades of gut problems. I was also diagnosed with a very large Bosniak kidney cyst in 2019, the NHS has now discharged me from their monitoring programme but I do wonder if it’s related to the endo? I will have to ask when I (eventually) get to see the endo team.

I also seem to have a lot of nodules in various places in my body, I’m starting to wonder if they are endo areas?

https://www.mumsnet.com/talk/womens_health/4978164-hysterectomy-what-to-take-to-hospital-how-to-recover-at-home?page=5&reply=132343069

Some useful tips on this recent thread.

I totally get that. I still have concerns that they may have missed some endo in my bowel but I have been assured they didn't. After my CT scan for the most recent complex cyst they spotted "lesions" on several sites on my bones and I needed an MRI and a nuclear bone scan. The good news is that the lesions were deemed as "clinically insignificant". So who knows??

I just know that post hysterectomy I am not in agony anymore.

I've also been told that I have to take both oestrogen and progesterone on the off chance that any endo HAS been left in my body. The progesterone will stop it's growth.

Oh...if you do have abdominal not key hole....make sure you get some enormous, belly smacker, comfy knickers! Weirdly they feel like they are holding you altogether! You crave support all around your tum and I was soooo glad I had them!