Recent diagnosis & upcoming hysterectomy - what should I expect?

Hello, this is my first post and I am so thankful to have found this group 😄 In the last 5 months, I have experienced surgical menopause, been diagnosed with endo and adenomyosis; and am due to have a hysterectomy in just under a fortnight's time.

I only discovered that I had endometriosis 5 months ago, when I went into hospital for a bilateral salpingo oophorectomy. The diagnosis came as something of a shock. I'm well into my 'half-century' and didn't have a clue that I had been living with endo. (I have been diagnosed with other health conditions, some of which have similar symptoms to endo).

What should have been a short procedure, turned into a 2.5 hour operation as the endo was widespread and deep infiltrating. I went into surgical menopause and started, what I hoped, was the road to recovery (and a life without periods). How wrong was I?!?

Post-surgery, I started to bleed every fortnight (worse than when I was menstruating) and began to experience pain and discomfort (which wasn't there pre-op). The bleeding didn't go away, despite increasing my daily dose of utrogestan (as instructed by my menopause GP and consultant).

In December 2022, my consultant referred me for an MRI. The results showed that I had remaining deep infiltrating endometrial nodules and adenomyosis, which has led to my upcoming hysterectomy.

I’m still processing all the findings, let alone the prospect of a hysterectomy! I will be undergoing the procedure at a BSGE Accredited Endometriosis Centre.

While I realise that the effects of hysterectomy are very much individual, any help or guidance on what to expect post-surgery, and what to do and/or not to do once home (apparently, I'm a dreadful patient at home) would be gratefully received.

Thank you

[Moon_maiden]

Hi

Sounds very similar to me the last few years. It’s really not pleasant, think you’re safe and the whole lot goes haywire. 🤦‍♀️

I always said I’d never have a hysterectomy, couldn’t wait to get shot, enlarged uterus, fibroids and Endo. It wasn’t any different to previous lap, much less pressure going on. I tried really hard to make sure there was a colorectal surgeon involved, I was told there would be, turned out not. I’d make sure in advance there will be one at least on standby and to check small bowel as well as large for adhesions. There should be if it’s a proper centre, but Gynae I had decided to go ahead without or even MDT and it was a registered Gynae who decided he thought it would be fine. Had further op for bowel adhesions, you don’t want that. 🙂

The RCOG has info on their site for patients which includes after a hysterectomy do’s and don’ts.

What things would you like to know?

[Hidden in reply to Moon_maiden]

Thanks Moon_maiden . I'm sorry to read that you experienced so many issues with your hysterectomy. It sounds like you really went through the mill. 😓

My surgery includes 'bowel-prep', so a colorectal surgeon will be on standby/involved in the procedure. Fingers crossed, that will mean I avoid any further surgery for bowel adhesions.

I'll certainly take a look at the RCOG site - thanks for the recommendation. Question-wise, I'm focusing on post-operative recovery, things like how long I could be expected to bleed, how heavy is the bleeding etc. I suspect that a lot of the answers will be "it depends..." as it will vary by each individual.

[Moon_maiden in reply to Hidden]

Hi

That’s really good there’ll be a colorectal surgeon 🙂 ask them to check small bowel area as well.

The info includes some post op info/care. I didn’t bleed after, I did use the leak proof bed pads for a few days just in case.

Wasn’t allowed to drive for six weeks, no lifting for at least two weeks.

How are you feeling about it all?

[BloomingMarvellous]

Best bit of advice is be kind to yourself and trust yourself. It’s easy to get persuaded otherwise. For the most part it takes way longer to recover than we expect and the hormone heaving can make it harder to manage.

There’s all the practical stuff like not lifting and not over doing it but I’d add into the list the need for friends support and social time at yours at a level you can enjoy. A big supply of favourite quiet activities really helped me as am an ants in the pants kinda girl. I was surprised at the amount of sleep I needed. Gentle short bursts of exercise helps big time with the bloat and gas pain. Isolation is a killer in the recovery phase. Ensure you’ve got very elastic trousers, big tops and a large stock of pads while the internals all reorganise themselves.

[Hidden in reply to BloomingMarvellous]

Thank you BloomingMarvellous for your kind words and sage advice 😊 I'm also an 'ants in the pants kinda gal', so will certainly get stocked up on quiet activities. I have a stack of kindle books, audio books, and activity/brain games lined up.

I'm still on the hunt for some very elastic trousers! The best I have are some PJ bottoms which are on the large side and have a draw string waist. I remember that after my bilateral salpingo oophorectomy, I couldn't bear anything touching my stomach for quite a while after surgery.

[BloomingMarvellous]

It might feel like quite a lot to take on but I’d seriously look both pre and post op doing pelvic core therapy. The pre because it will dramatically help with recovery and loosening off of the overtight ligaments and muscles beforehand that are part and parcel of the endo and adenomyosis journey. Your BSGE centre ought to be able to supply or direct. I like Dr Angie Muller’s @corerecoverypt if you can’t or want more than the NHS. The breath work is super useful. (You need a pelvic floor specialist for that not just a standard physio ) Whatever you do - no kegals !!! Just overtightens the already overtight. It can make it easier to work out what’s endo etc related and what’s not as well as reducing the pain. Post surgery it helps with avoiding frozen pelvis, things dropping more than they need too in the long run and more pain than necessary. Obvs discuss which are appropriate and how soon post surgery.