Tips for healing post hysterectomy - Endometriosis UK

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Tips for healing post hysterectomy

EverlongFoos profile image
14 Replies

Hello,

First time posting. I had excision surgery, bilateral oopherectomy and hysterectomy 2 days ago privately. I am 38 years old.

From the end of August 2024 I was having horrendous pain that was sending me to A&E frequently. After collapsing at home in October, we decided to get initial tests done privately to find out what was going on. I had had excision surgery back in 2021 after an ectopic pregnancy and miscarriage, and back then I was stage 2. The contrast mri showed substantial adenomyosis, an endometrioma in my left ovary, my left ovary was tethered with adhesions to ligaments and my bowel.

I’ve been unable to work since October and am still waiting for an initial appointment on the NHS which is scheduled for May! I have a 2 year old boy and my husband essentially became my carer, so we decided to go private for the surgery, which I had 2 days ago.

I’m glad we did as my consultant said there was a lot of endometriosis in my pouch of Douglas which did not show on the mri in October, which signifies stage 4 endometriosis.

Has anyone got any tips for recovery from this surgery?

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EverlongFoos profile image
EverlongFoos
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14 Replies

Hi, hope you are feeling good today.

My number 1 tip is don’t try to do too much too soon. It’s going to take your body plenty of time to recover. I was surprised at how long it took. 10 weeks in and I was still very tired and slow on my feet. I’m very fit and active usually and had a straightforward surgery.

You need to give yourself and your body the time it needs to recover as it’s been through a lot. Everyone is different. I found it very frustrating as all the literature from the hospital seemed to suggest that you should be back to ‘normal’ after 8 weeks but that’s not always the case. Especially with adding endo and adeno into the mix! I think it was almost 5 months before I was anywhere near ‘normal’. So be kind to yourself.

Building a strong pelvic floor if important after surgery. My consultant told me to do pelvic floor exercises every day for the rest of my life! I found a great pelvic health specialist who has lots of free resources online for this.

I have to say though, boy was it worth it! The best decision I’ve ever made and I wish I’d done it sooner!

Hope your recovery goes well.

Rainbow2468 profile image
Rainbow2468 in reply toUsername12345678

Back to normal after 8 weeks is a huge lie, why they tell people this nonsense is beyond me, i know of people still struggling years later sadly 🙁

brontec profile image
brontec

Lots of time and rest basically. Listen to your body and take all the time you need. That’s it. I had the surgery in late August last year and I just followed this advice. The rest falls into place as only you know what you need.

Selfel profile image
Selfel

I can't add any advice, just to say I am following because I am on the list to have this surgery soon. Fingers crossed we all recover well.

SophieA profile image
SophieA

Glad you managed to finally get it sorted after such a journey. Definitely agree that it takes longer than you read, I'm 5 months down the line and though feel totally recovered on most fronts, still tire after a lot of walking etc.

Build up walking slowly. Also recovery isn't linear, so if you have a harder day, take it easy.

I found peppermint capsules and tea really help with gas post surgery. Be careful about not lifting heavy stuff, it's easy to forget esp with a kid!

Pelvic floor stuff but after a few weeks. Are you going to see a physio? I saw one who gave lots of good exercises (I was often surprised at how gentle and gradual they were as I do yoga so had to try not to push myself too much) happy to share the exercises if you want to DM me.

Also, might want to consider some laxative type thing, I didn't with my first laparoscopy and it was horrid but did with my hysterectomy and it really helped!

I wore maternity trousers/joggers for weeks too which helped.

Main thing I'd say is go easy!!

Stephstark25 profile image
Stephstark25

Please could you send me the pelvic floor exercises? I'm due a hysterectomy soon and want to get ahead!

SophieA profile image
SophieA in reply toStephstark25

For the pelvic floor exercises my physio recommended the squeezy NHS app. Think its £2, essentially it's squeezing and holding for ten seconds ten times then doing ten fast repetitions too and just a timer to guide you doing it, but sure they'll be YouTube videos etc if you look up kegel exercises.You'll likely be given post hysterectomy physio exercises too (if not you should ask) which are more like pelvic tilts and hip exercises and told how to gradually build these up.

Good luck with the surgery!

Stephstark25 profile image
Stephstark25 in reply toSophieA

Thank you 😊 I'll check the app out!Yes they said I would see a physio but that the NHS can only offer the one appointment after surgery and it wouldn't be on going through them.

SophieA profile image
SophieA in reply toStephstark25

Hopefully they will give you a leaflet of different exercises to try and some info on how to gradually build them up, if not, there are plenty of NHS docs from different Trusts if you do a quick google.

A few months after surgery and once healed, I bought a pelvic floor exerciser thing that a friend recommended- it is pretty expensive and slightly bizarre- but basically is a sensor which links to a phone app and you play games on your phone by squeezing and releasing your pelvic floor!!

EverlongFoos profile image
EverlongFoos

Thank you everyone who has replied. I have been given some basic exercises to start doing this weekend and I will be seeing a physio after 6 weeks to support my recovery. I’ve been told up to 8 weeks recovery but it’s good to know that it could easily be longer.

Crazy4cats profile image
Crazy4cats

I just wanted to say, how amazing this community is. All the advice people have given is exactly what I would have suggested. The peppermint capsules and tea will be a life saver. My post op gas was horrific, nothing like I had post c.section. Joggers/loose fit clothing was key for me.

Pelvic exercises- I waited a few weeks but I did lots of pre op work, and started to build on a habit of doing them.

I recommend the free app called "Kegel". Both women and men are not using our pelvic floors like we used to, so we need to strengthen them.

Have they started you on HRT yet?

Go easy on the recovery, everyone is different.

Take care.

EverlongFoos profile image
EverlongFoos in reply toCrazy4cats

Thanks for this, I’ve downloaded the squeezy app for the exercises. Have tried this morning but only managed 1 hold before pain set in so I’m going to leave it until the end of this week and try again! I’ve been given HRT patches. I’ve got an allergy rash on my abdomen which we are not sure yet whether it’s from the surgical glue or the HRT patch! So I’m having to take antihistamines and ride it out.

Sunset-lady profile image
Sunset-lady in reply toEverlongFoos

If you are allergic to the glue (and many women are) swap to the gel and natural progesterone Utrogestan x

SophieA profile image
SophieA in reply toEverlongFoos

Yeah, definitely wait a little while to let your body heal before doing pelvic floor exercises, I started them I think about a 3 weeks- a month after hysterectomy . I think best thing in early days is rest, gentle walks when you can and doing all you can to lift your spirits. You've been through a lot and still having to suss out stuff like reactions to the patch, so go easy! Also celebrate the small steps, even getting up and down stairs in the first week felt a task and a half for me .

Totally agree, I'm so glad I've come to this group, it's hard not having friends who get it so it's nice to have the support and helpful suggestions! X

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