Any general advice about a full hysterectomy?

Hi Samantha7 

I’m Anne, one of the Community Champions here on the Online Community and, although I'm not a member of this group, I noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list again.

I've done a search in the group, looking for previous posts which mention having a hysterectomy, and found the most recent poster was AMESLOU . I've 'tagged' her into my reply to you and hope she'll pop on and share her experience with you.

While you're waiting for replies, it would be great if you could put something about your diagnosis and proposed treatment into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

Wishing you all the best with your upcoming treatment

Hi Samantha7 and welcome to the ovarian group.

I’m sorry you haven’t had a reply yet to your post, but my reply will give it another boost where it will hopefully be seen by other members who have been through this,

I did notice you had also posted in the womb group and I’d agree with the advice there to start a separate thread to introduce yourself to the ladies there.  Many members in the womb group will be able to share their experiences of the surgery and recovery.

I also had a gynaecological cancer and had major surgery which included losing my whole reproductive system. My experience therefore would be different to recovery from a hysterectomy only, and I was post menopausal so didn’t experience having to go through a sudden menopause.

In terms of recovery from the surgery, it can depend on whether the surgery is open abdominal or laparoscopic (keyhole surgery) as recovery from keyhole surgery can be quicker.

Hopefully you’ll have some replies soon from ladies with the right experience to help.

Sarah xx

Hi Samantha7 (thanks for tagging me, latchbrook ).

I am 9 weeks post surgery after a total hysterectomy with a midline (vertical) incision and have just started chemo.

I'm really happy to answer any questions - do you have specific ones?

It's important to remember that there are different types of hysterectomy and people heal differently, but I can share my experience for sure. Generally, it's a major operation and it takes time, rest, help and patience to recover - don't underestimate how much!

The menopause (I'm 45) hasn't been horrific, but also not pleasant. I'm not allowed HRT due to diagnosis and treatment, but this might be different for you. Again - everyone's menopause symptoms are different and of different severity. I have had some hot flashes, night sweats, skin and hair changes and brain fog. 

It's a lot to deal with alongside trying to heal from surgery, so the emotions can be big and you need to be kind to yourself.

Please feel free to ask anything else and wishing you all the best for your healing!

Amy x

I’m replying rather too late for you but at 69 I recovered much faster than I’d imagined from my total abdominal hysterectomy + BSO for my very large ovarian tumour. I just gritted my teeth thru the pain of getting out of bed asap after surgery, and doing lots of walking every day afterwards. I hope you’ve recovered from the surgery now x

Hey sorry for the delayed response I didn’t see this. Your response is perfect for me as I’m in a similar position - vertical incision, removal of womb, not allowed hrt. Also having groin and pelvic nodes removed. My problem is I feel absolutely fine now. I just have this swollen lymph node which is why I pursued testing. Fortunately I have up to 6 months sick leave so I’ll see. I’ll probably have more questions afterwards so I’ll come back to you. Although one question, when did you feel able to go for a walk? Thanks xx

Not too late at all. My surgery is on Monday so I’m psyching myself up. Thanks so much for sharing your experience xx

I was able to potter about the house fairly quickly, but in terms of going out for an actual walk - about 8 weeks I think? And then not far. It really is very major surgery and you use your core for everything, so it takes plenty of time and rest to recover fully - but hopefully worth it in the long run!

I am back to easily walking 5/6 miles now and starting some strength training again. It’s been a slog but getting there! I started chemo at about week 7 which I think probably slower my recovery from then onwards as well. 

My top tips for surgery are: 1) get lots of exercise tomorrow and practice deep breathing; 2) try to turn your head off—easier said than done, I know, but in the days before my surgery last year I kept mentally repeating the “icy calm” phrase someone recommended as a mantra to quell nerves before exams when I was a student, and on the day of surgery I’d already kind of detached from worrying; 3) Start doing ankle & leg exercises & deep breathing as soon as you wake up from anaesthetic; 4) get out of bed for a short walk as soon as you can—and tbh once you’ve rolled & levered yourself very painfully out of bed soon after surgery, standing upright is actually less painful; 5) take some seasoning to liven up the hospital food (mine was Tabasco); 6) soft-top bikini or big granny pants, and dungarees or dresses, as anything with a waistband could be uncomfortable

good luck on Monday

xx

I literally will have my big girl pants with me. I’m single, no kids but my friends have been unbelievably amazing but I am embracing the opportunity to be alone, at least away from my social circle, so I can detach on the day. It’s totally out of my hands so I just want to let go. Thanks so much for the movement advice post-op xx