Questions to ask specialist before hysterectomy

[dawntildusk]

Hi all.

I have been put on the waiting list for a Hysterectomy at my local bsge centre but have not had appointment to discuss with consultant yet.

What questions would you be asking your specialist about Hysterectomy?

(i have severe stage 4 endo, suspected adenomyosis, and pcs) (will be removing ovaries )

Tia x

[RachaelE]

Ask about complications such as granulomas and adhesions, and what symptoms to look out for. I developed both but GPs kept diagnosing UTIs and didn't examine me. The granuloma was growing on my vaginal cuff scar for six months before diagnosed and was too big to be dealt with by GP. Had to have it excised and cauterised under general. Adhesions also formed between my bowel and cuff which caused horrendous pain and had to be divided, again under general. My recovery has taken 15 months and still not quite right. I had LAVH with BSO, with one of the top surgeons, so there's no guarantee that it will be trouble free, although he told me I was particularly unlucky as to have both complications is rare.

[mylady77]

I'm waiting for my follow up appointment - had my hysterectomy beginning of December.

I have ME/CFS and had mentioned this to my doctor but he didn't comment. Nobody talked about the impact surgery could have on this and I'm currently feeling dreadful, and gradually becoming worse.

My advice would be - if you have any other conditions alongside the endo/adeno/pcs to ask about the effects the hysterectomy might have on them and on your recovery.

Had I realised how severe my reaction might be I'd have made better plans regarding work, childcare etc.

Best wishes x

[dawntildusk]

thanks ladies.

ive never heard of granulomas so will def look that up to find out more.

it is so frustrating to have the surgery and still not be right. ive not had a good experience myself so far.

how old r u both and why did u have hyster? how long did u take off work?

[RachaelE]

I had a hysterectomy because of pain and suspected adenomyosis. In the event, I didn't have adenomyosis but the pain was caused by adhesions between my left ovary, Fallopian tube and sigmoid colon. In hindsight it could be argued that I didn't need the hysterectomy and that dividing the adhesions would have resolved the pain. However, the only way to diagnose adenomyosis is to look at the uterus under a microscope. I'd been on a trial of prostap and that suggested a hysterectomy would resolve the pain. I was in a bit of a tight corner tbh, having explored all other options. I was also having a horrendous time with the perimenopause and so having everything out put me into full menopause and I can just have a level dose of oestrogen only HRT. I am better in myself but still dealing daily with pain from all my surgery. It's all too easy to overdo it and aggravate the internal scar tissue. Most women, however, never look back and say it's the best thing they ever did. There are too many scare stories out there, but it's best to be armed with questions so you can make an informed decision.

I'm interested that you have a BSGE Centre. Is that NHS or private?

[dawntildusk in reply to RachaelE]

nhs. didnt find out until after my first failed lap under general gynae that there was a bsge approved endo centre in same hospital so i requested to be transferred to their care. not that i should have had to ask myself. i know i will have to be good to myself during recovery. felt pressured to go back to work far too soon with last ops. how long did u have off?

[RachaelE in reply to dawntildusk]

It was 10 weeks off work after the hysterectomy, but that's because I work in a school and the end of the 8 week normal recovery period was the start of the Christmas break! I could have gone back to work a little sooner, but glad I didn't because the healing takes so much energy I would have been exhausted trying to do my job. Also, my consultant recommended the full 8 weeks because I am on my feet all day. A lot depends on what you do. After other minor ops under general I always need at least a week because I don't recover very quickly from the anaesthetic. Blood pressure drops through the floor and I get nausea for several days. If you are signed off by the hospital, it would be a breach of their insurance for you to go back sooner. They should not put pressure on you. It's illegal. If you still don't feel right after the sick note runs out, go back to your GP for another sick note or phased return. Do not go back until you feel completely ready. The decision is yours and no one else's.