Questions to ask specialist before hyster... - Endometriosis UK

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Questions to ask specialist before hysterectomy.

dawntildusk profile image
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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

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dawntildusk
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5 Replies

I am due to have this surgery next month (4 weeks to go) and I had my appointment with the consultant in early January.

I asked to see the photos from my last surgery (I had exploratory surgery in november so they could plan for the hysterectomy) and was talked through those.

I had a long list of questions that I asked them. I asked for confirmation that the hyst is necessary and also whether it was really necessary to remove my ovaries. I checked exactly what they will be removing (so US ligaments/cervix etc)

I have a large rectovaginal nodule (2x3cm) so the bowel surgery/resection and colostomy was discussed.

I'm having a cystoscopy/stents put in so they talked me though the removal of the nodule by my left ureter and the bladder surgery/bladder resection and the catheter I will need afterwards.

I asked what impact this will have on my sex life, and using HRT after the surgery, and what happens at 50 when I have to stop taking the HRT. I also asked about recovery and what to expect, how long my hospital stay will be (3-10 days, depending on the extent of the bowel surgery). I also had a long talk with one of the specialist nurses about coping emotionally with the surgery and the fallout and also how to get through the next few weeks while I wait for it.

Hope this is helpful. x.

dawntildusk profile image
dawntildusk in reply to

thank u for your reply. there really is so much to think about isnt there. i was going to try ask some questions when i go for my pre op next week. what did they say about when u r 50? when prev discussed he said he would def take both ovaries because the chance of repeat surgery would be so high leaving them in. i have struggled to cope with the impact of endo diagnosis so will def ask about extra support. going to need it. did they say what the risk of prolapse is?

in reply todawntildusk

They said when you stop taking the HRT at 50 you will have menopausal symptoms then due to the fall in oestrogen (which seems a bit unfair, really!). I didn't ask about prolapse as the bowel surgery is a bigger concern for me at the moment. They also told me the ovaries had to go because it was just not worth keeping them and risking further surgeries that could permanently damage the bowel. Their attitude was that treating the loss of hormones was easier than treating a trashed bowel and that basically with endo this severe, my options are quite limited :/

It's been a difficult journey as I wasn't diagnosed until last year by which time a hysterectomy was my only option. I'm pretty frightened about what's to come, just trying to get through the next few weeks and keep positive.

Marcia71 profile image
Marcia71

I'd ask how they intend removing endo as it must be excised at same time else it will keep growing. Also ask if they use anything to help prevent adhesions - they should use a barrier. My bsge uses a special gel. And see how they will do actual op. Best for endo sufferers is laparoscopy but you may need abdominal.

I say all this as someone that had hyster with a general gynae and he did it abdominally and left endo behind so I'm in worst pain than before and I'd hate others to suffer. I'm now with bsge surgeon and on list for excision.

As to hrt try tibolone (Livial) first as synthetic so less likely to cause problems. It did nothing for me so I'm now on Kliovance a combined one which is what specialists recommended and it helps with hot flushes which were just horrid before.

Take a look at hysterectomy associations website too as loads of useful info.

Good luck.

dawntildusk profile image
dawntildusk

hopefully we will get some relief after its done!! ive started to write down a few questions now so im armed for my next appointment. you have all come up with some that i would never have thought of on my own thank you :-) definately asking about excising endo again. no point having it done if they only doing half a job. im hoping will be done laporascopically. recovery has been hard enough for me that way so id like to avoid open surgery if i can. how long was your recovery?

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