Hysterectomy questions

[Hannah27]

I've had 2 laps, last surgery there was hardly any endo and it was likely adeno would be the cause. Bleeding and pain has been exactly the same since last surgery. I fainted from my last period as so heavy and ended up off work on morphine.I have a private appointment tomorrow and want a hysterectomy as soon as possible.

What questions would you ask?

What do you wish you had talked through before surgery?

Waiting list is around a year on NHS in my trust, private seems about 6-8 weeks but is around 10k. Has anyone gone private?

Thanks.

[Sunset-lady]

I'm about to go private with robotic hysterectomy. It's 10k but I'm bleeding all the time on zoladex. I'm on holiday right now and taking tranexamic acid which has made me look pregnant. I'm speaking to my consultant on Friday. I'm very frightened of this operation as they tried to do it in 2023 but abandoned it after finding endometriosis. I think just make sure that it's an endo specialist x

[Hannah27 in reply to Sunset-lady]

Yes it's my endo consultant I'm seeing privately. I feel you with the tranexamic acid. I always look huge! I hope you manage to enjoy your holiday xx

[Hannah27 in reply to Sunset-lady]

Did you find any questions helpful? Xx

[Sunset-lady in reply to Hannah27]

They'll want to take ovaries if it's endo because estrogen drives endometriosis so you could end up back where you started post hysterectomy which happens to many women on here. I'd ask if it's robotic or not and yes, about sexual function but from what I've read it depends on how you orgasm. You may need testosterone post op but honestly I doubt he'll know about hormones and HRT. They just don't know about them!

[Regenallotment]

I saw a private gynae for a £250 consultation just after Christmas. He actually sent me back via NHS saying that he’d be wasting my money as needs them to identify if endo is there to ensure long term solution of hysterectomy is right for me. If that’s clear (like your latest) he’d be happy to proceed and it was about £8000 so awaiting hysteroscopy and laparoscopy and hopefully then I’ll see him after that. He gave me stats on how many women don’t benefit long term from hysterectomy. He hinted it’s likely I’m one of them. 51 with a regular cycle and classic symptoms plus fibroids plus adeno. In your position I’d be going for it 🙏

[Regenallotment in reply to Regenallotment]

Questions-

Ovaries or not (recommended to have them out) a colleague didn’t and now has cysts causing problems.

Follow up HRT management advice?

How do they minimise risks to bladder ureter? Sister in law had a catheter and bag for 3 weeks after hers before it recovered, she’s fine now.

Cervix or not?

Can’t think of anything else. My NCT trainer 24 years ago taught us BARE.

What are the basic recommendations

What are the alternatives

What are the risks

What are the exceptions/exclusions

You could always ask, what should people ask but they don’t 🤣

[Hannah27 in reply to Regenallotment]

THANK YOU SO MUCH!!! I know he suggested removing cervix but I want more info on sexual function etc.

Leaving ovaries. Which is also what I want. Im not ready for menopause yet, I know what that can do longer term with bone density etc.

An phew. Thanks so much for this reply, got my mind whizzing to slow down a bit! Xx

[Sunset-lady in reply to Regenallotment]

Can I ask why he thinks you won't benefit from a hysterectomy?

[Regenallotment in reply to Sunset-lady]

He thinks I will benefit if they can rule out endometriosis first. I think because I’d be seeing him privately the bill in surgery could spiral if he has to address endometriosis while he’s in there. So it’s hysteroscopy laparoscopy first.

[Sunset-lady in reply to Regenallotment]

I'm having a complex hysterectomy as I have stage 4 endometriosis which is making me hemorrhage without zoladex.

[JOSANDY40]

Hysto should only be considered as the very last resort especially if your young. There are many issues that could effect the future. Hormone replacement or not being able to take it, ageing, new problems with nerve pain, bowel/bladder damage, incontinence. Cervix removal, orgasm as no cervix, intercourse pain. The sling that's put in to support your other organs eg. Bowel or bladder prolapse, from dropping can fail. These are risks. Even with having a Hysto if the Endo was outside the reproductive area the Endo can still grow with or without hormone replacment. On the positive side everything maybe perfect but recovery is long so you can't just roll back doing much or physical for several months.

For me it's a no go til I'm older. Since my periods stopped at least that's a few symptoms which have gone. My bowel suffers the most, sometimes lungs pain. Unfortunately all of us can't have that perfect life that other enjoy without Endo. We do our best, working around the illness.

Wishing you my best.

[DutchVanderling in reply to JOSANDY40]

I was offered a hysterectomy along with either a coil, meds or laparoscopy before I had a proper diagnosis. A few minutes to make the choice - I asked if it would help and he said ‘it might.’ 🤷‍♀️ for info he’s a specialist in endo and I’m 38 with no kids, but sex literally feels like I’m being torn apart and my smcervix is completely immobile (which obviously makes it worse). It’s interesting in this group to see how many have had time and or not been offered this surgery before a diagnostic has em been performed (adhesions and what not were confirmed in TVU but MRI was in WRONG PLACE to see and no specialist reviewed it then). So yeah, I’m super glad I opted to say ‘let’s see what is actually happening in there first.’

[JOSANDY40 in reply to DutchVanderling]

Yes a fixed bowel or cervix can cause pain and difficulty. With me emptying bowel, where stools remain sitting before exit. Several years I had inflammation caused by the bowel backing up. I now do excerise with pelvic to muscles to up and down to release stools. Sometimes I scoop up A couple of yrs ago during taking Morphine into the bowel to release poo, stuck. By drinking higher water, increasing soluble fibre helps well.but their was 2.mths where nothing worked. I endeddup on a bin bag on the floor, with surgical gloves, pushing up by fingers on bowel pushing down to empty my bowel of 8days. Since I bought a douce which I only get past 5 days of emptying. I eat more soluble fibre, taking Flybrogel Merbrive once or twice a day, uptake of water. My bowel is bedded down, ridged with inflammation caused by Endo, it is difficult.

[DutchVanderling in reply to JOSANDY40]

No joke, I always wondered why I was constantly being ripped apart during sexual intercourse. So from that to ‘hey, a hysterectomy *may* help a bit’ after twenty years was a little shocking. Stool wise I’m lucky as most of my issues seem to have resolved a lot of the decades - that or I’ve gotten used to them and coping techniques. To be asked about a hysterectomy without a lap was shocking as heck to me tbh.

[chocoholic30]

hi

I had a full hysterectomy done on Sat and it was through NHS but through a private company called One Health! The NHS outsources to them to reduce wait times! My doc said that people can ask to be referred to them! Worth an ask?

[JOSANDY40 in reply to chocoholic30]

I hope this is the end to what you have suffered.Please keep us all updated over the next 2yrs as this will be helpful to others making there choices including your age.

Wishing you the best for recovery and future. x

[MyStar86]

wow so people have really given worst case scenarios which makes me angry!! I went private but I have insurance I had my endo treated with 3 separate surgeries first and then had my hysterectomy they removed my ovaries, tubes, womb and cervix at aged 35 and it was the best thing I ever did the endo surgery helped marginally but the hysterectomy was amazing I am on hrt I have the oestrogen spray and pill progesterone as you will need to have progesterone if you have endo. Anyway I just want to say it was so worth it but I did treat all the endo first which is the best way around. Any questions I’m always here so you can send me a direct message xx

[Regenallotment in reply to MyStar86]

This is very reassuring thanks for sharing 🤗

[MyStar86 in reply to Regenallotment]

Sometimes it’s good to hear both sides of a situation but it really was the best thing I ever did and whilst people say it’s not a cure for endo it’s made my life 1000x better so I would definitely say going through the surgery is well worth it. I also suffered my whole life with PMDD but since I’ve had my hysterectomy and hrt I no longer have my PMDD so I’m like a new woman xx

[Regenallotment in reply to MyStar86]

That is wonderful to hear 👏🥳

[DutchVanderling in reply to MyStar86]

I’m relieved to hear a good result as it’s something I’m honestly considering and feeling I’ll having regardless. I’ve heard a couple of positive ones before - honestly the thing that scares me is losing my ovaries bizarrely enough. My cervix has caused me nothing but grief. I’m so grateful for your positive experience being shared. Gives me a glimmer of hope.

[1Poppy1234 in reply to MyStar86]

Why progesterone with endometriosis?

[MyStar86 in reply to 1Poppy1234]

Post hysterectomy you have to take progesterone to prevent endo from growing back that’s why you can’t just take oestrogen hrt which would be the case for a normal person having a hysterectomy not due to endo xx

[1Poppy1234 in reply to MyStar86]

How did you find this out? I had a full hysterectomy and oophectomy and have had nothing with no hosp follow up. I didn't know this it's so hard to get any concrete info I've searched read etc.

[MyStar86 in reply to 1Poppy1234]

Do you not take any HRT? If you are not taking oestrogen then you don’t need the progesterone you just need to take the progesterone if you are also taking oestrogen hrt. The usual process is to have a combi hrt patch but I didn’t get on with the patches so I have the spray and the pill. My consultant that did all my endo surgeries except the bowel one went on to do my hysterectomy and he explained it all to me as I needed the hrt given my age he made sure I was on progesterone as well as oestrogen…..hope that helps xx

[1Poppy1234 in reply to MyStar86]

Thank you for explaining, I'm 52 now and have been managing I've just had a right setback with awful pain when I needed the toilet and wasn't sure if it had come back. They've done a scan to rule out kidney stones but I don't think it's that. I was so full it endo scarring and op scarring they had a right job getting rid of it. 🙈. X

[Sunset-lady in reply to 1Poppy1234]

Mystar is right - you mustn't take unopposed estrogen HRT if you have had a hysterectomy and you have endometriosis. Take utrogestan which is natural progesterone if you can alongside estrogen gel x

[Sunset-lady in reply to 1Poppy1234]

I'm about to have same operation x same age too x

[1Poppy1234 in reply to Sunset-lady]

I haven't dare take anything I'm too scared the pain was just so awful. I've just had that episode but still healing it still hurts to bend right over on the right side. Even after over four months. I'm just crossing everything it will be ok. Good luck to you 🥰. Remember to be kind to yourself give yourself time to heal, get a grabber to pick stuff up leggings and I slept in cycling shorts they were much comfier. Xx

[JOSANDY40 in reply to 1Poppy1234]

Both progesterone and estrogen are derived from pregnenolone, which is a steroid hormone precursor. It is possible that taking too much Progesterone can covert to become Estrogen as research has found that a gland in the head can multi-task different tasks which wasn't widely known, as yet they haven't found the link.

So maybe not such good news for some but it's early days on this information.

[MyStar86]

is it possible for you to go back to your endo specialist? Did you have all of your surgeries in one with your hysterectomy? That can sometimes be more risky as it’s hard to cover all the endo and do the hysterectomy that’s why I had all of mine done separately but that might of been because I was private because the nhs try to do it all in one surgery to save them time but it’s not always a benefit to the patient as that’s why a hysterectomy doesn’t solve the pain for a lot of people as it’s likely all the endo wasn’t removed. I even had mri scans after to double check it had all been removed. Sorry to hear you are still suffering xx

[Hannah818 in reply to MyStar86]

That's good to know, bit worried as mine is due to be all in one op soon. Can I ask what your recovery time was like after hysterectomy? And how long did the operation take in theatre? Thank you

[MyStar86]

I can’t remember exactly how long it was I think it was about 2.5hrs I had a laparoscopic hysterectomy and the surgeon pulled the womb out of my vagina so I didn’t have any big incisions and the recovery was much better than open surgery. It is a big surgery so it is a shock you have to take it very slowly I stayed inside for about 6 weeks and would walk round the garden and in the house for my exercise. I did my whole recovery just on paracetamol as I can’t have morphine etc and I found paracetamol good enough. It takes a while to build up walking etc but after 6 weeks I did feel a lot better much more like myself but I must stress about taking it very slowly be kind to yourself and have a support network around you. At 2 weeks into my recovery I suffered bleeding from the vagina which really scared me but I spoke to my surgeon and he said it was normal just my internal stitches dissolving. Oh yes you can’t have a bath for at least 6 weeks if you have the vaginal stitches. Any questions I’m always here and happy to help but it’s not as scary as people who haven’t had it make out!!! I would do it again to get the relief and results I did so the pain was worth it. I only stayed one night in hospital as I wanted to the comfort of my own bed but you have to stay longer if it’s open surgery xx

[DutchVanderling in reply to MyStar86]

Is it okay if I IM you about this - it’s something I was offered and am genuinely reconsidering as a positive move.

[MyStar86 in reply to DutchVanderling]

Of course you can, I’m happy to help if I can as I would definitely see it as a positive option it’s helped me so much and I have never regretted it or looked back I know everyone is different but I do think people need to hear the positive side of a hysterectomy xx