A bit shell shocked by Hysterectomy recommendation

[Charlamine2023]

I was originally diagnosed with Endo in 2007 after a diagnostic laparoscopy. In 2015 my symptoms started to rear up again but I kept putting off going to see someone. Last year the heavy bleeding and pain got so bad I went private to see someone and had a further laparoscopy in December 2023. During that procedure a lot of Endo was removed. My left ovary was completely stuck to my pelvic side wall, I had a 6cm cyst on my right ovary and extensive endo in my POD. I had a hysterscopy at the same time to check my uterus due to the heavy bleeding I was experience that was all clear. I also had a mirena coil inserted.

Since the operation my heavy bleeding as stopped. I have a monthly cycle but is is very light spotting and no pain. Which is amazing. However I am still getting deliberating pain mid cycle for 3-4 days. My ovaries feel like they are being ripped out of my body, I look 6 months pregnant the pain is bad in my legs and I get constipated.

I had a 6 month post op yesterday and discussed with my consultant and he has recommended a hysterectomy. I don’t know how to feel about it to be honest it seems very sudden. I am 40 and as he is recommended a total hysterectomy he said I would be on HRT for 10-15 years and sending my body into early menopause feels scary. I am fortunate to have 2 beautiful daughters and am not planning to have any more children.

My consultant does run a BSGE clinic although I see him privately outside of that hospital.

Anyone have any advice.. as to whether hysterectomy did or didn’t work for them.. whether there is anything I can ask to try before a hysterectomy which seems so final

Thank you!

[RosaVibes]

Hi Charmaine,

(Warning, this did end up loooong! Bad brain fog day means I can't work out how to edit it down though - soz!! 💕)

I really feel for you, and I hope you find an option you're happy with and some relief from the symptoms soon! 💗

My experience has been quite different, but had a similarly thrown reaction to a total hysterectomy being suggested as my best option.

Basically, very condensed overview...

(I'm just about to turn 39)

Endo symptoms since age 11

Seeking help via GP since age 15...

(been all around the houses with tests and "treatments", poked and prodded from all angles, with no relief from symptoms, constantly having to fight and push for help and appointments always being told it's probs just bad periods even though none of the symptoms suggest that)

Descended into an 8 year (prescribed) opiate addiction (now thankfully 5 years into recovery from that)

FINALLY referred to (NHS) Gyne age 35

First Gyne consultation age 37 - terrible experience, initially suggested laparoscopic investigation was needed on 1st app, 2nd app where I went expecting to discuss this (which I was scared enough about!) he recommended total hysterectomy as my only option to have significant improvement in symptoms and said laprascopy not relevant, he had no medical reasoning, only tests used to inform this was ultrasound - which showed nothing much of note, he was also deeply unpleasant, arrogant, dismissive, spoke over me, refused to let me ask questions, etc, etc. After not explaining anything, I got shoved out the door with a barely legible A4 photocopy on hysterectomy surgery.

I was thrown

(I do believe his already crappy attitude got even worse when I told him I didn't want to have kids, he just looked at me like I was a crappy uterus guardian, not using it for its "intended purpose" so he was just gonna rip it out! For possibly no reason, with no regard to surgery risks and later health implications, the psychological effects, etc, etc!)

I later tried to initiate complaint and ask for second opinion

I got referred for second opinion - complaint sadly fell by the wayside for now

9 months wait for second opinion with different consultant, much better consultant, he confirmed there was "no medical reason suggesting hysterectomy was necessary at this stage". (because I also got scared there WAS a reason and he'd not told me!) He referred me for laparoscopy surgery to diagnose/treat suspected Endometriosis

Now been on waiting list over a year after being initially told 5 month wait

Really feel a bit lost and like I'm at the end of my rope dealing with debilitating symptoms

Looking into private options but will have to borrow money as I've been unable to work for a while due to Endo symptoms

ANYWAY!! Sorry, to get back to my point, it sounds like your journey has been very different, but yes I think when major things are suggested it can be very jarring, no matter the circumstances.

I didn't have the hysterectomy as I hadn't had other options explored yet, and no medical reasoning for it, but I did think a lot about it and what it would mean for me, trying to separate what is fear or misconceptions or stigma and other outside factors...are those opinions/attitudes things that align with your values? ask yourself what about it actually feels scary/extreme/final, does the loss of that organ/system actually have the consequences you think it will? Are there other things that on weighing it up are more important that you'll gain from the surgery?

I guess do as much research into the options as possible, seek second opinions from surgeons who seem to take a similar approach to your thinking about how to approach your body, you mentioned you're paying for private consultations so hopefully you'll have that freedom to choose, weigh the pros and cons of each different path (like I mean literally write it out, it helps to visualise it), use this to discuss with your loved ones as they'll know a lot of how Endo affects your life too, and they may bring up points and perspectives you'd not considered. Speak to people who have taken different paths and see how they've found it to be as they'll tell you all the things you can't Google and they don't cover in pamphlets!

Maybe consider counselling to help work out how you feel about this and how you cope with whatever you choose, and cope in the limboland of trying to work it all out.

I wish you all the best, I hope you find a path that works for you, and hope that although very different, maybe some of what was going through my mind may help you make sense of some of your ponderings too?

Rosa x

[SarahK73]

I had a hysterectomy at 42. Bowel surgery at 32 suitors endometriosis. I have been fine since. I did have some bowel problems following the surgery and was in hospital for a week to sort out but this was due to my previous bowel surgery.

I was on hRT gel for just 1 year and now at the age of 51 am fine

[Username12345678]

I too was completely thrown by the suggestion of a hysterectomy. I was 45 and didn’t want children but it still really upset me. After a lot of research I decided to go ahead. Best decision I ever made. I’m now 48 on hrt and feel so much better than I did throughout my 30’s and early 40’s. I also had Adenomyosis which was causing a lot of my heavy bleeding and intense pain an d hysterectomy is the only cure for that. Feel free to dm if you have any specific questions about the op x

[Rainbow2468]

Hi i would avoid a hysterectomy for as long as you are able. It's not a cure for endometriosis. I could say more,buy don't want to freak people out x

[Sunset-lady]

I think the problem is that there's no other treatment available, and even with a hysterectomy, endo often returns. I think private healthcare vs NHS too; I don't think you'd be offered a hysterectomy at 40 on the NHS. It's a difficult choice. When i was offered it at 50 my symptoms were so awful that there was no other treatment available, but when they got in they found stage 4 endo and couldn't do it without an endo specialist. I'd need a bowel resection now as it's all joined and fused. The bottom line is I think if you're questioning or shocked regarding the hysterectomy you're perhaps not in a place where you need it yet. However waiting could lead to problems further down the line. Good luck x