Hysterectomy for endo... have you? Would you?

[Myboyamelie]

Hi ladies

I’ve recently been diagnosed via laparoscopy with endometriosis. I’ve suffered with painful heavy periods for years... but my symptoms have spiralled out of control since the start of the year.

The surgeon performed excision and ablation of endo but this didn’t help the pain so he put me on decapeptyl to create a medical menopause. I had a horrific flare up of my symptoms (which the consultant said was good... proof that I didn’t have any other underlying issues). I’ve been taking the decapeptyl for five weeks now. I think the flare up is starting to subside but I am still struggling.

I am fortunate enough to have private healthcare although my consultant has referred me back to his NHS BSGE centre where he feels I’d get better support.

I can only take the decapeptyl for six months. Assuming it puts an end to my symptoms, I would be a bit stuck as to what to do afterwards. I can’t take the combined pill as I have high BP, and progesterone contraception (injection, mini pill) caused endless bleeding when I used them years ago. I can’t imagine that the mirena coil would be much different.

The last few months have been absolute hell. I have a demanding job and have been lucky enough to have two kids... but they are young and lots of work. I am struggling to cope.

My family is complete. If the decapeptyl sorts my issues, I can’t seen any value in spending the next few years (I’m 36) taking hormonal contraceptives that have unfortunate side effects and probably won’t prevent recurrence. I’d like to have a hysterectomy. I’d have to take HRT of course - but at least that would be a more steady course...and wouldn’t cause recurrence.

My surgeon is willing. I’m willing. But I’m not sure if I’m mad to consider it.

I’d love to hear any stories of people who’ve done this. Did it work for you? How is your life now? Any regrets?

Thank you in advance. Xx

I'm much older than you but wasn't yet naturally menopausal (a statistical outlier). Eight weeks ago I had a hysterectomy including removal of ovaries for bloody awful fibroids. On HRT now - oestrogen patches - and doing ok.

With endo - family completed - I'd have done it even sooner.

Good luck anyway with whatever you decide

I've got endo. I'm early 50s, still in agony monthly. I've been begging for a hysterectomy since I completed my family years ago. Absolutely no question in my mind, you should do it. Quick, before your surgeon changes his mind! No more pain ..... why on earth wouldn't you? Good luck.

Thank you ladies. Fibroids is another good point - my mum had a hysterectomy at 40 (30+ years ago) due to fibroids and my sister is currently battling with them. I believe they run in families so I’m wondering if I’m doomed to get them too!

I think it would be the best thing for me. I can’t live like this. I’ve lost loads of weight but I think I’d bounce back well. My high BP is as a result of pregnancy- it was raised then and never went down. I am otherwise really healthy, was running 100km a month before this happened....

I would probably investigate further the effects of the hysterectomy on your body being young. You may find you are not suitable for HRT if you are not suitable for the pill 🤔 If you can't have HRT you would potentially go into immediate menopause. This can have effects on things like, skin, hair, bone density.

I think Michelle something or other from Liberty X has just released a book about her experiences with hysterectomy at an early age together with double mastectomy - both because of a family history of cancer. It may be worth a read.

I had a hysterectomy for endo (and fibroids/adenomyosis) and it's the best decision I have ever made. I wish I'd had it done ten years earlier - I was 42. Mine was abdominal and I was fortunate to have a good recovery - after the first 48 hours post-op I was in far less pain than I'd ever been with the endo. I was back at work seven weeks after the op and have never looked back. I had it done privately and would recommend this if it's an option because a private bathroom is a boon.

Thank you.

I think the HRT should be fine as I am currently taking it (livial/ tibolone) with the decapeptyl treatment as that produces a medical menopause....

And yes, private is an option for me! Very fortunate to have cover through my employer.

I had an abdominal hysterectomy at 36 for a very large fibroid. No problems or pain afterwards and absolutely the best decision for me.

I was in hospital 1 night as my surgeon was very forward thinking and didn't believe in women laying in bed for ages or not doing anything afterwards.

I got up the morning after the op, showered and walked along the corridor and then went home. I moved around at home as much as possible and did light housework such as dusting, some cooking etc. I also went for a walk every day.

I never had any pain so never needed any painkillers. No problems whatsoever. I was back at work after 5 weeks. I could have gone back quicker but my GP thought it best to wait that long because I had an hour and half commute each way

I talked through the NICE guidelines on HRT with my GP as I too have had years of high blood pressure during and post pregnancy. My BP is well controlled through medication, so my GP started me on Evorel 50 patches. They do the job pretty well.

I did have some pain after the surgery unfortunately. The first few days I needed the painkillers I was given, definitely. But that was a result of the laparoscopic procedure and the gas they use. My actual incisions healed up very quickly and are barely visible now.

I was also home the following day from hospital, which was what I wanted. If I couldn't have managed, I could have stayed longer in hospital.

Thanks ladies, this has been really helpful.
Lots of thinking to do...! X

Hi myboy I just posted the same question a couple of days ago! I'm seeing my GP next weeks to ask for a referral back to the consultant who did my last couple of laps to discuss a full hysterectomy.

Sorry to hear you're suffering so much, it is truly shit.

I've the added joy of a pmdd diagnosis so worried about the hormonal aspects of being on hrt as any estrogen will have to be low so as not to keep stimulating the endometriosis.

I'd love to chat as it sounds like we're at the same stage!

Are you certain you can only take the decapeptyI for 6 months? I am taking Synarel, another GnRH drug, on a long term basis for endo. It should be an option if you are under a private specialist. I have a dexa scan every three years to keep an eye on my bone health and no hrt, just vaginal oestrogen for dryness.

I am actually abroad in Europe but am under the private care of an excellent endo specialist in the U.K. He did a second laparoscopy for me in 2010 after a previous surgeon failed to remove all the endo. This got rid of some but not all of my pain, so I started on the Synarel which stopped my periods and I got the fake menopause. (Was pretty horrible for the first three months but much better after that... such a shame to have to stop it just when everything has settled down.) I started it at 44, now 51 and the plan is to stay on it for the next few years till I have passed the average age for menopause.

Obviously I don't know what will happen when I stop it and if it doesn't go well a hysterectomy is still an option for me.

Definitely worth asking about!

I recommend this website for endometriosis advice - there is also a linked forum - I found it very useful when I was diagnosed.

www.endometriosis-uk.org

Thanks ladies!

Twotabby - I was told only six months - and that seems to align with the NICE guidelines for triptorelin/decapeptyl. I will look into the drug you mention as perhaps it can be prescribed for longer?

Hellbent - I will pm you!

It is worth considering the risks of having your ovairies removed to your long term health. They do give a lot of protection for various health problems and still keep producing small amounts of hormones even after menopause.

I was in a similar position to you a few years ago. In the end my consultant persuaded me to keep my ovaries. I am glad I did have the hysterectomy because no more dreadful periods. But it obviously hasnt got rid of the actual endo (i have lots of microscopic stuff they cannot get rid of)so i am still in pain generally. I will watch this thread with interest.

As far as HRT goes, you won't need progesterone because that is just to protect your uterus.

myboy please do keep in touch it would be great to compare notes. There’s so much to consider and so many conflicting schools of thought. Ovaries out or keep, cervix in or out, what type of hrt to go on, how long to try the chemical menopause’s and which ones, it’s a bloody minefield.

Because my endo is so extensive I think I’ll be gunning for a full gusto with removal of the ovaries and cervix, I riddled with the bloody stuff and want as many surfaces that it’s settled on removed to try and increase the chances of being painfree and staying painfree for as long as possible. Ive also read that keeping the ovaries can mean that the same cycle of hormones keep stimulating new endo growth where as removing them and monitoring the balance of hormones put back with hrt can reduce the chance of regrowth. I need to discuss this all with my consultant though as that’s just what I’ve gathered on various forums and support groups.

wonderwoo just wanted to say that I’m sorry to hear you’re still in pain.

I had a hysterectomy for Endo, I had a keyhole op removing my womb & last surviving ovary but leaving my cervix. I went in hospital at 4.00pm, went to theatre at 6.00pm & was sat up in bed watching soaps by 8.00pm. I was on my way home by 9.00 the morning after, no real pain, just a bit sore & bruised, I had refused any hormonal treatment as I suffered from severe PMS & didn't want my mental health to be made worse, I now have HRT patches but I try to only use them if my symptoms are really bad, I've had a few hot flushes but that is all, most of the time I can manage without. I was lucky, my Endo was diagnosed 6 months before I had my hysterectomy & even though I had to fight my CCG to fund my hysterectomy I stuck to my guns & got it. They like you to try Mirena before they will fund the op but like you I knew that the hormones wouldn't suit me as I had previously had the mini pill & Norethisterone to stop my periods & had been very unwell with both.

nat I don’t want to hijack myboys thread but would you mind sharing some more of your experience post op of how your pms has been affected? Do you feel more level and in control? I’m terrified of jumping out of the frying pan and into the fire with having hormone replacement and it wrecking my mental health much like yourself with the mini pill and the norethrisone.

Hellbentwellwent I still suffer from depression & have to take antidepressants, but I don't have those awful bouts of hormonal moodiness, losing my temper one minute, crying my eyes out the next. I feel more levelled out, I don't have to check the calendar to work out if it will be a good day or one where I don't want contact with the outside world. I don't get the headaches like I used to or the PMS munchies where all I wanted was fatty rubbish & chocolate & I don't have to avoid foods that affected my mood like I did.

myboy just checking in to see how you’re getting on? My consulatation went as expected, surgeon found loads of new disease and huge endometrioma and now adenomyosis as well so trying to get a date for surgery next month.

I had a radical hyst for endo when I was 39 via laparotomy. Also privately and they took everything including ovaries and cervix. I’d had several previous excision/ovarian resection surgeries to try and excise the endo but it just kept coming back - I was getting to the end of my tether.

Best thing I ever did, no regrets, I’ve been pain free since.

monkeys thankyou! I’ve spent all day reading all sorts so it’s lovely to hear it worked for you, especially since you had it so extensively. Did you go on hrt after or go cold turkey?

On HRT which I’m still taking 10 years on. All fine. Mind you, com8ng off it will be a bitch but I’ll worry about that when the time comes 😝

I went cold turkey for about 3 months after my hysterectomy & then started HRT, I've been on & off HRT for 7 years now, I'm getting to the stage now that I don't need it much now, the hot flushes are just about done, I just use the lowest dose patches to protect my bones & my heart & spread them out to use the minimum I can get away with.

monkeys which hrt have they put you on? My insurance has been amazing and I phoned up last week to see if I could see a specialist about the hrt, they said they don’t normally cover anything to do with her as it’s a long term medication but given the circumstances and the imminent surgery authorised a consultation with the hrt clinic. I’ve heard a lot of women talk about livial post hysterectomy for endo, my surgeon just said combined hrt and when I mentioned the pmdd and progesterone by intolerance he said we’ll just go oestrogen only, but to be honest I wasn’t particularly reassured that he was totally up on hrt at all!

nat were youvleft to your own devices in terms of regulating dosage etc? Sounds a bit daunting