Hysterectomy.... Total or partial?

[GlamPanda]

Hi all. I was diagnosed with endometriosis when I was 18 - really lucky to have a quick diagnosis. I had all sorts of treatments, from pill, to depo, then ablation, then went through two medically induced menopauses with HRT, and mirena on top of that.

I managed to have two beautiful children, and kept my symptoms managed with mirena for the last ten years, but recently they've come back with a vengeance.

My gynae has now recommended hysterectomy which I am fully on board with. However, he's asked me to think about whether that's a partial hysterectomy with excision of any visible endometriosis, or if I want him to also remove my ovaries.

I know the latter is the more permanent "fix" as I won't then have a cycle, but at 36 he's suggested I would need to have HRT for the next 15 years or so.

Any experiences anyone would be willing to share about long term HRT post total hysterectomy would be really appreciated to help me make my decision.

Thanks in advance x

[Country_Bumpkin87]

hi

Sorry I can’t specifically help your decision however, it’s likely I’ll be given a similar scenario… I haven’t had children though thanks to pelvic issues alongside being on opiates (no chance it would affect the baby!) plus actually never the right partner!

Anyhow… also had treatment like you following a 2012 laparoscopy where they never diagnosed a stage just removed a lot of endo including along my bowel… 3 years of monthly zoladex injections…wasn’t meant to be that long although made life a lot easier with few symptoms. BUT caused osteopenia so no go.

They wanted me on dienogest but gp said no chance too unproven then put me on a pill without breaks to try help my symptoms & that was that😳😱😔🤔

I chased recently after colonoscopy was clear from biopsies taken- as realised endo is causing bowel & pelvic pain generally & if I took 4 day breaks every sign of a bleed or goop I’d never be on it!

They just won’t believe it’s menopause despite my gynae history & mums. Of course a uterine fibroid could cause some of this but they don’t even know about that!

I feel your decisions but thank goodness you got your babies despite endo- that’s purely thanks to early enough diagnosis 😃🙏

I’m seeing a gp about blood pressure hopefully tomorrow so will raise gynae at the same time.

Don’t let the medics make you feel pushed into either decision & remember we are entitled to 2nd opinions… seek that if it helps as I will- 15yrs along time of hrt despite body naturally doing it already… am I missing something here please tell me!

Love C Xx

[GlamPanda in reply to Country_Bumpkin87]

Thank you for replying, and I'm sorry to hear you have had such a difficult journey and still need to push for answers. I know I'm so lucky to have had an early diagnosis and my resultant children - I pushed my body through a hell of a lot on those early years, and it was worth it, but now I don't have the same incentive I'm less willing to do the same this time!

Praying you find the solution that works for you soon x

[Sunset-lady]

It's a tough one because ovaries give us estrogen for life - even after menopause. However, endometriosis loves estrogen and it could grow back after the hysterectomy. On the other hand HRT could make it grow back too AND endometriosis makes its own estrogen anyway. Endo aside, surgical menopause can be hard even with HRT so keeping your ovaries is probably a good idea. You can always get them out later. You won't massively bleed when you go into peri menopause so that's a plus. You may find that they don't fire up the same way post hysterectomy anyway and you go through menopause earlier. If they look healthy try to keep them but I understand the dilemma as I was still in two minds as they pushed me down to theatre last time (they tried to do a hysterectomy and failed as found stage 4 endometriosis). Now i need them out as I have a large endometrioma.

[GlamPanda in reply to Sunset-lady]

Sorry to hear that you have a large endometrioma, that doesn't sound nice at all. Thank you for your thoughts - it is hard. I feel like taking them out is the more permanent "fix" but it's not exactly a straightforward choice.

I might let them judge the health of my ovaries when they're in there - perhaps then the best decision will be made.

Good luck with your treatment, I hope you find what works for you x

[Username12345678]

Hi, I had a total hysterectomy at 45. I’ve been on tibilone since. I have endo & adeno and had tried most treatments in the 15 years prior to the hysterectomy. I wish I’d done it sooner. I got my life back! It’s was a somewhat easier decision for me due to my age and the fact that I didn’t want children. I’ve had a few ups and downs with mood swings and brain fog over the last 3 years but that’s much more bearable for me than the pain and suffering of endo/adeno. Hope this helps. I have tips on the surgery and recovery if you need any. Feel free to dm me x

[GlamPanda in reply to Username12345678]

Thank you, this is really helpful! Good to hear a good news story following this treatment option! Glad you found something that worked for you! X

[constantsarechanging]

I think it really depends on the state of your ovaries and if they are a contributing factor to your condition. I'm due a total in the coming weeks, despite knowing all along this would be coming it is daunting, both my ovaries are compromised with deep infiltrating endometriosis and endometriomas but at 39 it's a long hrt journey ahead. Of course there will be challenges with this, but hopefully one last surgery and more energy to enjoy my kids childhood.

Get as much information as you can and listen to your medical team, good luck!