Hysterectomy or both hysterectomy and oophorectomy?

[thebird1]

Hi, I'm on my 4th month of Decapetyl injections. I'm due to be reviewed by Consultant on 23/9. I'm currently listed for ' full pelvic clearance' due to DIE. I'm 47 and have been fortunate to have X3 children. The reason for messaging is two fold.1) How many of you have had both hysterectomy and oophorectomy? I know there's research indicating that leaving the ovaries in is better for overall health due to brain/ovary link. Although as it's oestrogen that drives endo.... I guess it's best if they come out? So quite confused!! 2) Has anyone had HRT post hysterectomy/ oophorectomy/ removal of endometriosis. I have it in my bladder/ urethra along with vaginal/rectal spectum and uterosacral ligament. I don't know if they'll be a urologist in theatre yet. Think I'm concerned if not fully removed HRT will stimulate growth / possibility of malignant malformation.

Any advice would be greatly received x

[Sunset-lady]

Personally I would have it all out because, as you rightly say, estrogen drives endo. It doesn't mean it won't come back though as unbelievably endo makes its own estrogen which blows my mind. This is why it's a life long disease. However, many women feel loads better after having it all out. I went in for mine a year ago and they found stage 4 endo and couldn't do it as it wasn't an endo specialist. My advice would be to get it out and get on both progesterone and estrogen (and possibly testosterone) and get back to thriving and living your best life xxxx

[thebird1 in reply to Sunset-lady]

Thank you for responding. That's really helpful x

[TicTac77]

Hi, I have had a hysterectomy and ditched my ovaries as well. I am now on body identical hrt. I had the surgery for endometriosis and adenomyosis.

My understanding is that the oestrogen levels in my hrt are lower than they are when cycling, but above the minimum to be brain, bone and heart protective. Therefore shouldn’t trigger endo growth. Also the levels no longer fluctuate and according to my surgeon who also participates in research fluctuating levels encourage endo growth more than a static dose.

I had my ovaries out as the specialist decided from scans, hormone testing and symptoms that while I was cycling my ovaries were not producing the right amounts of hormones to be healthy. I’m 37 and to be honest nearly got whiplash from the change in tune from you must keep your ovaries to you should really have them out when we operate after an ultrasound showed 1 follicle between the 2 of them.

I feel so much better post op but it’s only been a short amount of time, although I was on prostap and bhrt for 9 months before the surgery.

[thebird1 in reply to TicTac77]

Thank you, that's really helpful x

[Bakewey]

I had a total hysterectomy on Monday and my body already feels like it’s healing properly.

I had a lap in May where they did no removal as what they found was so extensive! Since May to Monday (17.09.24) I bleed more or less nonstop and was in constant pain.

I needed a MDT around and after the words challenging and complicated were used in my ‘wake up’ conversation but the surgeon’s smile relayed all I needed to know. This time, had been a success!

I don’t know about the HRT as I’ve now been discharged back to the GP. Thought the endo specialist surgeon did say that I’d be better off on O Gel only due to having everything removed.

This is a totally confusing choice you have to make, but trust your gut and I’m sure you will make the best decision.

[thebird1 in reply to Bakewey]

Thank you so much, that's really helpful x

[Rainbow2468]

My advice is a hysterectomy doesn't cure endometriosis, and a hysterectomy can come with a whole host of side effects and health issues, hence why i refuse to have one. I'd say do some research into hysterectomies before you make the decision. Hope you have a lovely day x

[thebird1 in reply to Rainbow2468]

Hi, Yes I agree, hence my indecision. Can I ask how you manage your symptoms if you don't want a hysterectomy? I'm on my second coil and don't have periods any longer. However, I have DIE and obviously it continues to grow in areas outside of the uterus.

They can continue Decapetyl injections until I'm 50 years but I continue to have some discomfort anyway!

Enjoy your day too! X

[Rainbow2468 in reply to thebird1]

Hi I'm on pro strap injections. They have taken away all of my pain and bleeding. I'm hoping to stay on them as long as I possibly can. X

[Rainbow2468]

It's a huge decision isn't it x

[thebird1 in reply to Rainbow2468]

I'm due my next injection in a week. I'm bloated today and in a lot of discomfort. Nothing like I would be without the injection but it definitely affects my mood and fatigue! I don't let it stop me but must admit it does get me down when it's bad x

[Rainbow2468 in reply to thebird1]

Hi i totally understand, before my injections i was exhausted and bleeding all of the time again, after they took me off noresterone. I did get so low that some days i didn't want to be here, what kept me going was my daughter's and husband, I'm my youngest daughter's carer. I hope you get answers soon. Have a lovely week x

[thebird1 in reply to Rainbow2468]

Thank you x You too!Onward and upward!

[BlueMocktail]

I'm a similar situation to you and having my 3rd Prostap injection this week. Whilst the pain and bleeding have gone, I've got terrible joint pains, migraines and fatigue plus weight gain. I've decided to go for the total hysterectomy including ovaries and planning to just 'ride the storm' of surgical menopause afterwards. Maybe I'm being naive but my gut just told me that having everything out was my best chance of living a normal life....good luck whatever you decide to do xx

[thebird1 in reply to BlueMocktail]

Sorry to here you are struggling too. I had my coil replaced last year. I had the first one in 2018. It's made the pain more tolerable as it isn't as severe. I haven't had a period since May 2018!! I had surgery in 2016 but it's grown back so now wanting to make the right decision going forward.I asked about low estrogen and brain health. I'm going to try Tibolone HRT along side Decapetyl injections until surgery ( 12 months).

Hoping it all works out for you and that as you say look forward to living a normal life!!

[BlueMocktail in reply to thebird1]

Thank you!! I've had bad experiences with hormonal contraceptives in the past so very nervous about HRT particularly anything with progesterone in it. Will do some research though on low dose estrogen as worried about the effect on brain/heart etc but also don't want the endometriosis to grow back again - it's so tricky to know what to do!!

[thebird1 in reply to BlueMocktail]

I've never been able to tolerate the pill, especially the mini pill ( progesterone). I've been absolutely fine with the mirena coil. Tibolone, I understand is licenced for endometriosis and for post menopausal women.