Adenomyosis, HRT. hysterectomy, oophorectomy

[thehonscupboard]

If you have a hysterectomy and ovaries removed at the same time does the HRT make you feel the same as pre-surgery minus horrible gynae issues? Now I can really feel my fluctuating hormones over the month, eg, feel fantastic when ovulating then the opposite in run up to period. I guess I'm concerned about where on that spectrum you end up when you're on HRT following hysterectomy.

After years of horrible gynae issues, scans appear to show I have got adenomyosis. I want to do pre-appointment homework to go into my appointment informed. Or at least, so I can ask the correct questions when in there.

In the past I have had the mirena coil which I know is fab for some but I had permanent PMS and bleeding. I really don't get on with hormonal birth control. Or non-hormonal for that matter. My body expels coils.

I have tranexamic acid and mefanamic acid. These work to a certain degree but don't have the best side effects. I'd say I bleed maybe a third as much but still more than the average period.

Am I right that the other options are medically induced menopause or a hysterectomy? I got excited reading about ablation then read somewhere that the success rate is not good for adenomyosis.

As far as I understand it, these are the options:

Non-surgical options:

1. Oral contraceptive pill
2. Mefenamic acid (for the pain) and tranexamic acid (for the bleeding)
3. Mirena IUD: this can help for mild adenomyosis but in more severe adenomyosis the shape of the womb has changed too much for the Mirena to fit properly.
4. Norethisterone (for the bleeding)
5. GnRH agonists (medical menopause): can be very effective for some people but there are side effects and consequences for bone density.

Surgical options:

1. Ablation: will help reduce the bleeding but likely to worsen the pain, especially if adenomyosis is deep in the muscle wall of the womb.
2. Hysterectomy

Anyone with adenomyosis should only take HRT with caution and under the advice of a gynaecologist, as oestrogen exacerbates adenomyosis (which is why the medical menopause is an effective treatment).

Also, as you mentioned mood changes, be cautious about any progesterone treatment (including the OCP, Mirena, norethisterone and HRT) if you think you might be one of those people who is at risk of significant mood changes from it (e.g. PMDD, history of severe PND etc). The Mirena only releases a small amount of progesterone but it can still be enough to affect mood in some.

Mirena and POP was awful for me -constant bleeding and hormonal.

Tranexamic and mefanemic acid wasn’t really working for me, I was on it for a few years just hoping for the best but still struggled to leave the house some days. I refused ablation as I know it doesn’t work well for everyone and the lining can grow back. I didn’t want to end up back in the same boat.

My total hysterectomy has been life changing, and HRT has been amazing.

I don't know why Mumsnet messed up the formatting

https://www.mumsnet.com/talk/womens_health/4880151-adenomyosis-support-thread

Have had a hysterectomy and BSO. No, there isn’t the fluctuation of hormones that you get during a monthly cycle because the HRT after hysterectomy is oestrogen only, taken as a stable amount. Before my hysterectomy, I was on the POP, and then on Ryeqo (a GnRH) just before the surgery to shrink the fibroids, and both were horrendous for my mood.

Thanks @Ashemark for the breakdown of options and link to the group. So helpful.

Thanks also @ForHeavensSakeRichard and @GCAcademic . So helpful to hear other women's experiences. It all feels a bit overwhelming.

It's encouraging to read that your hysterectomies have been a success. It must be life changing.

I had a full hysterectomy 8 years ago and it was the best thing I ever had done. Prior to that I had ablation, tablets, mirena coil........

Thanks @mizu

It probably sounds weird to be excited at the prospect of major surgery, but having unsuccessfully attempted to manage flooding/pain since a teenager, the possibility of ripping everything out sounds quite attractive.

Oh I was thrilled at the thought of it! I was years at the doctor being fobbed off and when I moved house and doctor and then finally got referred, I was so relieved.

I remember waking up after the op and asking is it done?!

There is nothing I miss about having it all, I felt better immediately.

Conversation with GP at appointment to discuss periods:

GP: Hmm... you'll probably feel more comfortable discussing this with a female doctor

Me: no I don't mind discussing it with you

GP: ... yes... well... hmm... I really think it best you see a female GP.

Consultant gynaecologist I was referred to after something showed up on a scan:

Gynae: do you want to have more children?

Me: umm, yeah at some point, probably

Gynae: well I'm not going to tell you what your scan showed. It's fairly common and you'll google it and misunderstand. Continue with the coil.

@mizu so glad to hear! Sorry it took so long for you.

I felt elated when I came around from the anaesthetic after the hysterectomy. The knowledge that the source of so much misery had been removed was amazing. The recovery wasn't anywhere near as difficult as I'd been led to believe. Within eight weeks I was feeling better than I'd felt for decades and was able to do all kinds of things I'd never been able to contemplate before. Even though I knew my life was being seriously compromised by my fibroids, it wasn't until my uterus was gone that I could fully comprehend how much of a gap there'd been between normal life and what I'd been living. Unfortuntely, the NHS was utterly useless for me, and I got to the point where it was difficult to contemplate going on living with the bleeding and pain until the waiting list got around to me, so I ended up taking out a loan and going private.