Should I have a hysterectomy?

[mavenmi]

The short version is that I have adenomyosis, but it is well enough managed on zoladex/Tibolone that I'm not having any significant pain and not bleeding enough that it is a problem, but I do have lots of more minor issues and my consultant thinks a hysterectomy would be better. I've got the op booked for next week, but I'm anxious that it is a risky choice when my symptoms are livable.

By way of background: I've had period pain since my teens, and heavier bleeding since having twins in 2009. I then had aches, bad skin and anxiety that was seen as perimenopause and was on HRT for 2 years. A GP suggested I try without it as it didn't seem to make much difference, but I went into a megableed and ended up in A&E. I'd previously reacted badly to Mirena and Jaydess coils, and had each removed after 4 months, the latter triggering another horror-film-scale bleed of thin red blood.

I had an ultrasound that showed adenomyosis and a polyp. I started to feel pregnant and constantly like period pains, and passed lots of massive blood clots. So they put me on progestogens. My consultant did a hysteroscopy and removed the polyp. Thankfully I had a biopsy that showed no signs of cancer. As I had had prior bad reactions to Mirena/Jaydess, he tried endometrial ablation but said the op was unsuccessful as the tissue was too deep and spongy to remove totally. After the operation I had six weeks that felt great, then went back to another mega bleed with hug fleshy lumps.

So he put me on Zoladex - which caused the expected hot flushes, brain fog, aches and totally messed up my sleep, and my skin (since being on it I get cystic acne that is really uncomfortable, but my skin is otherwise so dry it flakes off). So I was prescribed Tibolone to try to improve the menopause effects. The aches have gone and the flushes have reduced to a manageable level, but my sleep and skin are still problematic, and I still get mood swings and patches of anxiety, and the brain fog is still there. I don't have as much energy or motivation as I used to - despite losing two stone to prepare for the surgery. I fall asleep after tea often, but sleep poorly at night (often waking for a wee and then not being able to get back to sleep). I often feel a sort of heavy/bloated feeling, especially if I sit for a while. I get some breakthrough bleeding, and big mood dips as the zoladex wears off in week 11. And I've still got some intermittent period-pain type feelings, plus I've had a couple of migraines and bad headaches.

So all told, as it stands things are tolerable but not brilliant. Obviously I can't go back to the heavy bleeding, but if I stay on zoladex I might have another 3-5 years in this holding position. Also, without surgery the only HRT option is Tibolone, and that hasn't totally resolved my menopause symptoms the way that the Evorel patches did before all of this, and might be the reason I'm getting facial hair and struggling so much with the cystic acne (as it contains some testosterone).

I can't get my head around whether the potential to get back my sleep pattern, energy, confidence, skin, hair and general wellbeing is just a fantasy outcome for an operation that is clearly a big deal for my body, with a long recovery time and some associated risks of complications, or later issues like prolapse. I've also heard it can cause changes to orgasm. Yet some people I know say it was the best thing they ever did, and I know the outcomes are generally pretty positive. Plus my consultant wouldn't advise it without reason, and people in my network feel like I am probably putting up with stuff that my life could be a lot better without.

So how do weigh up whether or not to go ahead with it?

[mavenmi]

Also, as well as the 11 weekly zoladex I'd have to have at least annual biopsies, as the breakthrough bleeding means the consultant has to check for cell changes that might be a precursor to cancer. I've been quite tearful too - even a pet post on twitter can set me off! I worry a bit about my daughters seeing me tired, irritable and tearful so much of the time.

[Lizzo30]

If you keep your ovaries and stop the zoladex you have a chance to get your hormones working for you again

[110201]

Good morning, sorry to hear you’re having such a rough time of things! I’ve had a hysterectomy due to adenomyosis and retaining my ovaries. Thankful of no longer having to deal with monthly bleeds etc etc. Mine was performed via keyhole and recovery was a breeze compared to recovery from a caesarean for example. If you’re not wanting to add any further children to your family I’d go ahead with the hysterectomy for sure. The adenomyosis will not then spread further, you can wave goodbye to the bleeds altogether and have a clearer playing field to regulate your hormones also! Good luck with your decision and I wish you well x

[mavenmi]

Thanks for the replies! I should have said I'm 49 and have teenage twins, so my family is complete.

I read some reviews of zoladex today and saw how many people report the fatigue and disrupted sleep pattern that I'm experiencing, so I'd be really glad if a hysterectomy means I can stop that - it is like I fall into a gravity well of exhaustion I can't escape, so I end up asleep on the sofa for a couple of hours most days (twice today). I also probably need to take the risk of osteoporosis more seriously as my younger brother has recently been diagnosed with it, which is pretty rare in men in their 40s! So I'd like my own ovaries plus HRT, not something going against them.