Hysterectomy for progesterone intolerance?

[SameKeyThough]

Sorry if this is a bit long. I have a history of depression. Diagnosed at 19 and on anti depressants ever since (am 51 now). Was put on dianette contraceptive pill around the same age for acne. Stayed on pill for approx 12 years. When pregnant was developed debilitating anxiety and depression. Was also made to stop taking citalopram AD and switched to different type which did nothing. Hospitalised during pregnancy and narrowly avoided mother and baby unit after birth. Went back on citalopram and issues resolved after about 6 months. Stayed on citalopram and all good. Never really had PMT. Fast forward to nearly 2 years ago and terrible anxiety developed almost overnight. Presented at A&E as suicidal and sectioned. Spent last 20months trying to recover. Am under the care of a psychiatrist and on many different medications. Seen private menopause specialist as suspected hormones but as soon as tried utrogestan became incredibly anxious and depressed again. I know there are other progesterone options but am scared to try them. Am spending every day wishing I were dead. Would having a hysterectomy solve any of this do you think? I could go private. Then I could just have oestrogen. I'm so so desperate. Every day is hell.

I'm really sorry to hear you have had these experiences.

Maybe go back to your specialist and ask for other alternatives?
If your specialist is good, they can adjust the dose of Utrogestan or any other type and try to get it right for you (by lowering the dose.) You don't have to stick with the licensed doses if you can be monitored privately. A 3-month cycle (which is licensed by NICE) is one option where you use progesterone once every 12 weeks.

Even privately, you can't demand a hysterectomy unless your dr feels it's medically necessary.

I have a similar history and menopause topped me right over.

l can’t tolerate any form of HRT. But Venlafaxine has been really helpful.

Thank you for replying. The trouble is I don't think I can cope with utrogestan at all, even less often. When I say suicidal, I really mean it. The meno specialist suggested evorel sequi next, and then the mirena coil. I don't want to try the coil as if I react badly I can't quickly stop it. She did then mention the possibility of a hysterectomy. I think my mental health issues would possibly be reason enough.
I have just emailed my GP to request a prescription for evorel sequi. @JinglingSpringbells you are a font of knowledge, do you think that is the best one to try? I still have (irregular-ish) periods. Or should I try gel/spray and provera?

@ArseInTheCoOpWindow I'm currently on sertraline, beta blockers and pregabalin, plus withdrawing slowly from mirtazapine and diazepam. I have tried venlafaxine in the past but didn't get on great with it. I'm glad it's helped you.

Why wouldn’t depression and suicidal ideation, which had resulted in sectioning, not be classed as a medical necessity?

Oooh it's really hard to advise you. It's all so much trial and error.

Has the specialist suggested a 12-week cycle?
That way you use estrogen every day, and by week 12 you use a progestogen for 12 / 14days.

This could be Norethisterone (which is in the Evorel patch) but you could use estrogen gel + Norethisterone as a tablet, on the 12 week cycle.

How good is the specialist you are seeing? They should be coming up with these types of ideas.

@JinglingSpringbells I've spoken to two specialists, the first was one of Dr Naomi Potter's crew, but I didn't have a follow up as I was in a very bad place (literally, I was in hospital) so I just stopped the hrt and couldn't face even discussing alternatives. More recently, after feeling a lot better on pregabalin, I saw a specialist my psychiatrist recommended. She was the one who suggested trying different types of progesterone. I only spoke to her on the phone though, as a (free) favour because of my psychiatrist.
Oh god it's all such a mess, I honestly feel like I can't carry on.

I found I tolerated the Mirena really quite well...after being pretty much suicidal with progesterone in pill form. Like you I was worried about having to have it taken out but it's been absolutely fine.

I'm very similar to you. I am not brave enough to ask/insist on hysterectomy. I'm absolutely not suggesting you do this but this what I can (just about ) cope with : 7 days max of 2 x utrogestan every calendar month.

I'm doing that off my own research and don't tell my GP what I'm doing. I'm aware of the risks. For me, no HRT at all is worse than doing this regime.

I just want it to stop. I'm seeing my psychiatrist today but I don't know what else he can do. I just want to be dead to be honest.

if you aren't taking any oestrogen, I'd hazard a guess that you're feeling like this because your oestrogen is very low. Please stay around, the darkness right now will definitely lift. It feels like a mess now but it will get better when your hormones are sorted I promise. Get back in touch with specialist and ask them about gels and utrogestan trials/different ways of taking it ie. vaginally. Ibtake mine vaginally .
HTH🌸

@mrssilky thank you. I was using it vaginally. It's so hard to keep going. I wish I didn't have a family then I could just make it stop.

The NICE prescribing guidance allows women to use only estrogen for 3 months, adding in 12-14 days of a progestogen towards the end. (The actual limit is 84 days of estrogen only= 12 weeks.)

This is classed as a regime for women intolerant to progestogens.

You could consider using estrogen only from now (today!) for several weeks to see how that benefits your mood. This will give you the time and space to evaluate it and maybe find a different consultant (or go back to the previous one) and see how you are.

There ARE options, so don't give up. You just need to right dr to help and support you.

it took me a year to get myself sorted experimenting. i maybe have 2 dark days a month now instead of virtually everyday. im on 3x0.5mg sandrena and like i said 7 days of 2xutro vaginally. its my current sweet spot.

I'm also autistic and there is growing research that very high % of autistic women suffer like this. Anyone interested can do a google. Something about our neurology makes us react to hormone shifts more severely.

I'm nit suggesting you are autistic OP, it's just why I suffered my whole life and subsequently much worse once perimenopause came along.
hope your appointment is useful later today 🌸

and also what @JinglingSpringbells said

OK, so the reason you "need" progesterone is to avoid the endometrial build up that CAN cause endometrial cancer. If progesterone is making you suicidal, then maybe that is a bigger risk than anything else. Worth discussing with your medical team

My dr prescribed the combined patch when progesterone tablets made me feel awful. So far so good.

I have some evorel 50 patches that were prescribed as an alternative when estradot ran out. Can I just put one of them on now? And then put a sequi combined patch on when I get it prescribed?

I was fearful of the mirena and worried it would make me feel low, but have found it didn’t affect my mental state. I’ve had one for more than two years now.

I’m actually about to have a hysterectomy for other reasons and will be interested to see how I go on oestrogen only.

@Littlemissprosecco

Sorry meant to say yes @Littlemissprosecco I think so. @JinglingSpringbells I have just put an evorel 50 on. My husband saw my rising panic and insisted, even though I am worrying about what to do about the progesterone. I've taken some diazepam which is disappointing as I'd managed to almost wean off them. But at least now as you said I can see if my mood improves and can make an appt with someone to find some solutions. Thank you @mrssilky

Think my mood has improved slightly even just putting the patch on yesterday. Still very anxious but not quite as desperate. My psychiatrist has put my diazepam back up a bit too temporarily.
Thanks again for all the reassurance and advice.

@SameKeyThough I’m very progesterone intolerant and saw a private specialist who has put me on vaginal pessaries instead to see how I get on .. if it’s still too much I’ll ask to do a three month cycle

@Rockschooldropout is that utrogestan or a different progesterone? Hope it works out for you.

It’s cyclogest . I’ve been on it 10 days this cycle and apart from feeling a bit headachey it’s been ok . Progesterone and I gave a jaded history .. I suffered from horrendous PND with absolute rages and depression then hyperemesis in pregnancies - so like you I was feeling very anxious . I saw a private menopause specialist who said second to mirena this was a more suitable option