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Menopause

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Hysterectomy or not?

5 replies

SameKeyThough · 17/10/2023 12:32

Will try to be concise! I have had depression most of my life - on ADs since age 19, now 51. When I was pregnant I developed terrible, debilitating anxiety that left me suicidal. Never had anxiety like it before, not really an anxious person when well. Lots of different meds, eventually improved after about a year. Stayed really well on ADs til 2 years ago when terrible, crushing anxiety started again. Been sectioned, been in hospital, been on 6 types of med. Put on 3 stone just from meds. Eventually anxiety eased a bit once on pregabalin.
Initially was a bit scared to try HRT as didn't want to add anything else to the mix. But it seemed like there was something hormonal going on. So over the past year have tried to start. First 2 times I had to stop after commencing utrogestan (vaginally) - anxiety back with a vengeance, suicidal thoughts etc. 4 months ago I saw a private meno specialist who suggested oestrogen only HRT for a few months (with a scan every 3 months) to see if it actually properly helped. I was referred to a gynaecologist for the scan and she mentioned the possibility of a hysterectomy. I know there are other progesterone options to try, but I am so, so scared to try them. I cannot go back to where I was before. I've lost my career, my DS has seen me sobbing with terror on the floor. I've planned how to end my life so many times, and not acting on that is the hardest thing I've ever done.
I feel a lot better after 14 weeks on oestrogen only. Not fantastic, but functioning and with a lot of good days where I am 'me' again. I still have terrible fluctuations but when I have tried to increase my oestrogen I have developed terrible migraines and chest pain/palpitations (both patches and gel).
God this is long. Sorry.
So I have the opportunity to have a hysterectomy. With or without oophorectomy. So that I can continue with unopposed oestrogen. But I really, really don't know what to do.
Any advice/thoughts???

OP posts:
JinglingSpringbells · 17/10/2023 18:04

This is very hard for you, I can see that.

Many decades ago, the late Prof John Studd wrote about hormone -related depression. (I'll see if it is still on his website.) He suggested estrogen as a treatment. here - it seems to discuss what you have suffered from.
[[https://www.studd.co.uk/reproductivedepression.php

Can you maybe clarify if you started HRT for peri symptoms, or as a treatment for your anxiety/depression (which became worse in peri?)

From what you say, there are several options.

1 The first is do you feel better on estrogen only? If you do, that is what you can expect if you were to carry on with it. The maximum dose (licensed) is 2mgs tablets , 100mcg patch, or 4 pumps gel (3 mgs.) You'd probably be advised not to go above those doses if you are doing long cycles.

2 Long cycles are an option long term. The guidance is 14 days of progestogen (either a synthetic type, or the Mirena or Utrogestan) every 12 weeks. That's classed as a 3-month cycle. So within 84 days (12 weeks) you would have 14 days with estrogen + progestogen.

3 Hysterectomy- it's not without risks, mainly during surgery to the bladder or risk of prolapse afterwards. A good surgeon should be able to avoid those!

JFT · 17/10/2023 18:25

Personally I would take the hysterectomy. I'm in a similar situation to yourself and cannot wait. My sister was also and she's flying now since she had her surgery - it's been the end of a long nightmare. I'm on the wait list for urgent surgery myself and am very hopeful of a whole new pain free and more stable life.

I'm slightly older than you and haven't had any signs of the menopause starting yet so obviously the surgical menopause will be a shock to my system and I'm slightly anxious about that but I've been reassured HRT will be offered and my sister got her HRT settled to the right levels.

SameKeyThough · 17/10/2023 20:02

Thanks for replying. @JinglingSpringbells I started HRT to see if that was the missing link in my treatment for anxiety in particular. I didn't really have any other peri symptoms. Periods have got closer together over past few years but still fairly regular. I think on balance I DO feel better on the estrogen. It's hard to judge when I still have so many bad days, but if I look back on my mood scores since I've been on it they are quite good. And family/friends/my psychiatrist see an improvement. Not sure about doing a long cycle. I am considering trialling it though. Thank you for such a helpful response.
@JFT are you awaiting a hysterectomy for mental health reasons as well as pain? I assume from your post you will be having ovaries removed too? I think if I do go ahead I will probably avoid that. I'm worried my already precarious mental health would be unbalanced.

OP posts:
JFT · 17/10/2023 21:25

@SameKeyThough

I had the exact same worries as you because I struggle badly with mental health issues. I was anxious that a sudden surgical menopause would cause me chemical imbalance and then possible mental breakdown.

However, I have to say that the pain of the monthly cycles (which in my case were about every 21 days and then lasting for over 8 days) and the trauma and re-triggering of passing huge clots due to my personal history of abuse and trauma that also involves CSA and horrorful botched gynae procedures in childhood ie under age of 16... all of that being re-triggered all the time is / was far worse than the risk of sudden menopause I reckon. Sorry if that's also triggering for you to read :(

Now the choice has been taken away from me as I've been badly injured in botched gynae procedure last year and am left in chronic pain and daily bleeding plus constant internal re-infection which is now putting my life at risk. So I'm desperate for the surgery and on an 'urgent' wait list. Shared my story on a thread I started if you'd like to read it but it's pretty grim.

But from my sister, from friends and friends of friends experiences, they're all saying it was the best thing they ever did. The aching pain has gone. The bleeding is over. And none of them had any type of break down or serious emotional issue.

If you do decide to go ahead with surgery, would you be able to make sure the local Crisis Team have you on radar or any other forms of support systems available to you? You deserve gentle, loving, tender, kind, support and care after a life changing surgery.

SameKeyThough · 19/10/2023 08:32

@JFT I'm sorry to hear of all you have been through. Thank you for your kind words. I'm under the care of a psychiatrist so he will be around to help. I was discharged from the crisis team but do have a number for them.
I still don't know what to do. I just wish I didn't have to think about it all. I'm feeling ok at the moment but the worry about making the right decision is making me anxious again!

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