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Author Topic: To hysterectomy or not to hysterectomy...  (Read 579 times)

racjen

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To hysterectomy or not to hysterectomy...
« on: May 28, 2020, 11:07:02 PM »

Hello everyone, I was a very regular visitor to this forum a couple of years ago, as I was suffering horribly with anxiety and depression after a sudden menopause due to chemotherapy for breast cancer. Although I knew the problem was hormonal I was unable to find any combination of HRT that would help, principally because I was horribly intolerant to Utrogestan, to the point where it was causing acutely distressing anxiety even during the phases when I wasn't taking it. Things got so bad last summer I took an overdose, but then as I was recovering from that I was switched to Provera which has proved to be better, in the sense that I can tolerate it OK for a certain length of time (usually somewhere between 30 and 40 days) before it starts to make me feel ill (gradually worsening depression, exhaustion, stomach problems and constant bleeding). So it seems that I can't take it continuously, which I'd prefer to do to minimise the changes in hormone levels, to which I seem to be extremely sensitive.

At the moment I'm doing roughly 35 - 40 days on 5mg Provera plus estrogen, followed by the same length of time on estrogen alone. I use Estradot patches, and need at least 100 patch to feel OK, sometimes going up as far as 125 to balance the Provera when it's built up a lot. It seems to be a constant juggling act - when I'm on estrogen alone I usually settle at 100 plus a quarter of a 25 patch as being just about the right amount to keep me stable. Any more and the anxiety starts to escalate, any less and I can be feeling suicidal within a couple of days, lying in bed sobbing for no reason. Does anybody else find that such tiny changes in the dose of estrogen (ie 6.25mcg) can have such massive effects on their mood? I can just about manage this when I'm in the estrogen-only phase, but add in progesterone and it all goes haywire - trying to balance the effects means gradually increasing the estrogen but by tiny amounts, and then the withdrawal is awful, another several days spent lying in bed in utter despair and hysterical crying. Followed by trying to get the estrogen level gradually back down to the right place again (and it seems to be slightly different everytime, so I can never pre-empt it, I can only wait for the symptoms and then react to them).

To cut a long story short, this has become a long-term health condition which is dominating my life - I can't work, can't really plan anything because I never really know how I'll be feeling from one day to the next. It's 4 years since I was diagnosed with breast cancer and I haven't been able to resume a normal life, despite the treatment itself being successful. The only suggestion my GP has now is a hysterectomy, which obviously would remove the need for progesterone, which does seem to be the big problem here. But I'm terrified for several reasons: there are an alarming number of possible serious complications, plus an equally alarming number of 'lesser' effects like increased likelihood of prolapse, detrimental effect on your sex life, not wanting to have any more major surgery having already had a mastectomy etc. Especially if in the end it doesn't make a lot of difference.

Anybody out there faced this dilemma? Has it worked for you, or do you wish you hadn't done it? What would you do in my situation? I'm also wondering if there's any other solution I haven't tried; I gave up looking a while back and decided to just accept that this is how I am now, but it's pretty miserable, I'm fed up and not sure I'm prepared to just give up and be effectively disabled for the rest of my life (I'm 54 by the way).

Thanks for reading this far (if you have managed to!) Sorry if my account is a bit rambling and hard to follow - it's a long and complicated story - but I'd appreciate any advice or useful experience anyone can offer x
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walkingthedog

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Re: To hysterectomy or not to hysterectomy...
« Reply #1 on: May 28, 2020, 11:43:39 PM »

Hi Racjen

I remember you from a couple of years ago I don?t post often now basically because three years past March gone I had a total hysterectomy and for me it?s been a life changer
No more mood swings no crying over I have no idea what no period pain and so on

Yes a hysterectomy is not without complications for example as you mentioned sex drive can be an issue plus dryness

However I honestly believe it was the best thing for me after a long road of problems

Obviously we are all different and you have previous surgeries to consider I?m also sure there will be people come along and post telling you it?s big surgery and so on and I wouldn?t disagree with them

I had robotic surgery which is probably the easiest surgery I realise not everyone can have that

All I can say is write a list of pros and cons also look at how you are now hormonally and the impact it?s having on your life

Hysterectomy isn?t a magic cure I still use hrt but a very low dose of 0.5 ml sandrena gel daily it works for me I occasionally get a hot flush but compared to before hysterectomy it?s nothing and of course no progesterone has been brilliant

This is just my story and I count myself lucky that it?s had a good outcome as I said it?s not without issues but it?s 99% better than it was

Wishing you luck and wellness
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Lyncola

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Re: To hysterectomy or not to hysterectomy...
« Reply #2 on: May 29, 2020, 09:01:12 AM »

Hi Racjen,

I can only comment on my hysterectomy, I?ve had a couple of operations in the past, ovarian cyst, thyroid, endometriosis. My ovarian cyst operation was the worst with a big cut across my stomach, my hysterectomy was a walk in the park compared to my hysterectomy.

I found my hysterectomy operation (keyhole) that I wasn?t in much pain, with in 10 hours after my operation I was walking and using the toilet. The most painful thing for me was the gas they use to blow up your stomach, the pain as it moved up and through the body. Peppermint tea helps with that.

With the first 4 weeks the third week was the most painful, this is normal for a lot of women.
I would do the operation again but make them take my ovaries as well. I went into menopause 4 months after my operation (only 5% chance) and it took a year and half for my ovaries to stop hurting me.

 :bighug:
Lyncola
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racjen

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Re: To hysterectomy or not to hysterectomy...
« Reply #3 on: May 29, 2020, 09:38:01 AM »

Hi Lyncola, it's not really the operation itself that worries me, it's the potential long-term after effects and the uncertainty about whether it would actually solve my problems anyway. You don't say why you had the hysterectomy in the first place - was it because of mood problems or some other health issue? x
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daisie

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Re: To hysterectomy or not to hysterectomy...
« Reply #4 on: May 29, 2020, 11:12:24 AM »

hi racjen ,i had an hysterectomy everything took away 5 years ago ,the reason for me was i had 1st stages of womb cancer i always had bad heavy painful periods it got to where i was bleeding lightly every day for months thinking it was the menopause i had scans biopsies a few times came back clear till i went back again with never ending bleeding had another biopsy thats when i was told i got 1st stages of cancer had mri scan came back ok the cancer was just retained in the womb it had not spread ,thats when i was straight in hospital had hysterectomy.iv not looked back since ,no  more bleeding was like a heavy weight lifted off me ,if you need one go for it .i still suffer with my mental health  anxiety and deprssion but getting rid of the bleeding and problems that you go through with womens problems, have all gone now x
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Dotty

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Re: To hysterectomy or not to hysterectomy...
« Reply #5 on: May 29, 2020, 11:46:56 AM »

Hi racjen....good to hear from you.  xxx
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sheila99

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Re: To hysterectomy or not to hysterectomy...
« Reply #6 on: May 29, 2020, 12:59:23 PM »

Hi racjen, I was hoping your silence was because you'd swanned off into the sunset with your new fella. Sorry to hear you're still having problems though you seem to have more control of it now. No advice to offer but wishing you all the best.
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racjen

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Re: To hysterectomy or not to hysterectomy...
« Reply #7 on: May 29, 2020, 02:18:26 PM »

Hi Sheila, that's so sweet  :). Yes, my new fella has been an absolute godsend - 9 months now and we're living together, he's endlessly supportive, kind and loving and we have a great sex life (and obviously I'm loathe to risk that...). So that has helped a lot, and I have been managing my condition better than before with his help. But it's still having a huge effect on my life and well-being, and I'm finding it particularly challenging during this awful lockdown period where there's no distraction and none of the meetings, classes etc. I'd put in place to give me some structure and routine in the absence of work. So thought I'd check in here again to see if I there was anything new or anything I'd missed first time round.

Daisie, thanks for your reply - my problems aren't physical as I had a sudden and complete menopause caused by chemotherapy, so I just stopped bleeding overnight. It's the depression and anxiety that are ruling my life, and that's what I'm very unsure whether a hysterectomy would solve, so interesting to hear that in your case it hasn't. Glad you've had some relief from the other stuff though x
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Kathleen

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Re: To hysterectomy or not to hysterectomy...
« Reply #8 on: May 29, 2020, 04:37:26 PM »

Hello racjen.


 I have no great insights to offer sadly but it's nice to hear from you again. I even remember your contribution to a radio phone in back in the day.

I hope you can resolve your problems soon.  I have found the mood issues associated with the menopause more challenging than the physical ones but my GP tells me that even these settle down eventually.

Take care.

K.

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Mary G

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Re: To hysterectomy or not to hysterectomy...
« Reply #9 on: May 29, 2020, 08:13:21 PM »

racjen, it's good to hear from you but sorry you are still struggling with the dreaded progesterone.

I was considering a hysterectomy myself but found a workable form of progesterone at the final hour.   I think we discussed this in the past.

It's a very difficult decision and not one to be taken lightly but if never having to take progesterone again would change your life for the better then it's well worth considering.   I think you said that your ovaries no longer function so I agree that it would be better to have a complete hysterectomy.

Obviously others are far better placed than me regarding any long term side effects of a hysterectomy but I can tell you that I have never come across a woman who has regretted it.   I'm sure there are some who do but perhaps that would depend on age and reason.

You have your GP on side which is really helpful.

I'm pleased to hear about the new man in your life!

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dangermouse

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Re: To hysterectomy or not to hysterectomy...
« Reply #10 on: May 30, 2020, 03:49:41 AM »

Hi racjen,

Now a couple of years have passed have you considered trying without any HRT for a few months as the emotional/neurological symptoms can often be due to oestrogen withdrawal rather than deficiency? I think that?s true for hot flushes as well. If you have very little oestrogen left then things could have calmed down for you without you knowing as you are still adding in hormones, so you could be masking calmness.

Just a thought in case you haven?t tried without for a while.

Alternatively, finding something that is low dose and constant might help. If you have tried it all though then the hysterectomy may give you the peace your system needs and I know of many who have had it and still have high sex drive.
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50, perimenobloodypausal.

Lyncola

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Re: To hysterectomy or not to hysterectomy...
« Reply #11 on: May 30, 2020, 09:14:24 AM »

Hi racjen,

My hysterectomy was recommended by a gynaecologist, l was there for pain in my ovaries which a year before with an operation I was open up to discover endometriosis, the operation was abandoned. And I was sent to the city hospital. The gynaecologist said my uterus was three times the size it should be.

6 weeks after the operation I was told my uterus way seven times the weight what it should of been.
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Perinowpost

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Re: To hysterectomy or not to hysterectomy...
« Reply #12 on: May 30, 2020, 09:38:59 AM »

Hi Racjen I remember your story well, is it really a couple of years since you?ve been on!

I have no solutions I?m afraid except to say like you I?ve struggled with progesterone but I?ve always been wary about hysterectomy. Primarily because I?ve read on here it?s not always the end to problems it can create other issues. And also someone (can?t remember who) reported that for her it was the end to orgasms, and when you?re in a relationship obvs sex life is important.

That said I have a friend who?s had a hysterectomy who has never looked back (haven?t discussed impact on sex life though). The other question would be would the nhs give you a hysterectomy for prog intolerance?x
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Kathleen

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Re: To hysterectomy or not to hysterectomy...
« Reply #13 on: May 30, 2020, 09:55:44 AM »

Hello again  ladies.

Dangermouse - you make some very good points.  The question is are ongoing problems due to oestrogen withdrawal and everything will calm down once lower levels have stabilised or is this what low level oestrogen actually feels like in which case some form of HRT is needed to have a normal life.

Personally I didn't feel right on HRT and I don't feel right without it!

Take care.

K.
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racjen

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Re: To hysterectomy or not to hysterectomy...
« Reply #14 on: May 30, 2020, 11:00:11 PM »

Hi Perinowpost, yes I have already been offered a hysterectomy on the NHS for progesterone intolerance. But like you I'm very wary, suspect it would create as many problems as it solved, and yes any effect on my sex life would be a huge blow cos this is the first time I've had one for about 7 years!

Dangermouse - must admit what you suggest hadn't even occurred to me. In fact it's closer to 4 years I've actually been in menopause, as my chemotherapy was Aug 2016 and my periods stopped immediately, so I've been producing zero estrogen since then. But I must admit I'm terrified by the thought of withdrawing from estrogen; lowering the dose slightly has such an awful effect on me, I just can't imagine being able to come off it completely without losing the plot altogether. As Kathleen says, is the problem estrogen withdrawal or very low base level of estrogen? No way of knowing until you try, but given I've already attempted suicide once, trying could be catastrophic in my case :(.
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