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[Twinstwice22]

Hello, I've recently had a total hysterectomy and have been told I'll now experience a surgical menopause. I was diagnosed with PCOS over 20 Years ago. Non existent periods so the only treatment I had was to get pregnant. Two sets of twins later advice from my GP was I didn't need to do anything about the PCOS. She was wrong on so many levels, so I've now had a total hysterectomy for Endometrial Cancer due to no PCOS management. With my PCOS I never had the usual hormone ups n downs. They always just stayed the same. I suppose my questions are, Is there anyone else out there who has had PCOS n had surgical induced menopause? If so how quickly do symptoms appear. A friend of mine, who had normal cycles, said she started with night sweats 3 days after her hysterectomy. I'm 44 years old and was told yesterday that my cancer is a cancer normally found in ladies over 60. Thankfully it was contained within the Uterus and it has all been removed. I'm not able to have HRT as it was a hormone hungry cancer. The only difference in myself I have noticed is that I have no Libido at all. My Macmillan nurse is a bit miffed that 2 weeks post op I'm more concerned with my libido than being told I had cancer. Sorry for rambling but just looking for some help.

 

[Dorothy]

Sorry I can't help, but just wanted to say welcome & I hope you find the forum helpful.  I know we have some ladies with surgical menopause on here so I'm sure someone will be along soon to answer your questions.

As for your Macmillan nurse, she's supposed to support you with whatever is worrying you.  So if libido is worrying you most right now, that's what's most important! 

[Kathleen]

Hello Twinstwice22 and welcome to the forum.

I have not had your experiences but I wanted to say welcome and hopefully some more responders will be along to advise you. Alternatively you may want to post again  with a specific question as your title as perhaps  new members threads can be overlooked.

I hope you get the help you are looking for. This forum has provided valuable support to me and so many others and I hope you can benefit too.

Wishing you well and keep posting.

K.

[CLKD]

   people react differently to news so your Macmillan Nurse should keep her Big Gob Shut!  She is there to support not pass Judgement 

Browse round.  Do a 'search' for PCOS .  Make notes.  Who told you that HRT is not a possibility and what options did he/she suggest?  When do you return to see the Consultant who did your operation, maybe take a list of questions?

In the meantime, make yourself at home 

[Twinstwice22]

The nurse told me HRT's not an option as the cancer was a hormone fed one. I knew early on the Docs weren't telling me everything. I go back to see them in 5 weeks so they can see how I'm coping with my hormone changes. I have started getting really bad headaches, but that maybe the heat!!!! I'm hoping at this next appointment I can get more details and hopefully they have a plan. I have been writing down questions when I think of them cause if don't I'll forget, nothing new there. I'm 3 weeks post op tomorrow n just glad I can curl up n hug into my hubby. My kids are dealing with it all really well n I'm still smiling! 

Thank for the replies ladies. X

[Hurdity]

Hi Twinstwice22

 

Sorry to hear about your cancer and other health issues but so please to hear that it was caught at an early stage and all contained within the uterus.

I agree with CLKD - do get an opinion from a gynaecologist. My computer is really slow at the moment so I can't look things up but I'm not sure that having had a hysterectomy ( for the cancer which was only there) means you are now at greater risk of cancer elsewhere?

However, although it is not listed as a contra-indication for HRT ( ie obviously if you actually have it and it's untreated, then you would not take HRT), I have just found a paper copy of the 2013 British Menopause Society paper with by Panay et al with recommendations for HRT - you should be able to google it. It was published in Menopause International. Have found a link
https://occwesternregion.org/2013/06/03/the-2013-british-menopause-society-womens-health-concern-recommendations-on-hormone-replacement-therapy/

HRT after cancer

Endometrial

Studies looking at the use of HRT following treatment for cancer have either shown no increased risk of recurrence or a reduced recurrence rate with an increased disease-free interval.

Most of these studies have been on early stage disease and the findings may be different in advanced cancer where there may be microscopic metastatic deposits.

Local endometrial sarcomas are estrogen sensitive and should be considered a contraindication to HRT.

I read this last statement as not being able to take HRT while you have the cancer - so yes defo get an expert opinion from your gynae!

Good luck and I sympathise re the libido - of course it's important especially as you are so young!

Hurdity x

[CLKD]

Quality of Life - at least ask the questions and if they hint that you shouldn't take HRT, then ask what they suggest to ease symptoms instead?

Don't wait until you are desperate, point out that 'the bus' might be along sooner than any repeat episodes of cancer ………. and ask what Research they are quoting if they hint that you shouldn't take HRT?  If necessary ask and ask and ……….. because HORMONES can cause awful symptoms whereas risking treatment will give you a quality that you may be able to life with 

I was told no HRT in the 1990s, the cancer was in the lump removed not the breast tissue. I was unable to tolerate Tamosxifen [it nearly killed me  ] and I use local HRT for vaginal atrophy.