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[Oolong65]

Hi,
This is my first post on here so apologies if I post in the wrong place.  I thought I'd share my experiences and ask a few questions as my menopause experience is pretty dreadful right now. 
I starting having severe hot flushes - every 10 mins - 24/7 in 2006 - 12 years ago!!. Obvioulsy I couldn't function, so went on HRT early in 2007. Phew, amazing, worked brilliantly and I got my life back. I avoided any discussions with my GP about coming off. Then last September I was diagnosed with endometrial cancer due to being on HRT for 10 years. (consultants words). Had to stop HRT instantly, followed by surgery and since then my menopause has been back with a vengance. I have 15 hot flushes a day and several during the night and I am 65!
I've tried everything, read every book, phyto oestrogen diet, red clover, sage, starflower oil, folic acid, exercise etc etc but nothing works for me.  Even went down the anti depressants route, but that was just awful. I am now on sleeping tablets just so I can get a few hours sleep a night. My GP is now going to refer me to a menopause clinic at a local hospital.

My question is: Does anyone know if I just postponed the menopause by going on HRT and I'm facing it now at this age. I get mixed views on this. Some medics say that whilst being on HRT your body adjusts to the lack of oestrogen. Others say no.  After 12 years am I left wondering how many years I have to endure this and whether I can cope. My mother and grandmother had the same problem, so think there must be a genetic tendency.

[Dotty]

Hrt does not postpone the menopause.

[Taz2]

Hi Oolong65. Thank you for sharing your experience with us and I'm sorry you are feeling so horrible now that your HRT has been withdrawn. You will find loads of help and support on here.

Has anyone offered you a blood pressure medication to help combat the flushes? Friends of mine, unable to take HRT, have had great success with Clonidine (Dixarit) so it might be worth finding out about this. Which HRT were you on?

Taz x 

[Oolong65]

Hi Taz,

The HRT I was on is Evorel conti 3.2mg Estradiol.  So wish I was back on it.
Thanks for tip on Clonidine. I'll mention it to my GP.  He is young and enthisiastic and desperate to help improve my quality of life.

Oolong

[Tempest]

Welcome, Oolong!

What a terrible time you're having - bless you!

I'm so glad that you've been referred to a menopause clinic. They should be able to help. As well as the Clonidine mentioned by Stellajane, Gabapentin has also been found to be effective,  so you do have some options.

Yes - there is such a thing as HRT Discontinuation Syndrome, just as there discontinuation syndromes with other drugs that alter the effects of the central nervous system. If one becomes used to a high physiological level of hormone replacement, the withdrawal can be quite severe unless the HRT is tapered carefully. Whether what you're left with after about 6 to 9 months off HRT are your own residual menopause symptoms is open for debate. I think it's important for women to realise this.

I really do wish you the best of luck at your appointment, and I'm sure as I say that they will be able to help. xxxx

[Tempest]

I think tapering is crucial if you're on a pretty high dose, such as the 4 pumps of Estrogel that some ladies are on here. Crashing down from a great height (as it were) can be much more stressful for the body (and mind)! xxxx

[Kathleen]

Hello Oolong and welcome to the forum.

So sorry that you have had a diagnosis of endometrial cancer especially when the progesterone in your HRT patch was supposed to protect against such an eventuality.  You are fortunate to have a sympathetic GP and hopefully your menopause clinic will be able to help you.

Wishing you well and please keep us updated.

K.

[Hurdity]

Hi Oolong65

 

Sorry to hear about your endometrial cancer.

The evidence is that if you take continuous combined HRT you are actually at a lower risk of endometrial cancer than the general population not on HRT so in fact it is unlikely on balance that this is the cause. That being said there are of course exceptions but you don't know actually whether the HRT and the continuous progestogen actually slowed progression of the disease which might have been there - or at least the hyperplasia - before you started HRT ( did you have scans back then or at all during the 10 years?

You mention surgery - and I presume you had the standard treatment of hysterectomy? if this is the case I can't understand why you cannot continue to  take hRT unless you had endometriosis and deposits outsdie the womb? yes you would have had to stop prior to surgery but as far as I know endometrial cancer is not linked  to other gynaecological cancers although someone might have other info. It is usally ovarian and breast cancers that can be genetically linked.

Excellent that you have been referred to a menopause clinic and hopefully you will be able to continue with oestrogen only - I am your age and still on cyclical HRT and have been on it for 11 + years.

As the others have said taking hRT does not postpone menopause - your ovaries have stopped functioing/ovulation has ceased so no more hormonal fluctuations. However some women - even off HRT continue with symptoms for many years and some women have symptoms that return when they stop HRT or reduce dose ( this happens with me). In some such women the symptoms start off badly but then tail off ( much quicker than while still peri-menopausal). Reserach shows that the eventual outcome after stopping is the same whether you come off gradually or suddenly althouygh gradual reduction is not such a shock to the system.

If not there are other  prescribed mecications - I think Venlaxafene is the one with most evidence ( good for breast cacner survivors) - although some other medications as suggested may also help. I would hold off starting any of these though until you've been to the clinic because if you restart oestrogen then you won't need them.

Good luck with your appointment and hope you manage to get back onto the oestrogen replacement 

Hurdity x

[Oolong65]

Hi everyone on this thread to my post.

Apologies for delay in responding - not been near a computer for a few day - makes a change!
I have learnt a few things already from joining ths forum. I realise I am suffering HRT discontinuation syndrome and the sudden withdrawal after 10 years must have been a dreadful shock for my poor nervous system.

In response other comments and questions:

The genetic link: My grandmothers who is long gone, was so disabled by the hot flushes she had to be cared for by her sister. She used to faint in the street. My mother who lived to 92, was put on HRT for a couple of years and was still having occasional hot flushes in her early eighties. She also suffered dreadfully. Interesting she would get hot flushes if she was stressed in any way - even meeting people socially.
The cancer: I had a scan 3 years ago as I had a polyps removed but there was no sign of any endometrial cancer. My consultant at hospital has said that after 2 years he would allow me back on low dose oestrogen only HRT if my life was still intolerable. I'm thinking life is over if I have to tolerate this for another 2 years.  I am 9 months post HRT so suspect I am in the post shock to the system stage now. In answer to Stellajane's question, the symptons came back within a week coming off HRT and with it came severe depression, but thankfully that didn't remain.
I have tried Venlafaxine and Mirtazapine and both sent me crazy with the side effects but will definitely mention Clonidine to my GP. He has prescribed me sleeping tablets which help to get me through the night. Zopiclone 3.5mg.  At least they are letting me now get some sleep and no side effects.

I think I am at a stage where I might have to go back onto oestrogen only and take the risk of breast cancer - my consultants words!  However, if I do that will I just postpone another bout of HRT Discontinuation Syndrome and be back to square one when I come off again. Or am I suffering unnecessarily? My GP thinks that if I go back on, I could be on it for life as 10% of women have the menopause for 20 - 30 years and he suspects I might be one of those, looking at my family history.  Great choice eh - quality of life Vs breast cancer risk.

Thank you for your input. As I'm hiding indoors away from the heat with my fan, I am now going to explore as much as I can from this site, so thank you all.

oolong xx

 

[Taz2]

Hi Oolong - sorry but I am a little confused (doesn't take much!) have you had endometrial cancer or just polyps?

Taz x

[Oolong65]

Hi Stellajane and Taz2,

For clarification I had a polyps 3 years ago (which was clear) but last year I had another polyps which turned out to be cancerous.  I swiftly was taken off HRT and had full hysterectomy for endometrial cancer - stage 1

The consultant's view is that it is not advisable to go back on to HRT within 2 years due to the risk of the cancer returning.  However, in my case, he is prepared to make an exception (due to the severity of symptoms) and has advised my GP that I could go on a low dose oestrogen only. He has told me it is a small risk but that I have to balance that out with quality of life. 

Sorry for the confusion.

Oolong

[Oolong65]

Thanks Stellajane

I think this is an excellent idea which I will discuss with my GP when I see him on Monday. I like the idea of being in control over the amount and see what I really need to keep flushes at bay. After the heat of today and hot flushes almost continually, I am ready to throw the towel in, but think you may have a workable solution. certainly worth a try.  Many thanks.

I'll let you know how I get on.

Oolong65

[CLKD]

If you had a hysterectomy where would the cancer return to ..........  and why would this have any connection with breast disease?

Quality of Life ...........

[sweettooth]

Oolong sorry to hear all that u are going through! I had to stop hrt 4 yrs ago due to BC) so because my symptoms affect my quality of life so much, my GP has said that after 5 years I may be able to use it again though don't think my oncologist would agree. My breast cancer was estrogen positive - so I would always have that worry! it is such a dilemma.  As clkd says why would it affect your breast? X

[Oolong65]

I asked the same question about where the cancer would return to if I had everything taken away. Statistically there is a small chance of the cancer returning, so I guess in the area where surgery was done.  The consultant says there is a small but yes a risk of breast cancer due to the exposure of oestrogen over time.  When I was on HRT I suffered from benign breast disease and had at least 50 'lumps' drained over 10 years. They weren't cancerous, but obviously oestrogen affects the breast in some way.

Its such a challenge to know what to do. Life without oestrogen is hell. I already have to live with chronic lymphocite leukaemia (CLL) and the night sweats caused by that. Severe menopause ones on top of that means I have become virtually house bound in warm weather. Hot weather affects both types of hot flushes and makes them worse.

Thank god for a dyson fan!