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[JPoppyFalls]

Hello Ladies,

I'm not sure if anyone can advise me on a really debilitating problem I am having. I am at the end of my tether and feel absolutely horrendous.

I have been post menopausal for 7yrs since I was 46. I'm now 53 nearly 54 and have had HRT all this time, I was on Kliofem 2mg/1mg for these years.

Back in 2019 I had to be taken off HRT overnight due to blood spotting even though I've not had periods for many years. It turns out I had a growing cyst on my ovary.

During this period of them taking me off HRT I had the most awful debilitating anxiety, every waking moment it was a feeling of impending doom. My head just couldn't work or function properly, everyday joys that I loved like music and reading became an absolute zero in my life, I couldn't face them. Then nausea would set in and my appetite disappeared completely, I lost about 2stone and looked gaunt and grey and just really ill. I got to a point where I totally understood why people took their own lives. I could never see it before, but all of a sudden I could see it.

After 5months of living like this i went back to my Dr and begged to go back on HRT and I'll take my chances with the ovarian cyst and spotting etc. Within 4-6wks I was back to myself again, oh wow, how good it felt to enjoy certain aspects of life again, like my reading and music and food.

Fast forward 2yrs to May 2021 and I had both my ovaries and fallopian tubes removed due to said cyst, as it was bigger than they would like and so this was the decision that was made. Everything was fine for 3mths, then in August the dread started growing in my chest again, that doom feeling was getting bigger everyday. After the op I carried on taking the same HRT that I have been on all these years so why was this feeling coming back.?

Once I realised i was getting the exact same thing happening to me like before in 2019 when I was on no HRT I tried speaking to the Dr, unfortunately the Drs are at a loss really and I am terrified I have got to live like this for the rest of my days. Losing weight again, no joy in anything at all, the days roll into 1 and all I want to do is hide away, I am starting to feel numb, my head cannot take loud noises now either its like an echo in there.

The one Dr I spoke to has given me the gel and told me to use 3pumps a day for a month and to see how it goes, I'm now 3wks in and its getting worse as the days go on, I am on Utrogestan 1 a day aswell.

I don't understand why its as though I'm not on anything again just because my ovaries have gone, when I wasn't having periods for the last 7yrs anyway, plus I've still been on HRT since the op back in May.

Please if anyone has any suggestions I am open to anything that can help me. I'm not living a life at the moment I'm just existing again. I have a husband, a pubescent 13yr old son and 2 grand daughters also and I just cant live a life with them that I can find joy in anymore whilst I have this debilitating anxiety going on. I am at my wits end now. 

Thank you so much in advance ladies.

[Hopeful]

Hi JPoppyFalls
So sorry to hear how awful things have been for you. I have suffered with that dreadful anxiety recently when I came off HRT and so I can 100% understand your desperation.
I don’t have any knowledge to pass on I am afraid except  have you considered an anti depressants? some people need both HRT and AD’s.
Have you been referred to a menopause clinic?
A recent thread titled crippling anxiety and noise sensitivity might be of interest to you.
I am sure some more knowledgeable members will be along to give you more help.
Just want to say we are here for you and reach out when you need to.

[CLKD]

Anxiety can be dealt with by taking appropriate medication.  My GP prescribed 'valium' 3 times a day for 2 weeks, then I dropped to 5mg at night.  He saw me every week to keep an eye on my feelings.  Taking 'valium' for a short while will give you breathing space JPoppy. 

Now I have a medication on an as necessary basis which I haven't required for 2.5 years.  Knowing it's there helps.

Get your GP to refer you to a menopause clinic, not a gynaecologist as they don't know as much about HRT.  You could read Dr Louise Newsoms web-site - she is great at advising women on the ins and outs of treatments. 

It may be that there is a small amount of 'stem' left so that the ovaries are still pumping out small amounts of oestrogen, enough to make you feel 'off colour'.  U may need a hike in the amount of gel or perhaps alternate days of 3 pumps.

Some find that keeping a mood/food/sypmtom diary useful.  Try not to panic, it's trial and error and sometimes amounts need a bit of adjustment on a daily/weekly level.

[CLKD]

Dr Louise Newson
BSc(Hons) MBChB(Hons) MRCP FRCGP

GP and Menopause Specialist

Louise Newson is a GP and menopause specialist and holds an Advanced Menopause Specialist certificate with Faculty of Sexual and Reproductive Healthcare and the British Menopause Society. She is passionate about improving education about the perimenopause and menopause and improving awareness of safe prescribing of HRT to healthcare professionals.

[sheila99]

It's usually it's the progestin that causes the problems. You could try using a sequi regime and see if you are better on the oestrogen only phase. If you're better this way youu could either use a long cycle (6 weeks) so you have more 'good' time or you could change to a different progestin. For a sequi regime it's 2x100mg for 12 days per cycle.

[Gnatty]

Just to add, I went through the most horrendous period of anxiety despite being on HRT when I had a hysterectomy and my ovaries removed in June. I imagine that your ovaries were still providing you with a small amount of oestrogen and now that has of course completely gone. Also ditto the testosterone they would have provided.
Mine got so bad I had to take ADs but I also increased my pumps of oestrogel gradually from three to five and also slightly increased the testosterone. I think my hormones are now sorted but I will stay on the AD just for a little while longer.

So I think you will benefit from more oestrogel and also add in some testosterone. 

[Suzysheep]

I know what you are going through, I was there a couple of months ago. My thread is the one Gnatty mentioned about the crippling anxiety and noise sensitivity.
Venlafaxine ( an anti depressant/ anxiety) has helped me immensely. I can not imagine where I would be without it. I was having what felt like a complete nervous breakdown when I was taken off HRT. Things just went from bad to worse. Every noise was making me feel anxious, I couldn’t function, couldn’t eat, was vomiting, the fight flight feeling was completely unbearable. I just wanted to end it all. 3 weeks ago I started the venlafaxine. For the first week I felt absolutely horrible, I’m not going to lie.. I nearly stopped taking it the side effects were so bad.. but I stuck with it, and 3 weeks in I feel like my old self.
Hang on in there, you won’t be stuck like this forever, things will get better x

[Wrensong]

Hi JPoppyFalls   So sorry to know you are having a really rotten time of it but you have come to the right place for info & support.

Like you I had BSO several years postmenopause for an iffy cyst & was on HRT beforehand, though waited a year after surgery before resuming & for various reasons, on a different regimen.  When I questioned the gynae before agreeing to surgery she seemed unaware that there could be adverse consequences of oophorectomy in women already postmenopause, but like you I've found there are.  More than 3 years on, my HRT is still a work in progress, but my resistant symptoms are mostly physical.

Again like you, I still have my uterus intact & increasing progesterone intolerance has become particularly troublesome to get around.  I agree with Sheila that you may feel better for reducing your exposure by taking it cyclically rather than daily & that with your doctor's approval, a long cycle may also help, though you would need regular uterine scanning to ensure your endometrium stays within safe limits.  I do this.

Testing your estradiol level will show how well you're absorbing the gel, to help you make any adjustments that may benefit you.

As Gnatty says, testosterone may be especially important for you, oophorectomy having removed a major source of your production of this important hormone.  I certainly felt its lack after BSO.  It's usual & important to test levels before starting testosterone replacement & again afterwards to ensure your levels stay within range.  Maybe have a listen to the podcasts in the attached links from Newson Health.  The first is with a clinician & the 2nd, a personal account of how life changing T replacement can be.

The last link is to a website for women who've had surgical menopause & though that term technically doesn't apply to you or I as we were postmenopausal before BSO, it does contain a lot of relevant info you may find helpful if you haven't seen it already.

https://www.menopausedoctor.co.uk/menopause/116-testosterone-the-forgotten-hormone-with-professor-isaac-manyonda

https://www.menopausedoctor.co.uk/menopause/118-testosterone-not-just-icing-on-the-cake-with-rachel-dawber

https://surmeno.blogspot.com

Keep posting & don't be afraid to ask any questions.  Everyone here will want to help.
Wx

[JPoppyFalls]

Thankyou so much for all your help and invaluable advise ladies, i really appreciate it and have taken everything on board. Again thankyou so much.. 

[CLKD]

Suzysheep - well done on persevering! 

JPoppy - let us know how you get on ?

[Suzysheep]

Suzysheep - well done on persevering! 

JPoppy - let us know how you get on ?

Thanks CLKD… it was really hard going.. but I’m so glad I got through it! X

[Pippa52]

I so feel for you I have been there with the dreadful anxiety too it really is totally overwhelming and life stopping.  I had a surgical menopause many years ago and was on Oestrogel gel (3 pumps daily) until last year when they slightly altered the main ingredient and it just stopped working for me.  Cutting a long story short had an oestrogen level blood test which came back at 98pmol which the Menopause consultant said was ''exceedingly low''. She changed me onto Lenzetto oestrogen spray as she said several of her patients were having the same problem with the new formulation of Oestrogel.  I did have real problems getting the dose right on Lenzetto for several months but last week was really starting to feel better - had another blood test and it was up to 244pmol which is apparently where it should be.  So the reason for the awful anxiety etc was because I was not absorbing the new formulation of Oestrogel which of course having been on for over 20 years I did  not connect until I went to see a Menopause consultant - best thing I have ever done.  Do hope you get some help and start to feel better soon it is just beyond awful feeling that amxious.  x