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Menopause

Re-Starting Estrogen Only HRT (surgical menopause)

(11 Posts)
Blueberrygran Tue 21-Mar-23 13:37:11

I am 54 years old (just), and had a total hysterectomy and bilateral salpingo oophorectomy (both ovaries) at age 46. I wasn't given HRT at the time as I was told by the consultant that did my surgery that I might not need it.

What ensued over the following years until September 2021 was a long decline in my health both physically and mentally. At first I thought I could just manage with lifestyle changes and I am a pretty positive person, but by a year after my surgery I didn't recognise myself (exhausted, rapid weight gain mainly in tummy, awful joint and muscle pains, vaginal atrophy, anxiety and low mood).

To cut a very long story short I was eventually seen by an NHS menopause clinic and placed on an estrogen only implant in September 2021. Within weeks I felt a miraculous improvement! I then had another implant in March 2022 and was told that I could remain on these as long as I wanted to. I felt hopeful at last as I finally had some semblance of a life again after so long.

But this was not to be. I had a review with the consultant at the clinic before my next implant and mentioned that when I had Covid, I had developed a nasty rash (urticaria) which lasted a few weeks. I only mentioned this as she asked about my general health. As apparently there is also a link to estrogen and urticaria, she suddenly decided that another implant was not going to be offered. I accepted this, but somewhat sadly as I had tried other transdermal HRT's and struggled a bit as I am also a migraineur who is under the care of a consultant neurologist and dips in hormones made this worse. He was fully in support of me having the implants as I had long stretcheds migraine free on the implant when my estrogen was steady. I couldn't really understand why she was so vehement about it though as the rash had resolved and was very clearly related to the covid infection.

I was not offered a review appointment again for when my implant was due to run out, and subsequently hit a total brick wall again in every way in November symptom wise - along with vicious estrogen withdrawal migraines. I tried to manage as best as I could but things got so bad again that I called the consultant's secretary to see if there was any way I could receive any help or advice. I eventually got a call a few weeks later and was told by the consultant that there was nothing she could really do and as I was 'now at the approximate age of natural menopause' that I should persevere without HRT. Her manner was not in the least sympathetic or helpful.

I felt I had to accept this, so tried to struggle on until December and finally broke down to my husband on Christmas Eve. His response was to actually send a complaint email to the health board there and then, even though of course it was Christmas so no one would see it until New Year.

After New Year I had to wait the maximum 8 weeks for a resolution to my husband's complaint and have now been offered a menopause clinic appointment with another gynaecologist, but this has been cancelled twice already. The next one should be at the end of April.

Today I finally felt like I couldn't carry on anymore like this so I phoned my GP surgery and explained everything and a very kind male GP has written a precription for Evorel 50 patches. I haven't used these before, but tried Estradot previously and they just wouldn't stick so I'm hopeful these will be better and that I can also actually get them!

I feel really saddened and exhausted and dare I say let down. I thought we were treating women better than this now especially with the NICE guidelines in place but apparently not. I hope you all don't mind me sharing - I just had to offload really. And if anyone has any positive experiences of Evorel patches, I'd love to hear them too please - I could do with a little hope and encouragement. Thank you.

Lilliesmum79 Tue 21-Mar-23 14:17:23

I have been on these patches for 2 yrs now and they have changed my life. I have fibromylgia and arthritis. I had hysterectomy when I was 31. I'd prolapse womb and heavy periods. Put on tablet HRT tried to persurvere but had awful migraines I'd a history of them. So I was taken off them when I was about 40 and thrown in deep end so to speak, tried everything herbal that was known to mankind except cannibas maybe that would have helped more lol. Anyway had low moods, depression and anxiety. Sweats day and night, weight gain, pain all in joints and back. Sex life stopped to dry and got recurrent UTIs, also thrush. My IBS was becoming severe too felt paranoid that everyone was watching me and talking behind my back. I was at a hairdresser around 2/3yrs ago a new lady never met before and she was so nice to me I broke down in front of everyone and started crying. She took me into their wee room at back made me tea and I sat and talked about it with her she was lovely. She had a hysterectomy too and Dr's wouldnt give her tablet HRT because of migraines. She started on patches and her life totally changed she was lovely so helpful wrote all info down so I woundnt forget it. So I started on them now took about 5/6wks to fully work. But it's like day and night feel so much happier and even have a sex life back. Still get days when I feel down but nothing like I was. Really was like a miracle to me. So this is so long but felt I had to let you know my story if you need any advice just ask x

Oldbat1 Tue 21-Mar-23 15:37:04

I hope it works for you. I had a total abdominal hysterectomy and ovaries removal aged 50 at the same time also diagnosed with an under active thyroid. Apart from thyroxine I didn’t get any hrt as gp said there was too strong a link to breast cancer (which is now unproven). I don’t know how I coped. I would have jumped at hrt. Best wishes to you - no need for women to suffer.

Blueberrygran Tue 21-Mar-23 15:43:18

Thank you so much for replying, Lilliesmum. I'm so sorry to hear that you've been through being forced to try to cope with the same symptoms as myself, but at an even younger age! Thank goodness for women helping other women - I'm so glad that the lady in the hairdressers reached out to you that day. I really appreciate you taking the time to tell me all about your experiences - you've given me hope for the patches too and your kindness has meant the world.

Blueberrygran Tue 21-Mar-23 15:47:12

Thank you so much, Oldbat1. The misinformation then was awful and I know how hard it must have been for you but with a diagnosis of hypothyroid too, much harder still. You're a remarkably resilient lady.

LRavenscroft Tue 21-Mar-23 20:07:05

I was interested to read your post but also sorry that you have had to go through all this. I am in my sixties and way past menopause but notice everyday how the lack of estrogen affects my life. Everything is just beige. When I read your age I felt that you were way too young to be expected to cope with a beige life at so young an age. It is good that your husband has written a complaint email and also the GP you contacted sounds as if he is trying to help you. I wish you all the best and hope you find your mojo again very soon. You are still so young and you deserve the very best care you can get.

Mancjules Tue 21-Mar-23 22:20:35

I had a hysterical ectomy at 42. My gp put me straight on Estraderm patches. Stayed on them til 54 and tried to come off them...but after 2 years went back on as I struggled, felt tired and not myself. I'm 66 now and still on them. Don't think my gp dare try and take me off them!

dragonfly46 Tue 21-Mar-23 22:32:43

Oldbat1

I hope it works for you. I had a total abdominal hysterectomy and ovaries removal aged 50 at the same time also diagnosed with an under active thyroid. Apart from thyroxine I didn’t get any hrt as gp said there was too strong a link to breast cancer (which is now unproven). I don’t know how I coped. I would have jumped at hrt. Best wishes to you - no need for women to suffer.

The link to breast cancer and HRT is not unproven. I have had breast cancer and now take tablets to eradicate my body of oestrogen. My breast cancer was oestrogen based and they think part of the cause was the 5 years I took HRT!

Blueberrygran Wed 22-Mar-23 10:26:09

LRavenscroft, the thoughtfulness and kindness of your reply brought tears to my eyes. I really had no idea what lay ahead of me after I had the surgery, and was very unprepared. My father had passed away just 3 weeks before I had the scan that discovered the cyst on my left ovary which the surgeon thought may be cancerous - after surgery I had to wait for the pathology but thankfully it was clear. I had lost my Mum to cervical cancer when I was 19, so acted totally out of fear probably compounded by grief for my father, when I agreed to have everything removed. I feel I should have asked more questions at the time.

I wish I could bring a little colour back into your life too, but please know that your kind words have brought some into mine today. Thank you so much.

Blueberrygran Wed 22-Mar-23 10:41:08

Dragonfly46, I am so very sorry to hear of your diagnosis. It's a very tough road indeed, especially adjusting to the side effects of aromatase inhibitors.

Regarding risks of taking HRT - both Oldbat and I have different risk factors to those that you would have had. We have both had an bilateral salpingo oophorectomy which means that our risk is much lower as we produce very minimal estrogen ourselves, plus we have had a hysterectomy which means that we would take estrogen only hrt. The increased risk of breast cancer is higher with combined hrt (estrogen plus progestin/progesterone), but has actually been shown to be no greater for women who take estrogen only.

I think this is where it's very, very important to remember that each person's own individual risk factors are considered and that a woman takes an individualised decision on whether or not to take hrt based on that.

I hope your journey to recovery is going well - if you have a return of or intensifying of symptoms after coming off your HRT and taking the aromatase inhibitors, I know your cancer care nurse can very much help with this too. I am aware that joint pains can particularly be a very big issue.

Blueberrygran Sun 26-Mar-23 13:42:38

Just a small update - fallen at the first hurdle, sadly. I couldn't get the patches to stick for love nor money and I was very meticulous about prepping skin etc. As soon as they made contact with water in the shower, they just slid off and I was very careful. I now have Oestrogel to try instead. This has knocked my confidence a fair bit so I'm giving it a few days before I try again. I wish this was easier!