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[Chuckers21]

Hi, I'm new to this forum, so forgive me if I'm writing in the wrong section....I've had a total hysterectomy & an oopherectomy because of severe pms.  I felt absolutely fine until I went on estrogen only HRT. It gave me hot flushes, dry eyes,  painful acne type cysts, extremely sore boobs, palpitations, heartburn, very tearful & made me really tired.  My left leg was also very painful & I could hardly walk on it!  I explained this to my GP, and she basically said that I had no option but to take HRT as I am 38 years old. I was on the tablet form first which was making me feel horrible, then was on the evorel, then estradot 25 patch.  I still had all the awful side effects! I have made the decision to come off it & just stick to calcium with vitamin d tablets, which I feel so much better with.  I just feel as though the GP didn't listen to me, especially when I was quite worried about the leg pain (blood clots?).  I'm sorry for waffling on, but it would be nice to see if anyone has felt the same on HRT?  Thanks for listening 

[CLKD]

   you waffle as much as you need to!  I expect your GP is suggesting HRT to protect heart and bones.  Have a browse of the menus, top of screen.  I'm sure someone will be around with advice …...

[Chuckers21]

Thank you!

[CLKD]

Stick to what makes you feel OK.  How is your diet generally, also do you exercise regularly?  Apparently we don't get enough sunshine ………. because we have been told to use high factor sun screens  and don't get out in the fresh air often enough.  We need to protect our bones with brisk walking, you may like to drop into the UK Osteoporosis Forum too - to see how other ladies 'do'.

Let us know how you get on!

[Hurdity]

Hi Chuckers21

 

Sorry to hear about your troubles. How long ago did you have your operation? Unfortunately with a major operation such as you have had, you've been plunged into sudden menopause and it can take the body many months to acclimatise. Your hormones are in turmoil and you have suddenly cut off supplies of oestrogen and testosterone.

Your symptoms sound typical of other women who have had this major operation and who have posted on here. The hormones are governed by complex feedback mechanisms of a whole array of hormone - and it really will take some time for them to readjust.

What sort and dose of HRT were you given?  It may well be that those symptoms are due to the sudden drop of hormones from the operation rather than the HRT itself. If you were put on a high dose to start with this can also cause side effects and it is better to increase the dose gradually. In addition some women are offered testosterone as well. There is information on this site about that here:
http://www.menopausematters.co.uk/aftermeno.php (scroll down)
http://www.menopausematters.co.uk/testosterone.php

I would actually go back on it - starting with the low dose of Estradot as you tried. This is almost certainly insufficient, but you could increase the dose every couple of weeks until you reach at least 100 mcg. The hot flushes are caused by the decrease in oestrogen, not the HRT itself. Tiredness and low mood are also symptoms of oestrogen deficiency - and even externally given oestrogen should not cause these symptoms. The sore boobs could well be do to the oestrogen but these symptoms will settle.

Please do persevere because I think you are mostly getting symptoms as a result of the sudden menopause which will take a while to recover from, rather than because of the HRT.

It is really important to take it at your young age to protect your future health - there are studies which bear this out.

Keep posting and let us know about your progress...

Hurdity x

[Chuckers21]

Thank you so much for replying so quickly. It's lovely to know that there are people around who will listen to my grumbles! It's difficult when none of your friends have gone through menopause as there's not much they can say  I'm going to take a while to read up on the things you have said, firstly by starting back on the low dose HRT. I will get back to you ASAP to tell you how it's going.  You both sound like you understand what I'm going through, so it's good to know I'm not completely mad (well, maybe slightly!) I do exercise as well....I have 4 very active young children & a 5mth old puppy who needs plenty of walks. This is why I'm impatient & want to feel "normal" again! 

[Linsey44]

Hi Chuckers like you i am in surgical meno (1yr) due to having faulty BRCA2 gene.  Even though i have a genetic disposition to breast and ovarian cancer i still take hrt and will do for several years.

This was advised by a gynae surgeon, breast surgeon, gp , dr currier and then a plastic surgeon.  All said to protect hears and bones.  I take 2pumps of oestrogel and utrogestan although i had a hysterectomy i still take progesterone due to a history of adenomyosois.  I like the fact i can vary the dose of oestrogel so,you could always start off on a very lose dose.

Although you seem to be coping at the moment  i would say you should consider the long term effects of having no estrogen from such a young age.

Take care
Linsey

[Chuckers21]

Hi Linsey,
Firstly, can I just say what a brave lady you are! I feel like I shouldn't be moaning about anything....

I feel that GP's only have a certain amount of time to spend with you & I can never explain things quick enough to them. Maybe if I went to a specialist clinic, I would have more time to discuss what option might be best for me.  I have also heard that you can have a blood test to check your hormone levels, then can decide on what dose HRT is needed but I'm not sure this is available on the nhs.

I hope you are recovering well and thankyou for taking the time to reply 

[Linsey44]

I am all recovered hysterectomy was in 2013 and then ovaries in 2014.  Im not brave.  That word best describes those who go through cancer treatment.

There is a tab at top of screen - find a specialist - see what is available near you.  Or you could pay for an online consultation with dr currie on here.  I done that also and printed it off so my gp would prescribe my choice of hrt.

Certainly worth thinking about.

Linsey

[Chuckers21]

Thanks for sharing this with me. I'm sorry if I sounded patronising in any way. That wasn't my intention!

It sounds like a good idea to have the consultation. I think I'll go ahead & do it tomorrow

Thanks again x

[CLKD]

Let us know how you get on!

[Linsey44]

Chuckers you are most def not patronising.

Linsey

[Sazduggs]

Chuckers,

I was in th same situ as you, 34 years old I have been put into a chemical menopause with zoladex to see if a hx and ooph will stop my PMS, so technically I have no ovaries since dec.  well I can tell you it was hell, I'm on estrogen only and at first I was on 1mg climavel then went up to 2mg, I felt awful, really depressed, couldn't walk for achy muscles, mood swings, flushes, coldness every symptom known to man!!!!!!

Then my dr checked my E levels and they were 120 which was way too low so they added a 50mcg patch of Evorel, I felt a little better but not much, by now it's early march so I had 3 months of hell and was convinced this wasn't ever going to work and that it's not hormonal and I'm just a crazy psycho bi-polar loony!!!! I honestly didn't know which way to turn. Then I realised that the tablet was making me feel ill, nausea and headaches so I asked to be put on just patch, so since March 6th I have been on 100mcg patch and things improved almost immediatly and they just got better and better, I had my bloods done again last week and they E was 280. Dr said he would like it a little higher so prescribed me oestrogel 1 pump a day if I feel I needed it as I told him I still felt and little swingy at times, well I've been adding the gel for 1 week and holy crap I feel great I feel like me for the first time in years.  He wants to see me stable for 2 months before he will take everything out but I now can't wait!!!!! The symptoms you report sound to me more like severe surgical meno symptoms that happen and not the estrogen, it takes 4-6 months to see even a slight improvement with estrogen for surgical meno patients.

I hope this has helped you a little

Sarah

Xxxxxxxx

[Chuckers21]

Hi Sarah,

Thanks for your reply.  You seem to have really gone through the mill, but it sounds like you have a great doctor. Mine haven't even suggested taking blood to see what my hormone levels are - which sounds like a sensible thing to do! I think I need to be a bit firmer when I go back and ask for more tests etc....

I realise as well that I need to persevere with the patches because as soon as I start feeling rubbish, I take it off....so maybe I'm not giving it enough time. I was also on climaval after my op & ended up being taken to a&e as it was making me so ill!

I hope all goes well with your op when you have it.  Let me know how you get on.....and thanks to everybody providing me with such good advice too xxxx

[jaki]

Hi Chuckers,

I don't know if this will help at all, but I'm on the waiting list for a total hysterectomy/oopherectomy for severe PMDD and peri-meno symptoms. I'm 47 and have taken HRT for 6 years (I resisted for most of my late 30s, trying nutrition/exercise etc), though my periods/cycle have been the bane of my life since I started at age 11... I'll spare you the details because if you've suffered PMDD you know EXACTLY how it is!

I'm just about to start up again with zoladex - I was on it for a year with add-back Elleste Solo and a Mirena , and came off a year ago, though over the past 6 months the nightmare has kicked in again. The Mirena sorted the heavy bleeding, the Elleste the menopausal stuff, but neither sorted the PMDD – I'm having my 3rd mammogram in 5 years for a hormonal breast mass this week.

While in chemical menopause, it took a while to get the balance right, but when it was right it was wonderful. I was sane and 'normal'! Over the years I tried varying oestrogen stuff, and it really does take some fine tuning - getting the right type and the right dosage. I have felt ill, mad and many other things on the wrong type/dose, and my GP (though lovely) was hopeless, sadly. I think you need to see a gynae, as that's the only thing that changed it all for me. My GP just kept trying different things, but the gynae just knew so much more. I paid to see him privately (could only afford it once, he very kindly then put me on his NHS list) as was so desperate with the last hormonal mass and all the symptoms, that's what the breast consultant suggested.

I'm curious about your hysterectomy, too, as I'm mildly (understatement and a half) terrified of the op!!! Sorry if I've waffled on, but I hope in some small way it helps. xxx