Surgical menopause - loosing my mind

[JoyApple]

Hi, I'm in surgical menopause from March due to severe endometriosis and adenomyosis. Both ovaries removed.

The consultant put me on 0.5 estradiol but I'm really struggling mentally. I've been to GP who seem unsure what to prescribe further. Anyone have any advice or experience?

What sort of estrogen are you on- gel, tablet, patch?

I don't recognise that dose as it's not the equivalent of a tablet, patch or gel.

It's extremely low- most women use 1mg a day (tablets, patch or gel) as a minimum.

Are you not having a follow-up with the consultant?

Sounds like you need a higher dose if the symptoms are still extreme. Can you afford to go private? Louise Newsome seems to be the expert. Your GP should be doing better but sadly they often aren’t that well informed.

Sorry, your GP is "unsure what to prescribe?" That is appalling. if you are on 50mcg estrogen patches (or equivalent in gel or spray) and are still struggling then the first thing I would expect them to try is to increase to 75mcg, or 100mcg. I am on 75mcg patches, I have had a hysterectomy too but kept my ovaries (which then packed up anyway).

Plan of action. Do some reading about doses and women in your situation. Go back to the GP and ask to increase your estrogen dose. Juist keep parroting "I'd like to try a higher dose please" whatever they say in response. Ask your GP to refer you to your nearest NHS menopause clinic - you will have a wait, but given your other gynae problems this is what they are there for. If that's going to take a while, consider paying to see a private menopause clinic/GP.

You are being very let down here. Appalling.

I'm on the patch.

Hospital discharged me without a follow up. I went back to them and forced them to give me an appointment in August.

Thank you!

Did you have hysterectomy for endometriosis?

The GP said she spoke to gyno who said they could potentially look at increasing the estrogen dose but that comes with risks due to endometriosis growth. She seemed very unsure and said she'll consult with her colleague once he's back from leave.

My only symptoms are low mood, fatigue and absence of libido.

You should also be taking progesterone to help protect against endometriosis regrowth. Does sound like you need a higher dose of estrogen.

Ive recently had a hysterectomy where they found endo and the consultant made it clear that taking progesterone was the best way to protect against regrowth if I wanted HRT.

I had my hysterectomy because of fibroids. Because of your underlying medical issues you need to push for that specialist referral. Low mood was my main symptom too, that and anxiety.

Thank you! Who specifically did you ask for a referral to?

And may I ask, what are you on now and how are you feeling mood wise etc?

You need to be in continuous and combined HRT to reduce the risk of regrowth. That means taking progesterone (or a progestin like dienogest) daily alongside your estrogen. I would definitely book an appointment with a private menopause specialist if it’s possible for you as it takes a long time to be seen on the NHS (at least in my area). Naomi Potters clinic allows you to choose a specialist menopause doctor to suit you. I recommend Dr Karen Aitken as she’s also a surgeon and was incredibly helpful to me. Some estrogen is not absorbed by some people, for instance I didn’t absorb the gel but was fine on the spray. So the dose doesn’t necessarily reflect what you are absorbing. You will feel so much better once you get your dose right but it does take a bit of trial and error

Commenting as someone who had hysterectomy in their 30s for endo/adeno, and also as a doctor….

It is extremely normal for women in surgical menopause to need 100mcg patches - your GP should increase to 75, then to 100, reassessing symptoms after each increase.

There is no absolute need for progesterone. There is a very small, largely theoretical risk of endo growth with unopposed oestrogen, but this should be discussed on an individual basis. I didn’t have progesterone as I’m very intolerant of it, and have had no recurrence of symptoms in the 7 years since my surgery.

Go back to your GP and ask to try a higher dose!

I didn't need to be referred to the menopause clinic as I managed to convince my GP to up the dose. I think though that as the other poster has said you need specific advice around your endometriosis from a specialist. Most women who have had a hysterectomy do not need the progesterone but a specialist will know whether you may benefit.

By all means ask your GP to refer you back to the person who did the surgery who should also know the ins and outs of aftercare. Often HRT is a bit of trial and error and seeing what works as we're all different. But saying they are unsure is the outrageous bit!

I am much better now, thank you for asking. I had a shockingly bad couple of years being fobbed off with antidepressants and thinking I was losing my mind or developing dementia.

Thank you :) may I ask what dose you are on?

GP was also talking about testosterone as my libido is low. But sounded unsure. Any thoughts on that?

The plan was to leave my ovary so it has all come as a shock.

It's appalling that you weren't given a follow-up appt.
I can't believe the off-hand way some consultants work.

Is seeing someone privately an option?
It shouldn't be necessary.
But the contrast with what you've experienced in huge.
When starting HRT I had 3-monthly reviews initially and a personal contact number to call if any problems.

You've been treated very badly and it's not good enough.

I’ve found testosterone really helpful for libido. It wasn’t overnight but after a few months I felt totally back to normal. It’s been shown to be helpful in endo patients for lots of other reasons including pain supression. I had extensive endo and adeno so hysterectomy for me too. They did leave an ovary but to be honest it failed quite soon after which is quite common apparently. So you may not have had a lot longer without HRT anyway

I did it without any HRT - same reasons for surgery as you - it was hard for a year or so but things settled down after that. Your body has undergone a huge change, aside from hormonal issues, it takes time to adjust. You are still relatively early in your recovery - your body is still processing the trauma of the surgery. If you can get a HRT dose that's right for you, that will help, but you need to give your body time to recover from the surgery itself and not expect too much from yourself

I’m on 100 patches, plus estring for vaginal part (you should have both). Still need plenty of extra lube for sex!

Most women don’t need testosterone once they are adequately oestrogenised…get that sorted first then see.

Wow how old were you when you had the surgery? Can't imagine managing without hrt

Thanks, will go back to GP.

Do you recall how long it took you to assess whether the increase of estrogen made a difference?

I was using gel after my total hysterectomy - I spoke to the GP after a few months and told her how fucking awful I felt - my mood was so low, I was getting very worried. She told me to stop the gel immediately and prescribed patches - my mood lifted almost immediately, and I've not had a problem since. So maybe your HRT doesn't agree with you?

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