HRT after hysterectomy and endometriosis: oestrogen only or with progesterone?

[Skyrmion]

Hi,

I finally decided to go on HRT and I have a history of stage 4 Endometriosis, with adenomyosis.

Pretty much exactly 3 years ago I had a hysterectomy and one of my ovaries (the one with a massive endometrioma) was taken out too.
I had massive infiltrations, endometriosis sitting at bowels and bladder, as per report it was "all clear" after the robot assisted surgery.

Now my question is - its recommended to use progesteron to prevent the estradiol triggering possible remains of the tissue.

I am 54 now, I was prescribed Estradot patches, and only after double checking with the GP he agreed that Utrogeston every night should be prescribed, and he did.

What are your opinions in terms of benefits and safety? Some say Estrogen on its own is safer, some say Progesteron aids sleep and is acting "anti anxiety", which I could do with.

What would you do?

Thank you!

@popsickle555 My post was for the OP who asked how much half a pump was.

If that amount works for you that's fine.

I started on half a pump but it did nothing and I had to go to 1 pump, then 2 and then even 3 (for a short time) in my late 50s.

I'm now back to 1 pump, many years later, but it's not enough to completely manage my sleep. Interestingly, I find too little /falling levels provoke migraines.

Yes this seems to be it for me - the rise in oestrogen (before ovulation) then the drop before end of cycle. I seem sensitive to the fluctuations - annoying as it’s hard to stop that I think whilst still cycling.

Thank you so much for sharing your experience!
I would do the exact same thing if I was you - there haven't been any cases of breast cancer in my family (including grandmothers on both sides), so I will chance it.

I hope your approach will work for you just fine! :)

I have stage 4 endo and adenomyosis and had surgery with a specialist last year who was very thorough (over 8hrs!)
she wrote to my GP and said when HRT was needed I was to have oestrogen, plus progesterone on top of the progesterone already from my Mirena
she also said oestrogen fuels the endo and so more progesterone to balance it out was needed

I used Lenzetto after removal of both ovaries and had blood tests via my NHS menopause clinic in the end after continuing with it longer than I should have, because it clearly wasn't working.

Funnily enough, I paid privately and saw Dr Karen Aitken face to face in Glasgow who you have consulted with too and she was utterly useless - so much so that Menopause Care refunded my consultation fee. She had advised continuing with Lenzetto despite me being very symptomatic and also failed to organise an (unneeded) blood test that she insisted I needed to 'check my baseline testosterone level' despite me having had both ovaries removed. Btw - she's absolutely NOT a surgeon, but did work at Sandyford Menopause clinic in Glasgow and her qualification is in sports physiotherapy and as a GP.

My level was hovering at best just at or below 130 pmol on 3 sprays of Lenzetto. Which is less than a 37.5mcg patch would give.

Thanks again, everybody!

I found out that the gel as well as the spray are absolutely "a thing" in Ireland, covered by the HSE just as the patches are and now I am considering going back to my GP and ask for it.

It sounds so much more flexible and practical.

I'm glad I started this thread, so much useful information! (heart)

In answer to your question on how long to take HRT.
Breast cancer risk -HRT for 12mnths or less has no affect on risk. Over 12mnths HRT increases your risk and even when you stop using it the risk remains for up to 20yrs

The absolute risk for breast cancer is small but the figures available are for post menopausal women. There are no long term studies on women taking HRT pre menopausal. Because you still have one ovary you fall into this category.

Endometriosis- it’s probably an individual risk and you need to try it and see.

The blood test used to determine whether you are pre or post meno does not measure estrogen or progesterone. It measure FSH, follicle stimulating hormone, which starts to increase as you age and your ovaries require more stimulation as you age. Over a certain level they indicate primary ovarian failure ( menopause). It is not affected by HRT use and you could request it. Post menopausally, if you have no uterus you probably don’t need progesterone.
I had stage 4 endo, had a Mirena coil from 40-57 and GP added in low dose estrogen which got rid of the mood swings and mild hot flushes. At 40mg via patch it didn’t trigger the endo, however it didn’t really do much for aches and pains. I later found out that that was due to magnesium deficiency.

I had to stop HRT when I was diagnosed with breast cancer ( I was one of the unlucky statistics) and I have now been taking hormone blockers . I was dreading it but apart from the common side effect of joint pain ( not directly down to low hormones) I have been very pleasantly surprised how ok I feel with no hormones. Without fluctuating hormones which happens with HRT to a lesser degree while peri menopausal, my mood is constant. I have had a lot of resolution of the constant background pain of endo because the lesions have been starved of estrogen so have withered away.

I had chronic sciatica throughout my fertile years due to endo lesions wrapped around the nerve. After five years of hormone blockers I am pain free. Well apart from generalised joint pains, but these don’t even merit a paracetamol. Sciatic was constant and sometimes difficult to cope with.

So overall, I benefitted from HRT when meno was going on but once post meno HRT is probably less beneficial for those with endo. In fact being hormone free post meno for an endo women is like having a new body.

You have to factor in natural aging which HRT doesn’t prevent but I can’t remember feeling so good. My abdomen now just does what normal non endo women’s abdomens does. It no longer tortures me on a regular basis. I probably get through a pack of paracetamol every six months rather than every 3 days. That period of my life is a distant memory and I no longer care about my skin, looks or weight because I don’t have to cope with abdo pain.

I’ve currently got a trapped nerve in my neck ( occupational) but it’s nothing like the visceral pain of endo and if I wear a simple foam collar or just lie down it goes away. It also responds to painkillers, endo never did it was always an 8 reduced fro a 10 even with the strongest concoction.

My advice is to have a chat with your GP and if you go for HRT take the lowest dose that relieves the symptoms that bother you.

@Crwysmam
Thank you so much for your thoughtful response! More to think about.

I'm glad to hear that you're doing okay, and I'm sorry to hear about your breast cancer...you just don't now, ever, it can hit anyone, anytime.

All the best to you, and thanks again!

No problem. I believe that like many “women’s” things we often feel pressurised by the experiences of what can be a minority of people. It’s unlikely you are going to see a thread celebrating a trouble free menopause, not because it is rare but it would be seen as smug or goady. Companies encourage you with multiple emails to leave positive reviews but rarely have to ask for negative reviews.

We feel uncomfortable being positive so the actual experiences of every woman are often seriously skewed by those who are much more likely to report a negative experience.

We are also subject to consciously programmed to expect the worst. When you have surgery they have to prepare you for any eventuality, the relative risk doesn’t really register with most people. As a result we are primed to put every ache and pain or symptom down to menopause.

Before I was diagnosed with cancer I had some weird symptoms that fitted perfectly with menopause but were actually my body reacting to the tumour. Women in their 40s and 50s are obsessed with symptom spotting and in their pursuit of HRT can miss obvious red flags for other diseases. Davina McCall was a classic example. Her symptoms didn’t respond to normal levels of HRT so instead of investigating her broader health she advocated for much higher doses and supported the idea that we are all different and doses should not be standard. She was diagnosed with brain cysts, present since birth, slow growing but started to impact her health during peri menopause.

As a result they took a blinkered approach and didn’t look for a differential cause. A simple MRI would have picked them up years ago. It doesn’t surprise me that after years of high dose HRT she had been diagnosed with breast cancer. It may be coincidental, she has a history of substance abuse which may or may not be connected. But we do know that prolonged high dose estrogen is a known risk factor for breast cancer.

Essentially those of us who have an ok menopause don’t shout it from the roof tops. Those that do never stop moaning. It’s perfectly ok to moan but maybe we need more women to talk about the good to moderate experience for a more balanced view.