endometriosis and HRT

[Sweetie456]

has anyone else had issues with hrt and endometriosis? I’ve had a total hysterectomy and was prescribed estrogel to help with menopause. Felt great until I was then put on progesterone tablets to stop endo growing again elsewhere. The progesterone has hit me hard and obviously doesn’t suit me but I’ve been told to basically just put up with it. Any advice would be gratefully received!

[Lindle]

Did you have your ovaries removed and what stage/severity was your endo and was it all excised at the same time?

[Sweetie456 in reply to Lindle]

Yes I had everything removed. I was told it was severe endometriosis and that it’s possible it would still grow onto other organs

[MyStar86]

you don’t have to put up with it there are lots of different types of hrt. They do combined patches with oestrogen and progesterone, they do a natural form of progesterone and they do a combined hrt pills with different progesterone in them. It does take a while to find the right mix but it is worth trying to accept feeling bad hrt can really help it just needs to be the right combination for you.

I can only tolerate gestodene progesterone so I use the Lenzetto spray and take my old combined pill femodette as that’s the only pill that contains gestodene. This is not something I would advocate as taking the combined pill has a lot more risks but I was going crazy on anything else but once I swapped to this mix I’ve been the happiest mentally I’ve been in years even pre hysterectomy now I’m more balanced etc.

Don’t give up have a Google speak to your gp people can help you xx

[Sweetie456 in reply to MyStar86]

Thank you it’s good to know there are other options out there. My GP seemed to be googling and just kept repeating I have to stay on progesterone… I said I’d prefer to just come off hrt altogether, but she said that wasn’t an option either! I have booked a private consultation. Frustrating having to pay so much money because GP’s don’t yet have the training 🙄

[MyStar86 in reply to Sweetie456]

How old are you if you don’t mind me asking? I’m 36 with osteoporosis so I have to be on HRT but if you are older there is the option not to have hrt. I had to go private as well it’s unfair how the system is but hopefully you won’t need too many consultations and they will be in the best place to help you. Let us know how you get on xx

[Sweetie456 in reply to MyStar86]

I’m 46 the doc says I have to continue with hrt for my health. Really hoping the private specialist can help 🤞 x

[MyStar86 in reply to Sweetie456]

It will be mainly for your bones and trust me you don’t want osteoporosis like I have so do keep up the hrt as it’s worth it once you get the right balance. The specialist will be able to help it might take a few different try’s but I believe they will help you. They will probably try the patches as they are the safest option and saves you having two different types of hrt so I will keep my fingers crossed for you. When do you see them?xx

[Sweetie456 in reply to MyStar86]

Thank you x

I have an online appointment tomorrow afternoon 🤞

[MyStar86 in reply to Sweetie456]

I’ll be thinking of you and hoping it goes well xx

[Hidden]

I've had a hysterectomy and oophorectomy and am on HRT. Assuming you had the surgery at a bsge centre and endo was definitely excised, can you be more specific about what the issue with the progesterone is and what type you're on (is it utrogestan?).

[Sweetie456 in reply to Hidden]

Yes it’s utogestan. It seemed to hit me really hard. I was crying constantly, my body aching and I’ve developed lumps in my breast. I’ve given up on the GP, they just kept saying I had to put up with it. I’ve booked a private consultation. Just frustrating that the docs aren’t trained in menopause and hrt

[BloomingMarvellous]

It’s not unusual to struggle with progesterones. A percentage of those with endo have either progesterone intolerance or issues with receptor function. It can make you feel pretty rough. I found that standard patches didn’t work well with the progestins ( and hadn’t tolerated progestin only pill when younger ) so no surprises. We then tried Utrogestan orally , which wasn’t great but better than the patch. After a while found my system just didn’t want to know and caused more depression. Moved on to using it vaginally and that was better but still the emotional roller coaster wasn’t great. Finally have settled using Cyclogest ( off prescription label but basically again a bio identical) which I use vaginally and seems to carry the least difficulty and much less in the way of side effects.

[Sweetie456 in reply to BloomingMarvellous]

Thank you. It’s comforting to know I’m not the only person struggling and that there are other options out there x

[BloomingMarvellous in reply to Sweetie456]

Feel your pain. It’s a bummer weirdly the progestins made my pain far worse but I also know my oestrogen levels have always been low . You have to listen to your body to find the right way for you . I knew without the oestrogen I was complete basket case so it motivated me to handle it better. I found looking at my B12 levels helpful as it helps the body process the oestrogens more effectively too.

[Sweetie456 in reply to BloomingMarvellous]

Thank you. I might request a blood test to see what my hormone and B12 levels are like. It will be such a relief when I finally find what suits my body and makes me feel human again!x

[MyStar86 in reply to Sweetie456]

You would need to come off your hrt for a while to do the blood test as the levels won’t be accurate whilst on hrt that’s why a lot of doctors don’t use the test as it’s affected By hrt and contraceptive pills xx

[TennisCourt in reply to BloomingMarvellous]

Hey! I hope you don’t mind be jumping on here but what you said about women with Endo have progesterone tolerance issues… could you explain this further please?

I have suspected endometriosis and I have my first surgery end of this month. I have only been on progesterone contraception and HATED them all. I just to bleed 24/7(granted light and not painful but Inconvient) and mentally and emotionally I never ever ever get on with them. I came off all birth control last year which led to extremely heavy and painful periods, I went back on pill and came straight off it as I felt a shell of myself. So I’m back to heavy and painful periods🤦🏽‍♀️ feel I can’t win. But I know ideally I need my periods stopped as it encourages Endo to grow.

But honestly I get so over emotional, sensitive, low moods, on the implant I felt like a physco honestly

The problem is this only birth control I can have is progesterone due to my brother having a blood clot which caused liver failure and a liver transplant. Not one doctor has ever mentioned what you said though I thought I was crazy that I didn’t react well to them! Thank you I’m advance xxx

[BloomingMarvellous in reply to TennisCourt]

While a lot of what you have said sounds like progesterone struggles until the extent of the endo is seen and properly excised I’d be cautious in labelling it as that. Endo can cause havoc metabolically that’s difficult to unravel and put directly at progestins door maybe inaccurate . Progestins which are often more problematic are in birth control and some HRT , Utagestan although bio identical can be tough for some and is contra indicated for those with peanut issues. As endo puts a bomb in the body metabolically speaking and the endocrine system is very much a waterfall effect from one to another untangling it can be a tall order. Research in this area is limited so a lot is unknown and while you are identifying an issue there may not yet be an answer. You may find bio identicals more helpful or not at all, but first get the other stuff sorted and see where that brings you X

[BloomingMarvellous in reply to TennisCourt]

if you haven’t dug into the research lead book by Katie Edmonds I’d recommend it as a route to exploring why you get these responses x

[TennisCourt in reply to BloomingMarvellous]

Thank you so much xx

[BloomingMarvellous in reply to TennisCourt]

Also of initial interest Dr Louise Newson on her Balance App has a useful discussion of progesterone intolerance ( no not the same issue as resistance)

[BloomingMarvellous in reply to TennisCourt]

There’s a decent piece by Laura Biden on Progesterone Intolerance which looks into the mechanisms of GABA receptors with some sensible guidance you might want to read up on.

[Sweetie456]

I had the specialist consultation yesterday. They have told me I can continue with the estrogel and don’t have to have progesterone unless I get pelvic pain. If I start getting pain I can try the progesterone tablets as pessaries. If I’m still struggling in a few months I can look at testosterone…

Thank you everyone who commented. It really helped me plan for my appointment and give more of an idea what I wanted to ask the specialist. I now feel a bit more hopeful! X

[MyStar86 in reply to Sweetie456]

I’m so pleased it went well and thank you for letting us know how you get on and if you have any problems we are all always here!! Hormones are difficult to balance it took me months after my hysterectomy I thought I was losing my mind and would cry all the time but when you get the balance right you feel like a new person again so fingers crossed for you. I wish you all the best and sending some massive hugs for the weekend xx