Cannot take any more HRT.....Help!

[Arniesleftleg]

A bit of background. I've been in peri for about 8 years, it sucks.

4 years ago I asked my GP to prescribe HRT. He obliged but gave me the oral HRT and it made me feel suicidal when I started taking the progesterone part, so he took me off it.

A year later I went back and was prescribed the gel and utrogestan. It did nothing apart form make me feel very low (progesterone again) and so my GP recommend I go to see a menopause specialist. I knew this would cost but was so desperate.

Fast forward 18 months and the clinic kept prescribing me more and more estrogen patches, to be topped up with gel, each time I went back feeling shittier than ever. I had to stop going to the clinic as I just couldn't afford the blood tests and the consultations, along with certain HRT not on the NHS. I consulted my GP and she was worried about the amount of estrogen and so referred me for a scan to check my endometrial lining. The scan showed hyperplasia and I had to have a biopsy, a polyp removed and had the Mirena fitted at the same time. All tests came back ok.

The Mirena was an absolute game changer for me and I felt 100 times better and so took myself off the patches about 5 months ago as after I felt better than I had in years. Now, 10 months after the coil was fitted, all of my meno symptoms have returned and I feel utterly dreadful. I've been spotting and have spoken to my GP. I have now been referred to a gynaecologist and told I mustn't go back on the estrogen until I've had another scan to check my endometrial lining.

I'm now feeling utterly dreadful. My eyes feel like someone is rubbing glass in them, my gums are sore and swollen, I'm exhausted all the time, I'm not sleeping well and Im struggling to get through the days at the moment. I look like I've aged ten years.

I exercise, I try and eat well, I cold plunge and shower (been doing this for donkeys years), don't really drink, I take vitamins but still feel shit. Can anyone please help. I can't go on feeling like this, at least till I've seen the gynaecologist!

You got the coil 10months ago and came off the patch 5 months ago. So presumably you were 'allowed' to stay on HRT by whoever did your biopsy? You just took yourself off it? If so, I can't understand why you shouldn't now just go back on it?

If you do have to get a scan can you get it privately to speed things up? Here in Ireland it costs about €150.

@Pollyputhekettleon I was ok taking it as the Mirena was successful and the biopsy was clear, the spotting stopped a few months after having the coil. My GP is now concerned by the spotting 10 months on and is worried that my womb lining may be thickening again hence telling me that they won't prescribe anymore Estrogen until I've seen the gynae.

A private scan here is more than I can afford right now, and if it resulted in another hysteroscopy it would be about 4k.

Sorry I missed that you started spotting again. 10 months after a successful Mirena, 5 months of which you've been off HRT, it seems incredibly unlikely that you have hyperplasia again. Did you ask the GP how that would work? Isn't it far more likely you have another polyp?

How much is a private ultrasound there? Don't worry about a hysteroscopy being 4k, one step at a time.

@Pollyputhekettleon no, she took all of my concerns and consulted her partners about the amount of estrogen I was on previously and has devised something from that. I think I'll call them tomorrow and see if I can speak to the meno specialist. I just wanted to know if the spotting and return of symptoms was normal after 10 months.

The huge amount of estrogen I was on before the hysteroscopy was not doing me any favours but I'm thinking I may feel better with a smaller dose! I did reduce it down from 250mg to just 50 and then came off completely. After coming off I felt absolutely fine but then the spotting came and the return of symptoms. I feel like i'll never get it right 😳

I'd certainly ask to talk to someone else about a low dose while you're waiting for the appointment. Her theory seems wildly unlikely to me. You'll get there.

@Pollyputhekettleon thank you. Here's hoping x

@Arniesleftleg

Your posts seem to say you are having more/new spotting 10 months on from your biopsy.

How old are you?

If you are in peri and in your 40s, this spotting could be your own periods. The Mirena can either reduce the flow of periods or stop them completely. Both are normal.

Obviously, a Mirena doesn't stop peri symptoms without estrogen as well.

And you will get symptoms if you stop estrogen when it was helping you before. That is to be expected.

I can't believe you were on 250mgs of estrogen! That's crazy!

As you know the Mirena is a treatment for hyperplasia. So it's unlikely you have that. More likely that it's your own periods and the Mirena doesn't stop all bleeding in all women all of the time.

@JinglingSpringbells Thank you. I've not had a proper period for almost a year so I think I must be in full menopause, although my symptoms tell me otherwise. I'm 53, just. I got a bit of spotting for about 2 months after the Mirena was fitted and then it stopped, it came back about 2 months ago. I don't know if thats due to me taking myself off the patches or not!
The spotting isn't really bleeding, it's more discharge, (sorry if TMI).
Yep, 250mg. The clinic just kept increasing it every time I reported a new symptom. My surgery are thankfully now on the case and keeping an eye on me.

Don't take oestrogen at all or natural alternatives until cleared by the gynae - if you've got history of hyperplasia and polyps then there's always a risk of hormone driven cancer. It's not worth the risk!!!