Endometriosis, perimenopause, mirena and HRT

[JamieFrasersBigSwingingKilt]

I’ve been having peri symptoms for coming up to 2 years. I’m 46.

Just diagnosed with endometriosis and adenomyosis. Despite having painful periods throughout my life, I wasn’t expecting that. I thought the worsening pain was due to perimenopause.

I used to be on a 5 week cycle but this has dropped to 4 weeks over the last couple of years. So my periods are becoming more frequent and heavier.

I was after HRT to alleviate the peri symptoms but understandably the doctor is reluctant as says it will aggravate the endometriosis and adenomyosis. She has given me mefenamic acid and tranexamic acid to lighten the flow and alleviate the pain. They help a lot.

I get migraines so the combined pill is not an option.

So, the endometriosis pain is being managed but I still have all the peri symptoms.

The doctor has told me that as I can't go on the combination pill, the ‘gold standard’ is to have the Mirena fitted and to use an oestrogen gel. I’ve heard a few positive things about the coil but mostly negative things and, frankly, I’m not cock-a-hoop to spend 6 months bleeding/spotting.

She has offered to let me try HRT for no more than 3 months to see if it’ll work (to alleviate the peri symptoms and to not aggravate the endometriosis symptoms over such a short period). I can then see if it agrees with me and then she’ll fit the coil for me.

The gynaecologist who helped diagnose the endometriosis and adenomyosis has suggested I can manage the issues with keyhole surgery to remove some of the endometriosis tissue (but not all of it as some is inaccessible for this kind of surgery) and then try HRT for a bit.

He has also suggested a hysterectomy but it seemed extreme so I didn’t ask him many questions about it. In hindsight I wished I had.

I feel like I’m juggling two contradictory issues - and can only opt for one option while experiencing discomfort with the other unless I have a hysterectomy.
So...I can go belt and braces, have a hysterectomy and HRT.
Or, I can bleed over a long period of time and go through the uncertainty of a coil with HRT.
Or, do nothing and manage the period pain but still have all the other peri symptoms.

I would value your thoughts as am just trying to navigate through everything. Am I missing any other options? What are your experiences of the Mirena coil, or hysterectomy, or HRT? What would you do?

@JamieFrasersBigSwingingKilt Glad it was useful. I'm in a similar position - I have previously been diagnosed with endo (during a lap in 2013, when I was 35).

Since then, I've been on Cerazette POP - which has pretty much stopped all bleeding and controlled things so I am symptom-free. (There was about 2 months of dark brown sludge-y bleeding - but you have to persevere through that and there was no endo pain associated with it, just blood.) On the down side, Cerazette has also totally nuked my libido and might be responsible for my migraines (which began at 38yo) and I reckon it makes me constipated but my GP doesn't believe that(!) - but I've continued with it because it was dealing with the endo. Have you considered Cerazette POP?

I've had a few more thoughts since I wrote the above...

I know from my lap that my endo is on my right pelvic wall, top of bladder and bottom of uterus. (It was lasered out rather then excised unfortunately so I think it is still there and just suppressed by Cerazette.)

So: If I use a Mirena coil, it is only going to affect the uterus - that's how they advertise it anyway - it is local and its effects with progesterone are local, to keep the uterine lining thin. So - that is not going to prevent endo deposits responding to estrogen in HRT elsewhere in my body... (I did some googling and read some research papers where endo has returned when oestrogen-only HRT was given to post-menopausal women. Sometimes it even turns cancerous.)

So I am now thinking that I should have an oral progesterone as part of HRT - so it can suppress endo, wherever it is in my body. Because surely with endo, you don't want the effect to be only in the uterus??

So - that above was one (long!) thought I had... I've yet to speak to anyone about this - but I thought I might meet with both the local menopause clinic to me and also the Newson Clinic online, just to hear what they have to say and to chat it all over with someone.

To those who shared their experiences, thank you. I thought I'd come back and update.

I started HRT very successfully earlier this year. My mood has improved, anxiety deceased and many other physical symptoms have been managed. My periods are irregular though (they became like clockwork during peri - ironically, for the first time in my life!). I have just had another excruciatingly awful period this last cycle...

...which has reinforced my decision to have the Mirena coil fitted this coming week. I so hope it will be successful for me. Will report back with any progress!

.

An update for those who are interested...

Good news. I've had three cycles since the coil insertion. I've had two periods with very, very light cramping and flow. This last, third, period has been virtually nonexistent. I am still spotting but it's very manageable with tampons or panty liners and it's getting less frequent/lighter. I'm very pleased and cautiously optimistic about what the future holds.

Thanks for all of your support and advice.

I was in the peri stage of the menopause & was diagnosed with endometriosis, I had a hysterectomy, it was the best thing I ever did, I had been bleeding three weeks out of four, flooding, crippling period pains. My hysterectomy was done laparoscopically, I was only in hospital 16 hours, had it done on the Friday & was out having a pub lunch by Friday & driving in less than a week. I was back doing the school run a week after the operation. I'm now on HRT & have been for 11 years.

Yeah, the problem with hysterectomies is you increase the risk of prolapse. My mum had one about 20 years ago and now has vaginal prolapse and her internal organs almost coming out of her. You really want to try to keep your uterus, for structural reasons if nothing else - especially if you get as far as peri-menopause and menopause itself is just a few years away.

I get that in extreme circumstances a hysterectomy might be best for sure - but there are way too many women who are encouraged to have one who don't really need one - they think it's a perfect solution and only learn later on why it might not have been...

That's great news @JamieFrasersBigSwingingKilt . My experience of the Mirena is that my periods stopped altogether after a couple of cycles. Fingers crossed this is the case for you too.