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?

Hi Op

I was unexpectedly diagnosed with endometriosis (grade 4), adenomyosis and large ovarian cysts & fibroids just over 2 years ago at 48. I was was told a hysterectomy would be the best option. I was put on monthly injections of Triptorelin (Decapeptyl) until the hystectomy could be arranged. This shuts down the ovaries & induces a chemical menopause. It was supposed to be for 4 months. Then covid hit.
I was kept on the injections, but changed to a higher dose every 12 weeks. These are given by my GP.
I had tests & scans in the summer just gone. The Decapeptyl has shrunk back the endo, the cysts have majorly shrunk/gone. The fibroid can no longer be seen.
I no longer need a hysterectomy. I
am being kept on the injections until next September & then a review will be done. My consultant (endo specialist in one of the UK Endometriosis Centres) is hoping I will have completely gone through menopause by then.
I have suffered very few menopause symptoms & take daily red clover capsules & super complex vitamin B.
It may be worth seeing if you are suitable for this.

I was on tranexamic & mefenemic acid for years -fibroids, Endo with horrendous pain & such heavy bleeding that the medication hardly worked in the end & I couldn’t leave the house some days.

I also suffer migraines. I did everything they suggested. Mirena had me spotting & bleeding every day for 9 months.
Pop had me bleeding constantly, often heavily, for the 5 months I was on it so, despite ferrous fumerate, I was also anaemic. I was also peri but that was the least of my issues.

I begged them for a hysterectomy in the end. Recovery was actually great. I’d had a lap for diagnosis and my treatment and pain then was far worse tbh.

Hysterectomy and HRT has been life changing. Do ask more questions.

I had it at 45.

Thanks so much for your speedy replies. I've been taking supplements for over a year. They help a tiny bit but not much.

@OnlyonemoresleeptilChristmas how long were you in hospital for? What type of surgery was it? And how was your recovery?

I was in for 2 nights -I would have happily gone home after one- it was a laparoscopic procedure and I had everything removed.
Gynae told me that if there was even a tiny bit of tissue remaining attached to the cervix then I could still bleed and that, if I kept ovaries, I could still experience pain. I do wish I had asked more about that tbh but after over a decade of suffering I was just desperate so had the lot removed.

Recovery was honestly fine and was actually a lot quicker than I expected. I’m not going to lie, there is pan initially, but it does pass remarkably quickly. After a couple of days at home I was only taking occasional paracetamol rather than cocodamol, by the end of week 1 I wasn’t even taking paracetamol. The occasional over stretch made me Yelp but I was just more careful next time. I was cooking dinner after a couple of days at home! I was very tired, that does take time to go, but I was back at work after 6 weeks as planned.

@OnlyonemoresleeptilChristmas that's helpful detail. Thank you.

Definitely interested in hearing others' thoughts and experiences too.

*@JamieFrasersBigSwingingKilt * I'm a bit older than you (52) but also spent many many years with horribly heavy periods and cramps. despite many scans, no reason was found and I was told it was just me. I started using a mooncup and my periods became almost instantly less painful. However I wasn't using contraception (now exH had the snip) but due to a new partner post divorce decided to try a Mirena. Well I wish I'd had it twenty years before!! Although there was a palaver getting it in (polyps and a backward tilting uterus) the insertion wasn't painful at all, and my periods are now every 28 days and so much lighter. I was expecting all sorts of problems with it but genuinely never had any issues! Its coming up for 5 years since I had it put in but I was told it should see me through menopause (if the bugger ever arrives!)

I don't have endometriosis but have struggled with very heavy, painful periods for years. I got a mirena fitted in October. I'm also using estrogen patches. It's been great to be honest. Insertion was painful but pain subsided quickly. I had one period afterwards which was pretty light. The odd bit of spotting since but that doesn't really count when you're used to flooding for 7 days!
Peri symptoms are much improved. All in all, I'm very happy and wish I'd done it years ago.

Everyone's different but here's my personal experience - I have had a mirena for 10+ years and no periods and no endo pain at all for most of that time. Spotting daily for a few months with the first coil but even that was better than the flooding I had before. I think I'd have eventually had a hysterectomy if the mirena didn't exist.

I’ve had my coil in for 4 months and wish I could get the bastard out (wires have gone up inside) but I’ve got to wait until end of `February for my initial appointment.
I’ve had spotting or bleeding almost every day since it’s been in.
Everyone I spoke to beforehand said the coil was brilliant. I disagree.

@GoodnightGrandma

I’ve had my coil in for 4 months and wish I could get the bastard out (wires have gone up inside) but I’ve got to wait until end of `February for my initial appointment. I’ve had spotting or bleeding almost every day since it’s been in. Everyone I spoke to beforehand said the coil was brilliant. I disagree.

Oh no! It's experiences like yours that are so off putting. I'm sorry it's not working for you.

@JamieFrasersBigSwingingKilt

I was diagnosed unexpectedly with endo and ovarian cysts and fibroids aged 43. Some sharp pains but generally because one ovary is much lower (below my hip?!!) and mainly awful migraines with nausea and aura that no painkiller will shift. So bad it is affecting my bruxism and sinuses. I really thought it was to do with my chocolate bar the other night.

I was told bluntly that ''this will probably end in you back here having the whole lot whipped out'' I was stunned. The blood flow was horrific each month but really was not keen either on hysterectomy or Mirena.

In the end I agreed for the mini pill. Game changer.

• No more bleeding at all!

• No need for coil or hysterectomy.

• No more house bound periods or iron tablets or dizzy spells due to 'half a pint a day' for 9 days blood loss and huge clots.

• Ovarian cyst had reduced in size

• My womb lining has thinned down nicely so they are no longer concerned.

Just the migraines and fibroids to tackle.

There is a third way that can be successful: the progesterone only/mini pill. Which is similar to the Mirena coil synthetic progesterone hormone.

Wish I had mini pill years ago (instead of the combined pill which i think did not help matters)

Good luck!

I've had endo since teenage years, diagnosed in twenties and now 47. Have had Mirena for 10 years as I struggled with all other forms of contraception/hormone treatments. Upsides are that I've had almost no endo symptoms since having it and there's no remembering pills etc. No side effects long term either. Downside for me has been no pattern to bleeding - first mirena caused repeated long episodes of light bleeding. Second one has been better, and latterly almost no bleeding at all - just spotting on and off.

I was worried about taking HRT too, with my history of endo, but my symptoms were severe enough that I thought it was worth trying so have had the patch for past 3/4 months, increasing doseage once from 25-50. Also taking vaginal pessary twice a week.

Around the time the dosage was increased I started getting what felt like endo pains, but stuck with it and it seems to have calmed down. It's brought a regular period back though, and some spotting also.

Hope that helps a little...

I got the Kyleena recently (lower dose of levonorgestrel than Mirena) for really heavy and increasingly frequent periods. The procedure itself was a breeze. The first 2 weeks afterwards were awful. I had very painful cramps, weird pains & generally felt I had made a mistake. I was on the brink of going back to have it taken out. Then, amazingly everything settled down completely & it has been completely perfect since. I had one sort of period (barely anything) and the small amount of spotting otherwise has disappeared.

Thank you for sharing your experiences. This is so hard! I wish there was just one easy option.

For me it was a complete roll of the dice (I never would have contemplated a coil preciously) but I knew I had to try something because my periods were getting unbearable and my iron levels were depleted.
I hope you find the right thing for you!

I'm also on the Mirena, which sorted my heavy periods and PMS out and now HRT.

All good for me, lifechanging in a good way.

I've said this a few times but I was told results with the coil are individual to the woman and no-one can predict how it'll be. The sexual health GP said they'd take it out if it didn't suit but it has.

I didn't realise how much it improved my brain fog until the last one overran by many months, due to covid. Getting a new one was like my brain getting rebooted. I'd assumed it would be the estrogen that would help but for me, the coil is also helpful.

I know this is an old thread, but there is some misinformation on it...

It's not proven that estrogen feeds endo. That is just one theory. We don't really know much about endo at all. But even if you believe that estrogen feeds endo, think about this:

Women have estrogen naturally all their pre-menopausal lives (if they have ovaries) - even if they have endo. When you enter the menopause that natural estrogen stops, so you need to replace it. You are not adding anything in that you didn't have before, you are replacing what you previously had.

If you have been able to control endo symptoms with the estrogen your body produces pre-menopause, replacing your lost estrogen now is not going to cause problems.

One commonly prescribed first-line treatment for endo, is the combined pill. Which contains... estrogen. And a much higher dose of it than HRT, and a synthetic version of it (not body identical). If all these doctors are horrified about the idea of prescribing HRT to women with endo because HRT contains estrogen, why are they more than happy to prescribe the combined pill? (Which by the way is often v effective in controlling symptoms.)

Next: The combined pill can't be given to people with migraine WITH AURA. If you get migraine without aura, you can have the combined pill. Many GPs seem not to get this (my own included). Confront them with it and make them look it up.

I have endo (had a lap in 2013) which has been managed by Cerazette POP for about 9 years now. As in - for me, the POPs keep the endo away. Before my lap, I was on nothing for 5 years - which is when the endo hit and got progressively worse. And before that, I was on levonorgestrel (Norgeston) POP for 8 years and great on that too. Had no symptoms and didn't know I had endo.

I'm now 44 and peri-menopausal and want to start HRT because I need estrogen. I'm trying to arrange an appointment with a menopause clinic because my own GP is completely clueless and with the endo situation, I want to see someone who specialises in this whole area.

However, I also think that I don't really trust anyone with all this because there is so much BS out there and misinformation - so I do my own research deeply. I highly recommend the book 'Estrogen Matters' on Amazon.

And also there is an episode about "endo and HRT" on the Dr Louise Newson menopause podcast (which is excellent BTW) - she interviews endo specialist and excision surgeon Chris Mann, who also says that women with endo can take HRT in the vast majority of cases, without it causing endo to return. But that usually it is best to take it continuously (ie no break to bleed) even if you're peri-menopausal. It's episode 88 of the podcast, if you want to listen :)

@everythingyouneedtoknow

That’s really informative thank you. I’m 42. Been diagnosed as having endo and adeno since 2015. Am now peri, hot flushes, memory, exhaustion and insomnia being the main symptoms. I’ve always struggled massively with hormone treatment - the coil didn’t work for me at all. I had zoladex injections and they were brutal but stopped all of the endo pain and bleeding - but the Livial ‘HRT’ they gave me was awful. I am presuming because it is not body identical?!

At the moment I feel massively trapped in a cycle with not knowing which is the way out. My period has not arrived this month at all. I have registered to have an appointment with a private menopause specialist but it seems there is a long wait!

@JamieFrasersBigSwingingKilt how did you get on?

@SoftPebbles I know, tell me about the wait!! I've tried to get in at 3 different places now. I think the earliest will be mid-April. It's really insane that we have to do this.

I would just try another GP at my own practice, but especially because of my endo history, I want to see someone who knows HRT and the many different types and options for various different scenarios.

I found another GP practice with a GP who specialises in HRT and is training to be a menopause specialist, but they weren't taking on new clients.

I had an appointment in 2 weeks time at a specialist clinic, then that doctor herself needed surgery and now isn't seeing patients again until April - arg!

And I'm on the waiting list for a video consult with Newson Health but that probably won be till July(!!) because at the moment it says a 6-8 week wait to be OFFERED an appointment and then 2-3 months wait for the actual appointment!!!!!

I reckon you probably need to tinker with your HRT to find something that suits you better - brand, and dosage. So I hope you can get an appointment somewhere. It's a bit insane really, that 51% of the population will go through this - 90% of them with symptoms - and 0% of GPs get decent menopause training unless they pursue it as a special interest.

I grew up thinking the world was a safe place and healthcare systems are there for you, and there are almost always treatments that make you better... and now the world just doesn't feel like that anymore. There is a shortage on some HRT products, it is impossible to get an appointment, and no one seems to care. Still, every here and there you find an amazing doctor so it's worth continuing to look and research.

I am similar with the Newson clinic. I’ve recently contacted my private medical health care re hysterectomy. Who knows which way that will go.

It’s not right is it that we can’t seem to get help for something that should be so simple and let’s face it unavoidable. I actually sobbed yesterday on the phone to the Doctors. I mean how ridiculous but clearly it had been building up.

Not ridiculous at all. I consider myself a pretty strong person and not many people see me cry, and I just start crying about all this at the doctor's sometimes - I think we are just holding onto all this most of the time, with no one to share the emotional burden, so when we start to talk about it, it just is hard to hold back...

@everythingyouneedtoknow thank you. I listened to the Louise Newson endo/menopause podcast today. Quite informative.

Ah that's really good to hear. If Chris Mann says people with endo can take HRT, then that's as good as anything to me, LOL!

I'm a bit addicted to her podcast to be honest, although sometimes I feel like I now know more than most doctors about HRT, ha ha ha ha ha....

This is all so helpful. And thanks, especially, to @everythingyouneedtoknow for the extra info. I do have aura symptoms during my migraines. In fact, they are my main symptom as I experience headache discomfort but not the amount one might generally associate with migraines.

In short, I'm undecided and have pursued no action at all whilst mulling my options. This was working well, weirdly, as my peri symptoms and painful periods all seemed to fade to become very manageable. Until I had my most recent period where even my Tens machine didn't touch the pain. So, this resurrection of the thread, my pain and my dilemma seems more pressing. Any further observations gratefully received!