Fibroids, HRT, coil, endometriosis, surgery - so much stuff! Please advise.

[BeretInParis]

I am 48 and have endometriosis and adenomyosis. I also have the Mirena coil and am taking HRT (estrogen, progesterone and testosterone). For the last few months I have had virtually never-ending periods and now the flow is very heavy as well. Additionally, I am trying to manage a lot of peri symptoms through HRT, supplements, regular gym visits, healthy eating and acupuncture to be in good shape and help with peri-related anxiety, brain fog, etc. In short, I am not sitting back but am actively trying to lead a healthy lifestyle to manage the broad range of shit symptoms I'm experiencing.

I had an internal ultrasound that diagnosed a submucosal fibroid of c6-7cm in diameter. The GP will refer me to a gynaecologist who will see my scan (I haven't seen it yet myself). I'm lucky enough to have private healthcare through my work. The GP's assumption is that I will have a hysteroscopy to remove the fibroid and that will sort the issues of constant bleeding, etc.

I wanted to be armed with info before I have the consultation. Is this really the best approach? Should I push for a hysterectomy (with ovaries) to put me into proper menopause and make ongoing HRT more certain (rather than fluctuating levels)? I'd welcome any advice on my options, the procedures (especially recovery), etc. please. I'm so fed up with the 4 years' worth of peri symptoms I've endured with no end in sight and wonder if the removal of my uterus and ovaries would be a good thing - or not. Plus I'm scared of surgery in any case - and possible recovery. Thank you.

Most surgeons do not do hysterectomies now unless they are absolutely essential.

I am not an expert, but all I'm doing is sharing info that may be of use. I have adeno, and yes, it makes my HRT bleed a little heavier. My understanding is that is to be expected.

Again, this is not an 'expert' opinion, but a fibroid of 6cms would be considered small. Ones that are removed can be as big as an orange or bigger.

You would be best to leave your ovaries even if you have your uterus removed. They do have a purpose post meno.
If your HRT is correct now your hormones should not be fluctuating too much on it.

As you have private insurance, have you thought about choosing your own consultant who is an expert in this?

I have private insurance and took a long time to research who I wanted to see, many years ago, and they are brilliant.

Bear in mind that there is a huge difference in gynaecologists. Not all are surgeons and they also have different areas of expertise.

Thank you @JinglingSpringbells. I appreciate your speedy and thoughtful advice based on your experience.

Am already looking into the right specialist so feel like I'm heading in the right direction there. The question I've asked my private doctor (who's specialises in functional and integrative medicine, with a particular interest in hormones, etc.) is whether I should be considering as little surgery as possible or a full hysterectomy to sort out all the peri issues at the same time? Or is there something in between? (Surgery scares me but if I've got to have it anyway, is it better to just take everything out and will that have the effect of making peri/menopause easier?) That to me is the goal - dealing with all these bloomin' awful, seemingly never ending symptoms.

I've just had a hysterectomy for severe bleeding caused by a fibroid and I'm probably post menopause and on HRT. My fibroid wasn't huge but couldn't be removed via hysteroscopy. I'd say try to get the thing removed first as that's likely the problem. The rest of it you can tweak.

Lots of issues going on!

The 'trend' is not to do major surgery unless it's hugely unbearable.

You need to take advice from a specialist and maybe more than one as they all tend to have different opinions. And different levels of expertise.

One question is how long you intend to stay on HRT.
All the bleeding will stop once you stop using it.

Even if you remove the fibroid you may get heavy bleeding from the adeno.

Sorry to hear this, not easy to deal with.

I had a fibroid and endo. The fibroid caused such heavy bleeding that I was hospitalised for blood transfusions.

I had a hysterectomy at 40 to resolve everything but kept ovaries.
Am a few years down the line and I am so glad I had a total solution and ended the problem completely.

I haven’t gone into menopause yet so can’t speak on that part.

Happy to answer any questions.

I had a hysteroscopy which discovered a large fibroid. I had a coil fitted at the same time and so far this has solved the bleeding.

If it doesn't solve it the next step is a hysterectomy.

Thank you @margegunderson , @JinglingSpringbells , @OpalSpirit and @Movinghouseatlast . All helpful observations.

I have the mirena coil. It's been in for c3 years and has made loads of difference to the endo pain but I'm still bleeding a lot.

I know there was a comment about tweaking the HRT but I've been tweaking it for 3 years already and it's still not wholly right. I'm so improved on it though that I have no intention of coming off it. I'm terrified of reverting to the dark, joyless place I was before where I completely lost myself. It was a very hard place to be.

I genuinely don't think you will get any helpful answers here.
This is a conversation you need with a surgeon who is highly experienced in working with women with endo/ adeno/fibroids.
Such surgeons exist but many are in London in the major hospitals (but who also work privately.)

What they would do is talk you through the pros and cons of various options.

For example, hysterectomy is sometimes a last resort for women who've had children and have any form of prolapse as it can make future prolapse more likely (and hard to fix.)

I can't see that anything would fix the adeno other than a hysterectomy as it's an overgrowth of lining into muscle of the uterus. It's not like a fibroid that can be removed on its own.

A consultant would have all your scans and be able to tell you how much adeno was contributing, how much was due to the fibroid, etc.

Wait and see what they say.

You're very wise @JinglingSpringbells. My dr has recommended a couple of suitable surgeons today - and suggested I aim for as light an intervention as possible. Will follow up on Monday but feel like I'm taking constructive steps now. Have a good weekend.

Can I ask a question from this post? The bleeding whilst on HRT - does this mean you will always get a monthly bleed despite maybe going through menopause and effectively periods have gone?

I am going through something similar to you OP. Same age and same symptoms. I had a hysteroscopy last week and removal of polyp. I have a follow up with Gynea in 4 weeks for results on biopsy. But the long of the short of it is i bleed more than I don’t and I’m fed up with it. It affects everything all the time. I would imagine they will be recommending a hysterectomy for me, unless there is something else shown up from the hysteoscopy. I have come off HRT gel for now. Still got the mirena coil.

it’s tough and a long old lonely road x

Can I ask a question from this post? The bleeding whilst on HRT - does this mean you will always get a monthly bleed despite maybe going through menopause and effectively periods have gone?

I'm not completely sure what you're asking here but here goes....

if you are using sequential HRT (progesterone on a cycle) then yes you will have a withdrawal bleed however long you stay on that sort. This is to protect the womb lining, otherwise it will over-grow.

If you don't want a monthly bleed (it's not a period) then you need to switch to combined continuous HRT with progesterone every day, but a lower dose. This is suitable once your natural periods have stopped for at least a year or over 54.

Thank you, that is helpful. I had been told the HRT (gel) could be causing my bleeding, whilst also on the mirena. I’ll await my next apt.

That's quite odd. The Mirena should provide enough endometrial protection so that you don't bleed at all. If you are still in peri and were having natural periods though, not all women find the Mirena controls them 100%.

Estrogen + a Mirena coil is a classic and well established form of HRT.

For most women they don't bleed on that combination, but some may have slight bleeding.

That doesn't mean anything is 'wrong'.

Thank you and sorry for derailing the OP although I think it’s probably all relevant.

Estrogen and coil for me equals bleeding (although hard to say now whether it’s more or less than before because a few years have passed!).

I just want to feel ‘ok’ and not bleed 75% of the time!

No need to apologise about possible derailment. I, too, am on estrogen and have the Mirena coil and bleed about 75% of the time. I have been taking additional progesterone for the last 2-3 months but haven't seen much of a shift. That was why I was mentally preparing myself for a hysterectomy/wondering if this was the best solution. It all feels very nuanced and 'tinkering' to get the right dosages takes ages. I'm on holiday at the moment and feel very self-conscious in swimwear when I might flood at any time. Sigh.