Perimenopause, endometriosis and Adenomyosis - I don't know what to do for the best.

[ApriltoNovember]

Decades of period issues and very heavy bleeding lead me to chose a uterine ablation to stop the heavy bleeding. That was almost 4 years ago and 6 months post op I was experiencing so much pain each period (ablation doesn't stop the cycle).

An MRI discovered deep endometriosis and diffuse adenomyosis. I 50 when this was discovered and almost 53 now. I am now under a specialist endometriosis gynae at my local hospital and on a waiting list for a hysterectomy and excision surgery.

The truth is that I'm not mentally fit for such a big surgery, I've been under a hug amount of stress over the last 6 years whilst caring for my mum who is now in advanced dementia. I have ADHD and perimenopause is making my mental health a million times worse. If I have surgery right now I'll have a breakdown I'm sure of it.

I get the awful pain around a week before my period and around 5 days during the period (literally no bleeding due to the ablation) and for a few days mid cycle/ovulation time. The rest of the time is fine apart from daily IBS/digestive issues which is a whole other story.

Tbh, at my age I was hoping by now to have gone in to full menopause but I still seem to be having regular cycles which is so frustrating.

If my endo had been picked up before it was I would have had a mirena but it's too late now due to the ablation scarring. The procedure has also worsened the adenomyosis. It was never mentioned but I've gone back on all my us scans and it looks as though a small amount of adeno was detected in 2020. From what I read online ablations are not suitable for adenomyosis sufferers.

I really need to stop my cycle and I'm sure it will help with the pain then when I go into menopause I am hoping everything may ease off.

But I'm finding it hard to get correct advice for my issues. I'd like to try hrt but my gynae says it's not a area he is interested in, my GP has only basic knowledge of HRT for non complicated patients and I can't afford to go privately so kind of stuck knowing where to go for advice.

I was wondering if the mini pill could stop my cycle and then I can use oestrogel to form a HRT package?

I'm worried the hormones may exacerbate my issues and I also worry because my mum also has breast cancer and I don't know what that means to my risk factor (although I am a non smoker, non drinker and slim).

Has anyone been in a similar position with endometriosis and/or adenomyosis?

You've got a lot to cope with.

However, I think much depends on how they would do the surgery.
I have a friend who had a hysterectomy not long ago, it was done vaginally and she was only in hospital overnight. Surgery has changed a lot and although you need to recover, it might not be so big an op. How much endo is there elsewhere?

You can take the mini pill as part of hrt but it has to be 3 x the daily dose to be in the right ratio for the estrogen.

I know you say you can't afford a private appt, but is there any way you could stretch to one appt for advice and then the consultant would write to your GP with recommendations?

Hi Op. I had a full hysterectomy including both ovaries about 3 years ago. I had stage 4 endo and adeno. And it was life changing. The pain I had loved with my whole life from the age of 11 went away. I got out of hospital the day after the surgery. The day after the op I was managing on paracetamol...stopped all meds about four days post op. Was up for gentle walks the next day. Because I went into a surgical menopause I started on HRT the day after the op and I'm still on it and feel fine. I'm not trying to talk you into surgery. It is an incredibly important decision.

Because you have endometriosis you will need to continue to take Progesterone alongside any oestrogen. The mini pill won't offer enough protection. You REALLY need to speak to a specialist. My GP practice has an amazing nurse specialist who deals with HRT and hormone stuff. If not ask your gynae if there is a nurse specialist within the gynae team who can talk to you about HRT options pre and post op.

The MRI stated deep endometriosis and diffuse adenomyosis.

I'm really not in a good place mentally and have a huge fear of hospitals. We've just had a horrendous week with my mum in hospital (same hospital) and the care there is not fit for purpose frankly. I hate the place and know that I'm just not in the right frame if mind for any kind of surgery. I've been in counselling for a while but it's not helping much.

My gynae is planning for it to be a laparoscopic/keyhole surgery hysterectomy.

I could afford a one off private consultation but I don't have a lot of money to throw at it atm and I would be concerned about finding the right doctor who could give me the best advice for my issues.

I'm not mentally fit for the operation sadly and just can not see me being able to go through with it this year at least so am really hoping I may find someone who can help with an alternative. I did ask my gynae but he wasn't interested.

I need to see if I can find someone who can help even if it's not local and via a remote consultation.

Candlestickinthediningroom
I was hoping the mini pill would shut down my cycle so that I would possibly get some respite from the pain I only really experience during my period. If I don't have a period I don't have the pain. I am probably lining in false hope but I thought that would help me limp along until menopause finally comes.

Earlier in my endo journey I was prescribed Prostap (a GnRH analogue) for a year which stopped my cycle completely. I did that year without HRT and it was difficult. When I was offered it again years later I was told I could get Add Back HRT. I wonder if that's an option for you? Have you been offered that?

I take the mini pill to manage endo, as you say to try to mitigate symptoms and limp along until menopause if I can. For many it doesn’t fully stop your cycles so need to be aware of that, it is very sensitive to being exact in timing of taking it daily. Most of the time it works well enough for me but I get odd months where it doesn’t. I had a very bad time of it with endo for a long time, then invasive surgery followed by going on the mini pill, I don’t know how well it would have worked without having had that surgery but I am now 8 years on and the limping tactic is working well enough

I've never been offered that, thank you. I will ask my GP.

@ApriltoNovember I can help direct you if you want to consider a consultation.
The British Menopause Society website is a good place to start but I'm happy to PM you (I've had private meno care for years but my own gynae is not taking on new patients.)

That's good to know. Before the ablation I never experienced any period pain only some pain during ovulation. My periods were always super heavy but never painful which is why I never suspected endo and neither did my gynae even though my sister has it (although she always had pain).

The pain is awful just before and during my period since the ablation and if I can ease that I feel that I may be ok until menopause (wishful thinking maybe?).

Because you have endometriosis you will need to continue to take Progesterone alongside any oestrogen. The mini pill won't offer enough protection.

@Candlestickinthediningroom It will in a higher dose.
The British Menopause Society lists Noriday as an option at 3 tablets a day.
This is online in their guidance on progestogens in HRT.)

Just make sure whoever you see is not just a Meno specialist but an Endo Meno specialist. Unfortunately for us HRT is way more complicated.

Thank you, that's really helpful.

On the NHS you are entitled to a second opinion. Could you research a good doctor and go and see them?

This is what I have been really struggling with. I can find endo gynaes like my own but has no interest in menopause and hrt or menopause specialists who don't have much expertise in both endo/menopause. I have found it so very difficult to find much info regarding menopause and endometriosis. All endo info seems geared up towards younger women.

It really depends what you want most.
I think you need to decide if you want to have a hysterectomy first.
There is no point talking to a private endo specialist by video if you aren't able to go ahead with them (or anyone) for surgery. You could get their opinion on whether you need surgery but from what you have said, that's already been suggested and you're not able to cope with it emotionally.

Where does that leave you?

It's possible to use HRT with endo. You only need to keep using progesterone in order to control the possible stimulation of endo by using estrogen.
This is relatively straightforward- some women are fine on just normal HRT (estrogen +progesterone daily) while others will get more control from having a Mirena coil and daily progesterone because the coil only works in the womb.

It would be a waste of time if I pointed you in the direction of an endo specialist as they would be suggesting surgery.

If you want to discuss HRT in the context of endo, that's different and there are many good drs out there who could help.

It also - to be honest- depends on your funds for this.
In reality it would be one video/ face to face appt, followed by perhaps 3 months of a trial of HRT, then another appt to see ow you were.
If that HRT worked they would recommend it to your GP to keep going with it.

Roughly, the costs are around £300 for a first appt and less - around £200 - £250 for the follow up.

Most good gynaecologists who offer HRT will know how to manage endo when using HRT.

There is also a national charity for women with endo.

What route do you want to go down?

You might find something helpful here which is HRT after induced menopause. It's the British Menopause Guidance.

thebms.org.uk/wp-content/uploads/2022/12/10-BMS-TfC-Induced-Menopause-in-women-with-endometriosis-NOV2022-A.pdf

I don't want to rule out a hysterectomy completely it's just atm after 6 years of caring for my mum with dementia I am broken mentally and am not in the right place emotionally to go through such surgery. I am hoping in a year or two I may be in a better place and I feel stopping this monthly pain without a hospital admission and surgery may be the key to feeling mentally better.

After discovering the wait for a routine hysterectomy at our local hospital was around 18 months I did consult with a private gynae specialist (who is also at the NHS hospital but is so popular he has the longest waiting list) but his private fees for surgery were very much out of my budget so if I ever have the surgery it will have to be via the NHS (unless I win the lottery in the meantime!).

What I would like in the here and now is to stop having periods because this is when I am experiencing such pain. My uterus is contacting too much, there is no blood to come out and combined with the probably rigidity of my adenomyosis riddled uterus, the inflammation from the endo and probable prostaglandins it's a recipe for pain and discomfort. If I can stop having monthly 'periods' then I hope it would ease this pain?

If the treatment incorporates some kind of HRT and can ease my peri symptoms that would of course be a much appreciated bonus.

I can pay several hundred for a consultation but just can not stretch to thousands for any other treatment.

When there is a lot of endometriosis adhesions and adeno private surgeons are very reluctant to do hysterectomies. My consultant works privately as well as with the NHS and when I asked her if I could go privately, I was told "Absolutely not!". They really have to have other specialist consultants on hand because an endo/adeno hysterectomy can very quickly become a bowel or ureter surgery. Also it is a major complicated surgery and most private hospitals don't have they emergency medicine specialists or intensive care departments that some more complicated surgeries might end up needing.

The use of HRT with endo is quite well-established.

I will send you some links by PM.

I’m 41 and had a huge excision surgery last May for endo, around 8.5hrs. Recovery was about 3-4 weeks
I’m on HRT now as peri kicked in. So I have a mirena to stop my periods, then use oestrogen gel and take progesterone orally. No pain, no periods
stage 4 endo and adenomyosis

Can you ask your gynae for one of the more modern endometriosis drugs - Dienogest (a second line POP) or Ryeqo (combined therapy). Both are designed to reduce pain and bleeding.

If surgery is a long wait there’s no harm in going on the list, even if you don’t want to do it presently.

Am I the only one to be shocked you said a gynae has no interest in HRT?

Surely a lot of their patients are in peri/meno and might benefit?

I would ask your GP to find a better one.

It's not that unusual.
Consultants have their own specialisms.
Some prefer to do surgery, others hormonal /meno stuff, fertility, others endo etc. Some can do all, but they tend to be few and far between.

It’s not unusual. Minimal access surgery/endometriosis is a distinct special
interest & consultants in tertiary NHS centres will really only see women who need help with endometriosis and have little to do with menopause treatments. Likewise for other sub specialities like infertility.