Menopause/POI and endo, where can I find support?

[pineapple]

I have Stage 4 endo and started HRT 2 months ago as I'm quite far down the line of perimenopause. I'm 40 and I have 2 children aged 4 and 1 (no-one quite knows how my ovaries did it).

I have had awful symptoms for so much of my life I put the extreme fatigue of the past couple of years and about 1,000 other symptoms down to my periods and endo and sleep deprivation. The doc was really shocked as it turns out I am nearly post-menopausal already. No doubt because a surgeon in 2006 removed most of my ovaries without telling me (a later surgeon discovered this) *throws hands up in the air like how why do we get treated so badly so often*. Also I totally appreciate how v fortunate we are to have our daughters.

So I feel like, now I want to find other people going through the menopause early who have endo. My friends just don't really want to talk about menopause and going through it early. I get "at least you've had your kids" and "ooh no periods" when the reality is perimenopausal symptoms have been emotionally and physically soul and life destroying because I didn't know what they were.

I'm on Oestrogel and Utrogestan and my first 2 'periods' have been so heavy when I was told they'd get lighter. Typical endo-er, eh (cue for the past 2 decades: oh the pill/Ponstan/tranexamic acid will solve that bleeding and pain -errrrm nope). I'm now having to take Utrogestan every day so that any potential endo isn't triggered.

(Also if anyone knows anyone going through menopause with young kids and trying to work part-time, I just don't know how to juggle everything. Having been medically infertile for a decade I'm conscious of how difficult it can be if you've experienced menopause and children haven't been part of your journey so just a gentle ask.)

Long post, it's hard to sum up an endo life. Any support suggestions so welcome.

Emma x

[CJR99]

Hi Emma,

Bless you and thinking of you!

I'm not a Mum (would have loved to have been though!) and I'm so pleased you were able to have them. However, that doesn't mean you have to have people assume that makes up for the debilitating issues that comes with both Endo, taking various drugs, early menopause etc....I truly believe a woman however, empathetic can never really understand what we endure until they have walked in the shoes....And you're doing this whilst trying to work and look after little ones! Big respect to you Emma.

I went into surgical menopause at 45...I'm 48 now. Like you my pals (though a couple are older...some younger) basically said much the same...no periods no pain etc etc. Meanwhile I was falling off a cliff!

I'm on Utrogestan too and Oestrogel but, to be honest I have breaks on both ( I had a total hyster in 2017). Defo give it a little time to see if the periods settle down. I really hope they do. I know it's super frustrating when you feel like you're juggling....I had a cracking job at a big football club but, after such significant surgery and the effects of early Menopause I just couldn't handle it. I felt isolated....Emma there are many of us who feel just as you do and my heart goes out to you. You need support and I am certainly here for you if I can help in anyway..

😀😀

I think also Utrogestan, though beneficial can take some time to adapt too. I didn't have HRT for sometime after the big op due to suspected cancer and I've been taking it only for the last 12 months. It's taken some time to adjust.

Not sure I've been much help but, I'm thinking of you and very much here if you need support.

Best wishes,

Clare

[pineapple in reply to CJR99]

You're amazing! Thank you so much, Clare, for your kind and thoughtful response - it really makes a difference to not feel alone with all this.

Your experiences sound incredibly hard and I'm really grateful for your sharing. Adapting our lives to endo can consume so much. How do you stay sane?!

It feels like any treatment out there for menopause has to be so carefully balanced with the endo which is an added stress on top of any symptoms. I've now changed my meds slightly after speaking to a specialist menopause GP (privately ffs) and take 1 Utrogestan tab per day every day without a break to try to mitigate the heavy bleeding, let's see how that goes. I'm thinking the patch might be better as 4+ pumps of Oestrogel is a lot of slathering.

Have DM'd you as well, thanks again for your awesome message 🧡 x