Any advice?: Hey, I've joined this evening... - Endometriosis UK

Endometriosis UK

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Any advice?

alexandraxsh profile image
5 Replies

Hey,

I've joined this evening in the hope I might find women who actually understand how I feel/what I'm going through, and from some of the posts I've read, I'm in the right place.

I'm 23 and I've been being treated for endometriosis for around the last 3 years, but it took around 4/5 years of painful episodes prior to that before they began treating me by artificially putting me in the menopause through injections every 4 weeks.

I feel like this is such a huge part of my life because it affects so many aspects of it, and my friends and family offer advice/support they best they can, but I don't think they understand the impact it has to me physically and mentally.

Not only for the fear of pain or another episode ending in hospital or operation etc, or even being in the menopause, but also my worries for the long term and the fact the medication I'm on should only be used for around 18months.

I feel silly saying it but I get stressed or upset when I think about it and I worry that people think I'm overreacting (especially doctors or medical professionals etc).

If anyone can offer me any advice on how they've dealt with their diagnosis or any tips on how to make being in the menopause (even though it's artificial, I still have all the usual associated symptoms like hot flushes and mood swings etc) bearable, it would be so appreciated.

Thank you x

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alexandraxsh profile image
alexandraxsh
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5 Replies
alexandraxsh profile image
alexandraxsh

I have had to have bone scans the last few years to check this as it can cause brittle bones but this seems to be fine so far, just need regular scans to check.

They've said they'll keep me on these as it's the only thing they've tried which works to date so the negatives outweigh the positives.

Im also worried because there's also been an investigation into the HRT they're giving me as prolonged use can lead to increased risk of breast cancer and I've been using them for around 3/4 years.

TAnd71 profile image
TAnd71

What I recognise is the hopelessness . When I've had pain or I'm waiting for a diagnose I worry that they wouldn't find anything . Then they do and it's a relief . It feels like I'm moaning a lot. I worry that those around me will get sick of hearing me complain (which I keep to a minimum , isolate instead) and that they will leave me. Abandon me because I'm too much of a bother. I try very hard with meditation and positive affirmations to conquer these worries. I find that my lack of sleep due to pain and the sheer draining affect of pain makes me so sensitive and my head tells me things that aren't true.

I am actually in the menopause and in the last month have been trying out a medication that helps with the sweats and anxiety. It works really well. It's called clonidine . I do think though that these injections for longer than the recommended time is super dangerous to your bones . . .

I learn day by day to accept my pain as part of who I am because there is not too much to be done. I'm on a waiting list for a endometriosis clinic in the netherlands where I live and I have deep tissue massage. . . Use maca powder and avoid caffeine and alcohol . . For the rest I just need to live. . . So whether or not sugar is guna make me have a bad day, sometimes eating some Ben and Jerry's and watching Netflix is some comfort .

You are not alone, you're in the right place

alexandraxsh profile image
alexandraxsh in reply to TAnd71

Hi TAnd71,

This is exactly it!! I feel so alone sometimes, like literally no-one else understands the pain or how I feel, worrying that my friends/family will tire of me talking about how I feel or my horrendous mood swings every few weeks.

I completely relate to the isolation you're putting yourself through, I feel like it's my saviour and my tormentor all of the time.

I'm on HRT so a lot of things you can take aren't compatible but I'll check that out, thank you for the heads up!

Also thanks for the tips about lifestyle etc, I drink a lot of caffeine but rarely alcohol, so I might try cutting this down, nicotine doesn't do much for how I feel either!

I appreciate your message and I'm sorry you're going through this too, if you want to message privately if you need to talk then please do :)

TAnd71 profile image
TAnd71 in reply to alexandraxsh

How do you message privately ? ?

alexandraxsh profile image
alexandraxsh in reply to TAnd71

If you go to my profile and then click the 'message' button and pop in my username it'll send to me directly :)

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