At a lose end again😩😩😩: So basically I... - Endometriosis UK

Endometriosis UK

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At a lose end again😩😩😩

Anon247
Anon247

So basically I went to see a Gynaecologist and was told I could have Endo. I was put on a pill which made me worse and I already suffer from depression so it made that much worse too. I’ve been referred to a new one after not being happy with the first one and they now believe I don’t have it.....

When I’m on a period I’m in agony!! I can’t get out of bed some days because the pain in my lower back is unbearable and I’m being physically sick every time too. The pain is there in my stomach for weeks before my period too. I’m run down in the weeks before it and always come down with flu symptoms too.

I don’t know what I expect from posting this but I guess I’m just sick of not having answers and being told to take paracetamol and get on with it.

I’ve been on a few different pills and they’ve all made me really ill so whenever they mention a new one I do get scared and am reluctant to take them.

I’ve only just turned 18 too so it’s really hard for me.

Any advice/help/knowledge would be greatly appreciated x

1 Reply
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I'm so sorry to hear how much you're struggling.

It's just such an awful truth that the majority of women with endo go through these experiences of being not listened to and fobbed off. It's just completely unacceptable. You are not supposed to live your life in this much pain.

I'm afraid that you will have to keep fighting until you are listened to. Everyone on this site has your back, you are not alone in this. There's a wealth of information on here and lots of very experienced people who will be happy to help you. Just keep posting and asking for help.

I'm afraid your age is maybe a factor the Dr's aren't doing much, doctors seem to be very reluctant to do surgery on younger women. Surgery causes scaring internally so they usually want to delay as much as they can. But it's really up to you and if your quality of life is being affected this much, maybe you would rather risk fertility etc?

My advice to you is to get yourself informed as much as you can. There are lots of treatment options, they're are even less of different types of the pill. There are natural approaches too. Read about endo and how its treated will really help you. Read the NICE guidelines on endo (if you Google it, you can access it) this gives you an idea of how you should be managed by the NHS, so you can know if you're not being treated as you should. If you feel you're not being treated correctly, then you can get help from PALS (patient advice and liaison service) every NHS service has one.

Do you have good supports around you? Good family or friends that understand? It's imperishable to try build up your team. If you have someone, try take sometime along to appointments with you, 2 heads are better than one and sometimes it's good to have back up, especially if you're possibly being dismissed for to your age.

Just don't feel hopeless though. There are tonnes of things that might help you, plus you're young and your hormones may settle. They're are things you can do that could help with this (a good nutritious diet, manage your stress levels, meditation, limiting harmful chemicals & toxins and basically just really looking after yourself). Just ask more on this forum if you need any help. Someone will always reach out. Plus there's the helpline.

I hope some of this helps. Xx

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