Support

[Emily_horley]

Hi lovelies,

I’m new to this and decided to give it a go, in terms of support. I am 21 and was diagnosed with endometriosis at 20 after struggling with symptoms since I was 13. Im struggling both mentally and physically with my endometriosis at the moment. I have been told by my consultant that new symptoms I am experiencing are psychological. I am truly devastated and would do anything to feel just a little bit better.

I had a laparoscopy last year in March and my bowel was separated from my womb, some endometriosis removed and an endometrioma was removed and cysts quatrized. Since then I take tramadol, gabapentin and codeine regularly. I tried the coil, however this was removed a few months ago due to continuous bleeding and it was not helping my symptoms. Since then they started me on pro Vera 30mg every day, however this caused the same thing and I began experiencing migraines.

I now experience nausea daily, during ovulation and my period. My right side becomes swollen and I get an intense pain high up around my rib area. Occasionally this pain worsens and when I breathe in, it feels as though I am being stabbed and is painful to breathe. I honestly do not know what to do as I have not had good experiences with doctors and because of my age I feel as though they do not take me seriously. Any advise is most welcome and I appreciate it, thank you.

[Marie15]

Hi I'm sorry to hear what your going through. I'm 22 and still battle with doctors. The best advice I can give is don't let them talk your symptoms down. We know when something isn't right. I was misdiagnosed at 16 with a 12 litre cyst which could have killed me. In the end I told them to prove to me I was wrong with a scan. Since then I have continued to challenge doctors when they minimise my symptoms. Just stay focused and clear. It may help to write it all down before you go to see anyone but you need to challenge them on this.

Hope they can help you soon xx

[Emily_horley in reply to Marie15]

Thank you for your reply and support, much appreciated! I’m definitely going to write it down, it’s so easy to forget something especially when your emotional !

Take care and best wishes !

Thank you again xx

[Emilyt94]

So sorry to hear you’re not having a good time. I’m in a similar boat to you. I’m 24 and have had problems with my periods for 10 years and I only got diagnosed with stage 4 endometriosis last month. In that time I’ve been referred to gynaecologists at least 4 times to be told it’s normal to have painful periods.. I’ve had ultra sounds and nothing’s wrong.. take the pill and live with it basically. It even got so bad I ended up in A&E and the gyneocolgosit still refused to see me then. I begged my gp to refer me yet again and when I saw this gynaecologist I promised myself I wouldn’t leave without getting a referral for a laparoscopy to see if I had endometriosis - I’d never even heard of this disease, I’d just googled my symptoms. I think the key is to not give up, you are the only person who knows your body and knows when something’s not right and needs to be looked into further. Be strong and demand to be taken seriously. I know it’s such a horrible disease and I struggle with it every day - just know there are tonnes of other people going through the same thing and we are all here to support each other. Xx

[Emily_horley in reply to Emilyt94]

Thank you for taking the time to reply I really appreciate it! I’m sorry to hear you’ve had a crappy time too 😩 thank you for the advise I’m definitely going to put my foot down.

Take care xx