New to Endometriosis UK community forum, need some advice!

I didn't know that there was a charity or support for endometriosis, i was diagnosed with it when i was 24 years old but probably suffered with it before then. I never knew about if I should have had any follow up appointments etc. Then November last year when it got too much to bear (43 years old). I rang my GP and said that if they didn't do something about it I was going to take matters into my own hands. I saw a gynaecologist over 10 years ago, who didn't bother to read my notes and only did the usual ultrasound, and only saw Fibroids but didn't investigate further than that. Despite still being in pain and my periods were so irregular, painful and very heavy. Since having the only child I could have when I was 26 years old I was told it was all down to being borderline Hypothyroid. (I am Hypothyroid now and on 100mcg Thyroxine now, since 2006). On the 29th November last year, when I finally got to see a consultant, I got told that my pelvic area was a real mess and they couldn't even get into the right side of me to see my falopian tube and ovary. The only option for me now is to have a hysterectomy, but she didn't say if they would also take out all the adhesions. I have not been given any information on anything to do with all this and don't know what to do. Just by chance when I was looking up about endometriosis UK and this forum.

I don't think I've really understood what I was told when I was 24, and information wasn't really available then. Now that it as the drastic measures I am starting to feel like I was never taken seriously. It also makes sense that it got worse about 5/6 years ago i tried to see if I could get pregnant again at the time my child was about 9/10 years old. I feel i have been robbed of that opportunity to have at least one more but now that has gone and soon it will be taken away altogether soon. I don't think my family and friends understand and don't know who to turn to for advice or what will happen.

I am finding it really hard at the moment as my sister is about to have her second child any day and a friend of mine has just found out she is pregnant, I have another friend who is due next month and a friend had a baby a few months ago. I can't walk past boots with out going in and walking around the baby section, or baby and child clothing in clothe shops. Then I come and cry myself to sleep on the nights i've been shopping. I feel so alone and lost with all this, even though I've had this for many years. I assume i'm not the only one who has felt like this and would like to some advice please!!

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  • Hi im sorry you feel as bad as you do and you have my sympathy i too have been trying to conceive and i sometimes feel ill with the thought if never having a child of my own. Its a horrible disease that is so misunderstood its frightening. As for support if you type in endometriosis uk into a search there is a website that you can join and they have a 25 hr helpline for people that need to chat x hope that helps and you can try to feel better soon xxx

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