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Hello,

I was diagnosed with Endo in 2012. I have been suffering since 2010 when I decided to come off the contraceptive pill. My Boyfriend (now my husband) decided it was time I call it quits on the pill due to hormone problems. (wanting to kill him at every opportunity (not literally I may add!) So off I came. Then came the complications. My periods were heavier than pre pill, my stomach ached all the time. I went to the Drs numerous of times before actually getting a diagnosis 2 years later!

So, present day, after having 3 laporoscopies, (laps) I am non the wiser to getting "better". After each surgery, they tell me they cannot remove any of the endo due to the extent of it attached to my organs and the fact that I have cysts in the way that they have to drain first which they do but then cannot proceed with the removal of endo. So its still bad! stage 4 with 2 BIG cysts that are growing. They tell me they are monitoring them but I'm so scared they are going to burst that I can now feel them. 2 hard lumps under my skin of my lower stomach. one measuring 8.3cm the other 6.4cm.

Recently I have been for a follow up appointment to see what they can do for me to keep the pain at bay. They have advised that If they operate again there is more of a risk of damaging my organs, bowl, ovaries, womb as well as a possibility that they will have to do a full hysterectomy if they damage too much. I was also told that my left Fallopian tube is blocked (which is where the bigger cyst is)

So why am I telling you all this? I feel alone a lot of the time. My best friends say they understand but don't really get when I don't feel well because "I look fine" I'm trying to recognize my bodies strength. My pain threshold is very high. I get told a lot that others wouldn't be able to handle the pain I#m constantly in but I have to to get through the day. I've been suffering with this for so long now you'd think id have it under control but the truth is I don't. I have such a supportive family but they don't understand either because I'm the only one with this condition.

I'm contemplating on weather to see a psychiatrist or not because I have a lot of anger in me and cry a lot at the most silliest of things and I the fact that I may never be able to carry my own child. Someone to rant and rave at that doesn't have an opinion.

Thanks for reading my essay. I hope to find comfort in this support group.

Joloup. xx

8 Replies

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  • Are you in the UK, and if so are you being seen at a bsge centre bsge.org.uk/centre/

  • WOW! I've never even heard of these centers! yes I'm in the UK. Do you need a referral to be seen there?

  • Yes, your GP or consultant can refer you. If you have bowel endo you should be seen at a centre. They are mostly NHS.

  • Thank you so much! This has really enlightened me as to how much support there is out there! Thanks!

  • This is scary, how you can have Stage 4 and no one treating you has ever mentioned the BSGE centres.

    I was extremely lucky that my local hospital is a BSGE centre. I didn't realise how much of a lottery it is that you can have Stage 4 and still not be treated at one (or even be told about them!)

    Definitely ask / demand to be referred.

    xxx

  • It is so bad - I saw a woman doing GP training shortly after my last surgery and she had no idea that there were specialist centres. And when I was readmitted to my local hosp and told them I'd been seen at a centre they were very sniffy about it. It's a real problem.

  • Now I know about it I am on a mission to get referred.

    Xx

  • Thank you lovelies for the advise. I saw my GP on Tuesday this week and low and behold she had no idea what a BSGE centre was. πŸ™„ I gave her the website and info about it and requested she refer me. Hopefully πŸ™ I'll have a referral letter soon. 🀞🏼 x

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