My story, whats yours?

Hi im 27 and new to here but thought that i would share my story.

For years, for aslong as i can reember really, i have sufferd badly from very painful periods, extremly heavy bleeding, pain when urinating (just before and during period) i could not use tampons as uncomfortable and well pain during sex. But i was constantly told from gp that my periods where "normal" and did i seriously think they should be pain free. I'm not stupid and of course i didn't but on the other hand i did not think they should have been the way they where. Anyway I was lucky i had a baby boy in 2006 with little problem. It wasn't really untill trying for my girl that i became worried. It took me and my husband about 18 months to eventually fall preg. After i had her i then opted to get my tubes tied for other medical reason. When i woke from that opp i was told that they had found small signs of endo and "if we had of known whe could have done something about it" How was i ment to have known?? they then sent me home with no explination as to what it was or anything. Anyway i went to follow on appointment 6 months later to discuss options. they where awful, i ended up walking out in floods of tears. I went home and did some serious research into it and specialists of endo. I then found an amazing one Mr Duncan Irons in the north east, Durham university hospital. I got my referal to him and so glad i did. He made me feel at ease, like i wasn't going mad, and that i truley have a condition and it wasn't in my head. He booked me in for a laporoscopy, and endometrial ablation (removal of womb lining for others that don't know) we opted for this as obviously i will not be wanting/having anymore children. After opp i was told it was not a small amount of endo, and it was all over, My bladder had been stuck elsewhere, was all over the ligaments holding womb up, and that my tubes where coverd, he told me i had been so lucky to have my second child naturaly. Well im now 7 months on and have no bleeding atall, and endo pains where vertually non, but now i am getting signs of it growing back as i had to stop the hormone trt after opp. im due back to see Mr Irons next month so will update again then. Sorry for longggggg story. would be great to hear some of yours. Sending well wish's and pain free thoughts to you all x

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  • Hi im 24 and i got diagnosed yesterday with endometriosis after 2 laparoscopy surgerys, they didnt find any endo on my first lap but they did find my right fallopian tube was tangled with my intestines and both was pulled out of place so they booked me in for another lap op to remove the scar tissue and the adhesions and thats when they came across the endometriosis on my left side and also on my pelvis they done a biopsy on it and i got the results yesterday. I have to go back to hospital on monday to start some injections but i dont even no the name of them and im slighty scared about it all to be honest, I just want to feel normal again x

  • Hi nice to meet you. oh god so you've had it rough to finding out whats wrong :( I really hope all goes well for you, I cant give any advise on injections as never had any, i had/have to be carefull about what i can have and can't have im a long term depressive (border bipolar) so hormone trts effect my moods allot. I really do hope it works out good for you tho x

  • My endo was discovered in 2002 during removal of damaged fallopian tube both ended up being removed. It was casually mentioned in about a 3 line letter afterwards from the hospital. Little did I realise the implications of this for years afterwards until today! I think they are only just starting to discover the implications of endo, how far is can spread and the link with adhesions (scar tissue) along with the fact it can actually grow its own nerve supply, hence pain complications and that each surgery can make adhesions worse! Trouble is, as there is no cure only removal of deposits and scar tissue and if this is not done by a skilled gyne and even bowel surgeon as it can get on the bowel and occasionally bladder too and spread into stomach etc. The point is it must be all removed every little bit and if it gets into the pouch of douglas it is really tricky to remove but not impossible. That is why you need the best most skilled surgeon for the job plus importantly the lastest adhesion barrier method available/most successful. Many NHS hospitals due to funding do not use the latest one which in my opinion is not cost effective as adhesions complications cost the NHS more in the long run with requirement for more surgery to attempt to rectify further adhesions.

    That i gather is why those who are lucky enough to be able to go private with an endo/adhesion specialist usually get the best result.

  • I diagnosed with endo november last year although i had endo since i was 14 years old when i was 14 my periods were heavy then i started to only get them once every 3 months at that time pain wasn't really a issue but i would go to the doctors and ask why the periods wasn't till every 3 months and i was told it was because i was younge and they would sort themself out but i knew this wasn't true when i started to get pain i visited the doctors quite alot and they would tell me i had all different kinds of things wrong with me which also wasn't true i had a ultrasound scan and they found out i had pcos (polycystic ovaries) but still i continued going to the doctors as by this point the pain was really bad and my periods wasn't till every 9 months at this point so eventually they did a laproscopy which diagnosed me with severe endo i found it really hard to cope with and i felt like my life had ended because i thought with period every 9 months what if im infertile what if il never have children in the future im only 21 years old but hoped to have children one day, its a terrible thing but now to this day i dont believe il be able to have children in the future as i no it would be very difficult and possibly impossible but ive learned to deal with that ajust incase and if i do then i will be the happiest girl in the world.

    Now i still get alot of pain im on cerazette mini pill i have endo which came back after the laproscopy i take pain killers but they dont really do much, ive tried the endo diet but it doesn't help me but i get by and i dont let endo beat me.

    Im going back to college next week which is a big deal to me as i stopped college before because of endo.

    i refuse to let this beat me.

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