New here, looking for advice! 18 with endo!

Hey everyone, I'm just your average 18 year old girl, ive got a job, friends & a boyfriend, although I have moderate endometriosis. I was diagnosed when I was seventeen after five years of extremely heavy, irregular periods & extreme pain in the abdominal & pelvic area even when I wasn't bleeding. I was put on the microgynon pill back to back to ease my troubles with bleeding and my pain, after my endo was discovered, which did not much except for make me put weight on. In September of 2014 i took part in the helica research trial (shout out if you took part in it too & let me know your results!) which was removal of my endometriosis from either helium or electricity, whilst I was obviously oblivious to which one was chosen for me. Since the operation I have been put on to another pill back to back, the Yasmin pill, ive also been given cocodamol for the pain. Both of which have done nothing, any suggestions on any decent painkillers? I was told by the surgeon that I should experience temporary relief six weeks after the surgery until whenever my body decided to not respond to the treatment anymore. I have felt absolutely no relief in the months so far, I've started feeling extremely low, lonely, self concious & haven't been sleeping because of it. I would really love some advice from anyone a little bit older on what I should do? I've got an appointment with my gynae on Tuesday the 17th, any suggestions on what I could ask about or say? im just finding it difficult to find anyone who relates to it, as im so young with it, :(. Any help would be greatly appreciated & I look forward to being a part of the community :) thank you :)

7 Replies

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  • Have you considered a normal laparoscopy? Prehaps if the surgery you had was a trial, maybe no.evidence to suggest it works?? I am 23 so not much older than you although waiting to be diagnosed at the moment, so can't be of much help to you, sorry x

  • I had a diagnostic lap to find the endo, I might suggest a normal removal process when I go on Tuesday? I hope you get sorted soon hun, you've been plenty of help thank you xx

  • Hi there im twenty i have endo, I had a laparoscopy to diagnose and cut it out, a lap is the only way to give a onehundred percent diagnosis , and to cut it out is the best treatment, I agree with the previous comment, your trial is one of which there is probably no supporting evidence to say it works, it was just merely a trial to see if it is in fact any good and if it could be used for future treatment. For many women myself included the pill and regular pain killers are compltely useless , the coil however has proven to be great for many women but not so good for others, I am going to have one fitted to try. Personally I would want a lap as I would know for sure that it was removed , and excision Is better than laser as lasering can leave tiny bits which can grow back. Goodluck with everything x

  • Agree with this, Amy had her first Lap and all of the end was 'Laserd' in our minds this actually made the pain worse, as the second Lap a full excision of the endo was completed, although sadly the pain hasn't gone away and we are still looking for a solution 2 years down the line. I would also agree with the above, if it was a trial then sadly there is no real way of knowing if the treatment has worked.

  • I'm 21 and was diagnosed last May after a laparoscopy. Try asking your gynaecologist about other treatments, I've been on a prostap injection for 4 months, it's a 6 month treatment and it's honestly amazing! I have suffered with no pain whatsoever which my Endo since I began the injections. I get them once a month! Worth asking about prostap or maybe the mareena coil, I've heard that also works for some people. Completely understand how it feels to be young and suffering with Endo, so many people I've spoken to are a lot older. Always hear to chat, hope you get some answers and help soon!:)

  • Just logged into here & ive been and got the mirena coil and had the pros tap injection as a 3 month treatment! Is working absolute wonders for me! Thank you so so much xxxxxxxxx appreciate it so much

  • Hi, I would say just keep trying treatment until you find what works for you. i am on the depo injection and take norethisterine bdaily on top, and have tranexamic acid and usually use that alongside ibuprofen as I find it works better. For me painkillers were hopeless without hormonal treatment, now I have to say I have mostly forgotten the severe pain that used to be a part of my every day life. I still get tired and still get pain sometimes but generally I'm pretty good. For my Mum, the mirena coil worked the best .... it all just depends, you have to find what works for you. And don't give up until you do!

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