please help! Sixteen year old daughter diagnosed with endo!

Hi all, my 16 year old daughter was diagnosed with endo in October when she was 15 yrs old. She has severe endo and has been on zoladex for six months. The last injection in March, however this last month she's been in agonising pain and on Oramorph for the pain. The Gyne has told her the pains she is experiencing is not due to endo as she's had the Zoladex treatment! Please help, any advice will be appreciated. many thanks

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  • Hello, I can't see any side effect of zoladex being "pain" im thinking that your gynae could have been a bit more helpful! I know sometimes you get cramps etc but she shouldnt be experiencing so much pain.

    All I can think of is, I was told before getting my injection (a different injection may I add) that some women, still get pain even when their bodies have gone into menopause and ovaries are shut off... If you can still get endo pain when you've had a hysterectomy (rare) then I'm sure your daughter could still be getting pains from endo and maybe needing something else to help her.

    I'd ask the gynae more questions and make sure you get an answer. Docs these days are just great at fobbing you off.

    Hope it all works out.

    Sam

  • Hi Sam, her gyne has referred her on to another hospital, chased this rwferral up today as its been seven weeks and havent heard a thing. the hospital say they havent received it. I know its been done as i've seen a copy, its so fustrating! she's also been referred to a bowel specialist and physio!

  • Hi,

    You need to see another specialist... ask to see an endo specialist not just a gynae.

    I have had endo since I was 14 but took me until 21 to be properly diagnosed.

    The pains are very doubtful to be a side effect from the injection as I have just had a similar one called prostap, especially seen as her last injection was in march it will be (if it isnt already) out of her system now, so all the pain will be coming back. (I have had these injections 3 times now amongst other things). A endo specialist will also tell you that the injections DOES NOT kill the endo just puts it to sleep for while you are on the injections (If it helps at all, some people still get pain as some endo can somehow feed itself eostrogen), and once the injections are out of your system it just takes up where it left off.

    I have had a number of laporoscopies and laser surgery which helped a little short term but not for too long, and I have just been back to my specialist saying thats it I want a hysterectomy (I'm 29) but she has come back asking me to try one more thing which is excision, and if that doesn't work then I can have the hysterectomy (bit drastic I know but I want my life back, and I want to be able to spend some quality time with my daughter)

    It is good to know there are some parents out there that take the pain that comes with endo seriously and dont just fob their kids off, because she is going to need all your help sympathy and compasion with this, as it is always a long and drawn out thing that does slowly drain you of all your energy (and in away life because you are always in pain tired and poorly). Some people dont realise how bad it actually is. But tell her to try everything possible before she goes drastic if she is ever wanting children... they told me I couldn't have any at 21, I had a laporoscopy and laser at 22 was on the prostap for 6 months after that then when I went for a scan to check the endo 3 months later they found my beautiful little girl... so miracles do happen even through all the pain and anguish that endo causes, and my the fact that I have my little girl has made some of the suffering worth while :-)

    If you or your daughter would like to talk or to know anything please pm me and if I can help I will :-)

    Also I have just finished a book that is the best and most informative I have ever read and I have been reading up on it for a looooooong time lol... Its called Living Well with Endometriosis, it might help some :-)

  • Hi. I've had Endo since I was 11 but took till I was 21 to get diagnosed. I know exactly how hard it is to be a teenager and go thru all that. Your daughters lucky in a way as at least she has a diagnosis and can receive treatment early. Maybe she could go on a different type of injection and they might help.

    I volunteer for Endometriosis UK and we have a telephone service if you or your daughter just need someone to talk to. On the website we also have info packs and groups you can attend. Hope this has been helpful. If your daughter wants to chat to me just send me a message :)

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