What next?

Hi all! I've been part of this group for a couple of years now and never had the courage to write anything, however I feel as though I am running out of options and would love some advice. Here's my story, You'll have to bear with me. After being miss-diagnosed for 7 years with IBS I finally had a diagnostic laparoscopy at the age of 21, they told me I had "film-like" endo covering my organs and also my lady region and said that they could not remove because of the type it is and where it is.They never really said much other than that, which left me somewhat confused?! Anyway after the op they were deciding which contraceptive to put me on as I've tried nearly all of them and bled through.My doctor spoke to me and gave me a few options I could either have the prostap and HRT the DEPO the coil or a hysterectomy ?! I definitely decided against the hysterectomy and they put me on the prostap injection and HRT which made me feel awful and after 8 months took me off it. They then decided to try the depo injection and to my surprise it worked no bleeding no pain I felt good for once. But around 8 months ago after being on it for two or so years I can feel a decline after six weeks of having the depo, it feels as though my body is going into meltdown. Chronic fatigue constantly, aching, no energy, pain, hot sweats the list goes on! I've recently been back at the doctors to speak to him about this , the doctor saying very little and he's referred me back to the hospital. I'm 24 now and feel like a cripple, I feel as though my options are running very low. Any help at all would be greatly appreciated and thank you for taking time out to read this.

5 Replies

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  • Im sorry to hear this. I too am at crossroads with my endo. Diagnosed at 20 and now almost 30. Im on mst 30mg twice a day and codeine for breakthrough. Its been hard to accept it has got to this stage but living is very difficult. I suffer from depression too, suffer with chronic fatigue and just feel generally fed up alot. I had prostop which seemed to help a little. Next option for me is a hysterectomy but first I need to accept its very final and it may not be the answer. Plus mine is on my ovaries too so I would want them to take these. All I can say is you are not alone. It was very hard to accept that I also need such a high level of pain relief but my gp said that if that's what I need to get me through life until or if things improve then at least I will have a bit of a life rather than sleeping and being in pain. It really did help me realise that my issue is real and depression and endo just fight each other constantly. xxx

  • Thank you for your reply, I'm sorry to hear about your story. I'd take time to think about having a hysterectomy it's something which sadly cannot be reversed,i hope everything works out for you! My worry is that I haven't had a normal period for two plus years and the doctor never actually told me if I should have my injection or not, it just seems pointless to have it if it's not doing the job. I just feel like I need to get ready for the worst if I don't have it? Totally don't have a clue what to do.....

  • hi darling, sorry your having to deal with all this at your age,

    im 39 and been diagnosed with endo and adenomyosis, im waiting for a hysterectomy for the adeno, which is a cure,

    have you been seeing a endo specialist on the bsge list, check out a lady called Lindle she has written, a few great posts that might be good for you to read, im not sure why they cant excise your endo, but if you havnt seen a specialist I would defo look in to that,

    a hysterectomy is very final, and unfortunately not necessarily a cure for endo, exspecially if they leave the endo behind,

    I wish you all the luck in the world, please let us no how you get on and read Lindles posts, she is very informed and a great person to talk to.

    xxx

  • Sorry to hear that, seems like you've had to deal with a lot! I'm basically crawling with it is what my doctor said, it would damage tissue or something? I did go to royal Preston hospital for my lap and they are on the list. They weren't very helpful at all and had to go to the docs so she could explain to me what they found?! I'm thinking weather or not to ring up and go private? If that could help speed the process up. You've both been a great help, thank you for your posts. Do you have a link for lindle? X

  • Hi Jade - can you click on my username and read my first post on endo and the one on pouch of douglas endo to see what you identify with and private message me with as detailed as possible a description of your symptoms at all times of your cycle and your treatment history. It would also help to get a copy of the surgical report that was sent to your GP after your lap. There will be a charge of a few pounds but you are entitled to a copy. x

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