bloody nightmare !!

Hi ALL I STARTED WITH INTENSE PAIN BACK IN JANUARY was told was appendicitis so they wipped them out but nothing was wrong with them over the next few months i was in and out of hospital having various tests ultrasound scans ct scan and even a sigmoidoscopy only things that showed up were ovarian cyst liver cyst fibroids and gall stones was told at one hospital this was all normal and i would have to live with the pain and manage it on oramorph.i eventually took myself to another hospital who did laprascopy and removed adhesions and found endo in ureter consultant has started me on zoladex type injections for 6 months and if these help will do hysterectomy. i had 3rd injection 2 weeks ago no improvement what so ever taking regular co codamol naproxen on morphine patches and oramorph pain still intense anybody else going through the same im at my wits end can work some days others cant even get out of bed !!!! any advice welcome

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  • have been told that if zoladex type injections dont work it is not the endo causing pain i have constant pain in the right side lower abdo / groin area sometimes it is also in left side have also lower and mid back pain constantly in and out of hospital due to pain

  • Oh you sound just like me! I have been disgnosed with endo but have chronic right sided groin, hip and thigh pain. I had prostap injections which didn't help the pain so have been told it cant be endo related. I have been referred to the pain clinic.

    I am going to see an endo specialist asap privately, I cant take anymore!!

  • i feel like i cant take anymore also it drives me mad no one seems to listen when is your appointment let me know how u get on i was refferred to pain specialist whilst in hospital they put me on pca which is morphine pump but u cant have it at home that y on morphine patches and oramorph now good luck x

  • Having had Zoladex injections myself previously which for me did not work. I can tell you what a gyne told me which is that if the Zoladex fails to work Adhesions are your problem (scar tissue).

    If they do Endometriosis is the main culprit! I was offered a full Hysterectomy but I am menopausal now and still getting right sided pinching worse when I sit or eat and waking me when bladder and bowel full at night. They even tried to say it might be muscular skeletal whilst in the next breath saying 'oh well we could do a Bilateral Salpingo Oopherectomy. 2 years downline I have not had a big H op but still get this pain and achey body, low back pain and bowel problems. Remember if Zoladex is not working and adhesions are your culprit a Hysterectomy can cause more adhesions!

    Of course it helps some but even some Gps told me this.

  • ladies...

    I have lower right pain (and hip,thigh etc) and going to 2nd great endo gynae he found deep infiltrating endo in my right uterosacral ligament.

    This means the endo tissue is wrapped with the nerves of the ligament and causing too much pain, and also it is the type of endo that rarely medicines are working. There is a method called nerve-sparing that they can clean the endo and still save the nerves and im planning on doing it soon :)

    Jo x

  • That sounds interesting Jo where did you hear about nerve sparing? And where are you having it done?

    This may be the miracle I'm looking for!!

    Meme. Xx

  • Hi Meme

    While I was in Greece to visit my family I went for a second opinion to an endo gynae (he was from Germany, great experience in surgeries there) that he specialises in these types of endo and he talked to me about this.

    I am seeing another gynae here in London this Monday and I think he does the same method too.

    I will definitely tell you if he does this and all this details once it is confirmed.

    I'll let you know very soon :)

    Jo xx

  • very interesting to hear others experiences thanks ladies x

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