Good morning ladies!

Just wondered if anyone had been diagnosed with adenonyosis? I went to see a new private consultant last week after my previous one retired and he advised that I have stage 4 endo and adenonyosis! I was diagnosed with endo 2 years ago and never heard of this condition! I am at the point now where I can't work I am in that much pain. Any advice is very much welcome!

Thanks ladies! Keep smiling! 🙂

16 Replies

  • Yes I've got it too as well as fibroids. I had a lap about a year and a half ago and they got rid of the endo but the rest still stays as they said they couldn't get rid of it- they told me the only way they could do that was a hysterectomy and as we are trying for children then that's not an option- were going through IVF at the moment as the fibroids have also blocked my tubes! I cut wheat/gluten and soya out of my diet as I was reacting from them so I don't know if that would help you too. There are certain times of the month that I am in real pain and sex is so painful. I find peppermint tea and peppermint capsules really helpful- it soothes the cramping as well as the hot water bottle and paracetamol. They did try me on various tablets to stop the bleeding but they made my hormones go crazy so I stopped them. I have found since the lap that I am not bleeding so heavy for as long which is definitely good. Have they said what they plan to do in regards to your diagnosis? X

  • Adenomyosis is essentially endometriosis of the uterus, endo cells infiltrate the layers of tissue and swell within them during your cycle. The main symptoms are pain and bloating the only known cure is a hysterectomy.

    Did you have a laparoscopy?


  • I've got Adenomyosis too. Been on Zoladex for 6 months and having a hysterectomy in April, as that is the only real cure for it. Here is a link to give you more info. Hope they can sort you soon x x x adenomyosisadviceassociatio...

  • Thank you that website was very interesting xx

  • Your welcome hun x x

  • Sorry to ask but did you get the pressure feeling down below and back pain ?? Xxxx

  • Yes hun, got it at the moment even on Zoladex because it has spread quite badly apparently. Feels like everything inside me is trying to push out. It's not a nice feeling x x

  • It's horrible I'm just trying to get my head around it all, I feel like every month I'm getting more symptons and it's getting worse😢 I'm waiting for my next gyni app 😢😢 it's really got to me this week though feel pants xx

  • I know how your feeling hun. I'm the same. Trying to get my head around having a hysterectomy but it's the best thing for me as I have 2 grown children and don't want anymore. Am scared about the op but anything has got to be better than this pain. Hoping you get sorted quickly hun and your not suffering too much x x

  • Can I ask how they diagnosed you x

  • Laparoscopy and trams vaginal scanning x

  • Mine was diagnosed through laparoscopy and a scan, after having endo and cyst removed my pain came back with a vengeance. Also my uterus is always sore and swollen when he examines me x x

  • I've had endo removed twice, my last surgery was in October last year. The pain has come back with avengence over the past month or so. It's such a debilitating pain. Mine was swollen when the consultant and the synographer examined me too xx

  • It's a nightmare, am really hoping the surgery helps me to be pain free at last!! X x

  • I don't get back pain but I do get the baring down and pressure feeling yes xx

  • Thanks for you reply. I don't want children and never have to be honest. I just want to get rid of this pain and go back to a normal life. My partner and I split up over it which made things harder. I just want to be me again xx

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