Endo & Adenomyosis

Hi all, this is my first post :-) I'm 29 and have been suffering with Endo for the last 6 years, had a lap 3 years ago to treat that and remove some adhesions to my bowel. I've now got my second lap scheduled for 30th April - after my most recent internal ultrasound my consultant has said I have a bulky uterus (where the uterus is inflamed to pregnancy size) and he thinks I have Adenomyosis, which I hadnt heard of before. Apparently 20% of Endo sufferers also have Adeno? Does anyone know any more about this, and whether this can also be treated during a lap? I know the most effective treatment is a Hysterectomy but I would like to try to have a family in the next couple of years so thats not an option for me. The pain is horrendous every day at the moment, but worse than that is the fear that I wont be able to have the family I desperately crave. Any advice is much appreciated, Kate x

6 Replies

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  • You have come to the right place - there is a fab website for all things Adeno

    adenomyosisadviceassociatio...

    The lady who set that up is a member of this forum too.

    The website will tell you so much about Adeno and what options are available to you.

    It is a sister disease to endo - but quite separate at the same time.

    It is more common to have either endo or adeno -but there are plenty of ladies on this forum with both.

    It cannot be treated with a lap - but to some extent - just like endo, it can be held at bay by hormones. Take the evening to read through all the pages on the website - there is a heap of useful info on there.

  • Thanks - I'll definitely read up. Unfortunately hormone treatment doesn't agree with me at all so it's a constant struggle but hoping the lap gives me some more answers at least :)

  • Thanks Impatient for posting the link for the adenomyosis website. Hormone treatment hasn't helped me with mine so I look forward to reading it for further info when I get the chance! x

  • Hello I had adenomyosis diagnosed by an MRI scan in December.

    There are two types. Diffuse, where adenomyosis is found throughout the uterine wall. And focal where there is just one area of Adenomyosis.

    Adenomyosis is common and it's where the endometrium grows into the uterine wall. Previously this condition was called endometriosis interna, although it appears to be unrelated to endometriosis. Unfortunately endometriosis and adenomyosis often coexist.

    If you have the focal type, there is surgery that can be done.

    Unfortunately GNRH has very little effectiveness in the treatment of adenomyosis.

    I was told that the mirena helps ladies with adenomyosis .

    It's really important to make sure your surgeon specialises in both Endometriosis and adenomyosis.

    Best of luck with your surgery.

    Barbara x

  • Thanks Barbara, this is really useful. I tried the Mirena but had it removed after 3 months as I found it really affected me psychologically and felt extremely depressed. Feel much more like me without it, but have to cope with the horrendous pain all the time x

  • I went to see my consultant today following my op in January to remove my endo. It's my 6th lap now. The endo has been removed again however he confirmed I've got adeno. We agreed I could try the coil again. Last time it didn't work but he said it's all that's left to try. He has said we can try for a max 12 months then I need a hysterectomy. I'm 31 I am very lucky as I have a nine year old boy. When he put the coil in I was screaming and climbing up the bed in pain. We all say yes hysterectomy will happen at some stage but when they say max 12 months. I feel like my world has fallen apart today. So I get it. I can't give u any advice as I can't get my head straight myself. All I can say is fight it as long as you can. I've fought for 15 years now but I think I'm done xx

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