ADENOMYOSIS????????

Does anyone have any info or has anyone been diagnosed with Adenomyosis.

I was told I had endo about three years ago which was confirm by a Lap 2 years ago next month. After the Lap the pain was still there so I had another one in February this year.

This time no endo was found and I was discharged from Gynae and told to go back to GP.

I did this and was told nothing else can be done and that I would have to live with it. Well, I just sat their and cried. I'm 31 and I have to spend the rest of my life in pain, sometimes so bad that i cant move, cant get out of bed and the only thing I can do is to take painkillers that make me sleep through it. Why not just sedate me now for the rest of my life.

I did rant at him a bit. He said that as it hurt more when i exercised and had intercourse that the endo had damaged my muscles.

Well this was a few weeks ago now and have been pretty down since.

2 days ago my pains were so bad, I hadn't slept in 2 nights so I did some digging on the internet and googled (i love google) endometriosis muscle damage and Adenomyosis popped up. Not much info to be found but it appears that it is when endo is found on the muscles inside the uterus wall. It makes the uterus large and hard and it is found in 60% of hysterectomy cases that have been done for pelvic pain. It is hard to test before hysterectomy as involves biopsy the muscles in the uterus but this is done blind and a healthy muscle could be used.

Its all very confusing...

Do the doctors know about this..

and if so why was i discharged , should the gynae have looked into something else..

I feel like i have been prodded and poked and everyone wants it to be someone elses problem

Any info or advice would great

thank you all for reading my rant

Ria

x

3 Replies

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  • Hi Ria - indeed many GPs appear largely to know little about endo so what we refer to adeno is likely to slip right through the net with most of them. Click on my username and look at the link I have put on to a very good adeno site that should give you lots of info. Have a look at my other posts too though, as it may well be that you have had your endo incompletely indentified/treated by a general gynea. The area called the pouch of douglas is often missed. Can you give us more details of your symptoms after reading all of the info I have put on. x

  • Thanks so much, I will have a read.

    I did have endo on pouch of douglas as well as ovaries and bowel. He never said wait stage it was though.

    My symptoms are many and the dont always happen at once. Some are

    Pain, like period pain, although throughout the month

    stabbing pain, sharp and low in pevic area

    currently feel like i am sitting on a big spiky metal pole.

    pain having a bowel movement

    pain passing water

    pain after sex

    pain after exercise

    weight gain

    spotty face

    mood swings

    nausea

    bloating

    i think i could go on and on.

    I guess it cant been seen on a lapaosocopy as its inside the uterus. Should I request an MRI, is it worth it as only cure seems to be hysterectomy and dont think i am ready for that yet. We do have children but dont think i would like to go through menopause now, but then maybe that is better then what i am going through now.

    What I would like is someone to say. do this ................... it will be the best thing for you.

  • I had a trans-vaginal ultrasound which flagged up a suspected adenomyoma in my uterus. My GP said to me that it is part of the endometriosis family but the uterine lining has grown back into the muscles of the uterus rather than out in the pelvis. I joined the Adenomyosis Support Facebook page which has got loads of info and a very supportive community.

    The gynae I initially saw said that it cannot cause pain all month and brushed it off yet all the reading I do says it can. Like yourself I have pelvic pain all the time but at times it rushes in and pretty much takes my breath away almost like labour pains, bowel problems, pain after sex and exercise but not immediately usually hours later. Pain causes nausea and grumpiness. I have had to give up running, exercise classes and am pretty much reduced to swimming, although the steam room I use afterwards does help.

    I am taking lots of painkillers - have you tried an anti-inflammatory as that helps some women. My GP would not prescribe me anything to protect my stomach so I can only use the Naproxen I have sparingly but it sometimes helps. I am waiting to be seen at a specialst endo centre (thanks Lindle!). If you click on Lindle's name you will be able to find one near to you and then ask your GP to refer you there - they are not allowed to refuse you a second opinion, if they do threaten them with the local CCG.

    It is tough going but I am trying to take it one day at a time and if I hurt popping some more pills. It is harder at times than others - I had awful spams and pain on a walk at the weekend and it was all I could do to get home, even then it took lots of grimacing, waddling and grumbling and hoping that I didn't explode; I raced through the front door and was in the bathroom for what felt like an age! It is depressing but we're women we just keep plodding on.

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