?

Log in

Pain FINALLY Explained! - Adenomyosis Support [entries|archive|friends|userinfo]
Adenomyosis Support

[ userinfo | livejournal userinfo ]
[ archive | journal archive ]

Pain FINALLY Explained! [Jan. 12th, 2013|04:42 pm]
Adenomyosis Support
adenomyosis
[mandyd1770]
Hello,

My name is Mandy I am 32 years old and I am newly diagnosed with Adenomyosis and endometriosis. I am in the military and have been struggling with unexplained, debilitating abdominal pain for going on 8 years. I have always had heavy, painful periods, and I have had every blood test and multiple ultrasounds with no diagnosis. I have been sent home by many doctors telling me that I was making up the pain and I should be on antidepressants. I finally found an OB/GYN that took my pain seriously and on Wednesday she found, during a laparoscopy, that not only do I have endometriosis, I also have adenomyosis. After 8 years of complaining about pain, and feeling helpless I finally have a diagnosis. I have two children, and had not planned on having more so a full hysterectomy is not out of the question for me. I will have to have my ovaries removed also due to damage from hemorrhaging cysts. My question is there any reading for spouses on this disease? I do not believe my husband understands the awful pain I experience. Intercourse is completely out of the question for me right now. I have such intense pain and bleeding afterwards many times I have had to go to the ER and get IV narcotics. My husband says he understands, but I really don’t think that he does. Not only is this pain physically painful, but emotionally I am a wreck. I used to be a runner, and now I barely make it to work most days. Any advice would be great!!
linkReply

Comments:
[User Picture]From: zebra_bunny
2013-01-13 02:51 am (UTC)
Did your doctor give you any information when he/she gave you the diagnosis? I don't know if there is anything specifically designed for spouses.

I explain adenomeiosis by making two "walls" with my hands and then saying that the uterine lining goes where it's not supposed to go and every month my body tries to get rid of it, but it has no where to go and pushes on the walls, causing extreme cramping and pain. If that doesn't do it, I say something like "imagine someone was kicking you in the balls repeatedly for 5-7 days each month and everyone tells you it's all in your head and see how good you feel." ;)
(Reply) (Thread)
[User Picture]From: tig_b
2013-01-14 09:00 pm (UTC)
I am glad you finally got diagnosed. One thing I found was that even after my belated diagnosis, I worried that it was in my mind - having been told so by several doctors.

This may help with information for a spouse
http://www.endometriosis-uk.org/information.html

Don't forget that pain is physically tiring; so you get fatigue as your body tries to cope with the rogue bleeding (almost like an infection), from lack of sleep and from coping with pain.
I did find that pain management helped (not enough! but it helped).

I don't know of a similar source for adenomyosis - but hopefully this covers it all.
(Reply) (Thread)