Adrenomyosis :(

Hi everyone

I just found this forum today and would really love some advice if anyone has any :)

Im 22 years old and found out after a lapro and hysto that i have Adrenomysis. I was told that the D N C i was given would "cure" it however 4 months after my first surgery the pain came back and sent me bed bound for days each new menstrual cycle. I went to the gyno last night and was told it was probably back and my last bio did suggest i had a very high level of the.. (im not really sure what it is. a disease. infection. disorder..) So now im going for my next surgery right in the middle of my uni exams next thursday for a new D and C and look around to see if the Adren has got worse.

My doctor told me i would have trouble falling pregnant and now im really scared although im not trying at the moment soon i do want to and im not sure what ill have to go through. IVF? more surgery? will the pain become better or worse?

Im just so confused at the moment the thought of a D and C, lapro, hormone treatments for the rest of my life scares me so much! how do people with chronic pain maintain jobs or studies? i find it hard as it is cutting down to 3/4 time at uni let alone the thought of a 9 to 5 routine job.

Sorry for the rant :(

Any thoughts or advice would be very much appreciated

Hi Klee!

I'm so sorry you are suffering through this misery. I hadn't heard of this disorder so I looked it up. For others who don't know what this is either, here's an explanation from the Mayo Clinic website.

"Adenomyosis (ad-uh-no-my-O-sis) is a condition in which endometrial tissue, which normally lines the uterus, is present within and grows into the muscular walls of the uterus. This is most likely to happen late in your childbearing years and after you've had children.

Adenomyosis isn't the same as endometriosis — a condition in which the uterine lining becomes implanted outside the uterus — although women with adenomyosis often also have endometriosis. The cause of adenomyosis remains unknown, but the disease typically disappears after menopause. For women who experience severe discomfort from adenomyosis, there are treatments that can help, but hysterectomy is the only cure. "

This does sound awful but the one thing I did notice reading about it is it's not life threatening. That might now seem very encouraging right now but it's something to hang on to some days.

Chronic pain wears us down physically as well as mentally. When we hurt and worry about our diagnosis we stress out. More stress = more pain and around the circle we go with the pain ramping up on each revolution. It's an awful cycle and hard to stop but maybe we can offer some suggestions. There are many relaxation techniques and without getting fancy you can help your body de-stress. Warm and luxurious baths often help relax the body as well as the mind. Light some candles, play some soothing music and lay back in the warmth and relax...and NO interruptions...lol For some of us warmth is essential. I have fibromyalgia and if my muscles get cold I'm in higher pain levels. So heating pads are my friends. ;-)

I've rambled on enough but I'm sure others will come by and offer their ideas for you. This is a great bunch of folks and I'm glad you have joined us.

Chutz

Hi Klee!! I dont know about what you have but I do have endometriosis and they told me that a hysterectomy would get rid of the endo and that just didnt happen. I still have to have them go in and clean me out every few years since with me they said no more blood to feed the disease but the disease feeds itself!! I feel for you,I sure hope you feel better soon.

Hugs.
Karen

I strongly suggest you get a second opinion. There are many causes of pelvic pain and many treatments but you need an accurate diagnosis to make decisions. It is very difficult to diagnose adenomyosis while the uterus is still in the body. It can be suspected but the diagnosis is usually confirmed after a hysterectomy.

You can get some great information about pelvic pain from www.endocenter.org There is a lot on information on the site and a forum where you might find information to help you choose a doctor. It's been very slow there lately but you can read through everything so you can make informed choices.

If you really only have pain with your period, there are ways to stop your period without ending your fertility. Do a lot of research on any suggested medication, some can cause long-term problems that some docs forget to mention.

There are some wonderful doctors that will look at your medical records for free or a small fee and suggest treatment options. These docs are true specialists and work miracles for many women, reducing or eliminating pain and preserving fertility. The ERC website has a list of docs that are highly recommended by women with chronic pelvic pain. (I have no connection with this site other than finding a terrific doc that helped me a lot.)

Have you tried the heating pad patches (Therma Care, etc) for when you are away from home? They last for hours and are great if heating pads work for you. They can be expensive but are sometimes on sale for reasonable prices.

I am sorry you are going through this.