Currently, the most effective way to get a diagnosis prior to hysterectomy is either transvaginal ultrasound and/or MRI. In my case, I had many transvaginal ultrasounds, but I never received the diagnosis of adenomyosis prior to hysterectomy; however, that was many years ago and the technology has improved since that time.
The following is a list of the tests that may be necessary as you are worked up to rule out other causes of abdominal pain. I have been through some of these, and they aren’t nearly as bad as they sound. I will eventually add descriptions of the procedures and add my own personal details of my experience. Hopefully most of you will not have to go through all of these, but in case you do, I wanted to give you an idea of what to expect.
Pelvic Exam/Pap Smear
Notes from personal experience:
I have always hated getting a pap smear basically because of the position (legs in stirrups) and the insertion of the speculum (slightly uncomfortable). The actually swabbing of the cervix is not painful at all. The good news is that it can be completed very quickly and it is over before you know it.
Abdominal Ultrasound
Notes from personal experience:
This is a very easy and completely painless test. You will be required to have a full bladder so the technician will be able to get clear pictures of your reproductive organs. This can be somewhat uncomfortable especially if you drink a lot and have to wait at the office. If you have been waiting a while and are getting really uncomfortable, don’t hesitate to let the receptionist know that you are there for a pelvic ultrasound and have a full bladder!
Transvaginal Ultrasound
Notes from personal experience:
I have had this test multiple times. It is not painful and takes only a few minutes to perform. It has been reported that adenomyosis will be picked up using this test in 50-70% of cases; however, adenomyosis was never picked up in my case.
Colonoscopy
Notes from personal experience:
I had my one and only colonoscopy close to 20 years ago, and I’m sure things have changed since then. However, even 20 years ago, this test was not painful, believe it or not. The worst part of the whole thing was the prep the night before the exam. At that time, I had to drink a giant jug of medicine that tasted like salt water – 8 ounces every 20 minutes until it was gone. The purpose of this drink was to clean out the colon, and it certainly did its job! I went to the bathroom constantly throughout the night and became very cold. By morning, I was a little nauseated. However, once they gave me the sedative, I was completely out of it and the rest was a piece of cake. I have since learned that they changed the procedure from the drink to taking a pill the night before the test. That sounds a little bit better!
Hysterosonogram
Notes from personal experience:
Although this test sounds like it might be painful, I experienced no pain whatsoever during the actual exam. I was pleasantly surprised! However, about 30 minutes after the test (on my way home in the car), I began to have very bad abdominal cramping and some GI distress. It lasted for about 30 minutes and then passed. This apparently isn’t very common, so it could just be my individual case….not sure about that, though.
Endometrial Biopsy
I did not have this test performed during my struggle with adenomyosis. During my research I have learned that this test may or may not be beneficial in women suffering from this condition. Since adenomyosis is seen in only sporadic areas of the uterus, luck would play a role in whether the actual biopsy site contained the adenomyosis. If it happens that the biopsy site did not contain the adenomyosis, a women may be told she doesn’t have it when she actually does. Keep this in mind if this test comes back negative but you continue to have severe symptoms. It has been reported that this procedure will only pick up about 45% of cases.
Adenomyosis Fighters 