YANMD: Focal Adenomyosis, what do I need to know?
June 22, 2015 10:06 PM Subscribe
What is it? Is it benign? Could this cause infertility? Am I screwed?
Here we go... I had one day of bright red spotting a few days after my period and went to my doctor who called for a transvaginal ultrasound. I generally maintain a low dull pain in my pelvis. 36 years old, no kids. Hashimotos.
Turns out there is "focal thickening of the posterior wall with mass effect on the endometrium and suggestion of mild venetian blinding, suggestive of focal adenomyosis"
Besides seeing an OBGYN next, what do I need to know about this diagnosis?
Here we go... I had one day of bright red spotting a few days after my period and went to my doctor who called for a transvaginal ultrasound. I generally maintain a low dull pain in my pelvis. 36 years old, no kids. Hashimotos.
Turns out there is "focal thickening of the posterior wall with mass effect on the endometrium and suggestion of mild venetian blinding, suggestive of focal adenomyosis"
Besides seeing an OBGYN next, what do I need to know about this diagnosis?
treehorn+bunny is a doctor, and I'm not. I have two anecdotes about adenomyosis.
I bled and had moderate to severe pain 24/7 for about a year. After being misdiagnosed with fibroids--including going in for fibroid surgery but waking up not having had surgery because upon closer inspection there were no fibroids to remove--my doctor suspected adenomyosis. I was 40 and didn't want kids. I had a hysterectomy after many months of investigation and trying other things. Adenomyosis was confirmed after surgery. My pain and bleeding were resolved, and I made the right decision for me.
However, my friend was told in her late 20s she likely had adenomyosis and that if she wanted children she should give birth asap because (this was one OB-GYN's opinion) she would likely experience worsening of pain as time went on, and because her fertility may have already been compromised. He advised her to have a hysterectomy pretty much the minute she decided she was done having children. She didn't partner until later on and assumed she was infertile. She dealt with the pain and didn't use birth control. At ages 40 and 43 she had surprise pregnancies and now has two healthy, very much wanted kids.
posted by ImproviseOrDie at 1:46 AM on June 23, 2015 [1 favorite]
I bled and had moderate to severe pain 24/7 for about a year. After being misdiagnosed with fibroids--including going in for fibroid surgery but waking up not having had surgery because upon closer inspection there were no fibroids to remove--my doctor suspected adenomyosis. I was 40 and didn't want kids. I had a hysterectomy after many months of investigation and trying other things. Adenomyosis was confirmed after surgery. My pain and bleeding were resolved, and I made the right decision for me.
However, my friend was told in her late 20s she likely had adenomyosis and that if she wanted children she should give birth asap because (this was one OB-GYN's opinion) she would likely experience worsening of pain as time went on, and because her fertility may have already been compromised. He advised her to have a hysterectomy pretty much the minute she decided she was done having children. She didn't partner until later on and assumed she was infertile. She dealt with the pain and didn't use birth control. At ages 40 and 43 she had surprise pregnancies and now has two healthy, very much wanted kids.
posted by ImproviseOrDie at 1:46 AM on June 23, 2015 [1 favorite]
It is my understanding that a hysterectomy is the definitive diagnosis for adenomyosis, according to the surgeon who did my surgery. Brief back history; I was was the girl who had brutal cramps in school, spent decades fighting anemia, ***had three children, in my 20's***, home births after the first hospital birth. I had a severely retroverted uterus, but other than excruciating back labor with babies 1& 2 (baby 3, not sure what happened, 4 hour labor, NO back labor!! Sometimes the goddess gives us a break..) There were no problems with getting pregnant or sustaining a pregnancy.
That said, my health took a downturn in my 30's. HEAVY bleeding, clots and continuous back pain. I naively thought I was dealing with early menopausal symptoms. This went on for a decade. Finally, during a routine pelvic exam with a new doctor, it was discovered that my uterus was attempting to do a full back flip. The adenomyosis manifested by endometrial tissue infiltrating the muscle fibers of my uterus, basically blowing it apart slowly. The weight of the enlarged uterus was pulling it even farther backward. I had a hysterectomy in 2009. Best decision ever! Instant relief. I have a high pain tolerance, but didn't realize just how significant my pain was until it was gone. I am proof that pregnancy & healthy babies are possible with an extreme adenomyosis condition. I would suggest trying to find a doctor that has experience with adenomyosis, and after you have your children, don't wait to deal with the condition. I lived in pain far too long.
posted by LaBellaStella at 3:40 AM on June 23, 2015 [1 favorite]
That said, my health took a downturn in my 30's. HEAVY bleeding, clots and continuous back pain. I naively thought I was dealing with early menopausal symptoms. This went on for a decade. Finally, during a routine pelvic exam with a new doctor, it was discovered that my uterus was attempting to do a full back flip. The adenomyosis manifested by endometrial tissue infiltrating the muscle fibers of my uterus, basically blowing it apart slowly. The weight of the enlarged uterus was pulling it even farther backward. I had a hysterectomy in 2009. Best decision ever! Instant relief. I have a high pain tolerance, but didn't realize just how significant my pain was until it was gone. I am proof that pregnancy & healthy babies are possible with an extreme adenomyosis condition. I would suggest trying to find a doctor that has experience with adenomyosis, and after you have your children, don't wait to deal with the condition. I lived in pain far too long.
posted by LaBellaStella at 3:40 AM on June 23, 2015 [1 favorite]
I just had a hysterectomy due to fibroids and adneomyosis, I feel sooooo much better! The scar tissue had caused adhesions to my bowel which meant excruciating pain almost everyone I ate anything. I'm 42, no kids and didn't want any. It took a fair amount of suffering before I decided that surgery was the better alternative, I wish I had done it much sooner.
posted by yodelingisfun at 10:43 PM on June 23, 2015
posted by yodelingisfun at 10:43 PM on June 23, 2015
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It is benign.
Whether it causes infertility or not isn't known, but some believe that it can contribute to "sub fertility".
You're most definitely not screwed. (not sure in what way you mean - your health, or fertility, but neither one should be screwed based on this finding)
I looked around a little bit and I think this page is a good comprehensive summary for a lay person.
posted by treehorn+bunny at 10:29 PM on June 22, 2015 [2 favorites]