Nocturnal Musings #5: A New Diagnosis?

Nocturnal Musings #5: A New Diagnosis?

I’m not sure this technically counts as nocturnal, since the sun technically woke up 25 minutes ago, but I’ve been awake since 6 am since I went to bed at 9:30 pm last night. So I’ll count it anyway.

Yesterday I received my operative report from the CEC in the mail. I always like to read it because I can understand it, aside from the more technical surgical terms dealing with things like equipment and types of stitches. Although it does make me a little squeamish to read about things like a “Teflon rectal manipulator” and a “Pelosi tenaculum” being “affixed to the cervix.” Sometimes it’s just better not to know what happens to you while you’re unconscious.

But one thing I noticed this time made me pause. Although we didn’t talk about it post-op, and it’s not listed as a post-op diagnosis, the first operative finding was “The uterus is soft and boggy consistent with adenomyosis.”

Ok, pause. I will be the first to admit I don’t know much about adenomyosis, but here’s what I can dig up. Adenomyosis is basically endometriosis of the uterus, where endometrial tissue grows into the muscular wall of the uterus itself. Most typically, it spreads diffusely throughout the muscle, forming little groups of cells. When the uterus contracts during menstruation, these areas of growth can become very tender and painful. As with endometriosis, the cells respond to monthly menstrual changes, causing blood to become trapped within the wall of the uterus.image The presence of adenomyosis causes the otherwise firm uterus to become soft and boggy, as described above in my operative report, as the uterus loses its ability to really contract efficiently. As you might guess, this leads to problems maintaining a pregnancy. If the adenomyosis is bad enough, pregnancy can result in early miscarriage or uterine rupture. Although about 30% of women with the disease are asymptomatic, symptoms of adenomyosis primarily include heavy menstrual bleeding with clots, cramping, back pain, painful intercourse, and abdominal pain throughout the month. Diagnosis can only truly be made with pathological examination upon hysterectomy. Unlike with endometriosis where hysterectomy is not a cure, a hysterectomy actually is the only true cure for adenomyosis, although some newer surgical procedures are being developed.

So. My operative report says there are findings consistent with adenomyosis. During my last surgery, it was noted that my uterus was small and soft, possibly consistent with adenomyosis, but more likely due to primary or secondary dysmenorrhea. I had a procedure performed at the time called a presacral neurectomy, which cuts some of the nerves going to the uterus to prevent pain signals from being conducted. This would typically prevent pain from adenomyosis, and I had it done based on my symptoms at the time and the possibility of adenomyosis. Now it seems we have come back around to the possibility of this new diagnosis. I have emailed Dr. Sinervo for clarification of what changes he noted, since we didn’t have a chance to discuss this post-op.

Unfortunately, I think he may be on to something. Over the last several months, I have noticed a nearly continual midline pelvic pain that pretty much feels like I’m cramping almost all the time. Who knows how bad it could be if I hadn’t had the PSN performed? And I did have lower back pain prior to my surgery two years ago, which the PSN immediately took care of. Not to mention I have noticed my periods becoming slightly heavier, although nowhere near as heavy as they were when I was a teenager. So I think the chances of my also having adenomyosis at this point are decent.

Of course, this makes me sad. If it continues to get worse, my chances of a successful pregnancy will diminish. I still need to undergo brain surgery and heal from that before we can again resume our attempts at getting pregnant. Not to mention the brain tumor is what is compromising my fertility at the moment anyway, so who knows how long after removal it will take for my normal cycles to resume? Theoretically it should be an immediate thing, but my cycles have never really been normal, so I’m not convinced.

I could be blowing this entirely out of proportion. Perhaps my uterus is just a little mushy because I haven’t had a period in 3 months? (Darn you, Mini.) Meanwhile, I will wait to hear back from Dr. Sinervo tomorrow (because he’s better at communicating than my own doctors here are…) He said he needed to examine the intraoperative photos to gauge progression.

I hope it’s not too bad. Otherwise my chances of bearing my own children are slowly diminishing. I’m mad that we weren’t successful at getting pregnant within the last two years, because my chances of a successful pregnancy might have been higher then. Again, DARN YOU MINI. I can’t wait until next month to have you ripped out of my head through my nose, you little stinker.

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4 thoughts on “Nocturnal Musings #5: A New Diagnosis?

  1. Hey there, I’m so sorry to hear about this possible diagnosis. I’ve been learning more about adenomyosis since blogging. I had never heard of it before. All the more reason for mini to get taken care of so you can move on to other things like building your family! I hope you’ll get some good info from your doc.

    This must be one of those times in life where they say if you’re going through hell, keep walking. One step at a time…

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