posted on Jan, 13 2012 @ 11:25 AM
For once, I truly have real life experience to share!
I have Uterine Didelphys.
Uterine Didelphys is an anomaly resulting from the Mullers ducts not fusing in development. Here's a nice technical definition for you:
"Uterine Didelphys is a rare type of deformity (1 in 1000 women) in the female reproductive organs in which some organs may be either split or
duplicated. Typically, some of these "extra" organs are non-functional or semi-functional appendages, although on occasion they will be completely
functional in all normal respects, and often independently. As the vagina is largely derived from the Mullerian ducts, lack of fusion of the two ducts
can lead to the formation of a vaginal septum, or "double vagina", a condition sometimes called with a uterus didelphys or a uterine septum."
In my personal case, I have two completely separate organs, with two cervixes. I have only the two normal ovaries, one is connected to each. I also
used to have the vaginal septum as well; however, I finally had that removed surgically. In addition, I suffer from fibroids to my ovaries, and cysts
in my ovaries and kidneys, but my research indicated that it has nothing to do with my congenital defect.
So what does this mean to a woman? Well, as far as practical matters go, I menstruate in each, at the same time - so tampons couldn't be used due to
the septum (the blood would just run down the other side of the septum). When I menstruate, I have double the pain (both uteri contracting for
cramps), and double the blood (both uteri shedding their linings). In addition, intercourse was a pain - on both sides. Imagine if you will, the male
party doing the thing that he does, when Bam! He hits a wall dead on. Let's just say my husband was happy after the septum removal as well. I have
ended up in the hospital for losing too much blood. I've also ended up on a morphine drip due to the pain.
I've often been asked, "Why don't you just have one of them removed?" The answer I've received from my various doctors was that they were loathe
to remove a healthy organ - the risks of general anesthesia outweighed the benefits. You see, it's already done, so to speak. I can't make the
remaining one larger (they are both smaller than an average uterus). I can't reduce my risk of miscarriage. And the usual course of action would be
hormonal birth control to help with the pain and blood loss. In my personal case, there's too much risk of migraines and stroke, although that's a
strong help to other women. In addition, a hysterectomy is out for me, unless I needed it for another reason such as cancer or an injury etc. as the
hormone therapy afterwards would be just as bad as the birth control for my migraines.
So, I'm stuck between a rock and a hard place.
As far as pregnancy goes, getting pregnant isn't the problem, but staying pregnant is. There is a higher risk of miscarriage. The uterus could
potentially be too small to stretch large enough for the fetus. Also, for the same reason, there is risk of an incompetent cervix, and sometimes a
cerclage is necessary. In my personal case, I've had two vaginally born sons. One was a little early, and one was full term. While I did have some
complications with both of them, they weren't related to my didelphys. The pregnancies, however, were labeled as higher risk. With women with
didelphys, unusual fetal positions are more common, so the chance of cesarean is high.
And the number one question I get is, "Can you get pregnant in both at the same time?" The answer is yes. I did not. It is unusual, but it is
possible. It is also possible for those babies to be born at different times.
One of the more important things for these women to remember is that the defect is associated with kidney abnormalities. Please make sure, if you're
diagnosed, that an ultrasound is taken of your kidneys.
I didn't find out until I was 17. I had such extreme pain during my period that doctors thought I had an ovarian infection. Two rounds of two
separate antibiotics did nothing. They finally found it during an ultrasound. I had gynecological exams previously, however, the speculum would just
naturally go up one side of the septum, so the doctor was only seeing one side of the equation.
I wrote an article about it for Associated Content years ago, and it is by far the most popular thing I've ever written. Why? Because there's not a
lot of research out there for the layman, and when someone is diagnosed, they of course go to Dr. Google. In fact, one mom tracked down my personal
phone number (kind of creepy) and I spoke with her for over an hour. Her daughter had just been diagnosed and she was terrified her daughter would
die. Hogwash. I was glad to help her out with my personal story.
If anyone has any questions, I'm happy to answer from a layman's personal perspective.