Me and My Uterus
(Warning: this is a super long post!)
(that is a pic of me on the day of my surgery to remove the non communicating portion of my uterus. I was so happy! I could hardly wait for the surgery to start. And it became the first of many photos of me in a blue hat. I think since that day I have had a picture similar to this every year.)
There is such little information on the internet about unicornuate uteri that I feel an obligation to post some information about it.
I was diagnosed w/ UU about 3 yrs ago. For years, since I was a teen every few months I would experience a debilitating pain to my left side. As a teen, my mom asked are you constipated? I said heck no! (truth be told, I didn't even know what it meant to be constipated, so even if I was, I wasn't going to admit it) I then looked constipation up in the dictionary and realized that I might be. So then I would get harangued about my diet. "You don't eat enough fiber" "exercise more" "are you lactose intolerant?" No, no, no. I ate the same food my family did and I exercised regularly. So it didn't seem to make sense that I would have issues. I would just suck it up and deal with the pain. The thing was I never knew when it would hit. I could feel dull crampyness or achyness for days and weeks and know that eventually I would be incapacitated in pain on the floor, but I didn't know when that moment would strike. It seemed to sometimes coordinate with my periods, but not always.
Once the pain hit. I would be unable to move for 1-2 days. Then it would be over and I would be back to normal until the next time it felt like happening.
It was terrible. And then for a few years I would be in so much pain and then until I threw up it wouldn't begin to improve.
I went to doctors. I had scans. Everyone always thought it was intestinal related. I would try to tell them how it was sometimes related to my period as well. I was told that was a "red herring". I had a colonoscopy that showed irritation. So I started meds for IBS and got stuck with that diagnosis for awhile. Then I got a premarital checkup from an OB. I told him my medical/pain history, he did my 1st of many vaginal ultrasounds and he said I had a large fibroid. So that started an additional diagnosis. He almost did surgery to remove it (thank goodness he didn't).
The IBS meds never helped. Like a good nurse I stopped taking them. I moved to Texas, that pain continued, so I went to another gastroenterologist specialist. As soon as I hopped in her chair she said, I want to do another colonoscopy. I told her, no thanks, I had one done a year ago. I left her office and never returned.
Then my hubby and I started trying to have kids. No luck there. After about 9 months of trying I went to a doctor and began my lovely life as an infertile. Blood tests showed I wasn't ovulating. So I got to have another vaginal ultrasound with an insanely full bladder and a not so lovely hysterosalphinogram (HSG)-- (for those fertiles out there--this is when dye is rammed up your cervix to see where it goes--not fun). The radiologist (I wish I knew his name I would send him a thank you letter--finally someone competent in the medical field was taking care of me!), recommended to my doctor that I get an MRI to check my uterus out a little bit more. And then the HSG test showed that no dye spilled into my left tube.
That was when I got my first "you'll be pregnant in no time" comment. The nurse said, "A lot of people get pregnant after the HSG because it opens up their tubes nice and wide".
I got an MRI shortly after that. Then my OB doctor called and recommended I see an infertility specialist. And I have never heard from or seen my OB since. I dream of the day I can walk back into his office.
My hubby and I went to the RE that my OB had recommended and he immediately told us that I had a unicornuate uterus w/ a non communicating rudimentary horn. Hence the reoccurring pain on my left side. I had found yet another smart doctor in Texas.
here is a picture of what mine probably looked like
It was such a strange word to hear. I had a unicorn in my uterus? I didn't know unicorns existed. The RE also descibed it as "banana shaped". So I had a unicorn eating a banana inside my uterus? No wonder I couldn't get pregnant, there was no room for a baby in there.
When a fetus is developing it develops from the outside in. And uterus starts as 2 pieces, but when it comes together it merges into a big normal uterus. Mine did not come together. So one side developed as much as it could, the other (left) side barely developed. But it developed enough that it had some lining which would slough off with each period but then have no where to go. This would cause intense pain, cramping, and general misery on my part. It also made sense to me that this would cause irritation to my intestines that were right next to my uterus and foul up my digestive tract in the process.
Also if you have UU you may possibly only have one kidney or kidney issues because the kidneys develops at the same time as the uterus. I did another test to check that, and I had both of mine.
So my RE referred me to a better surgeon than him and in a short 6 hr surgery it was removed. And I have never had pain since. He did a laprascopic surgery to remove my left rudimentary non communicating horn and he removed the left fallopian tube as well. He said I had no endometriosis which was great news, but that I had a ton of scar tissue. (this was a pic my hubby took of me after surgery. I got some good drugs that day)
If only that was the end of the story. With a UU I am at risk for preterm labor, incompetent cervix, breech delivery (hence C-section birth), and the baby could also have IUGR (intrauterine growth restriction). And the kicker is with IVF I should really only put 1 embryo back, because there is no room in the inn. Oh well. I used to be real set on having a natural vaginal delivery, but after all this news, I threw those plans out the window. I will just focus on trying to get pregnant. How the baby comes out of is the least of my concerns.
But there is a silver lining to my story. If I hadn't been infertile I never would've gotten these tests, and I could still be doubled over in pain every few months.
I am so glad I am not in pain anymore. It was terrible. I can remember most every spot that it happened, it was so excruciating--on dates, during vacations, at work, while teaching a class, while driving down the freeway. Oh my, I am glad those days are behind me.
And I no longer have to hear people tell me how to improve my bowel function. That in itself is great.
Sometimes I feel like writing a letter to all of my previous doctors so they know what to look for and to listen to their patients a little bit more. We'll see if I ever do.
And that is the first chapter in the story of me and my uterus.
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