I am a Unicorn

I had an HSG right after my SIS at the beginning of November. It was “optional” per my RE, as he felt the SIS had showed us the probable polyp and we were already going to remove it at the hysteroscopy. Of course, I am a glutton for all the information I can get regarding my fertility, so I went ahead with the procedure.

It was done by a nurse practitioner. She prepped me for the procedure, the radiologist joined us, and we got started. The x-ray machine was turned on and they injected the contrast.

Side note: the procedure didn’t hurt at all, and I like to think that as a nurse, she was more gentle than my doctor (I am a nurse also). She inflated the catheter balloon very slowly, as that was the worst part of my SIS, and it did the trick. So I’d recommend that you ask whoever does these two procedures inflate the catheter balloon slowly and it may help with some of the cramping and pain associated with these procedures.

They had a hard time visualizing my full uterus so I turned from side to side and did everything I could to help them get a full picture. Then the NP said it…

I think it’s unicornuate“. 

The first words out of my mouth were “Oh shit, that’s not fixable”. She said she’d talk with my RE as soon as she got back to the clinic, and I received an email later that night from Dr. N saying he agrees with the NP and he’d be able to tell more at the hysteroscopy.

For those of you that don’t know, a unicornuate uterus (UU for short) is a type of Mullerian anomaly (mis-formed uterus). Basically, I only have half a uterus that is connected to 1 Fallopian tube and 1 ovary. Something went wrong and the other half of my uterus did not form as I was developing. It happens very early on in embryo development. Apparently, it’s the most rare of all the uterine anomalies, occurring in 1/4000 women. Women with this anomaly have poorer pregnancy outcomes according to my research.

My RE confirmed that it’s a right UU at the hysteroscopy, and the tissue they removed did not show a polyp (although it showed some “necrotic” tissue, which he is unsure about and wonders if it’s left over from the last miscarriage). At our follow up he said this is no reason I can’t get pregnant and carry a baby to term. He still believes that the miscarriages are due to my egg quality and not my uterus. So apparently if we catch a good egg, then things should be good. However, now I only have a chance to get pregnant naturally if I ovulate from my right ovary, as the right side is actually connected to my uterus.

There are a whole host of other issues that come with a UU. The most notable for TTC are pre-term labor and IUGR because the baby runs out of room to grow since the uterus is not a normal size. So in the exciting event I can catch a healthy egg, I will have lots of other high risk pregnancy fun to deal with. And of course there are no guarantees that my uterus isn’t to blame for the miscarriages due to poor blood flow or something along those lines. Also, those with a UU also have a 50% chance of only having 1 kidney. I had an MRI that confirmed the UU and that I have 2 ovaries, 2 kidneys, and no rudimentary horn (meaning the remnants of the left side forming were not visible).

So what’s the plan? For now, my husband and I are continuing to try naturally since I have been getting pregnant. My RE suggested IVF with a single embryo transfer (as with my half uterus, the risks with multiples are very real and much more pronounced). I have a second opinion and two other IVF seminars in my area next month so I can pick a place for IVF that I am comfortable cycling with. IVF is completely out of pocket wherever we go, so I want to make sure the clinic is reasonably priced and puts its patients individual situations first.

Our first IVF consult was with Kai.ser and while I loved Dr. H, I am not wild about doing it there because they cycle their patients at the same time and only use 3 protocols. I’m worried with my DOR that I may need a more individualized approach and I am scared to go on birth control for the 2.5-3 months before the stims start. I took it just now for 6 weeks prior to my polyp removal and my ovulation this month is super delayed. I’m scared it’ll cause me to be a poor responder. Dr. H also confirmed that he believes my miscarriages are due to my egg quality, and he thinks I can have a successful pregnancy with the UU.

I am glad to have more answers as to why things are not going my way, as I believe more information will help us achieve our goal to have children. I was saying to a friend that I can make peace with donor eggs, surrogacy, or adoption, but I cannot imagine a life without children, so I’m on this roller coaster for the long hall. We are not done trying with my eggs or uterus yet.

Happy 2016 everyone. I hope we can all realize our dreams this year. Let me leave you with a sign I found. I am learning to embrace everything about my body, and since I now know about my UU, I have to learn to love it. 

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9 thoughts on “I am a Unicorn

  1. EmilyMaine

    There is definitely a relief that comes from a diagnosis but I am sorry there has to be something funky going on for you. Are you in the states? If so maybe look into Dr Braverman. As far as I know he will tee up with a local clinic for you. He seems to have experience with specialised situations of the uterus which is why I mention him. Hoping 2016 brings you your dreams xx

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  2. Nara

    Wowsers. I guess it’s satisfying in a way to find out what the reasons might be (you’re a unicorn – awesome!) but frustrating that this might lead to difficulties down the line. I hope that everything works out for you this year!

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  3. Recurrently Unlucky

    I’m glad you advocated for yourself and got the hysteroscopy done and found this out now rather than later. Even though it can complicate things, now you know about it and can be careful during treatment or pregnancy.

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  4. unicornlife3316

    I am also a unicorn. Diagnosed in 2013. Left side, no rudimentary, 2 kidneys and now a healthy 4 month old. If you haven’t yet – find the group on Facebook (Unicornuate Uterus- I was born a unicorn) — amazing group of women.

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    1. RJ Post author

      Congrats on your healthy baby! I got rid of Facebook several years ago but I have thought about getting back on it just for something like this!

      Thank you for commenting, it’s always great to hear from fellow unicorns! Hope everything is going well for you and your family!

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      1. unicornlife3316

        I’ve been off Facebook for a month now. I miss my girls & my support group but definitely needed to disconnect for a bit.
        Everything is great! Baby girl is 5 months tomorrow!
        Hope you are well!

        Liked by 1 person

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