Just Outside the Norm

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Warning:  this gets a tad bit personal (and girlie)…

I was 19 when I learned that I have what my dad calls; “double plumbing”  doctors call it Uterine Didelphys (UD).  While there is some debate as to whether I have a Septate Uterus and not a didelphic one.  Some say I have a form of Bicoranate Uterus.  Turns out I have a uterus like no other in the world!! Confused yet?  Let me explain…

I was born with two uteruses (or uteri) with only one fallopian tube and one ovary on each, two crevices and well, two of everything.  Nobody can explain the exact cause and there are many theories out there that try to link this condition to drugs given to pregnant women in the 70’s, which my mom didn’t take, genetics, or random chance.  No matter what the cause, it is rare.  Statistics vary from 1 in 1,000 women having this abnormality to 1 in 2,000.  Since during my last C-sections they learned that mine was different from all others I guess my statistics are yet unknown!  The statistics are rocky because some women may go almost an entire lifetime without ever knowing.  I can speak of one women I know who found out in her 40s after having three children without complication.  In some women, the vaginal septum is small or non-existent, they get pregnant in one of their uteri without issue and the uterus not in use simply squishes to the sidelines, never to be seen on an ultrasound.   In other women their vaginal septum is so thick that intercourse is painful and they learn about their condition early on and elect to have the septum removed.  Some women have no septum but have trouble getting pregnant and/or carrying babies to term.  (statistics I have found say that women with this UD have a 40% chance of miscarriage) After seeking out a specialist for their suspected infertility they discover their UD and deal with the issues from there.

And some women are like me, I suspect…

After years of horrible periods, extreme sickness and overall nasty menstruation I found out the cause.  When most girls were suffering from bad cramping I was suffering from two periods at once.  For those women out there reading, I m sure you are cringing.  Yes, it was/is awful! Finding out I had an abnormality that essentially gave me two periods at once explained a lot actually as to all the discomfort and school missed from simple periods.  But left me wondering what this meant for me in the years down the road when I wanted to have kids.  For the time being I left it at that and went on with my life.  Content in knowing I wasn’t a wimp, but did in fact have a reason to complain during my time of the month.  Geez…I was having two periods!

Then I met my husband Tim, and we were ready to have kids.  I went to my regular OB who was not, how shall I put this…knowledgeable.  She was nice, and I am sure had the best intentions.  I just wish she would have done some more research on my condition before talking to me or even better, told me that someone with such a rare condition was outside of her league and that I would now need to see a specialist.  Instead she fed me all the awful statistics that one finds online when they do a blanket search.  Here I was engaged, sitting in her office listening to her tell me, “the chances of you getting pregnant naturally are slim, it will take at least a year of trying before we look into IVF options, once you are pregnant you’ll have a 40% chance of miscarriage and will probably be on bed rest for the majority of your pregnancy.”  I was devastated and drove home alone, crying.

Tim and I, given the roadblocks we thought were ahead of us, started trying to concieve soon after we got married, thinking that it would take a while.  Three months later I saw the line – I was pregnant.  But before I could even make it to me first prenatal appointment I what they call a spontaneous miscarriage (Doctor speak for “sorry, but this happens sometimes and we don’t know why”  This is when I removed myself from my old doctor’s care and found my own group of high risk doctors to better suit my unique needs.  They got me an appoint immediately and determined on a Thursday that the miscarriage was complete, and encouraged me to keep trying.  Reassuring me that they have patients with my exact abnormality and some of them have never had one issue in regards to pregnancy.  It was about a week later when I felt strange and compelled to take a pregnancy test.  Low and behold, another line!  Back to the doctor I went.  I was now pregnant in my right uterus (I had the miscarriage in my left) and things were looking good!  Kennedy Lynn was born 39 weeks later, via planned C-section, because she was breech.  She was perfect, and life was great!

A couple of years later we tried again, this time getting pregnant in my left uterus.  This is when we learned that the right uterus was a much better home to a growing fetus than the left.  The pregnancy was easy up until the middle of the night before my 30th birthday.  My water broke at 30 weeks and so I moved into the hospital where I would be until I went into labor at 32 weeks.  Addison Kay, despite being in the NICU for a month to learn to eat, grow and get stronger, is now a thriving 2 and a half-year old.

Still with me?  So we are up to two uteruses, and two kids!  So far!

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13 thoughts on “Just Outside the Norm

  1. Mandie Bray

    Ali – I finally took the time to read your blog. I have the same “plumbing” !!! Go figure! When it comes time for me to need one, I’ll have to ask you who your doctors are my normal doctors just say it’s so unique they’re not sure about anything.

    I’m glad the kids are all doing well and you too.

    • acamp09

      How interesting! Yes, you will have to talk with me – the Doctors make all the difference! I have a friend who had one removed so to speak and then had no problems after that, nobody ever offered this to me. They just don’t know what they are dealing with.

  2. Debbi Spencer

    Just started reading yur blog, Ali. You’re doing a great job with the writing and I am praying for your family and especially the boys. Your blog about what strength is sounded so much like what Amanda went through when Ty was diagnosed. she said the same thing-everyone said she was so strong and didn’t know how she could deal with it all-and she said it wasn’t as if she had a choice, you do what you have to do. God provides the strength! Perspective kept her grateful too-a coworker had just lost a 2 year old child-that was one of her first perspective/grateful moments.
    I can’t believe your mom has been gone a year already. I’m sure you miss her even more with what you’re going through now. You’re making her proud! God bless you, hon.
    Debbi Spencer

  3. Colleen Jones

    Alison,
    Your cousin Melissa’s mom Cathi shared your story with us. Your babies are in our thoughts and prayers. I will be sure to you them and your entire family in my thoughts and prayers each and every day! Be strong and do take care of yourself too.
    Colleen

    • acamp09

      Thank you so much – it is very comforting to know that so many people are praying for our boys. The prayers are working not only for them but to keep us going as well. Alison

  4. Sheila Sampson

    Hi Alison,
    Found your blog through Amie Rose and I graduated with Jim. I have the Bicoranate Uterus and ended up losing twin boys at 23 weeks, both were in the same horn of my uterus. They lived for a few hours. I saw every specialist imaginable and we are blessed with a son and daughter both healthy 36 weekers. No luck getting my septum removed but had a very lopsided belly during my pregnancies. Your story brings so many emotions back but I’ve been thinking of you daily and hoping those little men are strong little fighters! Praying for you!

  5. Stephanie Sorenson

    My sister led me to your blog because I have the same thing. I’ve been told they are pretty sure it’s didelphys, but they aren’t 100% sure. It could be bicornate. I also only have 1 kidney, which is due to the anomaly. Like you, I had horrible cramping and would throw up each month during my period; I didn’t know, until I read your blog, that my “uteri” was probably to blame for that! It didn’t get better until I was put on birth control pills.
    I didn’t find out about my condition until I wanted to get pregnant for the 1st time. Like you, I had a horrible experience because the obgyn told me he wasn’t sure what it was, but it wouldn’t do any good to find out because it didn’t change my chance of getting pregnant. I did end up getting pregnant right away, and he treated me like a normal pregnancy. The only thing difference was he sent me to a specialist at 16 weeks to make sure my cervix wasn’t opening. SHE answered a lot of my questions and led me to believe it was didelphys. After doing my own research, I expressed my concerns, which he dismissed/ignored. I actually carried my daughter to full term and was overdue. He induced me and said he would check on me when I was dilated to a 6 to see if I would need a c-section. I pushed for 2 HOURS before he came in, and it turns out the baby couldn’t be delivered because of my septum, which I didn’t know I even had! He had to cut out the septum very quickly and deliver her. I had stitches inside and out. Needless to say, I didn’t go back to him.
    During my 2nd pregnancy, I found a wonderful doctor who was knowledgeable and kind. However, I started dilating at 25 weeks. I was immediately put on an 11 week bed rest. Because of my condition, everything was up in the air about how the pregnancy would continue. I was dilated for a month at 1, another month at 3 and the next month at 5. And believe it or not, I sat at home for a month dilated at a 5! After 7 trips to the hospital to be monitored, he was born only 3 weeks early! I went into labor only 1 hour after I was officially off bed rest. I know how blessed I am to have 2 successful pregnancies with this condition. I think I beat the odds two times! But I honestly feel that the first doctor put my second pregnancy in trouble when he cut out my septum; I think that is what held my first baby in there.
    I’m so glad to find somebody who has the same thing! I often feel like a freak when I tell others about it. I know my daughter doesn’t have it because they checked her during an utlrasound when I was pregnant. Thank you for sharing your story and I’m so glad to hear your boys are doing well!

    • acamp09

      Stephanie,
      I’m so glad you found me. That is partly the reason I started this blog. I scoured the ijnternet looking for others and informatiokn when I was going through everythinng. I know someone who had her septum removed (in utero septum I believe) because she was having miscarraiges and has since carried two pregnancies to term. A specialist at the hospital wher I delivered was surprised nobody ever suggested this to me. She seems to think that ot could have prevented some prematurity. My stumbling block iss that no doctor really knows. They assure me they have dealt with this before only to find out that isnt completely true as every woman like us is different. Thank you for contacting me. Best wishes! Alison

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