Friday, February 26, 2010

Unicornuate Uterus (UU) + part of my infertility story

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.

See what everyone else is posting at Mel's Show and Tell


  1. Wow, thank you for sharing your have definitely been on a long & difficult journey. You're so great about finding the positive in everything, that is wonderful they were able to find the cause of your pain & I'm so glad you aren't experiencing that anymore. Continuing to pray for you on your journey:)

  2. Thanks for letting us in on this aspect of your life. So glad they found what was wrong - and so great of you to find the silver lining in infertility - what else would we expect from Find Joy Now? :)

  3. Thank you for sharing, when I first started I had an HSG to determine if I had UU as well (turns out I didn't) but I at least knew what you were talking about!!! Hoping and praying the day that baby jumps in there with the unicorn eating a banana (favorite part of the story...) will be very very soon!

  4. I am sorry for all that you have been through. Your strength is amazing. I am glad to hear that your surgery is a success and you are no longer in pain. I wish you the best moving forward!! Happy ICLW!!

  5. You really have been through it. But it sounds like you have made amazing progress. Thank you so much for sharing your story - hoping for great success soon.

  6. Hi thanku sooo much for telling us ur story because its sooo much the same as im going through, i have uu! i was in pain for yrs at least 10 yrs anyway, i hat to have ivf in 2010 it work first time i feel soo lucky but i have had so many problem's im still surrering now well over a yr later. i would love to tell u my story?
    keep positive.
    christine :D

  7. I have been TTC for 2 yrs recently diagnosed with UU. Any one can tell us of a success story of having babies with UU?pls advise . Am in tears day and night.

    1. I was diagnosed with UU in 2006 and had a baby boy in 2007 with the help of IVF
      I was closely watched but had a successful full term delivery. Everyone is different but it can happen.

  8. Thank you so much for sharing your story. I have been dealing with the same debilitating pain for 16 years and have always been told to take a vicodin and a nap, change my diet, and that was somehow supposed to be a miracle cure. Having doctors think you're exaggerating is so frustrating, and after 16 years I was starting to think maybe I was making too much of it. Your story sounds like a script of my life right now (HSG, MRI, ultrasounds, etc) but I am grateful to have finally found a doctor who knows enough to truly care about his patients and be willing to really investigate the symptoms. I was just diagnosed with UU and they are talking about surgery and then IVF as well. It's pretty nerve-wracking, but to know someone else had success with surgery and pain relief is keeping me motivated to push forward. Yours is the first story I read that sounds anything (and everything!) like what I'm going through. Thank you for sharing and letting the rest of is with UU know there is hope and we're not alone! Good luck to you!

  9. Thank you for sharing your story. I actually found out that I only had half a uterus, one fallopian tube, one ovary, and one kidney when I was in high school. I have been pregnant twice since I found out but lost both of them at about 12 weeks. I usually get bad pain around my period for the first couple of days and did not think that it might be possibly related to UU until I read your blog. My husband and I have been trying to conceive for a few years now but have not succeeded. I wanted to thank you for sharing your story with everyone because now I actually have a starting point for dealing with my doctors. (as a side note: around the same time that I found out all my stuff my mother also found out that she was the same way, she had 8 miscarriages, one still born and then had my older brother and I. So even with a condition like this at least people can know that miracles are possible)

  10. Thank you for sharing your story. I was diagnosed with UU after an emergency C section to save my baby girl. She passed away after 24 days of life, she was born at 30 plus 6 days. After my section I tried to wrap my head around UU with my rightsided rudimentary horn and I am upset that I may not carry to term or ever carry a baby at all.

  11. i to broke the mould when i was born, like you i have a unicorniture uterus but with one kidney. all missing on my left side. I dont have any children. I was 37 when diagnoised. like you i spent years going to doctors who really didnt care. Chin up girls

  12. I was diagnosed with a UU when I was 36 weeks weeks pregnant with my daughter. Rushed in for an emergency c after a u/s identified IUG, very low fluid and 2/8 on the BPP - very scary. I am very very lucky that my little girl is a healthy strong and big 6 year old girl. I then got pregnant again 12 months later and gave birth via c/s to a breech but otherwise very healthy little boy at 39 weeks. I then got pregnant a 3rd time - lucky lucky me!!! But at the 13 week u/s learned our sweet angel was conceived in a non-communicating rudimentary horn :( Was rushed in to surgery hours later to have the pregnancy terminated, the right horn and right tube removed. It has been a year of trying again and this time I can't get pregnant. I too had debilitating pain that has stopped since having the right horn removed. But still have very very painful ovulation. Anyone else experience this?
    Wishing all of you UU ladies out there all the best in your journey - whatever they may be. If I have one word of advice it is to have the rudimentary horn removed before you suffer the heartache of terminating an otherwise healthy pregnancy! All the best!

  13. Wow, reading your story was like reading about my own life! I had years of unexplained pain on my right side, a doctor actually took out my appendix thinking that was the culprit. Once my husband and I decided to try for kids, we got pregnant immediately. My baby was breech and pregnancy was very uncomfortable towards the end, my water broke at 37 weeks and our very healthy baby boy was born via C section. It wasn't until years later after trying to conceive baby #2, that we found out I have a UU. After the HSG test and hearing my doctor say unicorneate uterus, I actually said the same words as you..."what? I have a unicorn in my uterus?" I ended up having surgery to remove the undeveloped fallopian tube and communicating horn. I have both ovaries and kidneys. It has been a heartbreaking struggle to get pregnant again, considering how easy it was for us the first time. We have been through 4 IUIs and just found out a few days ago our second attempt at IVF failed. I will not give up hope, everytime I look at my son, I pray there is still a chance he can someday have a sibling. Good luck to all of you out there...just knowing I am not alone give me comfort and strength.

  14. This is my exact story! But I was told that if they remove my left side that it would make it even more difficult to get pregnant. Is this true? Can anyone give me the name of a doctor that can actually help?