# I have a 'Unicornuate Uterus'!



## jewlia88

Hi All! 

After several years of severe period pains and a recent hysteroscopy and laparoscopy - I've been told I have 'Unicornuate Uterus' (UU) [was told 24 hours ago]. I have only one kidney. I was explained that kidney and uterus is linked - so if something is wrong with the kidney the uterus is affected. 

I have been reading up on UU. I'm just in shock at the moment - not really sure what to feel or how to react. 

I would love to hear from anyone who has been diagnosed with UU =)


----------



## Tinks86

Oh Hun - sorry to hear that. 

Sending you huge hugs x


----------



## Dimples81

:hugs:


----------



## comotion89

sorry to hear that never heard of that before so cant help ive got a retroverted uterus thats about it :D


----------



## cocosmum

i have a Bicornuate uterus which is a heart shaped womb and i'm not sure if it was the cause of my problems in giving birth but its something i need look into. it did make me very big less space and everything.
some times reading on google etc can cause you more worry than you need cause you tend to hear of bad stories best person to talk to is your doc hun. 
good luck i hope all isn't as bad as you think it is.
this one seems to say that a healthy pg is poss https://en.wikipedia.org/wiki/Unicornuate_uterus


----------



## Kerjack

:hugs:


----------



## jewlia88

cocosmum said:


> i have a Bicornuate uterus which is a heart shaped womb and i'm not sure if it was the cause of my problems in giving birth but its something i need look into. it did make me very big less space and everything.
> some times reading on google etc can cause you more worry than you need cause you tend to hear of bad stories best person to talk to is your doc hun.
> good luck i hope all isn't as bad as you think it is.
> this one seems to say that a healthy pg is poss
> 
> 
> I agree! I think I have been reading too much!! I have really started making myself paranoid. Was reading statistics on stillborn and miscarriage rates and they are really hard! Not too sure if I am strong enough to even start or bother!


----------



## everdreaming

:hugs: Google can be a terrible thing - I'm always on google reading up on how women who have similar problems to me are unable to have children and it terrifies me. Each woman is so individual and different, and despite this obstacle you may well be able to have a healthy baby with no difficulties :hugs:


----------



## fabi_re

Dear Jewlia, 

I have Unicornuate Uterus. It was first diagnosed as bicornuate uterus by ultrasound. I got my positive in 2007 and was a healthy pregnancy. My daughter born at 36 gestacional weeks, 2.8 kg and 47cm, cesarian section with no complications. My doctor examined my uterus and told me it was not bicornuate.

When I was TCC my second baby i did the HSG and was finally diagnosed UU. The left cornu was normal and the right cornus was rudimentary and noncommunicating. Unfortunally I got pregnant in the rudimentary cornu, what was confirmed by MRI. Because of the imminence of rupture of the gravidic rudimentary cornu, my doctor decided to terminate the pregnancy at 14 weeks. I was a very dificulty to me, but there was no chance for me or my baby. In the surgery my doctor preserved only the left cornu.

I have 2 normal kidneys e 2 ovaries.

Ps: English is not my native language, so I sorry for any errors ;-)


----------



## sarah1989

Sending BIG :hugs: to you!! :hugs: :hugs: :hugs: 

I was diagnosed a little over a year ago with a Bicornuate Uterus (heart shaped). I remember feeling in shock when I was told the diagnosis, and it did take quite a bit of time to come to terms with such big news. I went through so many different emotions, and at one point didn't want to talk to anyone, especially my DH, because I felt broken and like I was letting him down. After a couple days of not talking to anyone, I finally came to my senses and just opened up completely to him and realized that he too was emotionally affected by this, but re-assured me I was not alone and that we could get through this together. 

All I know is that googling things can sometimes make your mind race, wonder and worry more than you before, I know it did for me. Your should try to contact your Doctor and ask if s/he is able to sit down and talk to you about it, so that all your questions are answered. I know getting the facts was a lot of help for us, and gave us hope for a better tomorrow.

If you ever want to talk, feel free to pm me, I am always willing to listen.


----------



## jewlia88

Hello, 

So sorry for the late reply. I thought I would get email notifications when someone posted. It's such a emotional overload - it's hard to talk about it with my partner because to him, it's ok - I'm healthy & all will work out. However, I am mote of a realist.

How did your partners take the news? Were they supportive?


----------



## sarah1989

jewlia88 said:


> Hello,
> 
> So sorry for the late reply. I thought I would get email notifications when someone posted. It's such a emotional overload - it's hard to talk about it with my partner because to him, it's ok - I'm healthy & all will work out. However, I am mote of a realist.
> 
> How did your partners take the news? Were they supportive?

Hey Hun,

In the top right of your post, it will show thread tools, there you can choose your subscription type so you can get emails if you want.

My DH has been pretty supportive, and says if it is meant to happen (conception that is) then it will. He hasn't said much to me other than that, but is always there for me when I have a breakdown about not having children. He seems quite like your partner, and says I am healthy and that it will work out. 

:hugs:


----------



## angiepie

everdreaming said:


> :hugs: Google can be a terrible thing - I'm always on google reading up on how women who have similar problems to me are unable to have children and it terrifies me. Each woman is so individual and different, and despite this obstacle you may well be able to have a healthy baby with no difficulties :hugs:

I heartily concur. Every time I have a mild symptom of anything, I head straight to Google and think I'm gonna die. :\ And I've convinced myself my chances of getting PG are slim because of PCOS, when there are far more serious conditions out there!


----------



## Justme0611

Hi all! I am so happy to find a site like this and to know I'm not the only one with UU. Here is my story: I have only been pregnant twice in 9 years neither of which were planned and both pregnancies were unsuccessful. My last pregnancy was in 2008 everything appeared to be normal until I was 6 months along and I go into preterm labor. I went to the hospital and within 10 minutes of me being there my water broke. They told me I was in preterm labor and there was not really much they could do for me. They were aweful and I can remember asking a nurse a question and she replied back to me "it doesn't matter anyway your baby is going to die"! They ended up life flighting me to Houston where they tried everything they could to keep the baby in as long as they could. The next day they performed an emergency c-section and my son did not survive. When they did the c-section they were able to tell I had a UU but I was never told. After a year had passed my husband and I decided to TTC. We tried for a year before going to a doctor to find out if something is wrong. After many tests it was determined that I had UU. I felt crushed! After my doctor found out that I had UU she told us that it would be unethical for her to try to help us get pregnant but if we were ever able to get pregnant she would be more than happy to see us again. I went home just sobbing because I felt like we were never going to be able to have kids. I was never really informed in great detail about UU. I have seen a lot of posts with women who have UU that have almost completly have had normal pregnancies. I have been TTC now for almost with no luck yet and to be honest it gets depressing! I would love to hear from someone that has UU. 



jewlia88 said:


> Hi All!
> 
> After several years of severe period pains and a recent hysteroscopy and laparoscopy - I've been told I have 'Unicornuate Uterus' (UU) [was told 24 hours ago]. I have only one kidney. I was explained that kidney and uterus is linked - so if something is wrong with the kidney the uterus is affected.
> 
> I have been reading up on UU. I'm just in shock at the moment - not really sure what to feel or how to react.
> 
> I would love to hear from anyone who has been diagnosed with UU =)


----------



## mischa9

Hello!!! I was diagnosed with a Unicornuate Uterus last year. I have two ovaries, but only one fallopian tube. I have a small piece of uterine tissue that is not connected to anything that is next to my UU (weird) and everything is covered in endometriosis. I got the news after I woke up from having a laparascopic appendectomy - and a misdiagnosis of appendicitis. Better safe than sorry I guess. 

The doc woke up me, gave me the run down and said I probably won't ever have children. My "lovely" sister spoke up and said "Oh, she'll be fine with that, she doesn't want them anyway!" I couldn't even respond. I just cried. I felt like I fell into the deepest darkest whole of nothingness. The next few weeks, all I did was research on UU. I even did an entire paper on it for my nursing program. I was obsessed with it. 

At the time, I had a boyfriend of about a year. We hadn't had sex and we waiting for marriage. In April 2011, we got engaged and October 1, 2011 we were married! We wanted children very badly and we knew what we were up against. I bought an ovulation kit, we scheduled an appointment with a fertility clinic and we were ready to go. 

October 9 I had some spotting. I just thought maybe I was starting early. Two days later, I couldn't keep anything down and I was exhausted. So, just for fun, I grabbed a pregnancy test out of our ovulation kit .. and it was POSITIVE!!!!!! I just stood in the bathroom for what seemed like forever. I paced, I shook, I cried, and then I ran out to my husband on the couch and said "So ... there's two lines here. How about that?" He smiled the biggest smile I've ever seen!

So far, everything has been ok. The doctor isn't too concerned about my first trimester. He is concerned with my second and third though. He thinks there may be a need for a cervical cerlage, a potential for bed rest, and a risk for preterm labor. The first ultrasound was last Monday, and there was nothing there - so of course, I freaked. He said it was way too early to see anything, but my endometrium was thickened, my breasts are sore, and I'm exhausted. He was pretty satisfied with all of that. 

I go back next Monday for another ultrasound. This time, there should at least be yolk sac. I'm so nervous and so hopeful that everything goes right! Everything I've read says it's so rare, and when and if a woman with a UU gets pregnant, it's a high risk for miscarriage and preterm labor. So, we are hoping and praying. 

The whole point of my little story is to encourage those of you out there with this diagnosis (or any thing else for that matter) to not give up! We had prayed about it for a long time before the wedding. I got the Lupron injection (to help with the endometriosis) and we stayed positive. The doc said I must have gotten pregnant the day of or the day after the wedding. In our opinion, it was God's gift to us. It was completely perfect!

So ladies, please, go to the doctor, do your research, but don't ever take someones word for 100%!! There is no such thing as "NEVER" .. unless of course you have no ovaries and uterus. Please don't stop trying, try to stay positive and just know that when it's supposed to, it will happen!!


Melissa


----------



## fabi_re

Mischa, good luck for you!
Bring the news next week!


----------



## mischa9

Sorry for the sad news ... Yesterday I lost the baby.


----------



## everdreaming

:hugs: :hugs: :hugs: I'm so so sorry for your loss :hugs:


----------



## fabi_re

Mischa, I am so sorry....
But at least now you know you are able to conceive...the doctor was wrong and you can have hope you will have your baby soon.


----------



## Quackquack99

Hi there I found out I had a unicornuate uterus after my c section. Can I just say, I made it to 39+5 so I was so close to my due date. The risks with a uu is baby is more likely to be breech, preterm labour and I think the miscarriage risk is slightly higher. I know its hard not to worry but it is possible to have a baby.


----------



## randomma

:hugs:


----------



## Alisa F

Justme0611 said:


> Hi all! I am so happy to find a site like this and to know I'm not the only one with UU. Here is my story: I have only been pregnant twice in 9 years neither of which were planned and both pregnancies were unsuccessful. My last pregnancy was in 2008 everything appeared to be normal until I was 6 months along and I go into preterm labor. I went to the hospital and within 10 minutes of me being there my water broke. They told me I was in preterm labor and there was not really much they could do for me. They were aweful and I can remember asking a nurse a question and she replied back to me "it doesn't matter anyway your baby is going to die"! They ended up life flighting me to Houston where they tried everything they could to keep the baby in as long as they could. The next day they performed an emergency c-section and my son did not survive. When they did the c-section they were able to tell I had a UU but I was never told. After a year had passed my husband and I decided to TTC. We tried for a year before going to a doctor to find out if something is wrong. After many tests it was determined that I had UU. I felt crushed! After my doctor found out that I had UU she told us that it would be unethical for her to try to help us get pregnant but if we were ever able to get pregnant she would be more than happy to see us again. I went home just sobbing because I felt like we were never going to be able to have kids. I was never really informed in great detail about UU. I have seen a lot of posts with women who have UU that have almost completly have had normal pregnancies. I have been TTC now for almost with no luck yet and to be honest it gets depressing! I would love to hear from someone that has UU.
> 
> 
> 
> jewlia88 said:
> 
> 
> Hi All!
> 
> After several years of severe period pains and a recent hysteroscopy and laparoscopy - I've been told I have 'Unicornuate Uterus' (UU) [was told 24 hours ago]. I have only one kidney. I was explained that kidney and uterus is linked - so if something is wrong with the kidney the uterus is affected.
> 
> I have been reading up on UU. I'm just in shock at the moment - not really sure what to feel or how to react.
> 
> I would love to hear from anyone who has been diagnosed with UU =)Click to expand...

I've also got UU, got pregnant first try but then lost my boy at 25wks+2, I had a similar situation as you in so far as it seemed to me that they did absolutely nothing to save my boy. 

We have now been TTC for around 9 months but each month i have ovulated from my non-communicating side so no pregnancy. We are calling to make the IVF appointment tomorrow. 

I was told in future pregnancy I would need a cervical stitch as UU is generally associated with weak cervix (mainly cos i dilated so quickly though) and most likely c-section as babies dont have much space in UU to turn so tend to be breech (my boy was footling breach, they couldnt turn him - attempting tuning a baby is very dangerous but they didnt know i had UU at that stage). 

There is a great support group with more success stories than bad stories - UUSisterhood on yahoo groups.


----------



## fabi_re

Alisa F said:


> I've also got UU, got pregnant first try but then lost my boy at 25wks+2, I had a similar situation as you in so far as it seemed to me that they did absolutely nothing to save my boy.
> 
> We have now been TTC for around 9 months but each month i have ovulated from my non-communicating side so no pregnancy. We are calling to make the IVF appointment tomorrow.
> 
> I was told in future pregnancy I would need a cervical stitch as UU is generally associated with weak cervix (mainly cos i dilated so quickly though) and most likely c-section as babies dont have much space in UU to turn so tend to be breech (my boy was footling breach, they couldnt turn him - attempting tuning a baby is very dangerous but they didnt know i had UU at that stage).
> 
> There is a great support group with more success stories than bad stories - UUSisterhood on yahoo groups.

Alisa,

I also had UU with a non-communicating rudimentary horn.
I tried to conceive my second baby for 17 months.
My doctors told me it was impossible to get pregnant in the non-communicating side.
But I got pregnant there. I ovulated in the non-communicating ovary e the embryo implanted in the rudimentary horn. It happens by transperitoneal migration of spermatozoa.

I wish I was warned of the risk of ectopic pregnancy (cornual pregnancy) while I was TTC...but it didn't happened...
I got pregnant inside the right horn, which really was rudimentary and noncommunicating. It is considered an ectopic pregnancy (cornual pregnancy), with no chances to the fetus and high maternal mortality. 

My doctor decided to terminate my pregnancy at 14 weeks, because of the imminent uterus rupture. My baby was still alive when I was submitted to the surgery and believe me, it was very very difficult to me to accept there was nothing I could do to save him...if I kept trying we both would die, so "the best" to do was save at least my own life and don't let my girl be an orphan. It was a very dangerous surgery. It happened 9 months ago and I still miss my baby boy everyday.

Now I know the correct procedure in our case is to do the excision of the non-communicating shorn by laparoscopy before initiates the TCC. Its a very simple and quick procedure.

Besides the rarity of the condition (cornual pregnancy) in the "normal" population, it is relatively common to women who have non-communicating horn. It happened to me and can happen to anyone who have the rudimentary horn. I dont want to anyone to feels the pain of losing a baby as I did. 
That is why I am sharing my experience. And if you want to get pregnant I strongly recommend to look for another medical opinion and information about the rudimentary horn excision.

I hope you understand my worry and good intention.

Best wishes,
Fabiana

(sorry for the English, it is nor my native language)


----------



## Alisa F

FABIANA - I'm so sorry for such a late reply but i didnt see your message until now. I'm so sorry for what you went through, my heart breaks for you I just hope you are doing better now. 

I was told that there is no way I can have an exopic pregnancy becuase my rudimentary horn is non-communicating i.e that there was no fill into the fallopian tube when they injected the blue dye. So that means sperm cant get in there and therefore cannot have a pregnancy in the tube. Also the undeveloped side of my uterus doesnt have any endometrium lining therefore an embryo cannot implant there. 

I asked doc if egg/sperm/emryo can enter from my good tube and then travel out into the rudimentry tube/horn and she said no thats impossible and something along the lines that i would die first before getting pregnant if that happened (that doc was a corrible cow of a woman, not good with people, but she is considered one of the best with this in the UK so i believe her). 

As i said you should join UU sisterhood yahoo group if you havent already. 

Wishing you all the best
Alisa xxx


----------



## fabi_re

Alisa, I heard exactly the same diagnostic: it was IMPOSSIBIBLE to me get pregnant in the rudimentary horn because it was *non*-communicating. Both the horn and the fallopian tube were not filled with contrast when I did the Hysterosalpingography and the noncommunicability was confirmed surgically (the rudimentary horn was totally independent from the other cavity, attached only by a fibrous band). 

I also asked my doctor if the sperm could get there using the other tube and she said NO. 
Actually, I looked for 3 different doctors before get pregnant (one of them is a specialist internationally recognized in human reproduction). All of them said it was impossible to get pregnant in the non-communicating rudimentary horn.

But, it is not impossible, it happened to me. If you read this article you will see that exist the event of transperitoneal transmigration:

_Preventing ectopic pregnancies: how often does transperitoneal transmigration of sperm occur in effecting human pregnancy?_
Gerard G. Nahum, Harold Stanislaw, Connette McMahon


According to the study, the chance of pregnancy occur in a *non-communicating* horn of unicornuate uterus is 50%, very high as you can see! 
Of course it's rare in the normal population, because the unicornuate uterus is a very rare condition. But ectopic pregnancy is common inside the group of women who have the malformation.


I don't have the images of exams here at work, but I can post latter the image of the HSG and MRI if you want to compare.

Best wishes, Fabiana


----------



## LubLub

Sending you hugs 
Xo


----------



## fabi_re

Alisa,

As I promised, this is the HSG image:

https://img827.imageshack.us/img827/3257/histero.jpg

As you can see, the contrast material only passed through the left uterus and left fallopian tube.
I got pregnant in the right uterus and ovulation was in the the right ovary confirming the sperm migration.

This is the MRI image:

https://img593.imageshack.us/img593/7237/mri1.jpg

As you can see, the uterus at left is totally separated from the right rudimentary horn (which was mobile and went up on to settle in the abdominal cavity).


I do not want to scare you ... I'm just doing what I wish someone had done for me, to spare me the greatest pain of the world (losing a baby). I wish I have had at least an option of remove or not the rudimentary horn...


----------



## fabi_re

Alicia, I know the name of 3 doctors that have some experience in rudimentary horn pregnancy in London. They are:
- Dr Rehan Salim
- Dr Davor Jurkovic
- Dr Dimitrios Mavrelos


----------



## Alisa F

I'm so glad you told me , thank you. I am feeling really let down by doctors lately because they tell you things with all certainty and then they turn out to be wrong. How can you tell if you are pregnant in the noncommunicating horn and how soon? I'm hopefully starting IVF in next couple of months and if i get pregnant i want to make sure its not ectopic. 

alisa x


----------



## fabi_re

Alisa,
If you already have the diagnosis of unicornuate uterus, it's possible to tell if the pregnancy is in the rudimentary horn as soon as it's possible to see the gestacional sac by ultrasound (at 5 or 6 pregnancy weeks).

I was diagnosed at 6 weeks 4 days by transvaginal ultrasound. The embryo was at right side. As I knew the right sided uterus was rudimentary and non-communicating, It was immediatly obvious something was going wrong.

At 14 weeks doctor did the MRI to verify the conditions of the uterus and was by this exam that we realizaed the uterus wall was too thin (2mm) and could rupture at any time.


I think it's much more safe get pregnant by IVF, cause the embryos will be put directly inside the good uterus, and will implant very fast. I think the chance of migration to other side is smaller than conceiving naturally.

How many embryos are you going to tranfers by attempt? 
When I was trying to conceive I thought about ovulation induction and IVF. I think it's a good idea, but you should avoid the risk of triplets, maybe transfer 2 at each time if doctor believe it can be successful.

Best wishes! I hope you get your baby soon!


----------



## Alisa F

Fabi - Doc said he would only transfer one embryo becuase of the risk with multiples. I agree with him and although i wish i could transfer 2 (i would love if it was possible to carry twins) i will not risk it. We saw the doc yesterday and I will start stimulation drugs this Sunday or Monday (day 2 of my cycle) so should know in a month or so if the IVF has been successful.... I'm cautiously optimistic....


----------



## fabi_re

Alisa, I am sure you will bring good news soon!
I agree with the doctor. Tranfer one embryo is much more safe for you and the baby!


----------



## chocolatecat

Hello ladies,

Now that I'm 12 weeks (one milestone out of the way) I'm starting to get worried about my UU. I'm trying to focus on the people with postive outcomes, and I hope that with the long journey we've had to get here somehow fate will let us keep this baby.

The FS always said I had unexplained infertility, though as we all know UU reduces your chances of conceiving naturally (only one tube and all that). But we got lucky on our 2nd IVF (we also had 2 FETs). 

Our first apt with the consultant was a waste of time as he'd never heard of it and was clueless, so refered me back to the doctor who originally diagnosed me. I told him my cervix should be measured, which he agreed with. he did seem to trust my research, so although the first thing he said when I told him what I had was "I see you've been on the internet" it really did pay off to have done some research.

I havea scan in 2 weeks to measure my cervix length and see the other doctor. I'll let you know what plan of action she comes up with for me. I'm kind of hoping for a stitch, as it sounds liek that can help so much.
so far from scans they've said my uterus looks a normal size. but to me it looked tiny on the HSG - but it's a long time since Ive seen that! 

Good luck to you all x


----------



## Jasmine2012

Hi- 
I am new to this forum. I was recently diagnosed with UU. I have PCOS, and had two miscarriages in last two years( both 6 weeks). I went through two cycles of IUI with no success. We were planning to go for IVF when I learnt about UU. My biggest hesitation before I try to conceive again is chance of having pre term labor or another miscarriage. I am so afraid of child's health that if I have pre term labor(given there is a higher risk of that with UU), how would I live with the guilt in case child is born with complications and has to face rough outcomes for life. I do not know if trying to conceive will be a good idea, so I am debating between surrogacy and IVF for my self.. I am torn because I want to experience it at my own with IVF but I am unable to ignore risks associated with trying at my own with IVF. What I have read so far, people with UU do not really look into surrogacy which makes me think am I being overly paranoid about the outcome? it is an emotional rollercoaster and any support will be helpful.


----------



## Alisa F

I totally felt the same as you Jasmine. I had a loss at 25+2 and was convinced there was no chance of me carrying a baby to good gestational age. Until I found UU sisterhood on yahoo groups. Join the group as all but a few women have carried very close to term. They give great advice and know so much about their UUs. Wealth of knowledge! 

You will need to take it easy during pregnancy, and have your cervix checked regularly, but there's no reason why you shouldn't be able to carry to good gestation. 

Good luck x


----------

