I have a Bicornea Uterus and Fibroids... help

Good Morning from Maine,

I'm new and a week ago I was an emotional wreck.
I'm much calmer now and still... with my body... I feel alone.

This is my story................
First I must say that I have a...

"BICORNA UTERUS WITH A SEPTUM IN MY VAGINA AS WELL"
... the septum is hardly noticeable.. it took 3 Gyno's to find it with the" naked eye.
It is what separtes my uterus as well.
From the mouth of my vagina to the top of my uterus.

Years back they did an ultra sound and found some fibroids. This would be on my "left side" being the side I carried both my children on.
They were growing but all my OBGYN was doing was watching them. a year ago, they noticed that one of the 3 was very large.

This Feb I had another ultra sound and they found two more on the "rightside this time.
The large fibroid on my left side had become the size of my fist and that put my uterus at the size of a woman 3 months pregnant.

I was suppose to go back for just a check up on July 25th, but on June 26 ( the day of my oldest daughters birthday)... soon after I woke up I had a gush down my leg. I used tampons and pads and changed them every hour.

I called the "service" and she told me to go to the ER. I explained this was my daughters bday and that we had family from away coming down from Ottawa. She said, okay put your feet up and relax as much as I could.

I did but ... some wheres around 7 that evening the bleeding stopped.
But pressure began. By Midnight my stomach was so bloated and full of pressure.. I told my husband to drive me to the ER. When they found out I had a Bicorna Uterus... they were like "Wow".

(( mind you... small town ER in the middle of know where))

so the dr on duty picked a clot I gushed and then gave me a pain pill and sent me home and to follow up with my gyno in the "city" 80 miles away.

Oops.. I'm making this post much to long...

Quickly, I went to see him and he did a DNC while I was awake in the office. My stomach had filled to the size of a 6 months pregnant woman. I lost approx 6cups of blood in that office.
This DNC while awake was the worst feeling I have ever known. ( I have had two c sections, and a Breast reduction as well) and this was by far the worst I will possible ever know!

After that he put me on BC ( which I could never take) but took to help stop the bleeding.
Durning which time I got an infection, and had to take Tequin?
Which caused a terrible yeast infection and my mouth with Thrush.
I went back to my OBGYN, a week later sobbing some..and he was very cold to me. I told him I am crying since I been bleeding for 16 days still and my emotions are off the wall with all the hormone.

( ( he had me take one every 6 hrs then when the bleeding went down to moderate take 2 a day and then take 1 when I do stop))

Well when I have been on one pill a day now sice Saturday. I have been feeling myself less on edge but still on edge.


So... now.. I have some Options..

*Take drugs to shrink them and it makes your body think your in menopause.
*Take BC pills and deal with the snappy times plus low sex drive.

* Have a DNC ever so OFten when more grow back ( which they will I was told since fibroids are heretity.

* or have a hysterectomy ( uterus only since my Ovaries are healthy)

Any advice or questions are gratfully appreciated.
I'm also 34yrs old.
waiting to hear back
peach~Tami

Did you doctor mention other options, such as myomectomy/ablation which would be removing the fibroids and possibly cauterizing the lining of your uterus to prevent further bleeding.

There is also uterine fibroid embolization, which about half of all women who have it find it is successful long-term. However, with your unusual anatomy you might need to look a little harder to find someone to perform your procedure. UFE is performed by an interventional radiologist not a surgeon, so gynecologists don't always mention this option because they make no money off of it.

You're very young to have a hysterectomy and after the age of 35 birth control pills bring increased risks of blood clots and strokes. The lupron option is also risky and only a short-term solution as most doctors only prescribe it for 3 months.

I hope you can find another doctor within your driving range that can meet your needs. In the mean time, do more reading (the articles here are a great start) to find out what options have been developed for women with your conditions. You might want to look at the forum called Options and Alternatives Success Stories.

I know that some other women will come along shortly and chime in.

Take care and let us know how it turns out.

I want to say thank you for your post. I truly hope more ladies respond. I really want to just do the hysterectomy now. I went to my PCP, and she had the same problems as I ( but she had her's removed being 10yrs older then me.)
I'm 34 I have a 14yr old daughter and a almost 6year old daughter. The youngest is from my new husband of 7 yrs. He adores the girls and always wanted a "farm" of kids running around. But, because he has seen me at my worst, his heart seems to be just like me...... make yourself "well".

He's going to be 41 this year, and well......... I think truly this is "our" time to enjoy each other and what we have.

and ok........... I have that bit of percent that says...."Awww... a baby... what a lovly idea! But then I wake up and say.... I've had two c sections.. my breasts grew to the size of "maine" and I had a BR in 2003 and that was the best thing ever.

So0oo ... what I like to know... is anyone upset with having a hysterectomy ( with only the uterus removed) no ovaries. I want to hear pro's and con's.

I got a second option "dr" that my PCP is going to go have me talk with. I will get lots of my questions answered ( he's still sort of fresh out of medical school)

Juniper.........." You don't know how much it means for me to have a post reply. This site is so large, and still kind of feel alone with so0oo many here probably more worst off then I.
Sincerely~
peach~Tami

oh and juniper.... I did some research about that myomectomy/ablation, after my dr mentioned the Lupron back in Feb.

I even talked with the only "dr in the whole state of Maine that is licensed and listed to do it and he's 4hrs away. I read some stories about it and honestly I got frighted. So I never pushed for more info that that simple phone call.

Peachprinceton,

Read, read read! This is a fantastic site for info. I didn't want to have a hysterectomy. I hoped an ablation would do the trick...After lots of research and soul searching, I opted for LSH. I'm 43 with 4 children and my periods were unbearable! Painful cramping, heaving bleeding and lasting 12 days. I had two large submucosal fibroids...I tried BC pills and that was even worse...still had the same periods but I was an insane woman on top of it! I can tell you that when I finally came to my decision, I felt at peace with it. Sounds corny but that's how I knew I was doing the right thing for me! I am 9 days post op and, with the exception of some insomnia, I have felt really good. It was very important to me to keep my ovaries and cervix...that's not for everyone but it was for me. I went for the 100% cure. Maybe that's wrong but I didn't want to "try" anymore. I wanted my life back. I have a wonderful doctor and my surgery and recovery have gone without a hitch. I know that's not always the case but for me I am very please (so far!) with my decision.

You're not alone, Tami, but I know it feels like it sometimes. Especially when you have an unusual condition.

To answer your question about whether I'm upset:

I guess I'm still trying to decide if I did the right thing. It's been almost a year since my surgery and I feel okay. It took a lot longer for me to recover (but that's me, I'm really slow). I was never in pain before, I just had very large fibroids and they weren't slowing down (I tried progesterone cream for almost a year). I had a lot of bladder pressure and it was definitely making a lot of the things I love difficult (couldn't go on long hikes because we had to be within an hour of a bathroom, etc.) I was 38 at the time and my mother had just finished menopause three years earlier at 57, so I was faced with possibly 20 more years of natural hormones.

A myomectomy didn't seem to be a good idea since the largest one was 11cms and there were two other 6 cm ones and they were all intermural (in the middle of the muscle wall). I'm a bleeder and there was a concern about the risks of such a long surgery and my doctor (who is an expert at myomectomy) wouldn't even remove them all because of the length of the surgery.

To be honest, I was attracted to the idea of a hysterectomy because I really didn't like all the bleeding and the low energy level from being iron deficient all the time. I also wanted a solution to my birth control dilemma, I'd been using condoms for my entire marriage.

My doctor assured me after surgery that I made the right choice, that if I'd gone the route of myomectomy, she might have been able to do it anyway, that she would have started and then abandoned it halfway through. But maybe she just says that to make me feel like I made the right decision (I was shocked however when I saw the stuff she took out of me. Imagine a grapefruit with a large eggplant rammed through it and that's pretty much the size/shape of my uterus and fibroids).

I worry quite a bit as to whether this hysterectomy will cause my ovaries to fail. I also worry that there are unknown consequences to our overall health after such a surgery. See, I don't worry about cancer, I worry about heart disease. And as much as I try to live a healthy life (eat right, exercise, keep my weight down), a lot of it is genetics. My mother's blood pressure has gone through the roof since menopause (and she had low bp before that). My sister, who had a hyster about six years ago, is now having thyroid problems (probably unrelated).

I'm comforted that my cholesterol tests came back last month perfectly normal, as did my ekg and other tests at my physical.

If I had it to do all over again, I wouldn't have taken the wait and see approach five years ago. I would have had a laproscopic myomectomy back when I had the chance (no decent health insurance at the time).

I should stop beating myself up about it, of course. But since I can't change my past, I stick around here to help others figure out the best course for them. I think that doctors should stop making women wait and take care of these things before it comes to hysterectomy.

And go for the least invasive method possible. I really wanted to keep my cervix so I had a very limited option with the size of my fibroids (bikini SAH). But if you're not interested in keeping your cervix, some women prefer the vaginal approach. I've also heard that the lap assisted supracervical hysterectomy has very low complication rates.

Take care.

Peach Princeton,

I don't know much about a bicornia uterus, but have been to Maine a number of times (I grew up in Boston, but am quite a long way aways from there now (can't say where, because I work for a hospital). I was up there 2 years ago at this time of the year and it was cool and lovely.

Maine is beautiful, but as you mention, it is not exactly abundant in gynocolologic surgeons. Would your insurance allow for a second opinion, and possibly surgery if you choose to have it, in Boston rather than in Maine? Boston is well renowned for it's excellent medical centers- Brigham and Women's Hospital (which was originally the Women's Lying In- a birthplace hospital), might be a good place to start, but there are other excellent hospitals in the Boston area as well.

You really do need to have an experienced surgeon do your surgery if you choose to have one, and a major medical center is a much better place to be if you have complications.

Good luck.

-Torrie

Good Morning Torrie and sisters,

It would be nice to have this done in Boston... but... not sure if the insurance would cover it since I have to pick from the list, and .. the biggest reason is that LONG drive home and being away from my girls and husband. It would really bother me.

I think my dr is good but he came across to me at the last appointment as a bit of a "chilly" person.

Also.. like I mentioned.. it's kind of hard to sit here and read all the information.
Since I got two girls who require my attention, and because I love them and the outdoors... I want to give that to them.
My daughters and my husband are the reason I am who I am and I am blessed.

Now... with these fibroids taking over my life.... all this information is actually making me feel more ill. Maybe it's the hormone talking but I feel so0oo scared I'm going to make things worst then they are right now.. or......................... I am prolonging happiness I deserve. This is really scary!!!

I also find it hard to follow along since the sisters here use lots of abbrev's when they talk about things.. and I also don't know what Half the words you are saying mean.

If I had more time to read short posts... I know I would catch on. (( this snappy talk is the hormone talking)
I started bleeding again and I was told to double up on my BC pills. I know what's happening with me taking them... so taking double is making my life even worst!!!

I appreciate everything and all these posts. I race to read them while I'm sipping tea or having some cheese and crackers.

Gratful to you all~
peach~Tami