A little different of a questions

[Guest guest]

I'm new to the board, as as I was reading the posts, the majority of

what I've read tends to discuss pregnancy. I have uterine didelphis

and have been told by more than one OBGYN that I would not be able

to carry past the 4th or 5th month. So I've accepted that I won't

be having children.

However, they diagnosed me with this 10 years ago, and to be honest,

the pain is never ending. Periods of course are the worst, so they

try to stop those with birth control which leads to fun things like

weight gain (80 pounds in 3 months), facial hair (gotta love

depoprovera) and migranes from excess hormones. They've told me

that I should have a hysterectomy yet they keep saying that I'm too

young. I'll be 30 this year and frankly quality of life sucks.

I live in Michigan, and oddly enough work for the University of

Michigan Hospital but the best I've gotten there is being sent to a

pain clinic. I don't know if anyone can recommend a doctor who has

experience with uterine didelphis and hysterectomies but if you do

I'd love to get their names.

Thanks!

Sandie

[Guest guest]

What you describe sounds more like PCOS... just having an oddly shaped

uterus does NOT cause weight gain and hair growth- that's hormonal!!!

I would DEFINITELY see an RE for a 2nd opinion, get tested/treated for PCOS

and talk to someone who knows what they're doing

good luck!

Mikki

[Guest guest]

Mikki,

I'm sorry I must not have explained. They have had me on a great

deal of heavy doses of birth control to stop/control my periods.

The birth control is what cause the weight gain and hair growth.

Sandie

[Guest guest]

>I'm sorry I must not have explained. They have had me on a great

>deal of heavy doses of birth control to stop/control my periods.

>The birth control is what cause the weight gain and hair growth.

Sandi --

I agree with Mikki. Having a heavier cycle is also a symptom of PCOS and so

are hard to control periods. I have PCOS and there isn't a pill out there

that can actually control my cycle. Metformin (an insulin resistance drug)

is what finally helped get things under control. It's not the weight gain

that makes me suspicious -- it's the hair growth, which is caused by excess

androgen (which isn't in a birth control pill).

If you have never been tested, but want to read more, here's a great link

that explains PCOS:

http://www.infertilityphysician.com/androgen/pcos.html

Testing, by the way, can be done by an ultrasound, so it's not painful or

anything.

I'm new to the world of MA's, but from what I know, a woman with a UD can

carry a baby to term, and if you have any desire to have bio children, you

might want to seek the opinion of an RE that specializes in MAs.

[Guest guest]

Actually the hair growth is a side effect of the shot, depo

provera. Never had a problem until I took the shot, and they had me

taking 3 times the normal dose to boot. I've been to just about

every specialist in our state so far.

> >I'm sorry I must not have explained. They have had me on a great

> >deal of heavy doses of birth control to stop/control my periods.

> >The birth control is what cause the weight gain and hair growth.

>

> Sandi --

>

> I agree with Mikki. Having a heavier cycle is also a symptom of

PCOS and so

> are hard to control periods. I have PCOS and there isn't a pill

out there

> that can actually control my cycle. Metformin (an insulin

resistance drug)

> is what finally helped get things under control. It's not the

weight gain

> that makes me suspicious -- it's the hair growth, which is caused

by excess

> androgen (which isn't in a birth control pill).

>

> If you have never been tested, but want to read more, here's a

great link

> that explains PCOS:

>

> http://www.infertilityphysician.com/androgen/pcos.html

>

> Testing, by the way, can be done by an ultrasound, so it's not

painful or

> anything.

>

> I'm new to the world of MA's, but from what I know, a woman with a

UD can

> carry a baby to term, and if you have any desire to have bio

children, you

> might want to seek the opinion of an RE that specializes in MAs.

[Guest guest]

Sandie,

First, let me welcome you to the board! Also, let me chime in on

the fact that if you do want to have children, it's possible!

, one of our funky UDers, just gave birth to a healthy baby

girl a couple of weeks ago. Check out the photo section to see

other UD mommies.

I don't know much about PCOS, but it sounds like you may want to be

checked out for it anyway.

I've been to just about

> every specialist in our state so far.

>

That's very disappointing. Unless you have an extreme condition or

mitigating factors, I can't believe that you were told you couldn't

have children. That's just absolutely unbelievable. (Proof is in

our members!) Sorry to be so blunt, but with all that I've learned

here over the past year and a half, I can't believe that there's

*nothing* anyone can do to help you feel better either. I agree

with the other ladies. See a different RE and find a solution - if

not in your own state, then elsewhere. There's no need for you to

be living uncomfortably.

I hope that you're able to find some help to deal with your pain.

Good luck!

C.

28, UD

[Guest guest]

Hi Sandie,

Welcome to the group.

I have read all of the responses to your post so far and must admit

that I know nothing about the depo shot, other than after your

description, it sure makes a girl get symptoms like PCOS! Any way

that they could put you on another form of birth control to manage

your cycles? Depo sounds horrible.

I gotta agree that the hysterectomy is a bit premature at this

point. Are you seeing a reproductive endocrinologist? Did you have

a lap/hys to diagnose your UD? I'm wondering if the pain you are

feeling is because one of the sides is a remnant horn without an

output for your menstrual flow. Have the drs you have seen been

experienced dealing with UD or mullerian anomalies? Do you have a

history of m/c? It did not make sense to me that they would tell you

that you cannot have children. We have a LOT of successful UD pg

here. And it has REALLy good outcomes out of all of the MAs.

UD is not a reason alone for not being able to have children. Your

drs owe you more of an answer. I hope that you can find someone that

can manage your pain better and give you the hope of having

children.

Welcome again!

Sara

36, SU resected x2

[Guest guest]

Hi Sandie,

I also have UD, and from what I've been told from my doctors and from

what I've read from everyone on here, UD actually has some of the best

outlooks for pregnancy and delivery of all the MAs. Not that they

don't come with their own sets of problems, but it certainly isn't

reason alone to have a complete hysterectomy. I guess that would be a

personal decision based on the amount of pain you're in due to your

periods. But I certainly wouldn't discount the possibility of getting

pregnant someday. All of us UD'ers on here are trying our best to make

it happen, and there are so many on here who already have.

Please seek a second and third opinion, if you have to. Do as much

research as you can so that you can set your doctors straight. I can't

believe there is a doctor out there who would recommend a hysterectomy

based on just the UD dx alone! I apologize for being so forward, but

it makes me mad that you've had your hopes of a biological child

squashed when there is definitely hope for you (as far as I can tell

anyway).

Keep us posted on what you find out from other doctors. And ask as

many questions on here as you want. These ladies know their stuff!!

Jenessa

27, UD and TTC

[Guest guest]

Dear Sandie,

I agree with all the responses that advocate for you to gather more information

about your UD before going to such an extreme (hysterectomy). I too have UD and

when I began menstruating at age 12, I had horrible horrible periods. I was

lucky to learn early on (age 13) that I also had a vaginal septum that was

obstructed on one side therefore " collecting " menstrual blood from my left

uterus...this was difficult to diagnose at first because I was menstruating

normally from my right uterus (but the periods were intensely painful because of

the build-up of pressure from my left side and periods came twice a month).

Sometimes women have a slight opening somewhere on the vaginal septum which

causes a little release of pressure - and may be harder to detect that there is

a problem or obstruction. I had two surgeries to remove the vaginal septum and

drain all the blood that had collected in my abdominal area because of the

" backflow " .

Sharing my story with you is only to point out there could be something related

to UD (or not related to UD) that can be causing such difficult periods. I'm

not sure why your doctor recommended hysterectomy - do they know how big your

uteri are? are they worried about the size, perhaps? If that's the case, I've

read about UD women who have been able to carry a pregnancy even though their

" pregnant " uterus was originally the size of a walnut.... a testament to the

potential power of the uterus to grow exponentially.

Good Luck!

Miriam

28, TTC

Sandie D wrote:

<<I'm new to the board, as as I was reading the posts, the majority of

what I've read tends to discuss pregnancy. I have uterine didelphis

and have been told by more than one OBGYN that I would not be able

to carry past the 4th or 5th month. So I've accepted that I won't

be having children.

However, they diagnosed me with this 10 years ago, and to be honest,

the pain is never ending. Periods of course are the worst

Thanks!

Sandie>>

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