Re: My Daughter with UD

[Guest guest]

Sandy -

I think it is great that you are researching info for your daughter.

I also have UD and was diagnosed with it when I was a lot younger.

The thing was, I went to the GYN b/c of severely painful periods and

he didn't test me for Endometriosis. I highly recommend that if she

has been having painful periods. That is a symptom of Endo and also

women with MAs have a higher probability of having Endo.

If you have any questions about this, you can reply to me and we can

chat.

I am 26 now, and have dealt with Endo and UD for years....Having a

good doctor is VERY important. I am very happy that she has a

caring mother!

Marie

> Hi all,

> I have joined this group in the hopes of gaining as much info as I

> can for my daughter (age 16)who has recently been diagnosed with

UD.

> She has some more tests to go through, internal for double cervix,

> and is taking the kidney test next week. We are not exaclty sure

yet

> what all is going on. The doctor told us her uterus was heart-

> shaped, that's about all the info she did give us for now. I have

> been doing a lot of research on my own. My daughter will start on

> birth control this week to see if it helps the terrible cramps and

> bleeding at all. We are hoping it will. At her age, I don't know

> how much to tell her. What do all of you think. Her pediatrician

> will work with us if he feels we need to be referred to a

> specialist. We are in San Diego, so options should be good. What

> other tests should she have done? This is all a shock to us

still.

> My biggest concern is giving her the information she needs without

> scaring her to death. Any help any of you can give me would be

great.

> Sandy

[Guest guest]

Sandy,

I had to chime in with Marcie and say that I am in 100% agreement that your

daughter needs to know everything that is ahead of her. I didn't know about my

t-shaped until we started ttc last year. If I had known sooner about the risks

I am now facing we would have started ttc years earlier. My dear mom was given

DES by injection when she was pregnant with me to prevent her from having a

third miscarriage. She mentioned to me when I was 14 that she had been given a

drug and that I might have difficulties getting pregnant, but we had no idea

what that meant. Because she talked to a nurse that gave her some bad

information and indicated that we shouldn't worry about it, we didn't really

take the warnings seriously. I really wish that we had both been more informed

about all of this when I was younger.

The other implications of DES is that there is a higher risk for cancer as well.

I am just so grateful that I haven't had cancer, especially since I wasn't

having the colposcopies necessary to check for the cancer.

It's also important that your daughter understands all of the risks so that she

can discuss it with her future mate. Having my husband's support has made all

of this so much easier. Although we didn't really expect that we would have

these difficulties, we did discuss before we were married that we could possibly

not have children (in as much as this is a normal risk for anyone). So, his

attitude towards our infertility issues has been exemplary.

Lastly, I should tell you that my mom has been wonderful throughout all of this.

Some mom's who took DES don't want to admit that they could have done something

(even unknowingly) to harm their baby. Unfortunately, this communication

problem between mother and daughter has brought harm to many relationships. I

think it is truly awesome that you are advocating for your daughter and trying

to help her get the best care and make the best decisions. It is hard to be the

bearer of bad news, especially with a teenage girl. But, in my opinion, being

open, honest, and showing her that she has your full support is the best way to

help her face what lies ahead.

Wishing you and your daughter all the best as you face the challenges ahead.

Mikell, 32

t-shaped

ttc #1 since 2/03

1 m/c 2/04

[Guest guest]

Sandy-

Hi and welcome! I am a veteran member of this group and I wanted to

chime in and commend you for gathering info on your daughter's

behalf. With any MA, infomation is the key. I was diagnosed at 19

by a doc who immediately ran to his textbooks and preceeded to tell

me that I would never be able to carry a baby to term (which is a

load of baloney) Because I didn't have the proper information, I

spent several years thinking I could never have children. I then

found this group's predecessor and and wonderful woman named Lia (she

still posts occasionally to this group) She was then in the middle of

her second uneventful pregnacy and now has 3 beautiful, perfect

little boys! The most important thing to know with UD is that yes,

there are many risks, but MOST UD ladies have relatively normal

(though highly monitored) pregnancies. The most common issue is

abnormal lie and smallish babies.

Encourage your daughter to have extensive testing to discover exactly

what kind of equipment she has....I finally underwent a

laporoscopy/hysteroscopy last june and it was discovered that I am

the proud owner of a " fused UD " (not something found in the

textbooks) I have UD's standard 2 uteri, 2 cervices and vaginal

septum, but the uteri are fused together and my left uteri is fairly

small and the left cervix is malformed....thus making pregnancy in

that side less than desirable. Luckily, nature was on my side in this

one and my vaginal septum effectively blocks the left side. One of

our other members has the same fused diagnosis, but her smaller

uterus was deemed dangerously small, so she had a unilateral tubal to

prevent conception on that side. She is now very happily 26 weeks

pregnant.

Bottom line, knowledge is everything, once your daughter knows

exactly what she is dealing with, she and her doctors can work

together to take the steps best suited for her. She is lucky that

she has been dx early by a knowledgeable doc and won't have to waste

time when she reaches the point in her life when she wants to pursue

motherhood.

I wish you both the best - feel free to ask any questions....I have

pretty much researched UD and its nuances to death :-)

fused ud

29 for 3 more weeks! :-)

> Hi all,

> I have joined this group in the hopes of gaining as much info as I

> can for my daughter (age 16)who has recently been diagnosed with

UD.

> She has some more tests to go through, internal for double cervix,

> and is taking the kidney test next week. We are not exaclty sure

yet

> what all is going on. The doctor told us her uterus was heart-

> shaped, that's about all the info she did give us for now. I have

> been doing a lot of research on my own. My daughter will start on

> birth control this week to see if it helps the terrible cramps and

> bleeding at all. We are hoping it will. At her age, I don't know

> how much to tell her. What do all of you think. Her pediatrician

> will work with us if he feels we need to be referred to a

> specialist. We are in San Diego, so options should be good. What

> other tests should she have done? This is all a shock to us

still.

> My biggest concern is giving her the information she needs without

> scaring her to death. Any help any of you can give me would be

great.

> Sandy

[Guest guest]

Hi Sandy.

I also have to applaud you on your caring nature with your

daughter. I found out at 16 that I had 2 cervices with the

liklihood of an abnormal uterus. However, I went under different

circumstances to get birth control w/out my parent's knowledge. I

was terrified and didn't feel like I could go to my mom. Needless

to say, I lived with my secret until after I got married. When my

husband and I started talking about kids, we went and started

testing. Finding a good doctor(s) is the key. The first doctor I

went to was an idiot. She had me terrified of not being able to

maintain a pregnancy or possibly not getting pregnant at all. I

eventually got to a fantastic RE who reversed all the psychological

damage the previous doctors created and told me of the positive UD

outcomes. I have been very blessed. I am currently almost 36 weeks

pregnant with my 3rd little girl. I guess my point is, don't hide

the facts from your daughter. She is the one who really needs to

know everything as she will be facing this in the future. Take

comfort in knowing the liklihood of a " normal " but closely monitored

pregnancy is high. Oh by the way, my periods were horrible as a

child. The pill really helped a ton. Thanks for being such a good

mom!!

UD

#3 scheduled csection 04-02-04

> Hi all,

> I have joined this group in the hopes of gaining as much info as I

> can for my daughter (age 16)who has recently been diagnosed with

UD.

> She has some more tests to go through, internal for double cervix,

> and is taking the kidney test next week. We are not exaclty sure

yet

> what all is going on. The doctor told us her uterus was heart-

> shaped, that's about all the info she did give us for now. I have

> been doing a lot of research on my own. My daughter will start on

> birth control this week to see if it helps the terrible cramps and

> bleeding at all. We are hoping it will. At her age, I don't know

> how much to tell her. What do all of you think. Her pediatrician

> will work with us if he feels we need to be referred to a

> specialist. We are in San Diego, so options should be good. What

> other tests should she have done? This is all a shock to us

still.

> My biggest concern is giving her the information she needs without

> scaring her to death. Any help any of you can give me would be

great.

> Sandy

[Guest guest]

Thank you so much for your reply. I have learned so much from the

women in this group, and I know my daughter will too, if and when she

decides she would like to begin talking with others. After this week of

testing, we should know more and what are next steps will be. Thank you

again so much.

Sandy

>

>Reply-To: MullerianAnomalies

>To: MullerianAnomalies

>Subject: Re: My Daughter with UD

>Date: Sat, 13 Mar 2004 19:24:06 -0000

>

>Hi Sandy,

>

> > I have joined this group in the hopes of gaining as much info as I

> > can for my daughter (age 16)who has recently been diagnosed with

>UD.

>

>You've come to the right place!!! I too have UD (2 uteri, 2

>cervices w/septum). I found out that I was UD when I was 21, and

>I'm so glad to see that your daughter has found out young. The best

>advice that I can give is to learn all that you can! I found this

>group about a year ago as part of my research into starting a family

>with my husband, and in that time, I have become so much more

>knowledgable thanks to them. My drs. are informed about MAs, but

>it's so much better to go into a situation armed with lots of info.

>(Unfortunately, it can be hard to find accurate info on MAs, so try

>the links on this board...there's some great stuff in there!)

>

> > The doctor told us her uterus was heart-

> > shaped, that's about all the info she did give us for now. I have

> > been doing a lot of research on my own.

>

>I would also recommend that your daughter get the appropriate

>testing done to accurately determine her specific MA. Although the

>MAs are similar, there are some really important differences, and

>that can affect treatments.

>

> At her age, I don't know

> > how much to tell her. What do all of you think. > My biggest

>concern is giving her the information she needs without

> > scaring her to death.

>

>PLEASE tell your daughter the truth! It's a scary discovery, but

>knowing the facts seems to help. You don't want to scare her, but

>at the same time, I wouldn't want to be told that there was 0% of

>complications, when that's just not the reality of it. I would tell

>her the facts: It can be difficult, but with information and time,

>things will work out. Answer your daughter's questions honestly,

>because sometimes knowing the truth makes it a little easier to

>accept.

>

>Now for some good news - There are lots of ladies with all sorts of

>textbook MAs as well as other variations who have had successfull

>pregnancies. (I'm thinking long term here!) Tell your daughter

>that she most likely CAN have children when she's older, there just

>might be a few bumps along the way!

>

>Good luck with your daughter. I'm no expert, but you can feel free

>to email me privately if you need anything. (Email is at the top of

>the message)

>

> C.

>UD, 28

>currently 7w pg

>1 m/c 9/03

>

_________________________________________________________________

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[Guest guest]

Thank you Mikell for your words of encouragement. My husband and I feel

much better about sharing everything with Jen now, after reading all of

lyour resposes. After this week, and some further testing, we will know

more, and she will be able to understand it all better. Thank you so much

for your help.

Sandy

>

>Reply-To: MullerianAnomalies

>To: <MullerianAnomalies >

>Subject: Re: My Daughter with UD

>Date: Sat, 13 Mar 2004 10:43:29 -0600

>

>Sandy,

>

>I had to chime in with Marcie and say that I am in 100% agreement that your

>daughter needs to know everything that is ahead of her. I didn't know

>about my t-shaped until we started ttc last year. If I had known sooner

>about the risks I am now facing we would have started ttc years earlier.

>My dear mom was given DES by injection when she was pregnant with me to

>prevent her from having a third miscarriage. She mentioned to me when I

>was 14 that she had been given a drug and that I might have difficulties

>getting pregnant, but we had no idea what that meant. Because she talked

>to a nurse that gave her some bad information and indicated that we

>shouldn't worry about it, we didn't really take the warnings seriously. I

>really wish that we had both been more informed about all of this when I

>was younger.

>

>The other implications of DES is that there is a higher risk for cancer as

>well. I am just so grateful that I haven't had cancer, especially since I

>wasn't having the colposcopies necessary to check for the cancer.

>

>It's also important that your daughter understands all of the risks so that

>she can discuss it with her future mate. Having my husband's support has

>made all of this so much easier. Although we didn't really expect that we

>would have these difficulties, we did discuss before we were married that

>we could possibly not have children (in as much as this is a normal risk

>for anyone). So, his attitude towards our infertility issues has been

>exemplary.

>

>Lastly, I should tell you that my mom has been wonderful throughout all of

>this. Some mom's who took DES don't want to admit that they could have

>done something (even unknowingly) to harm their baby. Unfortunately, this

>communication problem between mother and daughter has brought harm to many

>relationships. I think it is truly awesome that you are advocating for

>your daughter and trying to help her get the best care and make the best

>decisions. It is hard to be the bearer of bad news, especially with a

>teenage girl. But, in my opinion, being open, honest, and showing her that

>she has your full support is the best way to help her face what lies ahead.

>

>Wishing you and your daughter all the best as you face the challenges

>ahead.

>Mikell, 32

>t-shaped

>ttc #1 since 2/03

>1 m/c 2/04

>

>

[Guest guest]

Hi Sandy,

I'm glad that Jen's appt went well. I know that you are getting tons

of information right now, and I hope you don't mind me adding my

$0.02.

I understand that they found Jen's Mullerian anomaly by ultrasound

(u/s) during the exam where they were trying to identify the source

of her painful periods. You mentioned that she only has one cervix

and one vagina. Technically (someone correct me if I'm wrong here)

she cannot be UD. More testing would probably need to be done, but

my guess is that she is probably a bicornuate (BU) or septate (SU).

I know that Jen is not in the same boat as many of us are because she

is young and not thinking about starting a family soon. But I wanted

to encourage you and her to do some more testing at some point (not

now but whenever she is ready) to make sure that she knows what her

diagnosis is. She may want to have it done while she is covered by

your insurance, or maybe she won't be ready to deal with it until

later in life. But it is worth looking into further.

There are 2 reasons I think that you may need to do more testing.

The first reason is that there is usually a big difference in BU and

SU. BU usually has pretty good pg outcomes, however SU often has a

high rate of miscarriage. The septum has little blood supply and an

embryo that implants on it often cannot survive. I know that this is

not important now, but it may save Jen from some unnecessary

heartache later. Many of us found out about our SU after one or more

miscarriages. The second reason is that many of the SU women here

(myself included) complained of painful periods growing up, however

after the resection of the septum they noticed that the pain was much

less or even nonexistent. The rationale that most of us have heard

is that a SU contracts spasmodically because the septum is not

elastic and it causes cramping.

Incidentally, many women with MAs (any kind of MA) find a higher

incidence of endometriosis because of the unique configuration of the

uterus and as you know, endo can cause painful periods. Many of the

ladies found out that they had endo during the lap/hys procedure.

The surgery to remove a septum is a really easy outpatient surgery

and it is worth investigating. Some drs don't want to remove them if

a woman has not had a m/c. However, some of our drs disagree and

even believe that a septum can contribute to infertility by causing

early loss of an implanting embryo.

I'm glad to hear that Jen's biggest concerns right now are about the

prom. That's the way it should be for her right now. I miss those

days and hope that she is busy building memories. She is lucky to

have two open and honest parents who are looking out for her. I know

that you've all had a lot to deal with lately, but I wanted to

mention what I thought because it really is important to know what

kind of anomaly you are dealing with later in life. And who knows,

maybe she could end her painful periods?

Did the dr recommend doing an Hysterosalpingogram (HSG)? It would be

a good next step to see what shape the inside of her uterus is, but

probably the best step is to do the lap/hys.

HTH,

Sara

36, SU resected, dd 10/2/2003

[Guest guest]

Thanks Sara,

Our gyno did speak of the tests you mentioned. She just did not think there

was a huge hurry right now. I will look into specialists and I know our

pediatrician will help us with this process to find the best one.

Fortunately here in San Diego we should be able to get someone very good.

Jen does have a BU. I thought it was a UD at first, but the doc called it a

BU when we saw her last week. She does not have a septum and from the

internal the gyno says there is only one cervix. I do want the further

testing though to find out the exact make up. Thanks again for everything.

You guys are all the best!

Sandy

>

>Reply-To: MullerianAnomalies

>To: MullerianAnomalies

>Subject: Re: My Daughter with UD

>Date: Fri, 19 Mar 2004 21:37:23 -0000

>

>Hi Sandy,

>I'm glad that Jen's appt went well. I know that you are getting tons

>of information right now, and I hope you don't mind me adding my

>$0.02.

>

>I understand that they found Jen's Mullerian anomaly by ultrasound

>(u/s) during the exam where they were trying to identify the source

>of her painful periods. You mentioned that she only has one cervix

>and one vagina. Technically (someone correct me if I'm wrong here)

>she cannot be UD. More testing would probably need to be done, but

>my guess is that she is probably a bicornuate (BU) or septate (SU).

>I know that Jen is not in the same boat as many of us are because she

>is young and not thinking about starting a family soon. But I wanted

>to encourage you and her to do some more testing at some point (not

>now but whenever she is ready) to make sure that she knows what her

>diagnosis is. She may want to have it done while she is covered by

>your insurance, or maybe she won't be ready to deal with it until

>later in life. But it is worth looking into further.

>

>There are 2 reasons I think that you may need to do more testing.

>The first reason is that there is usually a big difference in BU and

>SU. BU usually has pretty good pg outcomes, however SU often has a

>high rate of miscarriage. The septum has little blood supply and an

>embryo that implants on it often cannot survive. I know that this is

>not important now, but it may save Jen from some unnecessary

>heartache later. Many of us found out about our SU after one or more

>miscarriages. The second reason is that many of the SU women here

>(myself included) complained of painful periods growing up, however

>after the resection of the septum they noticed that the pain was much

>less or even nonexistent. The rationale that most of us have heard

>is that a SU contracts spasmodically because the septum is not

>elastic and it causes cramping.

>

>Incidentally, many women with MAs (any kind of MA) find a higher

>incidence of endometriosis because of the unique configuration of the

>uterus and as you know, endo can cause painful periods. Many of the

>ladies found out that they had endo during the lap/hys procedure.

>

>The surgery to remove a septum is a really easy outpatient surgery

>and it is worth investigating. Some drs don't want to remove them if

>a woman has not had a m/c. However, some of our drs disagree and

>even believe that a septum can contribute to infertility by causing

>early loss of an implanting embryo.

>

>I'm glad to hear that Jen's biggest concerns right now are about the

>prom. That's the way it should be for her right now. I miss those

>days and hope that she is busy building memories. She is lucky to

>have two open and honest parents who are looking out for her. I know

>that you've all had a lot to deal with lately, but I wanted to

>mention what I thought because it really is important to know what

>kind of anomaly you are dealing with later in life. And who knows,

>maybe she could end her painful periods?

>

>Did the dr recommend doing an Hysterosalpingogram (HSG)? It would be

>a good next step to see what shape the inside of her uterus is, but

>probably the best step is to do the lap/hys.

>

>HTH,

>Sara

>36, SU resected, dd 10/2/2003

>

>

>

_________________________________________________________________

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