Hello - Intro from Deanna

[Guest guest]

Hi,my name is Deanna, I'm 34 years old and I live just outside of Toronto, Canada. I was diagnosed on Friday, 2 days ago with Ashermans Syndrome. I have a wonderful daughter, Emma, who turns 2 in May. Two weeks after her birth, I began bleeding (very heavy, very large clots/tissue). For 2 weeks my doctor tried to treat the bleeding with drugs, but finally they decided to do a D & C (June 2000).I breastfed for 6.5 months, so the doctor was not surprised when I didn't have my period for a while. After I stopped breastfeeding, my period never returned. I kept questioning my doctor and wondering if something could have happened during the D & C but she kept telling me not to worry sometimes it just takes longer. Last summer she put me on estrogen and seemed confident that this would do the trick - didn't work. Finally in November, she referred me to an OB. In January she also put me on progesterone which did cause a light period. I saw the OB last Monday and she sent me for a histosonogram but didn't seem overly concerned. The doctor that was to do the histosonogram listened to my story, took 1 look at the ultrasound and said you have Ashermans Syndrome. After some painful attempts, he gave up trying to do the histosonogram as my cervix was completely blocked. From the comments he made, it certainly sounded like a pretty severe case.I am now being referred to another doctor for hysteroscopy. I don't know when this will be scheduled as my OB is on vacation and seeing as it took 4 months to see her, I'm not sure how long I will have to wait for this appt. I had never heard of Asherman's before Friday. I feel like in 5 minutes my life has changed. It has hit me pretty hard this weekend - lots of tears. Yes, I feel very lucky that I have an incredible little girl that I truly treasure and I know some people are unable to even have one and yes I was concerned that I hadn't had my period -- but I never imagined that the prognosis might be not able to have another baby. In my mind for the last 2 years I always assumed we would have another child. It really makes me wonder why a check-up isn't performed after a D & C to help prevent Ashermans from developing.I do have a few questions:Does the fact that my cervix is blocked off indicate that this is a severe case?Should I go and have the hysteroscopy (even just for a diagnosis) with a local doctor or should I try to see one of the "A" doctors straight away.?Is there anyone else in Canada in this group?I looked at the list of A doctors - how long does it take to try to see one of them? Do you have to be referred? My preference would be probably be either the Chicago, NY or Boston - any recommendations between those listed?

Thank-you for listening to my story, I am very appreciative to have found a group of women who will understand and any advice you can give will be truly valued.

Cheers,Deanna

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[Guest guest]

Hi Deanna-

I am so sorry you had to find us- but this is a wonderful group of women!!!!

I don't know the answers to all your questions- there are women on this list from Canada- they might be abe to help more- I think some of the A list Dr's don't even take insurance (not sure who) and I don't know about referrals anymore (insurance changes SO fast) I referred myself because NOONE would listen to me (Amazing isn't it- they kept feeding me hormones too!!!) I have a scarred cervix- and moderate scarring of the uterine cavity- lower 2/3 scarred together- though they couldn't get the cath in - you could see my uterus- shaped like a lightbulb (sort of more like ET's head) I am now 17 weeks pg- and I think I've beaten AS- I pray you can find a skilled surgeon and that you too will be able to pursue having another child.

Keep us posted!!!

"I know God won't give me anything I can't handle, I just wish he didn't trust me so much"

-Mother

, Mike, Brenna (VSD, PS- open heart surgery 1/29/98--- typical 4YO- YIPES!), Baby Angel born still 11/7/00, and Riley and Snoozer the dogs

Anxiously awaiting the arrival of Jaden Kalyan Ross-born in Cambodia July 19, 2001

"Giving birth does not make one a mother.........

Placing a child for adoption does not make her less of one." ~unknown

Join us again next year in remembering the millions of people affected by CHD on 2/14/2002: "A Day for Hearts: Congenital Heart Defects Awareness Day!"

[Guest guest]

Hello Deanna,

I just wanted to welcome you to this group and say how glad I am you

found us. There are many woman in this group who can give you many

answers, lots of consolation and a very good education as it pertians

to AS which in turn will allow you to make the right choice for your

situation.

As you may have read by now a common cause of AS is an overly

agressive D & C shortly after the birth of a baby due to the nature of

the tissue of the uterus at that time. A dr. can scrape to hard and

scrape away endometrium lining and in the most severe cases scrape

through all the layers of lining to endometrium muscle. Once this has

happened the uterus will stick to itself causing a scaring of the

cavity. The fact that you are closed at the cervix does not mean you

are closed throughout the entire uterine cavity. It will require a

hysteroscopy with a laproposcopy to determine the extent of the

severity of your AS and in turn to correct the problem. Once the

problem is corrected there is a course of estrogen therapy that many

woman on this board have been through that can help build the

endometrium lining to allow the uterus to accomodate implantation of

a fertilized egg in future pregnancies. Yet, each case is very

individual and your course of action and possibility for future

pregnancies will depend on the treatment you receive (hopefully from

an " A " list doctor) and the specific characteristics of your

situation.

At this point, the best advice I can offer would be to read the

posts, read the histories of each of us, and ask all questions you

can think of prior to your next doctors appt. The best defense is

knowledge and your best chance at a timely and complete recovery.

There is hope and consolation in knowing we have all been through the

shock you find yourself faced with at the early stages after the

diagnosis of this syndrome. The best thing that happened to me was to

find this group and realize there is hope and power in numbers!!

Hang in there, it will be ok!

S.

[Guest guest]

Hello Deanna,

I'm so sorry you are here...nice to meet you, but sorry for the

circumstances. After early miscarriages, and some strange looking

ultrasounds, I finally had a sonohystogram in October of last year.

There we saw why the regular u/s seemed so odd. One very thick

adhesion connecting the sides of my uterus right in the middle. When

I finally reached my surgery date (Nov. 29) they found lots more

adhesions and scar tissue that were not as thick or hard. I am cd 12

of my first cycle back to ttc after the surgery, and I'm just praying

all is well. I had a follow up sonohystogram in early January and it

looked really good.

As for whether or not your asherman's is severe, it's hard to say

without further testing. I know that some women only have scarring

at the cervix itself, and have an otherwise open cavity. There are

many that have the entire cavity adhesed as well.

Seeing one of the doctor's on the A list was absolutely out of the

question for me, so I went with my gut instinct and had my own RE

(reproductive endocrinologist) perform the surgery. So far, I am

absolutely thrilled with his part in this. If you lived down South

(Georgia is my state), I'd recommend him to you. My concerns were

mainly focused on the lining issue. I was pleased that when we had

our pre op consultation, he had all the right answers for me.

Everything that the ladies here had recommended, he put on the table

for me, so I didn't even have to bring things up. HE brought it all

up, first. So, my point is, though each of the doctors on the a list

has been recommended by experts, and have given many ladies much

needed help, I believe if you search in your own area, and make

inquiries, you could find another " potential " a list doctor.

Anyway, I know just how devastated you are right now. In my case,

the diagnosis was actually a relief, because it gave me an

understanding as to why I miscarried twice, yet, had had an easy

healthy conception, pregnancy and birth with my son just in 1999.

Please take the time to go to the home page and check out the

wonderful information in the files and databases that Poly so kindly

keeps up with for us. It helped me to take a look at what other

ladies did and how they responded.

[Guest guest]

Just a quick hello and welcome from me. Your story is a familiar one

and I think most members would advise you seek treatment straight off

with an A-list doctor, especially if you are hoping to maximize your

chances of conceiving again as quickly as possible.

I'm not sure (as I'm based in Europe) but I believe there are A-list

drs in NY and Chicago. You need to check on the list under Files or

database (sorry I can't remember which). There are other Canadian

members but from what I recall they seem pretty disatisfied with the

treatment for Ashermans there.

Your feelings pretty much echoed mine when I was diagnosed with AS

just over a year ago. I felt extremely pessimistic about my

prospects, but I was lucky, found an excellent dr in Spain to remove

the adhesions and conceived immediately on being the all clear. I'm

now 38 weeks pregnant and due for a c-section tomorrow.

The seriousness of your condition depends on the location and density

of scarring. The best scenario would be scarring just at the cervix.

The best method of diagnosis is a hysteroscopy possibly accompanied

by a laproscopy.

Hope this helps. Good luck.

Helena

[Guest guest]

Hi Deanna,

You are fortunate you found this site so quickly after being diagnosed

- you will find lots of good information here. I see that others have

responded to you, so you've probably had most of your questions

answered already, but I'll add my 2 cents as well.

I think you should try to see an A list doctor for the hysteroscopy.

Depending on the level of scarring (and if it operative versus

diagnostic hysteroscopy), it may be the one that clears things up for

you. There are a few women on the this board who were diagnosed with

a completely closed cervix and have gone on to become pregnant. I

think I remember reading that scarring lower in the uterus is better

than at the top too (because the top is where the embryo attaches and

grows placenta) - someone please correct me if I'm wrong here. Seeing

an A list doctor from the start will save you a lot of time and grief

- I can't recommend it strongly enough.

When I went to make my appointment with Dr. Valle (Chicago) the first

appointment they had available was about 2 to 3 weeks out. That's not

too long of a wait. I found Dr. Valle to be upfront and very frank.

He may come off a little gruff, but that's just his way. He had a

very good team working with him during the surgery and I could tell he

was very well respected by the them which I found reassuring.

I'm sorry you have to be here, but you are very fortunate to have

found this site before you have persued any treatment of your

Ashermans. You don't have to worry about correcting someone elses

mistakes. Good luck and keep us posted!

Lee Ann

[Guest guest]

Hello Deanna,

I'm sorry you need to be here but welcome. I'm glad

you were able to find the group. I have a similar

story to yours and have found comfort, strength and

wisdom from the group. I hope you will too.

I was also blessed with a baby girl and had retained

placenta after her birth. After 2 D & Cs, infection, 9

months of breastfeeding, and Provera treatment I did

not get a period. Last month a HSG and diagnostic

hysteroscopy confirmed a scarred shut cervix and AS.

After listening to the group, I decided to go straight

to an A list for surgery. I live in NJ and am seeing

Dr Cohen in NYC. I was able to schedule a

consultation with him in a week. Surgery is next week

and could have been scheduled sooner but he wanted to

give me a Depot-Lupron shot which needed some time to

work. I will let you know what I think of Cohen after

surgery.

Janice

__________________________________________________

[Guest guest]

Welcome Deanna!

I am new to this group too and was just reading some of the messages

that were sent in the last week or two. I only joined 3 days ago.

Your intro seemed very similar to my own story and I have not had any

treatments or surgery yet because I really did not know that this was

a problem for me. I hope to find out more about these procedures and

try to find a local doc to just look at my uterus and decide what

condition it is actually in. Then I will proceed with caution. I

live in a rather small town and there are only two hospitals and only

two decent OB-GYN practices. I am a little worried about the

consequences if I start having records transferred, etc. Some of

these people are related and went to lower education together. THere

are not any infertility specialist where I live and I am not even

sure that my doctor would think it necessary.

I hope you get treatment soon. My little boy just turned three in

January, and each year, the tissue gets harder to remove (from my

understanding, at least). Good luck and keep us posted.

W.

> Hi,

> my name is Deanna, I'm 34 years old and I live just outside of

Toronto,

> Canada. I was diagnosed on Friday, 2 days ago with Ashermans

Syndrome.

>

> I have a wonderful daughter, Emma, who turns 2 in May. Two weeks

after her

> birth, I began bleeding (very heavy, very large clots/tissue). For

2 weeks

> my doctor tried to treat the bleeding with drugs, but finally they

decided

> to do a D & C (June 2000).

>

> I breastfed for 6.5 months, so the doctor was not surprised when I

didn't

> have my period for a while. After I stopped breastfeeding, my

period never

> returned. I kept questioning my doctor and wondering if something

could

> have happened during the D & C but she kept telling me not to worry

sometimes

> it just takes longer. Last summer she put me on estrogen and seemed

> confident that this would do the trick - didn't work. Finally in

November,

> she referred me to an OB. In January she also put me on

progesterone which

> did cause a light period. I saw the OB last Monday and she sent me

for a

> histosonogram but didn't seem overly concerned. The doctor that

was to do

> the histosonogram listened to my story, took 1 look at the

ultrasound and

> said you have Ashermans Syndrome. After some painful attempts, he

gave up

> trying to do the histosonogram as my cervix was completely

blocked. From

> the comments he made, it certainly sounded like a pretty severe

case.

>

> I am now being referred to another doctor for hysteroscopy. I

don't know

> when this will be scheduled as my OB is on vacation and seeing as

it took 4

> months to see her, I'm not sure how long I will have to wait for

this appt.

>

> I had never heard of Asherman's before Friday. I feel like in 5

minutes my

> life has changed. It has hit me pretty hard this weekend - lots of

tears.

> Yes, I feel very lucky that I have an incredible little girl that I

truly

> treasure and I know some people are unable to even have one and yes

I was

> concerned that I hadn't had my period -- but I never imagined that

the

> prognosis might be not able to have another baby. In my mind for

the last 2

> years I always assumed we would have another child. It really

makes me

> wonder why a check-up isn't performed after a D & C to help prevent

Ashermans

> from developing.

>

> I do have a few questions:

> Does the fact that my cervix is blocked off indicate that this is a

severe

> case?

> Should I go and have the hysteroscopy (even just for a diagnosis)

with a

> local doctor or should I try to see one of the " A " doctors

straight away.?

> Is there anyone else in Canada in this group?

> I looked at the list of A doctors - how long does it take to try to

see one

> of them? Do you have to be referred? My preference would be

probably be

> either the Chicago, NY or Boston - any recommendations between

those listed?

>

>

> Thank-you for listening to my story, I am very appreciative to have

found a

> group of women who will understand and any advice you can give will

be truly

> valued.

>

> Cheers,

> Deanna

>

>

>

>

>

>

>

>

**********************************************************************

********

> The information in this email is confidential and may be legally

privileged.

> It is intended solely for the addressee. Access to this email by

anyone else

> is unauthorized.

>

> If you are not the intended recipient, any disclosure, copying,

distribution

> or any action taken or omitted to be taken in reliance on it, is

prohibited

> and may be unlawful. When addressed to our clients any opinions or

advice

> contained in this email are subject to the terms and conditions

expressed in

> the governing KPMG Consulting client engagement contract.

>

**********************************************************************

********