New member

[Guest guest]

Ok,

This may sound completely crazy, but I joined this group in July '00 and I

can't remember how I joined. There is a lady that I've met from a fertility

message board who has recently gone through a EP, and could really use this

group for support/information, but I don't know how to tell her to join.

Please let me know how to explain this to her.

Dana

[Guest guest]

DAna

She can go to Krista's site. There should be a link from there.

Pam

[Guest guest]

Silvina,

welcome to our group. As this groups grows, we are seeing many members popping up that have had Ashermans for years. We do have a few more members like yourself. It was interesting to read that for 7 years you had full periods and then you say that you removed the IUD which was placed to remove your adhesions. I think you meant it was placed to avoid the adhesions coming back?

You say that you suspect that your ashermans has come back? How do you know that you were clear of ashermans in the first place?

Have you looked at the A list of doctors? We haven't found an A list doctor yet in Canada, but I think that depending on where you are in Canada, you may be able to travel to one in the US? If you take a look at the members profile list on the AS site under Files section, you will see other Canadian members and you will also see which doctors they have been too. I think that the best ones which have been mentioned from Canada are: Dr Vilos, Dr Leyland and Dr Cadesky. I believe these are the best doctors with knowledge of ashermans that we know of in Canada. I hope the other Canadian members will help you with contact details if you are interested.

Please feel free to ask us any other questions you may have.

Poly

[Guest guest]

Gladys- I saw Dr Palter- he's in Long Island and answers all our questions on the professional board- he's TERRIFIC!!!!!!!!!!!!- Write with any questions

PS- I'm 36 weeks pg today!!!!!

"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 4 1/2YO- YIPES!), and Jaden Kalyan Ross-born in Cambodia July 15, 2001 home with us forever May 3, 2002, Baby Angel born still 11/7/00, and Riley and Snoozer the dogs

Join us again next year in remembering the millions of people affected by CHD on 2/14/2003: "A Day for Hearts: Congenital Heart Defects Awareness Day!"

[Guest guest]

Gladys, after I hemorraged and had a D & C, I was seen by

an OB at Roosevelt Hosp. (NYC) whose mentor was Bob

Neuwirth. Dr. Neuwirth was consulted (so, not the main

doctor on the case) about me and he actually examined me

a few times just by sonogram. At the time he examined

me, we decided to try hormones to see if they would

trigger my period. But, I was not happy with the OB,

and did not feel that Dr. Neuwirth was involved enough

in my case, so I switched to Dr. Levine who

wrote the original paper with Dr. Neuwirth on how to

treat Ashermans. My understanding about Dr. Neuwirth is

that he is at least partially retired. Dr. Levine

recommended Dr. Charlie March as his first choice to

conduct a hysteroscopy. I hope that is somewhat

helpful.

[Guest guest]

Corinna,

I was thinking the same thing about but I guessed that she made a mistake, because if you read before that she talks of a hysteroscopy.

J, I hope I am right.

Poly

[Guest guest]

Welcome to the group Audrey. While estrogen is normally prescribed

after surgery...we recently had a post from Dr. Palter in which he

said it was definitely worth trying to perfom a hysteroscopic repair

without the use of estrogen....I am not aware of any current members

who have not used estrogen after surgery...but know we have at least

one other who is contemplating surgery without estrogen due to a

blood clotting disorder as well....

Gwen

[Guest guest]

,

I just wanted to add my welcome to you and want to say that you will soon be feeling very comfortable with this group. Feel free to ask any questions you have. I know a lot of your questions have already been answered but you should never feel alone in your ashermans journey. Whatever your question, however silly it may sound, we are all here for you.

Good luck with your surgery. Your case doesn't sound too difficult compared to a lot of the other women in this group, including mine.

Poly

[Guest guest]

Hi Cortney,

Thank you very much for your reply, your kind welcome, support and

advice. Have you had your hysterscopy to check on the scarring from

your 6/2 hysteroscopy? I hope all goes well for you.

I appreciate you sharing your experience with me as it is helping me

to prepare for my hysteroscopy on July 24. Thank you for your insight

into remaining positive. You are helping me tremendously as I was

feeling so isolated and alone. It makes such a difference to be

part of a support group.

Thanks again and have a good weekend!

- In Ashermans@y..., " ckappelbaum " <ckappelbaum@y...> wrote:

> ,

>

> I am sorry about your loss and that you actually had to find our

site

> becuase you too have been diagnosed with Asherman's. This is a

great

> site and you will hopefully find out all the information that you

need

> to make decisions about your on-going care. I will try to answer

some

> of your questions based on the experienc that I have had...it is

kind

> of long so bare with me.

>

> I am glad that you were proactive enough to ask questions about your

> initial feelings regarding the scar tissue and got out of the care

of

> you OB/GYN and into better hands. We also have a database of A and

B

> list doctors who specialize in Asherman's and treat several member

on

> this list that I would recommend checking out.

>

> I have had 3 operative hysteroscopies (12/01, 4/02 & 6/02). The

> procedure was under general anesthesia so I was groggy coming out of

> it, and usually had cramping the first 1-2 days, but relatively not

a

> painful procedure...the first hysteroscopy they performed on me

> however was also performed with a laperoscopy and that was more

> painful because of the incision/stitches and the gas that they pump

> into you. After each hysteroscopy they inserted a balloon into my

> uterus to help prevent scar tissue from coming back. The balloon

does

> not hurt, but is not the prettiest thing in the world, since 2 of

the

> times it also included a drainage bag strapped to my leg (wearing

> clothes was a challenge). They say that the balloon may fall out

and

> the last time I had it in, it did come out.

>

> The doctor gave me antibiotics after the surgery to prevent

> infection...I was also treated with estrogen then progesterone to

make

> me bleed. After each surgery and after my 1st bleed, my doctor

would

> perform an HSG to see what the results of my surgery were. Since I

> have had 3 surgeries you can conclude that I had scar tissue come

back

> each time. Scar tissue reoccurance happens in some, but do not get

> depressed about it...each person is different and it might not

happen

> to you. I go for my next hysteroscopy next week to determine how my

> surgery went in June.

>

> Remaining positive is hard sometimes. Especially for those of us

that

> have yet to have a first child like you. Each person is different,

> but I have been told by my doctors that I am very positive. I do

this

> by learning as much as I can about my problem but also understanding

> that I can not change the past. I have so much to focus on for the

> future that I can not let my past 4 miscarriages get me down...can't

> wallow in the past. Need to focus on the future...but also need to

> realize that I may never be able to have children...it is hard to

> swallow, but I need to keep it in mind and not completely ignore it.

> As I said though each person is different and deals with things in

> different ways.

>

> You seem to be on the right track, but I would definitely ask your

> doctor how much experience she has had with Asherman's. Do your

> homework and do not hesitate to get other opinions. As I said,

there

> are good doctors in our database and you may want to get

consultations

> with them before having your surgery so that you know you are doing

> the best thing for your body in hope of conceiving again.

>

> Cortney

[Guest guest]

Welcome Kylie,

As you know, I started this group in Dec 1999. I read all the emails and let me tell you that the most common phrase that I have read so far in all these years is "My doctor said my case is the worst case of Ashermans he has ever seen". It is the most frightening statment any new ashermans member can be told at the time of their diagnosis, but I have come to understand that it might also be a sign to say "time to seek a specialist". Some of the worst ashermans cases in this group have been treated by A list doctors and their results were a baby in their arms!! What I am trying to say is that you still have hope.

Why is your doctor putting you on the pill for 3 months? This will thin your endometrium and at this point you want to make sure that you are taking something to help build your lining. Of course you might have PCO's and that is the reason for your doctor wanting to give you the pill.

I will be interested to learn more of this aqua division that your doctor has performed on you. I found something on the internet about it but it was related to hysterectomies and not ashermans. Here is the site if you want to read up on it http://www.ahmedabad.com/news/2k1/dec/17doctor.htm I do know that aqua means water so I am suspecting that he is using water to divide your adhesions????!! Can you find out more about this procedure. If this is what he has done to you, then it may be quite similar to the HSG in that when the liquid is forced into the uterus, it breaks loose some scarring. But it does not actually remove the adhesions. They will hang down like stalagmites in a cave. You may be lucky to shed some of these with your period. You may see stringy bits coming out with your period. Of course, having said all this, I am only guessing.

Please continue to ask us questions.

Poly

[Guest guest]

Hi Poly,

Thanks so much for your warm welcome and kind words. But, most of all

thank you for starting this group. I am so lucky to have found it.

It is nice to know that I am not alone.

Good luck with your adoption. I am so happy for you.

Take care,

[Guest guest]

In a message dated 7/16/02 5:30:56 AM Central Daylight Time,

flaggfamily1@... writes:

> Hello! I am the mother of 5 year old Cassidy, implanted at 18 months with a

> Clarion S-Series at s Hopkins in Baltimore.

Welcome to the list Suzanne! You will find much information and inspiration

here as so many of us have. I have a 6 year old who was implanted at age 5

with a MedEl Combi 40+. She has always used the BTE speech processor and it

has been absolutely wonderful! She made 15 months improvement in her language

skills this last school year. She will be repeating kindergarten this year to

gain more language. I'm not so sure how I feel about it yet but I know she

needs to acquire more language before hitting first grade. Glad to have you

here!

Suzette

Austin, TX

[Guest guest]

Hi Corinna,

Thanks so much for your support and kind words. Since finding this

group,I am feeling less isolated and very hopeful.

Thanks again and take care,

[Guest guest]

Cheryl,

Welcome to our group. Can we call you Cheryl S because we have another Cheryl in the group too. I am sorry to hear of all your problems but we are all too familiar with it all. It sounds to me like you have a closed cervix or adhesions only in the lower portion of your uterus. Have you ever tried an HSG to see if the fluid can enter your uterus?? The cramping you are having definitely sounds like your lining inside is ok. I would definitely not ever consider a hysterectomy for such a condition. Have you looked at our A list of doctors to see if there is an Ashermans specialist near you? Please go to one of these if at all possible. They see Ashermans patients all the time especially since this group started, we send them all to the A list doctors and they are more and more familiar with the problem now. Also, please do mention to them that this group recommended you to them.

Please ask us any quesitons you may have and we will try to help you.

Poly

[Guest guest]

Hi ,

I just saw Corinna's reply to your post. I had/have a moderate case

of AS. I was treated outside of my home state by an A-list doc.

However, I the doctor who originally diagnosed me via hysteroscopy

apparently did end up in the wrong place as Corinna indicated. He

believed that my uterus was totally fused and that I would not carry

a child with my uterus. Turns out that all of my scarring was at the

bottom of my uterus. My cervix was scarred over as well. My A-list

doctor (Dr. Indman) did allow that this sort of error can happen.

The other doctor, however, indicated that he wasn't able to get very

far during the diagnostic hysteroscopy due to the scarring. He also

said that he would have discovered the actual extent of my scarring

during the operative procedure (which I chose not to let him do as he

had limited AS experience). That your doctor says he's not seen AS

in 15 years is reason enough to seek out a more experienced doctor to

treat you. Again, sounds like Corinna gave you good advice on that

front.

Good luck! I wish you the best!!

J.

[Guest guest]

Welcome to the group!

First, I am sorry you have gone through all you already have, but I

must also tell you there will be more to come. In my opinion, I

think it is very possible to have regular monthly menses or periods

with Ashermans because this just means that your uterus and cervix is

not 100% blocked. It is also good that you have flow because this

means you have some healthy endometrium inside your uterus which your

body is shedding every month since you are not pregnant.

It is possible to get Ashermans from a D & C, infection in the uterus,

or from some other trauma to the uterus so it is most likely the

cause if you had a D & C 12 years ago. A D & C seems to be the most

common cause of Ashermans in our group and many of us had D & C's on a

recently pregnant uterus, which your was as well. It seems that a

uterus that is recently pregnant is much more easlity scarred than

one which is not recently pregnant. One of my doctors told me it is

the " jelly-like state " of a uterus during pregnance that allows it to

be much more easily damaged than when not pregnant. I hope you find

lots of answers to your questions from this group.

nancy w---

[Guest guest]

Thank you for welcoming me to the group and sharing your experiences,

it's been very helpful.

[Guest guest]

In a message dated 10/24/02 2:19:20 PM Central Daylight Time,

collieramy@... writes:

> We are fighting with the school district to get an FM system for

> , but they won't do it unless he falls behind the other students.

>

Hello Amy and welcome to the group. The fact alone that your son was

diagnosed with a hearing loss should qualify him for receiving the FM system.

There is a lot of information for you on the Listen-up website <A

HREF= " www.listen-up.org " >

www.listen-up.org</A>. You'll have to study the IDEA (Individuals with

Disabilities Education Act) and your state's laws regarding special or

exceptional education. If you'll do some homework and then make your

requests, letting them know that you know the laws, they'll probably do more

for you. Best of luck to you!

Suzette

[Guest guest]

Hello Amy,

Welcome to the group - you are in the right place if you need support, advice or

friendship.

I have a 23 month old daughter, (andra) who also has a moderate loss.

We were very lucky in that her loss was diagnosed at 11 months and she was aided

at 12 months. I am on a waiting list for her to get an FM system - from what I

have been told they are invaluable, especially for school age children. It must

be very frustrating for you to be told your child has to wait to fall behind

before they will help - I agree, it makes absolutely no sense! I hope you are

able to change their minds on this one.

As for 's progress, it is great that he has done so well at school so

far, which hopefully means with good amplification for his loss (hearing aids

and FM) he will get over his troubles. Whether it is the teacher or not, he

needs to be able to hear well at school to do well, so I hope you can sort it

out. Good luck.

I look forward to hearing more from you.

Take care,

Regards,

Kerryn

(, 23 months, mod loss, HA's)

New member

Hello,

I am Amy, mother to 3 boys, -7, -4, and Cameron-2.

was recently diagnosed as having moderate hearing loss. He has

always done very well in school, but this year (2nd grade) he is having

trouble. I have yet to figure out if it's the teacher or 's

hearing. We are fighting with the school district to get an FM system for

, but they won't do it unless he falls behind the other students.

It makes no sense to me.

I have no experience with hearing loss so I'm hoping that by joining this

group I can get some insight into how other parents handle the issues that

come with it. Thank you for letting me join.

Amy

[Guest guest]

I thought that telling you that you have to wait for a child to fall behind

is illegal. Check out IDEA and maybe Kay can give you some guidance to find

the site.

Re: New member

Hello Amy,

Welcome to the group - you are in the right place if you need support,

advice or friendship.

I have a 23 month old daughter, (andra) who also has a moderate

loss. We were very lucky in that her loss was diagnosed at 11 months and she

was aided at 12 months. I am on a waiting list for her to get an FM system -

from what I have been told they are invaluable, especially for school age

children. It must be very frustrating for you to be told your child has to

wait to fall behind before they will help - I agree, it makes absolutely no

sense! I hope you are able to change their minds on this one.

As for 's progress, it is great that he has done so well at

school so far, which hopefully means with good amplification for his loss

(hearing aids and FM) he will get over his troubles. Whether it is the

teacher or not, he needs to be able to hear well at school to do well, so I

hope you can sort it out. Good luck.

I look forward to hearing more from you.

Take care,

Regards,

Kerryn

(, 23 months, mod loss, HA's)

New member

Hello,

I am Amy, mother to 3 boys, -7, -4, and Cameron-2.

was recently diagnosed as having moderate hearing loss. He

has

always done very well in school, but this year (2nd grade) he is having

trouble. I have yet to figure out if it's the teacher or 's

hearing. We are fighting with the school district to get an FM system for

, but they won't do it unless he falls behind the other

students.

It makes no sense to me.

I have no experience with hearing loss so I'm hoping that by joining this

group I can get some insight into how other parents handle the issues that

come with it. Thank you for letting me join.

Amy

[Guest guest]

Hi . My name is een. I have a 6 year old son, Ian, who has hearing

loss in the higher frequencies. My 10 year old daughter, , has normal

hearing.

[Guest guest]

Welcome Donna, glad yer here, hope you will be too. lolAggieruthie200 wrote:

Hello All,I am a new member and would like to become active in this group. I am also the new leader of Chapter TX #718, Lockhart.Just went to the Austin workshop. Kay is so wonderful. I like the fish!Ya'll Take Off #'s Sensibly!!!!!!!!!DonnaEMAIL SUPPORT TEXAS-STYLE!!THE CRAZIEST BUNCH OF "LOSERS" ON THE 'NET'!!Visit us on the web: http://www.texastops.org

Yahoo! Mail Stay connected, organized, and protected. Take the tour

[Guest guest]

Welcome aboard Ruthie, glad that you could join this crazy group. My name is

Helon (with an O) and I live in Abilene, Tx. I am the Weight Recorder for our

group.

Helon

>

>

> Date: 2005/05/16 Mon PM 02:04:14 EDT

> To: TexasTOPS

> Subject: New Member

>

>

Hello All,

I am a new member and would like to become active in this group. I am

also the new leader of Chapter TX #718, Lockhart.

Just went to the Austin workshop. Kay is so wonderful. I like the

fish!

Ya'll Take Off #'s Sensibly!!!!!!!!!

Donna

EMAIL SUPPORT TEXAS-STYLE!!

THE CRAZIEST BUNCH OF " LOSERS " ON THE 'NET'!!

Visit us on the web: http://www.texastops.org

[Guest guest]

Wish we could get THE FISH !!!!!!! Sorry to interrupt all the contest 'yakking' !!!!!

Welcome, Donna !!!!! I'm the 'into her third year' leader of TX #323, Orange --- welcome aboard to all this CRAZINESS !!!!! Hugs from SE Texas, Randie

New Member

Hello All,I am a new member and would like to become active in this group. I am also the new leader of Chapter TX #718, Lockhart.Just went to the Austin workshop. Kay is so wonderful. I like the fish!Ya'll Take Off #'s Sensibly!!!!!!!!!DonnaEMAIL SUPPORT TEXAS-STYLE!!THE CRAZIEST BUNCH OF "LOSERS" ON THE 'NET'!!Visit us on the web: http://www.texastops.org

[Guest guest]

Thanks Randie,

I could really lose weight doing this. My fingers are hurting already.

--

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