Re: New Member of Asherman's Group

[Guest guest]

Thank you Tina! - I know I am biased but I do believe she is the world's most adorable child.....and I know I am so very lucky and blessed to have her. I need to focus on that more often. I just saw your message earlier today in which you mentioned that all you're asking for is one child. I am so sorry. I am realizing that it might was pretty insensitive for me to attach a photo of my daughter to my introductory email. I just assumed (erroneously I now know) that everyone developed Asherman's as a result of a prior pregnancy and would also have at least one child. I didn't even realize that people could get this as a result of miscarriage or abdominal/uterine surgery. So please forgive me. If I were you I'd probably be thinking.... " What is she whining about? Go away! At least she already has a child! I don't have any! "

As devastated as I feel at the prospect of not being able to have a second child, I can only imagine how you must feel. Again, please forgive my oafish insensitivity.

Gwen

New Member of Asherman's Group

Hello all:

My name is Gwen. I'm 33 and just diagnosed with Asherman's last Friday. I'm so happy to have found a support group of others with the same diagnosis and I look forward to getting to know all of you. (Thank you again Poly for sending me the information!)

Here's my story:

I work full-time on a flex-time schedule as an attorney in downtown Chicago. (And before anyone asks...I have no experience in malpractice or personal injury law...but I'm thinking maybe I should get some given how betrayed and angry I feel right now...) I am married to Farooq, a wonderful but annoyingly optimistic man whom I adore.

I gave birth to our first (and now maybe only?) child Hannah in September of 1997. She is (if I do say so myself) the world's most adorable child....I'm going to try to attach a photo of her to this email if I can....) Her placenta didn't detach and my OB had to manually remove it which caused a good amount of bleeding (not to mention a great deal of pain.) Immediately after the delivery I changed to a different OB because the OB (who I LOVED!) that delivered Hannah was no longer accepting HMO insurance at all. So, I saw a new OB in October for my follow-up visit and I was still bleeding. He said don't worry....many women still bleed at 6 weeks. Call me if you're still bleeding at 8 weeks. I called at 8 weeks and he agreed to have me in for an ultrasound. Ultrasound showed I had retained placenta.

So, D & C done the same day as the ultrasound and more bleeding for 2 or 3 weeks after D & C but eventually stopped. My milk had never really come in due to the retained placenta, but I was able to get about an ounce of milk out of each breast a few times a day so I continued to nurse Hannah until I had to have my gallbladder out at 8 months post-partum. I didn't have periods at all while nursing which the OB said was to be expected. Was on Micronor for a few months even after stopping nursing and again, no periods, and again OB said not to worry. Switched to a low estrogen pill when Hannah was a year old....I wait a few months, no periods....again, OB said not to worry, could be that my body didn't have enough " time " to build up an endometrium after a full year of nursing and Micronor.

So, December of 1999, Hannah is 2-1/4 we stop all birth control pills with the intent of having our second child and I wait for a period. Keep in mind that I was on birth control pills for almost 10 years before we got pregnant with Hannah and we stopped those pills in October, had a period 28 days later and were pregnant by December.

This time, I stop the pills and nothing. No period at all. I'm having premenstrual kinds of symptoms each month but no period at all. I see my General Practitioner and she says...most likely due to being on birth control pills, can take a while for your body to return to normal. I ask why that would be when it didn't happen last time and she argues that the different pill type could be the reason. I wait some more, continue to have premenstrual symptoms but no periods. I see her 2 months later and she says, wait another month and if you still haven't had a period then see an OB. I find a new OB (as I have lost all faith in the one I was seeing post-partum by now) and see him in June. He says no periods for 6 months NOT due to any pill, maybe I have hypothalamic amenorrhea. Puts me on Provera for 5 days, and tells me I should have a period within 7 days.

You guessed it, no period. So, he refers me to a reproductive endocrinologist who listens to my medical history for 5 minutes and says....I think you have either Sheehan's Syndrome or Asherman's Syndrome and let's hope for your sake that it's Sheehan's. I asked why and all he offered was that Sheehan's was much easier to treat. He orders a hysterosalpingogram which took place last Friday. The RE I'm seeing, Dr. Gleicher is out of the office that day so another RE from his office performs the test. Everyone tells me that I might have some mild cramping but that's it and that it should only take 5 minutes maximum.

Well, I'm there for almost 40 minutes and it caused me serious pain despite having taken Darvocet and an anti-inflammatory beforehand in preparation so I know there is something seriously wrong. They tried 4 different catheters and couldn't get one to stay in place despite the balloon thingy that is designed to hold the catheter in. When I ask why the doctor explains that the pressure building up " behind " the balloon from the dye is just too much for it to hold. As I wonder what could be creating this pressure, the doctor asks me whether I have ever had an intrauterine surgery before and I tell him about the D & C and retained placenta and he says.....Ahh-ha....as if that explains everything. He moves the screen around so I can see it and demonstrates that the dye flows up through the catheter but then stops about a 1/4 of an inch inside my cervix and won't flow any further because something is blocking it....that something being my uterus. He couldn't visualize any uterine cavity at all and of course neither of my fallopian tubes either I am so blocked.

He says that I have a very severe case of Asherman's and I start to cry quietly right there on the examining table and he asks me why I'm crying....JERK! As if I don't understand what that diagnosis means....As soon as my regular RE had mentioned Asherman's I did a bunch of research on it so I was well-informed as to what having Asherman's would likely mean to our hopes of having a second child.

So, after the doctor leaves the room I sit on the floor of the examining room (did I mention I'm bleeding and already passing big clots while I sit there - but it's only the hospital gown...what do I care...) and I just broke down sobbing for about 5 minutes. Managed to pull myself together enough to call my husband to pick me up and then broke down in the car as soon as I saw him...and then basically cried on and off the entire weekend.

Got a call from my regular RE (Dr. Gleicher's) nurse at home on Sunday. (Nothing can freak you out more than getting a call from a medical professional at home on a weekend!) and she informed me that Dr. Gleicher had seen the results of my HSPG and asked that I come in for ANOTHER one because he wants to perform one personally. WHY? Does he have no confidence in this other doctor? Is my case SO BAD that he wants to see it personally? Could it be something else? Something malignant?

I am very hesitant to agree to going through that again especially considering that at the time I spoke with her on Sunday afternoon I was still bleeding from the procedure on Friday morning! So I ask her what possible purpose going through that again could serve and she says....Well, sometimes the doctor can remove the blockage just by doing another HSPG...he can use this little guide wire and punch through the mucus that is blocking your tubes! Ummmm - HELLO! They couldn't even get into my uterus let alone my tubes babe.......I'm thinking that's not the reason. So I relay this to her and she ummms and ahhhs and fumbles around for a while and then agrees to leave a message for the doctor asking him to call me to discuss this.

So, I'm awaiting his call and I have an appointment scheduled for the 28th which will either be to discuss and plan a hysteroscopy OR will be for another HSPG (but he'd better have a damn good and very convincing reason for wanting me to go through that again) or possible for both I don't know.

So, that's my very long story. I'm feeling basically numb and in shock and sad and angry and hopeless at this point. My little daughter asks me every day when she will have a baby sister or brother. She even prays for one at night when we say our prayers. Every baby we see she asks if we can have one too. And to top it all off (and I'm not exaggerating here....) I currently know 10....yes I did say 10....women that are pregnant including my 2 best friends here in Chicago (both of which are also neighbors) and my sister. I know I should be a " bigger " person and be unconditionally happy for them but I am so bitter and sad that I find it hard to be happy. I feel as if the Universe is playing some cruel, cruel joke on me to allow this to happen.....

That's about it I guess. I look forward to getting to know each of you. Anyone know of any success stories? I could use one today....

Gwen

[Guest guest]

Gwen,

I apologize if I was complaining to much or have offeneded anyone. I am just having a bad week. I am happy for those of you who at least have a living child before getting this aweful disease. I know in my heart that someday soon I will have a healthy baby. I have 8 nieces and nephews and two more on the way, so that sometimes satisfies the urge if only for a little while.I pray that everyone in this group will find their happiness soon.

Love always,

Tina

-----------------------------------------------------Click here for Free Video!!http://www.gohip.com/free_video/

New Member of Asherman's Group

Hello all:

My name is Gwen. I'm 33 and just diagnosed with Asherman's last Friday. I'm so happy to have found a support group of others with the same diagnosis and I look forward to getting to know all of you. (Thank you again Poly for sending me the information!)

Here's my story:

I work full-time on a flex-time schedule as an attorney in downtown Chicago. (And before anyone asks...I have no experience in malpractice or personal injury law...but I'm thinking maybe I should get some given how betrayed and angry I feel right now...) I am married to Farooq, a wonderful but annoyingly optimistic man whom I adore.

I gave birth to our first (and now maybe only?) child Hannah in September of 1997. She is (if I do say so myself) the world's most adorable child....I'm going to try to attach a photo of her to this email if I can....) Her placenta didn't detach and my OB had to manually remove it which caused a good amount of bleeding (not to mention a great deal of pain.) Immediately after the delivery I changed to a different OB because the OB (who I LOVED!) that delivered Hannah was no longer accepting HMO insurance at all. So, I saw a new OB in October for my follow-up visit and I was still bleeding. He said don't worry....many women still bleed at 6 weeks. Call me if you're still bleeding at 8 weeks. I called at 8 weeks and he agreed to have me in for an ultrasound. Ultrasound showed I had retained placenta.

So, D & C done the same day as the ultrasound and more bleeding for 2 or 3 weeks after D & C but eventually stopped. My milk had never really come in due to the retained placenta, but I was able to get about an ounce of milk out of each breast a few times a day so I continued to nurse Hannah until I had to have my gallbladder out at 8 months post-partum. I didn't have periods at all while nursing which the OB said was to be expected. Was on Micronor for a few months even after stopping nursing and again, no periods, and again OB said not to worry. Switched to a low estrogen pill when Hannah was a year old....I wait a few months, no periods....again, OB said not to worry, could be that my body didn't have enough " time " to build up an endometrium after a full year of nursing and Micronor.

So, December of 1999, Hannah is 2-1/4 we stop all birth control pills with the intent of having our second child and I wait for a period. Keep in mind that I was on birth control pills for almost 10 years before we got pregnant with Hannah and we stopped those pills in October, had a period 28 days later and were pregnant by December.

This time, I stop the pills and nothing. No period at all. I'm having premenstrual kinds of symptoms each month but no period at all. I see my General Practitioner and she says...most likely due to being on birth control pills, can take a while for your body to return to normal. I ask why that would be when it didn't happen last time and she argues that the different pill type could be the reason. I wait some more, continue to have premenstrual symptoms but no periods. I see her 2 months later and she says, wait another month and if you still haven't had a period then see an OB. I find a new OB (as I have lost all faith in the one I was seeing post-partum by now) and see him in June. He says no periods for 6 months NOT due to any pill, maybe I have hypothalamic amenorrhea. Puts me on Provera for 5 days, and tells me I should have a period within 7 days.

You guessed it, no period. So, he refers me to a reproductive endocrinologist who listens to my medical history for 5 minutes and says....I think you have either Sheehan's Syndrome or Asherman's Syndrome and let's hope for your sake that it's Sheehan's. I asked why and all he offered was that Sheehan's was much easier to treat. He orders a hysterosalpingogram which took place last Friday. The RE I'm seeing, Dr. Gleicher is out of the office that day so another RE from his office performs the test. Everyone tells me that I might have some mild cramping but that's it and that it should only take 5 minutes maximum.

Well, I'm there for almost 40 minutes and it caused me serious pain despite having taken Darvocet and an anti-inflammatory beforehand in preparation so I know there is something seriously wrong. They tried 4 different catheters and couldn't get one to stay in place despite the balloon thingy that is designed to hold the catheter in. When I ask why the doctor explains that the pressure building up " behind " the balloon from the dye is just too much for it to hold. As I wonder what could be creating this pressure, the doctor asks me whether I have ever had an intrauterine surgery before and I tell him about the D & C and retained placenta and he says.....Ahh-ha....as if that explains everything. He moves the screen around so I can see it and demonstrates that the dye flows up through the catheter but then stops about a 1/4 of an inch inside my cervix and won't flow any further because something is blocking it....that something being my uterus. He couldn't visualize any uterine cavity at all and of course neither of my fallopian tubes either I am so blocked.

He says that I have a very severe case of Asherman's and I start to cry quietly right there on the examining table and he asks me why I'm crying....JERK! As if I don't understand what that diagnosis means....As soon as my regular RE had mentioned Asherman's I did a bunch of research on it so I was well-informed as to what having Asherman's would likely mean to our hopes of having a second child.

So, after the doctor leaves the room I sit on the floor of the examining room (did I mention I'm bleeding and already passing big clots while I sit there - but it's only the hospital gown...what do I care...) and I just broke down sobbing for about 5 minutes. Managed to pull myself together enough to call my husband to pick me up and then broke down in the car as soon as I saw him...and then basically cried on and off the entire weekend.

Got a call from my regular RE (Dr. Gleicher's) nurse at home on Sunday. (Nothing can freak you out more than getting a call from a medical professional at home on a weekend!) and she informed me that Dr. Gleicher had seen the results of my HSPG and asked that I come in for ANOTHER one because he wants to perform one personally. WHY? Does he have no confidence in this other doctor? Is my case SO BAD that he wants to see it personally? Could it be something else? Something malignant?

I am very hesitant to agree to going through that again especially considering that at the time I spoke with her on Sunday afternoon I was still bleeding from the procedure on Friday morning! So I ask her what possible purpose going through that again could serve and she says....Well, sometimes the doctor can remove the blockage just by doing another HSPG...he can use this little guide wire and punch through the mucus that is blocking your tubes! Ummmm - HELLO! They couldn't even get into my uterus let alone my tubes babe.......I'm thinking that's not the reason. So I relay this to her and she ummms and ahhhs and fumbles around for a while and then agrees to leave a message for the doctor asking him to call me to discuss this.

So, I'm awaiting his call and I have an appointment scheduled for the 28th which will either be to discuss and plan a hysteroscopy OR will be for another HSPG (but he'd better have a damn good and very convincing reason for wanting me to go through that again) or possible for both I don't know.

So, that's my very long story. I'm feeling basically numb and in shock and sad and angry and hopeless at this point. My little daughter asks me every day when she will have a baby sister or brother. She even prays for one at night when we say our prayers. Every baby we see she asks if we can have one too. And to top it all off (and I'm not exaggerating here....) I currently know 10....yes I did say 10....women that are pregnant including my 2 best friends here in Chicago (both of which are also neighbors) and my sister. I know I should be a " bigger " person and be unconditionally happy for them but I am so bitter and sad that I find it hard to be happy. I feel as if the Universe is playing some cruel, cruel joke on me to allow this to happen.....

That's about it I guess. I look forward to getting to know each of you. Anyone know of any success stories? I could use one today....

Gwen

[Guest guest]

Gwen,

Please let me welcome you to the group. I'm sorry that it has taken me so

long before responding. I'm glad however with the warm welcome you

received from everyone else! I really also agree with someone in this

group who had suggested your waiting until you can schedule the

hysteroscopy - I think you can find out everything all at once with this

process and since your 1st HSG didn't succeed I don't know how confident

I'd feel trying it again with a guide-wire. Just a suggestion - maybe

even get a 2nd opinion?! Go with your gut feeling though because I think

we all KNOW when something feels " wrong " . Good luck.

Debbie

At 09:20 AM 7/12/00 -0500, you wrote:

> Hi Poly: I kept asking and kept getting the same answer and I

>believed them and I just want to bang my head against a wall now knowing

>that had I pushed harder and done some more research I might have

>discovered this on my own....I have completely lost faith in the medical

>community now.... " " " " with a few women who had had HSG's on the INCIID

>Secondary Infertility board before my procedure and a couple of them

>commented on bleeding so I don't think it's completely unusual...but do

>let me know what other people's experiences have been....I'd like to know

>before I talk to my RE (assuming he ever calls me back!) " " And none

>of the dye would flow...he couldn't see any uterine cavity at all. So he

>kept trying with smaller and smaller catheters but nothing would stay in

>place.... " " She left my chart on his desk with a note to call me

>please to discuss before he leaves on vacation (tomorrow is his last day

>in the office for 2 weeks!) Thank you for the information though....a

>punctured uterus is definitely something I don't need. When I finally speak

>to him I'll let you know what he says....and ask for everyone's feedback

>again! I trust all of you more than I do him!! Gwen -----Original

>Message-----

>

>To: Ashermansegroups<Ashermansegroups>

>Date: Wednesday, July 12, 2000 7:22 AM

>Subject: Re: New Member of Asherman's Group

>

> Gwen, I took your email to work today (boss was away), and had

> another good read of it. I have totally lost all faith in

>doctors and no one can ever make me believe otherwise again!!

> Did they not say anything about the blood? Anyone else experienced

>blood after HSG? " " Can you imagine? Our lives in their

>hands!! Just some points to consider!!

>Poly