BIG MISTAKE

Here is a post I made on the FF forums. I don't have the energy to re type it . 

I went to see the guy for my Asherman's yesterday. Here is the update I wrote in the TTC 3+ years IVF buddy group they given replies in our group: we are back. I'm exhausted. We sat down in a room and 2 ladies came in (Dr. Issacson's assitants) they asked us a bunch of questions about our history (mostly our IVF history). After that the doctor came in and said that since I never had any D&C's or any surgeries that could have caused Asherman's and that I was still having my period (woman with Severe Asherman's don't typically have a period) that he thought I would have a normal uterus. He got out a drawing of a uterus and showed me what he thought the doctor had done during my last hysteroscopy. He said he thought she had gone into the uterine wall and that the picture was of my muscle tissue. He wanted to do a hysteroscopy to see whether this was true or not. Only problem was I wouldn't be under anesthesia. I was nervous but I agreed. First he gave me a vag ultrasound and showed me that I had a triple stripe lining. The hysteroscopy was VERY difficult. After 2 attempts he had his assistants (there were 3 woman assisting him) go get the ultrasound machine to help him guide his way. There was actually a "fake" entrance to my uterus. Leading us to believe what he said was true. After a VERY long time and lots of pain he finally got into my uterus. Perfectly healthy. Picture perfect. No scar tissue! He was right. The doctor that had done my last hysteroscoopy had gone into my uterine wall and cut away at my muscle tissue. She thought she was cutting scar tissue away from my left tube! You see my cervix goes straight then gets to a point where it bends (like the letter C ) the last doctor should have known this since I did 4 IUI's with them and they were the one's that discovered this. She used a hard instrument that didn't bend. Now I don't know if she's the one that caused the extra "fake entrance" or hole in my cervix or not. I'm very upset but very relieved at the same time. It's lots of mixed emotions. Here is a picture of where the doctor that did the last hysteroscopy (a local doctor did it for SIRM so it WASN'T SIRM). She went part way down my cerivx. Then when my cervix bends she made a hole instead of going with the bend. Anyhow, she went behind the uterus into the uterine wall. So here she thought I had Asherman's but it my muscle tissue behind my uterus. The bottom left is where she clipped away at what she thought was my left tube. nope...muscle tissue. 

and here is a picture of my normal perfectly healthy uterus! The picture is very crappy cause I took a picture of the picture with my camera and the picture is kind of crappy to begin with. 

And before more people ask me:

"What are your plans now?" 

Well thanks to this stupid doctor I lost my last chance at IVF. I lose my infertility coverage at the end of May. My hubby and I are exhausted mentally and physically from all these doctors and medical treatments. We have been on a break since last summer and this experience has been a huge reminder to me of the pain of the procedures. If I did do another IVF it wouldn't be for a while....like may be a year down the road...IF that. But the fact is I'm losing my insurance and Jon's insurance probably doesn't cover it. I emailed the RE from SIRM to let him know what happened and this is what he said:

 

All I can say is unbelievable, and I am sorry to hear about your lost opportunity for IVF.

I think the physician that did your hysteroscopy should offer to pay for your IVF if you did indeed ever want to do it.

This only reinforces my feelings that I should do EVERYTHING for my patients.

 

 

I called the office and talked to the the woman that did all my IUI's. I had a better relationship with her then the doctor that did my hysteroscopy (we'll call her Dr. B) the woman I spoke to "J" didn't respond in the way I expected. (although in hendsight did I expect them to basically admit they screwed up BIG TIME?). When I explained what the doctor had found she said "well that's not what I'm looking at" meaning that it couldn't possibly be muscle tissue. I said "well I doubt my scare tissue cleared up in a month" And we continued to talk. At the end she said "I'll tell Dr. B what Dr. Issaccson thought". 

I also got to thinking today. When I went in for my saline ultrasound " J " was the one that attemped it. It took her 45 minutes. In the end she wasn't sure if she got into my uterus but I saw the catheter on the ultrasound so I know she got in there eventually. There was lots of poking, prodding and tons of blood by the time I was done. Makes me wonder if she contributed to the extra hole I now have in my cervix area. Who knows how it got there but someone did it. I mean she poked me so much that day that she put me on antibiotics so I wouldn't get an infection. So I'm almost wondering if she's the one that started to make a hole behind my uterus to the muscle tissue and that "Dr. B" continued down that path when she did the hysteroscopy. Who knows what happened. 

I just don't know what to do. I don't know if I should just let it go and move on with life or if I should persue legal action. I mean my IVF was canceled because they thought I had severe asherman's syndrome. I lose my infertility coverage the end of this month so we don't have time to do another IVF. 



Please keep in mind that hubby and I don't even know if we want to do another IVF. As far as we are concerned we are done with doctors completely. Heck if I ever do get pregnant I'm going to a birthing center like my SIL is. I know there are good doctors out there. But between this doctor and the other doctors not listening to me when I ask for testing....I'm so done. but if I had the option to do IVF would I? I don't know. Right now I just want to live my life for a while. But in the mean time to I persue this and do anything about the fact that they messed up?

Conference

We had ward confrence this past weekend. It was wonderful. Its where we listen to people give talks. Adult session on Saturday was by far the best. My favorite talk was given by one of our RS councelors (the one that is pregnant after 7 years of infertility). She gave a wonderful talk on Grattitude. I couldn't even give justice to her talk though so I won't even try. She is an amazing speaker though. There were also people that sang. Here is one of the songs. It was sang by a gentleman in another ward. He is the stake choiar director. He has an amazing voice (this recording is by a woman.) but the song really spoke to me that evening. There is a version with a male singer, which I really like but I couldn't find a cover/picture for the video. unfortunately blogger doesn't let you just upload MP3's so I had to make it into a movie file. 

Mother's Day

Mother's day went considerably well this year considering all the recent events. Oh...like finding out that we had Asherman's and that we would probably never have children.  (for those that are religous this next part will be easier for them to understand) I was struggling with my faith. Mostly because I had blessings in which I had been told I would be a Mother and that I would be pregnant and have healthy babies and it would happen sooner then I thought. (actually I wrote a blog entry about it I believe). I didn't understand, first of all, why God would tell me something and let so much time pass (almost a year now) clearly that's not "sooner then you think" in my eyes. Then I got to thinking.  

On Mother's day I went to church anyway. I sat there, listened to the Mother's Day talks where people talked about their Mothers and all the sacrifices that Mothers give. And I thought to myself "what about all the sacrifices I have given over the past years in attemps to become a Mother? Isn't that worth something?" Then I got a whisper in my ear, or what ever you call it when the spirit talks to you (the spirit or God what ever you call it in your faith) that said something to the effect of: that I didn't need to be a Mother to be worshiped on Mothers day. That I HAD sacrificed A LOT in an attempt to become a Mother and that Mothers Day is my day too. I can't remember now what people talked on exactly or how the talks touched my heart but they did. A little bit here and there. It also helps that each and every Sunday for months it seems as thought the topics have been about trials. It was hard hearing people constantly say that everything is better after the trial is done and that they "wouldn't change a thing" and "they were truly blessed by their trial" mean while I'm thinking "oh come on, seriously?". I know it's true. I have gotten some blessings. I've learned a lot, I'm a different person. MUCH MUCH MUCH stronger then I was before. But it doesn't negate all the pain I've felt, the counceling I have had to and continue to go through. The way it affects even my intimacy. Infertility has effected every aspect of my life. Even down to not knowing who I was any more. It wasn't till I was laid off till I finally started to enjoy life again. Maybe I needed that time off to be by myself and just enjoy life. I needed time for me after everything I've been through. I needed time to heal. I'm enjoying playing my online RPG, reading, gardening and visiting with my sister in law and my nephew (my SIL is a stay at home mom). 

It also helped that we have someone in the ward who is in the relief society (RS) presidency that is pregnant after 7 years of infertility. She gave me a hug and acknoledged that being at church on Mothers Day must be hard. I was crying at that point but they were mostly tears of joy. Because I was feeling the spirit and I felt God's presents and love with me the entire day. Something I hadn't felt in a very long time. Probably mostly because of all my anger and resentment. She shared with me how she had a melt town last year on Mothers Day. The RS president also came and gave me a hug and said that "this must be a hard say" for me. It was nice to know that people cared. And actually the RS president gave one of the talks that morning and it it she acknowledged the woman that couldn't have children. It was very nice to be acknowledged by someone on Mothers day. To be incorporated into someone's talk. It doesn't happen very often. 

Since then I have gotten a really nice card in the mail from the RS president. It was very sweet and made my day.

Well I have a puppy demanding attention and I still have 2 more updates to write to my blog before I'm up to date. 

IVF #7 canceled

I was going to do a 7th IVF and I was going to do it with SIRM. We were doing the estrogen priming (EEP) protocol with intralipids. (to try to over come my immune issues). They wanted me to do a saline ultrasound first though. So I went to get that done but the doctor (I had it done local) was having a very hard time getting the catheter through. Now usually this doesn't surprise me because my cervix can be tricky but it took them around 45 minutes and they will weren't sure if they had it through. Now I swear I saw it on the u/s screen so I know they got it through eventually. But the saline never entered my uterus and they flushed it numerous times. So Dr T with SIRM wanted me to have a hysteroscopy. SO I had one done and to make a long story short it showed that my uterus was filled with scar tissue. I was diagnosed with severeAsherman's Syndrome and was told I couldn't get pregnant. Actually the doctor told my husband and I was later told at my follow up appointment. I went home and did some research and found out that most of the time Asherman's comes from surgeries like D&C's. Mine must have come from the infecgtion I had: Chronic Endometritis.  I'm still baffled though. I decided to do some digging so I went to my last RE and I got both my endometrial biopy results as well as my hysteroscopy results and picture. 

Here is endometrial biopsy #1 from 12/7/2007

*please note: ADHESIONS is Asherman's Syndrome

tissue submitted: uterine contents clinical diagnosis and history: ADHESIONS 

Gross Description: received a single container labeled with the patient's name and said to represent uterine contents. The specimen consists of scanty, pink-tan hemorragic and mucoid tissue fragments aggregating to 1.5cm submitted entirely in one cassetic. (not sure what that last word is-their print out is hard to read)

DIAGNOSIS: UTERINE CONTENTS. CURETTING: FRAGMENTS OF ENDOCERVICAL GLANDS WITH SQUAMOUS METAPLASIA AND ACUTE AND CHRONIC INFLAMATION AND DETACHED FRAGMENTS OF SQUAMOUS MUCOSA (SEE COMMENTS)

Comments: Endometrium is not identified in this specimen. Clinical correlation is recomended.

endo biopsy #2 after he put me on biotics for the chronic endometritis  

Dense mucus containing few strips of endocervical epithelium and an eggegate of inflammatory cells. No endometrial tissue identified. Three levels are examined Gross Description: Specimen labelled "endometrial biopsy" received in formalin and consists of an aggregate of dense, mucoid material, measuring 0.7 ml. the specimen is submitted in toto.

My main concerns is in both of the biopsies from what I read there was no endometrial tissue. my other concern is this. read clinical diagnosis and hystory for endometrial biopsy #1. this came from the lab it says adhesiions this is what adhesions are when I looked it up online: I'm fuming right now.

Intrauterine Adhesions ( Asherman's Syndrome ) Menstrual disorders and infertility are the most common presenting symptoms in women with intrauterine adhesions ( also known as synechiae ); others include recurrent pregnancy loss and placenta accreta. Any insult severe enough to remove or destroy endometrium can cause adhesions, and the gravid uterus seems particularly susceptible to injury ( D & Cs for miscarriages, elective abortions, or postpartum curettage or caesarian sections). Less commonly, adhesions may develop as a postoperative complication of abdominal or hysteroscopic myomectomy, metroplasty or septoplasty procedures, or other uterine surgery. Chronic inflammatory or infectious insults, notably genital tuberculosis, also can result in intrauterine adhesions ( rare in the United States ). Hysteroscopy is the method of choice for treatment of intrauterine adhesions and is safer and more effective than blind curettage.

He didn't think to mention this to me? 17 months later my uterus is filled with scar tissue and I"m told I will never concieve. This could have been caught had he told me I had adhesions/ashermans. It was the beginining stages from what I understand...I mean if my uterus was still pink/tan back in 2007. I mean who knows what "could" have happened but I wasted my time and emotions on 3 IVF's when I probably had no endometrial lining. Even though I had great "lining" on my ultrasounds my doctor that did my hystersocopy says "you don't know what that lining is". During the saline u/s I measured 8.5mm lining. That was right before my hysteroscopy. Clearly that was the scar tissue they were measuring. I called the lab and I asked them who wrote that line and they said "that is what the Dr. wrote but that is not the final diagnosis. that is what he suspected when he sent in the sample"

Here is the picture of my uterus from 2007. He said my uterus looked "normal" in his report. Yet he told me that my uterus was enflamed and I had an infection.

Here is the picture from my latest hysteroscopy. Top left is the inside of my cervix. Top right is the end of my cervix and entrace to my uterus. Bottom left is the inside of my uterus and the bottom right is my left tube after she cleared away all the scar tissue. 

She said my right tube was completely blocked by scar tissue. She actually said at first she didn't even know where she was because of all the scar tissue. Here is a picture of a normal, healthy uterus: (not mine of course) 

Note how you can see both tubes very clear in this picture and how the lining is smooth and pink. not enflammed and rough like mine was in my first hysteroscopy. I'm convinced that I did have Asherman's back when I had my 1st hysteroscopy and that he should have caught it. 

I'm not going to play with the "what ifs" but I can't believe he let me do 3 IVF's with him (IVF 4, 5 & 6) knowing that my endo biopys results said "no endometrium found" which meant there was no endometrial lining in the sample, no where for the embryo's to implant. What ever he took was something else, like...say...scar tissue. Ok before I get my self all upset I think I'll end this post right now. 

Hubby and I go see a specialist for my Asherman's tomorrow. We'll see what he has to say. We are done trying to get pregnant. At least done with the IVF's and crap. We just want to make sure I stay healthy and that this doesn't turn into something like adenomyosis  or any other form of endometriosis. I have more to update on but I will make seporate blog entries. 

Updates

Well, it's been quite a while since I made a blog entry. I'm not sure where to begin. I guess I'll start by saying that I got laid off from work on February 12th. Not to much to be said there. I kind of knew it was coming. I mean most of the people I worked with knew what their new job was going to be and I hadn't been told a thing. The week after I got laid off my husband and I flew to Texas to get our new puppy. We had already commited to getting him way back in November of 2008 and we had been getting weekly pictures of him so we were already in love. The day before we were supposed to leave I got extremely sick with what must have been a stomache bug (because later tests showed that it wasn't my gallbladder). I was throwing up, then I'd be on the floor in a ball un able to move in escrutiating pain. My husband ended up taking me to the hospital where they gave me an IV medication to make the nausea go away

 then gave me some morphine to help with the pain. The first round of morphine didn't completely help so they came to give me more. Shortly there after I got sleepy so I sent my husband home to get some sleep cause he had to work in the morning. (I think he got about 3 hours sleep that night). He came at 7:30 the next morning and picked me up to take me home. Our flight left at 5:00 pm so I had all day to sleep and rest up for our flight. unfortunately he was working so he did not. 

Anyhow, the stomache bug moved from my stomache to my bowles but at least I was able to make the trip. Between the depression of being laid off and the stomache bug I lost a little over 10 lbs in a week.  

Our puppy's name is Nikko. He's now almost 21 weeks old and the cutest thing every and really smart. He's beenn going to puppy classes but he was alrea

dy a quick learner to begin with (but that's typical of the breed-they are very easy to train). He is a Miniture American Eskimo. Here is a clip from the internet on their temperment:

The American Eskimo is a charming, affectionate and loving dog. Hardy and playful, they are excellent with children. Highly intelligent and willing to please. Alert and easy to train, the American Eskimo often ranks among the top scorers in obedience trials. These dogs like to work. They are naturally wary of strangers, but once introduced, they become instant friends. Eskimos need to be part of the family, with a firm, consistent, confident pack leader. If you allow the dog to believe he is the ruler of your home, many varying degrees of behavior issues will arise. Including, but not limited to, separation anxiety, obsessive barking, dog aggressiveness, willful, and guarding. Without enough mental and physical exercise, they can become hyperactive and high strung, spinning in circles. Small dogs have a higher tenancy to become the pack leader over humans, because they are small and cute, and often times the humans are oblivious as to what has happened. Read Small Dog Syndrome to find out more.

Here are a few pictures:                                          


9 weeks                                                                          

 

11 weeks

 


13 weeks:                                                                   

14 weeks:

 

  

Around 15 weeks they start losing their baby fur. It takes about 2 months to lose their fur and another 2 months for the fur to grow back. Nikko's fur is growing in weird patches LOL. Eventually all his fluffy fur will grow back but it will take some time. 

15 weeks:                                                                       

 

 19 weeks: 

Anyhow, I'll post another picture of him when I can get a good one. Much like toddlers he doesn't cooperate very well. So far some of the commands he knows is Sit, sit stay (till I tell him to go get the food that I put on the floor for him), lay down (he's not very good at that one but we are working on it), come, here, do you need to go out side? (he will bark in reply if he needs to go out, he will also come up to me and bark if he needs to go out even if I don't ask) we are also working on "go to bed and lay down" (and stay there till I say "ok go play"). He will wait to eat his dog food till I say "ok go get it".  We are working on him not jumping on people as well, he's getting better at that but still needs practice.  

speaking of the little guy, he's napping when he should be playing so I'm going to go play with him so he doesn't become a lazy dog. :) 

I'll make a seporate post about why our IVF with SIRM was canceled. I have a lot to update on.