Monday, October 29, 2007

"The Only Child Syndrome"

When you hear the word syndrome, don't you think of something like...a disease?? An abnormality, perhaps? It really pisses me off that my daughter's step-mother (who happens to be one of NINE children and is 20 weeks pregnant with a child of her own) decided to use those words to describe Elise's behavior in her blog.

Gee, I am really sorry that not everyone can pop out insane numbers of children to ensure that their kids like to share with others. It's been my personal experience that most 3-yr olds don't like to share their toys regardless of whether they have siblings or not.

It's pretty unfortune timing that she should choose to call Elise out as one of those icky "only children" while I am in the midst of infertility testing.

Testing is scheduled

We will be doing the SHG this Friday, November 2nd at noon.

Friday, October 26, 2007

The First RE Appointment

My test was negative this morning...so moving on to the appointment...

I wasn't in the greatest mood this morning. I fully expected a negative test, but it still sucks to see it. While we were getting ready, Jamie was acting silly - dancing and singing in the shower, etc. He was trying to lighten the mood for me.

We arrived at the office 15 minutes early as requested and completed some additional forms. They had already collected a bunch of forms (mostly family history and my history with pregnancy and prior miscarriage, etc) via fax about a month ago when I made the appointment. They got us back pretty quickly, but it was still about an hour wait to see the doctor. That seems fairly standard these days (but it's annoying). The couple that went in right before us was just being released to their regular ob/gyn because their treatment had been successful and they were pregnant. They looked so happy...it was nice to see. There was another girl who looked to be around our age in the waiting room. I found myself wondering what was wrong with her.

Once we got called into the doctor's office we sat down and he went through our file. He had received all of my records from my previous doctors, and I could tell that he had studied them. He discussed the D&C that I had after Elise's birth and asked a few questions about that. He told me that with my history, I was definitely a prime candidate for scarring (that was not anything new to me). Then he began discussing the testing that he would recommend.

He prefers to do a sonohysterogram (SHG) first as opposed to a hysteroscopy. He explained that his reasoning is that the hysteroscopy is a 2-dimensional test, whereas with the sonohysterogram he can see a bit more. This is basically how the SHG will work: They will insert a small catheter into my cervix. Then they will insert sterile water into my uterus. By seeing where the water goes (or more importantly where it does not go), he will be able to tell where I have scarring and approximately how much scarring there is. This test is less painful and less invasive than the hysteroscopy. When he was explaining this to us it made perfect sense, but this goes against almost everything I've read which states the the hysteroscopy is the "gold standard" test for Asherman's Syndrome. This leaves me feeling a bit confused.

I asked some questions, which I had prepared ahead of time. I got a lot of advice regarding what to ask from my online support group.

Question 1: How many cases has he treated?
His Answer: He's been practicing for 20 years and has seen "scores" of women with scarring of some degree. He's only seen about 4 cases that were so severe that the entire uterus was completely obliterated with scar tissue.

Question 2: How successful has he been in treating the cases that he has seen?
His Answer: Out of the 4 very severe cases, 3 of them went on to become pregnant. He sees varying degrees of success depending on the location and severity of the scars.

Question 3: What instruments will he use to remove the scarring?
His Answer: He uses 3 different instruments. Which one he would choose would depend on the location and nature of the scarring.
1. Microscissors (This is what I wanted to hear.)
2. I forgot the name, but it's a precise tool that targets only one area and does not use heat, but it's kind of like a laser. (I hadn't heard of this, and now I am kicking myself for not writing it down.)
3. Laser (NOT what I wanted to hear, but he said if the scarring is at all vascular, this is the only option because the scissors would cause bleeding).
The reason I don't like the laser is because any introduction of heat can produce more scars.

Question 4: Would he insert a balloon after the procedure?
His Answer: Sometimes - but usually he would not. He said that the problem with the balloon is twofold. Introduction of a foreign object into the uterus raises the risk of infection post-op. The second reason is that the uterus tries to contract on the balloon and puts pressure on the walls. He feels that this makes it harder for the lining to regenerate in the area that is touching the balloon. This answer sounded appropriate to me. There are some A-List doctors who do not use the balloon, so I was not bothered by this.

Question 5: Would he prescribe hormone treatment following surgery to aid the uterine lining in regenerating?
His Answer: Almost always. That was good to hear.

After all of my questions were answered, he told me that he wanted to give me a bit of good news. He said that the fact that I do still cycle (even though it's extremely light) is a good sign that I'm probably not going to be an extremely severe case. In his experience, the worst cases cause a complete cessation of periods altogether. He asked me about my cyclical pain and cramping. I was telling him that my cramping has gotten much worse since going off the birth control pill. He feels that this is also a positive thing. He said that it is possible that my uterus still has lining to shed, but the scarring is near my cervix and prevents the lining from shedding. This causes additional cramping as the uterus tries harder to expel the lining. If the scarring were only in one spot and near the cervix that could mean that I still have a mostly good uterus with good lining and it's just been blocked. This is kind of the "best case" scenario. The third piece of good news is that I didn't run fever before or after my D&C. He said a fever would indicate infection and that would possibly worsen my scarring. The absence of fever should work in my favor.

I aksed him what he felt my prognosis would be. He wouldn't really say much and said we would have a better idea after the SHG. I liked the fact that he wasn't going to make any promises without the information he needed. I also showed him all of my BBT charts. He thought they were very nice looking and said that I obviously ovulate regularly. I already knew that, but it's good to hear that something is working as it should!

Overall, I left feeling pretty decent. Jamie was a little bit quiet. He said he was just digesting everything. I think he's been pretty resistant to accepting the idea that we probably have an issue. After talking with the doctor today, he realizes that we probably do have some things to work through. I think he might feel a little disappointed, but I know he feels optimistic. He said that he liked the doctor pretty well. He felt that he was experienced and was really good about addressing my questions. Even when I questioned his methods, he never became defensive. We both liked that a lot.

Since we were right in the neighborhood, we stopped at Cheesecake Factory for lunch. Jamie proposed to me there and we hadn't been back since then, so it was special to eat there together today. I even had a glass of wine!

So here is the plan: On the first day of my next cycle I am supposed to call and schedule the SHG. This must be done between CD 5 and 10. This means I am not going to have to wait another month! HOORAY! The doctor will meet with me immediately following to discuss the test results. Assuming that we find some scarring, we will schedule surgery for the next cycle. Tentatively I will be doing testing in early November and surgery in December. The timing is good, because football will be ending and Jamie is not coaching basketball this year.

Surgery will involve general anesthesia. I hadn't expected to hear that, but he wants to do a laproscopy along with an operative hysteroscopy. There will be a small incision through my belly button. I'm not too excited about that, but I'll do what it takes.

I think the best thing about today's appointment is that I now have a plan and a timeline. It should not be too much longer before I finally get some concrete answers.

Thursday, October 25, 2007

What if...

I really shouldn't even let myself think of all the what ifs.

I was on Mommy Zone tonight and I saw a picture posted. It was a photo of the 2 daughters of one of our members. The older daughter was holding her little sister. They were cheek to cheek, and it was precious. It was really a beautiful picture. I looked at it for a moment and tried to imagine Elise holding a younger sibling.

Then I realized...I may never get to witness that.

Her dad is having another child early next year. This will be his third child. He is a shitty father. I can't understand why he would be blessed with THREE babies. He hasn't participated in raising the first 2, and the jury is still out on the third. I supsect he will not be anymore instrumental in that child's life than he has been in the first 2. He lets a stripper raise his first child. Yes you read that correctly, and yes I am serious. He just had a shotgun wedding 2 weeks ago. Just the thought that he can procreate is such bullshit.

I'm all emotional today, so I must have PMS.

Wednesday, October 24, 2007

Getting nervous

I am not sure why, but now that my appointment is only 2 days away, I am getting nervous! I have this wild dream that I'll turn out to be pregnant on my own and not need to go through any testing. I am 9dpo today, so I am planning on taking a test on Friday morning before the appointment.

I am somewhat dreading the hysteroscopy - both because I am not liking the idea of pain and because I am afraid of getting bad news. I wonder how long I will have to wait for the testing??

I got a call from the nurse today to confirm the appointment.

We had free flu shots today at work, but I declined. After just being so sick on Monday I was a little afraid to get the shot today. Plus, I am in the 2 week wait...soooo...I passed up the opportunity. I will have another chance next week if I change my mind. I'm glad I'll have the opportunity to discuss it with the doctor beforehand. I know that the flu shot is not recommended in the first trimester and some ob's do not recommend it at all.

It's funny how trying to conceive complicates life, isn't it??

I will be back on Friday with an update from the appointment.

Thursday, October 18, 2007

Team Players

Since I am married to a coach, there are a lot of sports analogies used in our house. I've picked up on the lingo, and I have to give Jamie credit for being a team player. He told me today that he requested a substitute teacher to take his classes next Friday so that he can accompany me to the doctor for our consultation. I didn't even ask him to do that, because I know nothing much will actually happen at this first appointment with the RE...and I know how hard it is to miss school on a game day.

I love you so much for that, baby.

No more waiting

Well, Jamie and I have been planning a vacation for this coming summer in our minds for quite some time now. In anticipation of a possible pregnancy, I have been hesitant to actually book anything. Today I decided to heck with that! Life does not stop while we deal with all of this, and I am taking my baby to Disneyland! I booked the trip in the car on my way home from work today. It feels great to have something to look forward to!

Now, say I am pregnant this cycle...that would give me a July due date and force a cancellation of the vacation. I think this is the first time since all of this began that I actually hope I am not pregnant!

I just got tired of waiting.

Tuesday, October 16, 2007

It's a long story...

I've been blogging for a few months now, and I really enjoy it. I've been trying to keep my current blog (It Feels Like Today) pretty light. I like having a place to share pictures, give general updates, and focus on the good things in life. The one thing that has been bothering me is that I haven't felt like I wanted to share everything that is going on with me publicly, yet I really feel like I need an outlet for putting my thoughts in writing. I think it's somewhat therapeutic and it helps me to work through some of my feelings and thoughts. So, I decided to create this blog as well. It won't be viewable to the public, so if you are reading, you are someone that I wanted to share the more private side of my thoughts with.

I want to post a disclaimer: Some of the things I say here won't be polite. Some won't necessarily be rational. This is my way to get everything out and work through things. I sincerely hope I don't offend anyone, but if I do please accept my apologies in advance. It is not my intention. I hope I don't get any mean or insensitive comments (and I'm sure I wouldn't from anyone who I share this with)...but I just wanted to say that up front.

So now I suppose you are probably wondering what is on my mind!

It's a long story. It all began about 2 months ago. But I probably need to go back even further to when Jamie and I got engaged. We had a whirlwind romance, and after only a few months we knew that we wanted to be together for the rest of our lives. We talked about the future a lot, and naturally one of the things we discussed was having more children. Jamie is an amazing father. He blew me away from the very start. I remember vividly the first time he and Elise met. When we first began dating I would meet him out or drive to his apartment before our dates. If he picked me up, I didn't invite him inside. It was important to me that I didn't introduce anyone into Elise's life unless I was absolutely sure they were special. I had seen her father parade a variety of women through his home during her visits (even before our divorce was finalized), and it disturbed me. I vowed not to do the same thing. So when I decided to have Jamie and Elise meet, it was a big deal.

He was in the midst of baseball season and his schedule was crazy. By the time he would get home from baseball practice Elise would already be tucked in bed and sound asleep. Back then she was out by 7:00pm. He was coaching tournaments on the weekends for a few consecutive weeks, but he had Sunday afternoons free. His Sundays were precious, because it was his only down time. Based on my previous experience with Michael, I didn't expect that Jamie would sacrifice that free time to come hang out with me and my 18 month old. But I was wrong and very pleasantly surprised when he asked to come over one Sunday afternoon. I agreed and assumed he would drop by for 30 minutes or so just to say hello quickly and meet Elise. He arrived around noon just as my parents were heading out the door to run a bunch of errands (back then I was still living with them and trying to get back on my feet after the divorce). He came and and was introduced to Elise for the first time, and the 3 of us sat in the living room floor with her toys. I kept expecting him to get up and leave...but he didn't. He sat with us for 5 hours that afternoon. He sang songs. He played peek-a-boo. He read stories. Elise loved him from day one, and I was officially in love as well.

So when the discussion came up about adding to our family, naturally we both agreed it was something we wanted to do. Jamie told me about how much he's always wanted children. He was 32 when we married, and most of his friends were already settled down and had children of their own. He was often the only coach that didn't have a family to greet him on the field after games. He told me how he had always dreamed of having a child of his own to come running to him after the final minutes of the football games ticked off the clock. He was so excited the first time Elise and I attended a game and came to meet him at the end. It was a great feeling for him to see Elise sprinting towards him, anxious to jump into his arms. Over the last year and half, he's been such an amazing father to her. I cannot say enough good things about him. We truly have a 50/50 relationship and I feel beyond blessed to have such an involved partner in my life. I know first hand how it feels to do it all alone. I can honestly say that I never take Jamie for granted.

Once we had decided to have children, we began discussing the timing. Jamie was ready from day one, but I needed a little more time. Around the same time that we married we booked a dream vacation to Hawaii. I did not want to be pregnant during the trip and risk not getting to go if complications should arise given my history of pre-term labor with Elise. I convinced him to wait until we got home from the trip. So we agreed to wait a year and take our vacation. I enjoyed our first year of marriage so much. We've only grown closer as time has passed and I love that we had that first year with the 3 of us to settle in. We took our trip back in June and I went off the pill immediately. We thought we would be pregnant by now.

I won't go into graphic detail, but I could tell as my body weaned off the pill that something was not quite right. I am charting basal body temperature, so I know that I ovulate and have a nice strong luteal phase. I don't believe that I have any issues aside from the one big problem.

I began to do some research about my symptoms - I'd noticed them before but dismissed them as being caused by the pill. Once the pill was no longer a factor and the problem persisted, I began to get the nagging feeling that something was going on. That is when I ran across a description for Asherman's Syndrome online. I knew the instant that I read it. I began to read the stories of other women who have AS, and I felt like I was reading my own story. Here is a brief description of AS from http://www.ashermans.org/:

What is Asherman's Syndrome?

Asherman's Syndrome is an acquired uterine disease, characterized by the formation of adhesions (scar tissue) in the uterus. In many cases the front and back walls of the uterus stick to one another. In other cases, adhesions only occur in a small portion of the uterus. The extent of the adhesions defines whether the case is mild, moderate or severe. The adhesions can be thin or thick, can be spotty in location, or can be confluent. They are usually not vascular, an important attribute that helps in treatment.

Symptoms

Most patients with Asherman's have scanty or absent periods (amenorrhea) but some have normal periods. Some patients have no periods but feel pain at the time each month that their period would normally arrive. This pain may indicate that menstruation is occuring but the blood cannot exit the uterus because the cervix is blocked by adhesions. Recurrent miscarriage and infertility could also be considered as symptoms.

Causes

Most commonly, intrauterine adhesions occur after a D&C (dilatation and curettage) that was performed because of a miscarriage or because of retained placenta with or without hemorrhage after a delivery. Adhesions sometimes also occur in other situations, such as after an elective abortion, after a cesarean section, after uterine surgery (for example, after surgery to remove fibroids), or as a result of pelvic tuberculosis. The more D&Cs done after a delivery (and especially D&Cs done in the second to fourth week after delivery), the higher is the likeliness of developing adhesions. In one study of curettage after delivery the frequency of scarring was 25% when surgery was done during this time period. Each case of Asherman's Syndrome is different, and cause must be determined on a case-by-case basis. In some cases, Asherman's may have been caused by an "overly-aggressive" D&C.

There is a variant of Asherman's Syndrome that is more difficult to treat. This is a so-called "unstuck Asherman's" or endometrial sclerosis. In this condition, which may coexist with the presence of adhesions, the uterine walls are not stuck together. Instead, the endometrium has been denuded. Although curettage can cause this condition, it is more likely after uterine surgery, such as myomectomy. In these cases the endometrium, or at least its basal layer, has been removed or destroyed.

Some of you may know that in the weeks immediately following Elise's birth I had quite a few issues. I eventually hemorrhaged and was rushed in for an emergency D&C to remove retained placenta. I believe this is when I contracted AS. Armed with this information, I made an appointment to go in and speak with my ob/gyn, but I had to wait almost a month to get in. I met with her a few weeks ago and she confirmed a strong suspicion of AS. She wouldn't even touch me and referred me directly to a Reproductive Endocrinologist (an infertility specialist) who will do the official testing and staging. I am currently awaiting that appointment now. We had to fill out a bunch of paperwork about our histories and will be having a consultation on October 26. From there hopefully we will schedule the testing, which is an outpatient surgical procedure called a hysteroscopy.

I've been through a full range of emotions beginning with anger and transitioning into sadness. How can it be that a wonderful man & father like Jamie could end up never having the experience of a biological child?? Why would this be happening? I can't even remember what it felt like to be pregnant anymore, and I am terrified that I won't have another chance. I'm sad that I may never get to watch Elise grow up with a sibling. And it's not fair.

But there is a bright side as well. If the scarring is mild, then treatment is about 70-80% effective. Treatment consists of an operative hysteroscopy and cutting away of the scar tissue (to put it very briefly) followed by hormonal treatments to assist with the regenerating of the uterine lining. I will talk more about treatment options once I know exactly what I am dealing with. For now it's just been very hard to not know. I am a planner, and it kills me to not know. If I knew, I could focus on the plan.

The doctor told me that we could continue to try to conceive while I awaited the testing and diagnosis. We've been doing that somewhat half-heartedly. Part of me does not really see any point, but there is still a small part of me that hopes maybe I am wrong and I don't have Asherman's. Please let me be wrong.

Jamie has been wonderful - he is the eternal optimist of our marriage! I know he's dealt with me in some rather unpleasant moods since this all began. I told him that I felt guilty, because if he had known that I may never be able to give him a child, maybe he would not have wanted to marry me. Of course, he assures me that it doesn't matter to him. Elise is our daughter and he has a child. When we talk about it he is so sweet that he makes me cry. And I have cried on his shoulder several times. It is still just very hard to imagine that our family could be complete. I don't feel ready for that yet.

So this is the reason that I wanted a separate place to talk. I want to have an outlet for all of this, but I don't want it to take over my life. I am SO blessed in so many ways. I am making a big effort at not focusing on this hurdle. Some days I do better than others. I joined an online support group for AS sufferers and it has been an amazing resource. I've learned more than I probably wanted to know at this stage. But it is good to go into my appointment well-informed.

I hope that writing here will be a good thing for me. I already feel a little bit better just getting this first post out of the way. If you are still reading, then you must be a true friend! This was a long entry!