Friday, October 26, 2007

The First RE Appointment

My test was negative this 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 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.


TNGS said...

Yay for having a plan and a Doctor who sounds like he knows what's going on. Yikes on the general anesthesia.... but at least that way you don't have to worry about pain during the actual procedure.

Maggie said...

Mellie~ SO Glad that the Dr seems to have his stuff together. I am thrilled That Jamie went with you today. I nkow how much that means to you. I also know taht you are gonna pick yourself up by the bootstraps, and trudge forward! I am the eternal optimist for you two.. three......someday four.

...LiFe aS aN AirForce Wife... said...

Melanie, I am praying for you! I hope everything goes perfect these next couple of months!

Lisa said...

I'm sure you feel relieved to have a timeline now! I am praying that you have the lightest amount of scarring and you can get it taken care of soon and go on to get the pregnancy of your dreams. You SO deserve it!

NesrstaFamily said...

That is awesome you were so prepared. Maybe your attention to detail led you to this point in your life. I think he sounds like a good doctor. I don't know, I just feel like things are going to work out for you. I have a feeling...I will keep praying nonetheless.

NesrstaFamily said...

I also wanted to add that I think it is wonderful you have such a caring and willing partner. Thanks so much for being brave enough to share your journey. I am finding out so many things about you and this disease through your posts. You are a very strong woman Melanie!

KLS said...

It's always better to have more information. It sounds like there was a lot of positive information from the appointment, AND it is nice that you won't have to wait too long to do the testing! Hang in there!

coach said...

I know we have things to work through my heart. I was quiet in light of all the info we were digesting. In an attempt to get a read on the doctor, his methods, and how to proceed in the SAFEST manner that ensures my wife is kept out of harms way. I love you and my life is nothing without you... will not sacrifice that.
The Dr. seemed experienced, intellegent, and was un-fazed by your questions (always had an answer, no back-tracking, and seemed to embrasse your research). He made me feel more at ease about our future.... Heart U!