Sunday, October 7, 2007

Appt with the endometriosis/pelvic pain specialist

Well he was just full of all kinds of news for me. Some of it good, some of it bad. First the office staff were very nice. The offices were well decorated and clean. I like that. I hate going to an office that isn't clean. That is a reason for me to change. If you can't put some money into making your office space and exam rooms clean and comfortable, I don't want to be your patient. They saw me fairly quickly. The dr came in quick. He seemed nice. Spoke very quietly and calmly. Those kind of voices drive me crazy because I am a pretty loud person. I can't be quiet. It would be difficult for me to speak in a quiet voice.

My obgyn told me that my lap was negative and that he didn't see anything. Well I got the operative report and it says something very different. I am very upset with my ob for not telling me this information. I'll have to make sure that when I am pregnant that I follow up on all of my lab tests and stuff carefully. Anyway, my lap operative report stated that he saw some old scarring lateral to the adexna bilaterally most likely due to old endometriosis. This is a big change from my last lap in October 06 when he told me he saw thin filmy adhesions on the left adexna that he took down. He saw NO endometriosis at that point.

Specialist's take. I have endometriosis and possibly adenomyosis based on the lap operative reports and signs and symptoms. Like 99% sure. He said that 90% of adhesions that someone has that are for no reason are due to endometriosis. The fact that my obgyn put in the operative report that he saw scarring seals it. He said I am treating you for endometriosis. This is what it is. He asked me about the prometrium that I am on. I was told it was for breakthrough bleeding and pain. The specialist said it was counterproductive for breakthrough bleeding so that didn't sound correct. However, if my obgyn put me on it for endometriosis it was an excellent decison. ????? I told him that I intend to get pregnant within the next couple of months. He of course said it was a very bad idea. In fact, he gave me a 100% chance of having pre-eclampsia and said maybe we'll probably be seeing you at XXXXXX (meaning our local Children's hospital/NICU). He kept reiterating it was a bad idea. Yeah, been told that before. I don't believe my chances for pe are 100%. They are more likely 25-50% based on the research I have done. I do believe that my chance for PIH is 100%. My chance for bedrest is 100%. To have full blown PE, it is not 100%. He said I was 2 for 2. Great doc. Thanks. However, I see him for endometriosis.

The exam was pretty embarassing. No GOWN. WTH? I had to undress from the waist down (If I had known there would be no gown, I would have worn a really long shirt!). First he checked for a hernia. None found. Then he had me bend in all kinds of directions. Then I had to lay down and he felt my stomach while lifting my leg. That is where he found it. Apparently, I have two myofascial trigger pain points. Which is another indication of endometriosis. He marked my stomach with a marker for the trigger points. Then he did a pelvic exam. He checked my bladder, no pain. He checked the left ovary. No pain. He hit those two areas on the right, and BAM pain. In fact, my appt was Friday and I hurt all day Friday and all day on Saturday from it!!!! So the option for now because I want to get pregnant is to inject a local anesthetic into those trigger points. However, I couldn't get it done that day because I didn't have someone drive me (I wish they had told me this!). He said there was a risk of a vaso something reaction (BP bottoms out, etc). So I have an appt on Nov 12th for this. Another thing that he wanted to do but can't because I want to get pregnant is to check for adenomyosis. There are two ways to check for this. 1) is a hysterectomy. Not going to happen for me anytime soon. 2) is a MRI and then you go on norethindone (progesterone) only. He also suggested a month of Lupron which I balked at. He said well don't believe everything you read on the internet. This is the part that I did not like. My aunt used Lupron and has permanent side effects to this day from it. Yes I did read on the internet. However, I am a pretty informed person. I don't make snap decisions without checking them out. In fact, if I bring something up to my pcp, she listens to me and asks why I want to do this or that? She has told me that most of her patients read one little thing and hits on it. However, she knows that I will go and look at all the information and make an informed decision. It ticked me off that he made an assumption on me that he had no business making. See docs, you should find out why your patients are hesitant on a particular treatment, etc and NOT make assumptions. I still don't think I will do lupron. He said that 90% of his patients loved it. Only 10% had problems, but that is why he does it for only a month. Knowing my luck I would be in that 10%. The problem with lupron is it is a bandaid. It doesn't make the endo go away, ever. Once you stop it, your symptoms WILL come back. I just can't see me doing it. I just can't. If it was something that would cure endo, I would consider it. However it is a bandaid to a problem that needs to be fixed. Like my ob said about the depo-provera shot, you can't undo a shot. You can always stop taking a pill. The specialist said that the women that are on Lupron want to stay on it forever, but insurance won't let them. I also wondered about the bone loss associated with Lupron but didn't bring it up. That is another reason you can't stay on it forever. Lupron puts you in menopause. I just don't think I would tolerate it well. As for now a lap is out. YEAH. Although I know you can't leave endo in there. Eventually it will have to come out. So it is just a matter of time. He said that if I was not pregnant in 6 months, he would be willing to do one. So I'm not sure. My reviews are mixed. I was upset that he told me pregnancy was NOT a good idea. Join the club. You treat me for endo, not pregnancy doc and I didn't ask his opinion about that. He did say that the good news is if I got pregnant, endo would be in remission. YEAH and it makes his job easier. I was upset that he automatically made assumptions about me that he shouldn't have. However, he did hit on the pain right away. He was able to replicate it in the office within 5 minutes. He does know what he is talking about. I do have questions for him regarding this adenomyosis diagnosis. I do have questions about these myofacial trigger points. It may be that I just need to get to know him better. So we'll see. He did say he would do the injections if I was pregnant by the 12th. Which could be a very possible thing.

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