I hope all of this makes sense, I'm posting from my phone.
We talked to my Lyme doctor Monday night. The main thing is that he said that I'm not even stable enough to make the trip to Nevada to get treatments. I've had to go to the ER so much and there's so many problems that he doesn't even think I can make the trip out there yet. We need to get the pain and cysts under control. He wants to know what my gynecologist said at my appointment yesterday, so we talk to my lyme doctor again in a week.
My appointment yesterday was very long, and heavy. We were there for over 2 hours, discussing options. We first saw a PA that we've seen before. Once we talked, she went to get the main doctor (who did my surgery). We talked about doing the Lupron injections. At first we decided that we were doing them, then we all decided to not do that. The said effects are terrible and it takes up to 3 months to work. It puts you in menopause to stop the cysts and endometriosis. That's just not normal for a teenager, so it would be hard on my body. Ever since I got sick, I've been the 1% who has all side effects possible of every medicine. That's just how I am now. The doctor was very good about listening to our concerns, and agreed that doing the injections would be risky for me. They would cause sleep problems, hot flashes, mood issues, depression, and other things. It sounds like it would make me feel how I do when I'm on steroids, which I can't tolerate anymore. There are medicines to try and treat the symptoms, but that's just more medicine.
As we discussed more in detail everything that's happened since surgery, the doctor got more frustrated. He could tell how frustrated we are as I cried while we were talking, and he's upset that he doesn't know what to do. I'm not a usual case, and he's stumped as to why I'm in so much pain all the time. He made sure and said he's not frustrated at me, just at what's happening.
He now thinks that I have scar tissue/adhesions and that is what is causing most or all of the pain. It can attach to organs or anything and move them or make them get stuck somewhere that they're not supposed to be. This can happen because of surgeries, along with other things. It can twist and bind the bowels and cause tons of problems, which is what he is thinking is happening with me. It can cause complete bowel obstructions. It doesn't only happen to the intestines, it can happen to anything. The ultrasound lady at my most recent ER trip, actually saw my intestines all twisted on my right side. Some people just have that, so she said it was not a big deal. But now that he brought that up, I remember her commenting on that. So what does this mean as far as a plan of action? I'm starting this medicine to try for a week. It's actually an anti-depressant, so I'm not quite sure what it's supposed to accomplish. I think it might help with pain. Next week I return to the gynecologist. If he still suspects scar tissue, surgery will be our only option. The only way to know if it's scar tissue for sure is surgery. Because cysts come and go, and my pain is in the same exact spot and consistent, he really suspects scar tissue. My pain is only on the right, but I've had cysts on the left and they have not caused pain. It completely makes sense, as I have almost every symptom of scar tissues and adhesions. Scar tissue has a very high rate after the removal of the gallbladder, appendix, gynecology surgery, endometriosis, and pelvis surgery. I have had every single one of those. I had two big abdominal/pelvis surgeries in three months. My appointment next week couldn't come fast enough. I'm so ready to get this taken care of. If we are going to have to do surgery, I want to do it as soon as possible. I think it would be best(not a great choice at all, but none of our options are good) if it is scar tissue, because that means that the cysts are mostly under control and we won't have to do the Lupron at this time. I would just have to recover from the surgery, and continue on the birth control. Do I want another surgery? No way. But surgery is sounding better than at least 6 months on the Lupron with the side effects. There are ways to take care of scar tissue without surgery. But if it has binded the intestines and who knows what else, you have to get in there and take care of it. So until my appointment, we're just trying to manage the pain, praying for direction. We're trying to avoid another surgery, but that might be the next step. I would appreciate your prayers for this, that the doctor has more clarity about what to do. Thank you very much.