Feeling Like an Idiot

I had the appointment with the gynecological oncologist today. R came with me for moral support. And that thing I saw on my ovary is...

Nothing, apparently.

I haven't heard from my PCP's office yet, but I told the nurse at the appointment today that I had an ultrasound done on Saturday, and they were able to call the imaging center and get information about it. I don't know if the gyn onc saw the actual ultrasound images or just received the report (I'm guessing the latter), but apparently my ovaries looked normal. Well, normal as far as PCOS ovaries go, anyway.

So she didn't do another ultrasound, but she did do a pelvic exam and a rectal exam (first - and hopefully last! - time I've had one of those). She said everything felt normal.

Overall, the appointment was reassuring. She said the fact that I was on birth control pills for 8 years, have had a pregnancy, and have been breastfeeding for almost a year are all things that help reduce the risk of ovarian cancer. Because of the PCOS, which involves higher levels of estrogen in the body, she is more concerned about the risk of uterine cancer.

Irony of all ironies, to reduce that risk, she recommends that once we are done with fertility treatments for good, I should go back on birth control pills until I'm at least 46 or 47. She is aware of my Factor V Leiden mutation but thinks that a progestin-only pill would be safe. Still, she suggested that once I get to that point, that I meet with a hematologist to discuss the risk. I definitely hadn't envisioned several more years of birth control pills in my future!

She also wants me to lose about 40 pounds, follow an anti-inflammatory diet, and exercise for at least 150 minutes a week. All of which is stuff that I know I need to do, so now I just have to get my butt in gear and actually do it. She wants to meet with me again in 3 months, so I need to have some progress to show at that time.

All of that still leaves the question of what is bugging my right hip, pelvis, and lower back. My PCP may be waiting for the x-ray results before giving me a call, so we'll see if that sheds light on anything. I'm beginning to suspect some of it may have to do with bad posture. My mom has a small desk chair that has a back support pillow strapped to it. I asked her if I could borrow it the other day. When I sit in that chair, my symptoms aren't nearly as bad, other than some minor aching all the way across my lower back, which I suspect is because sitting up straight for long periods of time isn't the kind of posture that area of my back is accustomed to having to support. If the symptoms persist, I'll go back to my PCP to talk about the MRI he had mentioned a couple of appointments ago.

Thank you again for the support. I feel like the girl who cried wolf. I hate it when I don't know what's going on with my body, and that I get so nervous any time I have a symptom of anything.

No News

By the end of last night, I managed to convince myself that what I saw on the screen was a simple functional cyst with very thin septations. (Apparently, it is quite possible for those to have their own blood supply, at least according to the research that I did.)

That kept me calm and (no pun intended) functional and able to actually get some things accomplished today. Because of that, I chickened out about calling the doctor's office. I figured if I got a call from there, I'd answer it, but I didn't.

The appointment with the gynecological oncologist is tomorrow, late in the morning. I'm assuming she will do an ultrasound, so I will just see what she has to say.

I've realized that from now on, I should only look at the ultrasound screen if I'm in the room with someone who is allowed to explain what they're seeing. Lesson learned.

Edited: There Is Something On My Right Ovary

I had the ultrasound done this morning.

The tech didn't say anything and I didn't ask, but there is definitely something on my right ovary. It looked like four follicles stuck together, but he was measuring it as one. I searched images online, and it looks like a complex ovarian cyst. Those are the kind that have the potential to be really bad things.

He also did blood flow imaging. When he was on the right side, I remember seeing a pretty clear image of blood flow and thinking that must be my ovary's blood flow. I don't remember if it was going to the cyst or not, because I didn't know to look for that, but I think it was.

Blood flow to a cyst is a really, really bad sign.

Also, while he was looking at my bladder, before he did the ultrasound, there was something on there that looked long and thick and squiggly and very white. I don't know much about bladder ultrasounds, but the fact that it was very white (the more white it is, the more solid it is) and squiggly (not of consistent shape) also makes me nervous.

I am scared. Very, very scared.

The tech said my doctor will have the results when he gets into the office on Monday morning. That seemed really fast to me. I don't know if that's standard practice or if he's going to be rushing it along because he thinks it shows something concerning.

I am going to try to be patient and wait until Monday morning and call my doctor's office first thing. I am debating going to the ER and telling them I'm having pain and that I have a cyst. But if it's something bad, they're not going to be able to do anything before Monday other than possibly confirm it. I don't know that they could say for sure that it's something not bad. So I might as well just wait. I'm just not sure how I'm going to make it through the weekend.

Edited to add: Thank you for your comments and prayers. I have calmed down a bit, and I am not going to the ER, I will wait until Monday for the ultrasound report.

Usually Googling this kind of stuff freaks me out more, but I've actually found some information that has reduced my panic a bit. Of course I'm no expert on any of this so I could be completely wrong about what I saw, but right now what I have found is comforting me, so I'm going with it.

I think what I saw was a fluid-filled multi-septated cyst. I know follicles are supposed to be completely black on ultrasound (fluid-filled) without any white (solid matter). Other than what I am thinking are septates (a few lines going in various directions), I didn't see anything else in there. I found a study online that says septated cysts without a solid mass in them that are less than 10 cm and the septates are less than 3 mm are almost always benign. I didn't ask how big the thing was when the tech took measurements, but I saw a lot of my typical small PCOS follicles (usually less than 1 cm) in there, and this thing looked like it was maybe 3-4 times as large as that, definitely not 10 times as large. Also, I pulled out a tape measure, and I don't think the things I'm assuming are septates were anywhere close to 3 mm thickness. So, all of that helped.

Also, I read something else that said even if there is blood flow to a cyst, in pre-menopausal women it is not a reliable sign of whether something really, really bad is going on. And I can't say for sure that the blood flow was even going to the cyst. So I'm also hanging some hope on that.

Oh, and that long, thick, squiggly, white thing that I saw next to my bladder? Um, after looking at some ultrasound photos, I'm about 95% sure that it was my bladder wall.

I plan to stop consulting Dr. Google now (no, really). I will post when I have news of the report. Depending on how calm I am, if I am able to focus and get things done on Monday, I may even just wait for the doctor to call me rather than beg for the results first thing in the morning. And I am 2 hours behind East Coast time at this point in the year, so don't be surprised if there isn't a post until evening.

Thank you again for all of the supportive words and thoughts.

Seriously Freaking Out

I know I haven't been around much and have lots of catching up to do in terms of commenting. I was planning to do that next week because R and I are taking the week off to stay home and get things done around the house. (I have been reading, just not commenting very frequently.)

So I apologize for not commenting much, and for posting again before catching up on the commenting. But I'm freaking out.

I didn't 'fess up to this in my last post, but I've been dealing with anxiety lately, and this week it seems to be getting the better of me. It's not entirely unfounded, but I go automatically to worst case scenarios.

In the beginning of December, I started having some mild lower back pain on the right side. It didn't go away after a couple of weeks, so I went to the doctor. By that time, I was also having some very mild right hip pains and pressure. The doctor diagnosed a pulled muscle in my lower back and recommended ice and ibuprofen as needed. (I should point out that I carry Miss A on my left hip, not my right one.)

Well, the back pain has eased up, though I still feel it sometimes, but the hip thing is getting worse. The pain isn't really getting worse, but the pressure is. Occasionally I feel mild pain in various places on my hip, and sometimes I'll have shooting pain down the back of my leg. Usually it only goes to my knees, but occasionally my toes tingle too. But overall, the pain is very mild.

What does seem to be progressing is the pressure. It's kind of hard to describe, but basically just to the right of my c-section scar, at the edge of the pelvic area where it meets the groin area, I feel pressure. At first it was just when I was sitting, and if I would scoot forward to the edge of my seat so that my leg could be straight as it reached the ground, that would reduce it. Now I can feel it when I stand as well - it just feels like some sort of mild pressure, like something is pressing slightly on the area.

I went back to the doctor a couple of weeks ago and he sent me to physical therapy, but that hasn't helped it. I went back again yesterday, and this time he pressed all over the area and he didn't feel any lumps or bumps. (Neither do I, and I've pressed it a lot.)

I do have some swelling I guess you could call it immediately above the right 1/3 of my c-section scar. That's the side the doctor ended on when she was stitching. It's not a lump there either, it just looks like I have a little bit more fat protruding on that side, but the area wasn't like that (lopsided with more fat on one side than the other) before my pregnancy. The edge of my pelvic area where it meets the groin crease also seems to be just the slight bit swollen. There's no redness or anything like that, and it doesn't feel like anything is protruding that can be pushed back in, like a hernia. Also, those protruding/slightly swollen areas are soft - I don't feel any hard pieces of tissue in there.

The doctor said he thought maybe it was scar tissue pulling. He ordered a hip x-ray and pelvic ultrasound as the next step, but he doesn't seem to be overly concerned. However, later that day, it started to feel like my intestines are pushing up under my ribs and I was feeling shortness of breath, and last night I was standing in front of the mirror examining the area above my belly button because it seemed to me like that area looked slightly distended. I was worried that fluid was building up in that area (ascites - caused by one of the very bad things I'm freaking out about). But I also realize that anxiety can do surprising things to the body. So I know that it's just as likely that those things and my decrease in appetite and frequent trips to the bathroom are from nerves rather than something ominous.

I know there are a lot of different possibilities, most of which are totally benign things. Yet of course my mind goes right to the worst case scenario. Part of the reason is that I did IVIg during pregnancy to reduce my NK cells and cytokines, which are also some of the kinds of cells that help fight off really bad things. I know that doctors give IVIg to cancer (okay, there, I finally said the word) patients, and I never really asked my RI about how all of that works. But in doing some reading since then, from what I have found, IVIg is given to cancer patients after they're deemed free of cancer, oftentimes in order to prevent their immune system from rejecting something like a stem cell transplant. So I don't think IVIg causes cancer per se, but now I'm wondering if taking it could allow something like that to grow more easily if it is there.

So, there it is - my craziness out in the open.

I scheduled the pelvic ultrasound for tomorrow, but they don't do x-rays on the weekend, so I will get that done later this afternoon or on Monday. I doubt my doctor will have the ultrasound results back and reviewed by Monday.

On Tuesday, I have an appointment with a gynecological oncologist, which ironically I had made several weeks ago before all of this started to unfold. She was on TV talking about prevention and early detection of ovarian cancer, and since I'm at a higher risk (due to the PCOS, being overweight, having Miss A after I was 30, plus the fact that my ovaries have been poked literally more than 100 times probably doesn't help either), I had wanted to talk with her about it. Her office requested my records from Denver and the ob, reviewed them, and decided that it was appropriate for me to see her, so I feel like that at least affirms that I am appropriate in thinking that I may need to be more aware and proactive about this than the average person.

(I do realize that "aware and proactive" is very different from "completely freaking out", I just haven't figured out how to stay in that first category.) I had brought up my desire to be proactive in that respect to my ob a few years ago, who promptly blew me off by saying "Do you know how rare that is? I've had maybe 3 patients in my whole career who have been diagnosed with it." And yes, I know that it's not nearly as common as breast cancer, but I think it's something that occurs more frequently than could be called "rare".

I also called and scheduled an appointment with my therapist, who I haven't seen since October since I was doing really well. We usually meet for an hour, but I scheduled an hour and a half. Maybe I should have asked if she had the entire afternoon available...

I need to figure out how to get these runaway thoughts under control. I don't want to pass along this kind of anxiety to Miss A, and I know being around it can rub off, because I think that's how I got it.