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part II new
      #229070 - 12/03/05 04:59 PM
jen1013

Reged: 05/06/05
Posts: 1322
Loc: the wabe

I was going to post more earlier, but I was sort of debating what to say, because I was afraid of sounding like a neurotic freak. Then I thought -- too late.

So. Anyway. When I had my initial appointment, the gynecologist immediately thought "endometriosis" but looked a little dubious about the abnormal vaginal bleeding I've had. So he ordered the ultrasound just because of the bleeding -- he said that usually he sees it being caused by polyps, fibroids, or cancer. He then hastily added I was way too young for cancer, that it was like zero chance.

OK. Whatever. So I have my ultrasound. It hurt really bad to have the wand thingy stuck in (because I have vestibulitis, I guess), but after that it wasn't so bad, just a bit uncomfortable. After awhile she said she was going to check out my ovaries and moved the wand way to the right. No big deal. So when she moves to the left side, OUCH! This part of it is pretty painful. I try to be a good sport about pain during medical visits/procedures (although, I don't know why, since they NEED to know if you're in pain), but she noticed I was in pain and asked me twice if I was sure I didn't have the same pain on my right side.

Anyway, so FINALLY she's done, and they do the SIS thing. Like I said in my other post, this is incredibly painful. Towards the end they've got the wand back in and they're staring at the screen and they start mumbling to each other. I hear the nurse say something like, "Yeah, it's really big, it's 5 cm". I assume she's talking about my ovary, and because of my Embarrassing Lack of Basic Knowledge of Human Anatomy, I'm thinking, wow, 5 cm is big for an ovary? (I guess I shouldn't admit this but for some reason I had some murky picture of them being like kidney-sized.) Then the doctor says something about getting a follow-up in six weeks, and then there's this long silence, and he says something else I can't hear other than "vascular" and says "four weeks". And then in a voice I can actually hear the doctor cheerfully says he'll talk to me more in a few minutes in the exam room.

So it's about 15-20 minutes later when I talk to him (I was in a lot of pain and couldn't even get off the table at first). He tells me everything looked fine except that I have a cyst on my right ovary. OK, so no big deal, and I think, oh, OK, that's why the nurse asked me about the pain. He also mentioned there was quite a bit of blood going to it (which is maybe what the vascular thing was about???) and that unlike the usual cysts, it was not filled with fluid -- it was solid. He said possibly that it was where I ovulated last month and that cysts were very normal. So then he said he really strongly recommended doing the laparoscopy, and casually added he could look at the cyst at the same time and maybe take it out if needed. Otherwise, he said, he wanted to do a follow-up in four weeks to check out the cyst.

I know nothing about cysts (again, Embarrassing Lack of Knowledge [etc.]) but remember lots of women here have had them and they're no big deal, so I'm like, OK, whatever, because I had wanted to do the laparoscopy anyway. He said if he found any endometriosis he would cauterize it at that time. He also said he would try injecting the hyper-sensitive painful tissue with some sort of steroid treatment to treat the vestibulitis (which basically means really painful entry at sex). I asked about side effects of that and he said none, really. Feeling guilty about not being an informed patient I asked him if the cyst was abnormal then what did that mean? He kind of hesitated on this one and said, "Well, if you were 50, we might be looking at ovarian cancer," and, once again, hurriedly added that because of my age it was a one in 100,000 chance. And then he changed the subject. Because I wasn't worried anyway, I didn't notice this until later.

At some point in the conversation, and I can't remember when, he also mentioned something about seeing fluid in my abdomen. This went right on past me, because, again, Embarrassing Lack of Knowledge thing, I just sort of figured there was fluid everywhere. Like, this is a really stupid thing to think, because otherwise every time you get a cut you'd do some serious leaking. I am SO going to haul out my children's encyclopedia and read About The Human Body.

So I get my laparoscopy scheduled for next Thursday. As in a WEEK away. At this point, 5 days away -- the 8th. I'd been thinking it would take forever to get in, so I was thrilled about that. Anyway, some nice lady schedules the surgery, schedules a pre-op physical and then some other pre-op screening where they have to do bloodwork, and I sign all these papers promising not to sue if he ruptures all of my internal organs and sews me up with a surgical glove still inside.

OK, besides the whole post-SIS doubled-over-in-agony thing, I'm feeling pretty good, because I'm all happy about getting the laparoscopy scheduled. The cyst doesn't really seem real to me, because, well, I've had a bazillion tests and everything shows that I'm just fine and that I'm, well, a neurotic freak.

Anyway, so late last night, I was thinking, you know, I should really go see what the heck a cyst is. And a cyst, by definition, IS filled with fluid. You get cysts every month when you ovulate -- but these cysts aren't solid. Freaky things happen to the cysts sometimes, but they're never totally solid. I know he specifically said it was solid and didn't have fluid. In that case, there's no way it could have been left over from ovulation, right? I tried searching for solid cysts, and, of course, all the results were about cancer, because obviously if you're going to be talking about benign tumors/masses you'll mention the possibility of the non-benign stuff. And that was when I remembered his reaction when I asked what if the cyst was abnormal. So I looked at ovarian cancer in relation to finding masses on the ovaries. Like everyone else here, I'm sure, I've looked up ovarian cancer before, but was never too worried about it so haven't read much on it other than the symptoms. What got my attention was reading about diagnosis -- about extracting abnormal fluid (ascites) for analysis of cancer cells. And the doctor had said the ultrasound did show abdominal fluid.

Now I'm wondering if the doctor does suspect cancer but is just keeping quiet until he can look at the cyst because he doesn't want to freak me out. Or, if he thinks it's impossible because of my age and is just ignoring the possibility and turning the conversation from it because he's afraid I'm going to get all annoyingly paranoid.

I am actually not really freaked out about it. I think this is because I have had so many tests that have come back perfectly normal -- at this point I have a feeling that I automatically think that everything WILL be perfectly normal. Also -- if you don't catch ovarian cancer early, you are sort of pretty much dead. And if my symptoms are all because of cancer -- then I am probably pretty much dead. So I think maybe I am just blocking out any thoughts of this. Sort of a mental LALALALA I CAN'T HEAR YOU. But, oh well, psychological avoidance is just fine with me if it means I can function normally and wrap Christmas gifts and stuff instead of snivelling into Kleenex.

My husband and I are planning on sitting down and writing up a list of questions and requests for the doctor so we can talk to him before my surgery on Thursday. I don't think I'm going to insist on having the cyst out, but I am going to request at the very least that they do take enough out to analyze it for cancer, as well as extract some of the fluid to be tested. I need to do some more reading and figure out what else. It does sound like the CA-125 blood test is essentially useless for someone my age, so I'm not going to ask for that.

OK, so, that's where I'm at. If anyone is still reading this. Or if you fell asleep a long time ago. If anyone has advice on anything else they should be doing as long as they're poking holes in my stomach, I would like to hear it.

--------------------
jen

"It's one of the most serious things that can possibly happen to one in a battle -- to get one's head cut off." -- LC

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Oh Jen, new
      #229095 - 12/03/05 07:49 PM
Augie

Reged: 10/27/04
Posts: 5807
Loc: Illinois

I feel so badly for you. Waiting is so hard. Try not to let your mind wander into the Cancer thoughts. You are too young and the odds are so heavily in your favor. 1 in 100,000 are pretty darn good odds in your favor.

I don't know what to advise as far as what else the doctor should do, but if I hear of anyone who has had a similiar experience I will quickly post it for you.

Please keep in touch. I am confident this is another test that is going to come back normal for you!

Will this relieve your pain and bleeding? I sure hope so. Maybe you don't even have IBS? That would be a blessing if they can do something to fix you permanently.

I'm glad your husband is being so supportive. Lean on him when you need it...and us too of course.

Love and hugs, sweetie.

--------------------
~ Beth
Constipation, pain prodominent,cramps, spasms and bloat!

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Re: Oh Jen, new
      #229115 - 12/03/05 08:56 PM
BL

Reged: 06/01/03
Posts: 3522


I'm sorry you're going through this. Having tests done and then waiting for the results is agony! Our minds do crazy things to us, worrying that it could be the worst thing, when usually it's not.

I know the feeling all too well. When I was having trouble with my back and I went to see that specialist, he looked at my X-ray and said, "Whoa! Something is not right here! This should not look like this." By this time, he's pointing to the X-ray and going into detail, but I've spaced out at this point, thinking, "What is he trying to tell me, that I have cancer?" I didn't hear another word he said. Later, I wished I had had my husband or a friend there, because I'm sure they would've been more composed and would've asked him the questions I should have! I came home numb----and had to wait 2 agonizing weeks for the test and then another week to talk to him about the results. I had never been so relieved to hear him say that I had degenerative disc disorder. As bad as it is, I knew then that I wasn't going to die from it!

I hate it when doctors leave you hanging, especially for weeks. Don't they realize we're at home worrying ourselves to death? I think many times they forget how much affect they can have on our lives!

Please try to remain positive, as hard as it is, because as he said, the odds are great that it is nothing serious. He just has to check to make sure.

I will pray that God will give you peace about this. Please just try to turn it over to Him. It won't be long and you will have the test done and the results will be back, and then you can enjoy the holiday season with this behind you!





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OK backup plan new
      #229143 - 12/04/05 08:50 AM
Nelly

Reged: 08/06/04
Posts: 4381
Loc: Within stray mortar fire of DC

Um, I'd think about getting a second opinion, if I were you. You have a week until surgery? Go to another doctor and get a second test. In fact, go to a female doctor and do it.

They're going to put you under and cut you open. Get another doc to weigh in on it beforehand.

This doc doesn't seem to have good communication skills here. I went to one who always ordered more tests and never talked to me. At one point I pointed this out to a technician, who was currently playing a game of painful billiards in me with a sonogram probe for a second time. She said "Oh, he probably doesn't want to worry you."

Great. I switched doctors that day.

Point is, if I'd left earlier I could have learned that gyns aren't supposed to take biopsies of me with no pain management. I could have also been more involved in my health management instead of just being along for the ride.

I say you've got nothing to lose by talking to another professional at a women's health clinic, even if it costs you $100 out of pocket. He's going to cut you open and we still haven't resolved what kinda cyst thing he's going to be mining around for.

~nelly~

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Re: part II new
      #229165 - 12/04/05 09:55 AM
lj

Reged: 09/24/04
Posts: 179


Jen,

Just wanted to weigh in here. I'm glad you are going to have the lap. done. I don't want to bore you with my story again if you remember it, but I had a cyst that was growing out of control and my doctor said it would shrink back down and not to worry about it. Right! It continued to grow and ended up cutting off the blood supply to my ovary. In the end I became deathly ill and had to have the ovary and cyst removed in an emergency surgery (on a Sunday morning, no less) So what I am trying to say is I would definitely want the cyst removed (and analyzed of course)because you just don't know what it might do. My 2 cents, your situation might not be like mine, but I do know that despite careful monitoring, cysts can change quickly and cause all sorts of problems.

Also, every time I have a cyst, the tech. will note that there is fluid in the abdominal cavity. It is not necessarily something to be extremely alarmed about. The body has some magical way of reabsorbing this. Although it does take awhile and I am usually very tender when this fluid is present. I think the question is how much? If there is a lot, it is more worrisome. Just before my above mentioned surgery, there was A LOT.

We will be thinking of you next week. Please post updates when you feel up to it.

Laura

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Good plan Nel! new
      #229217 - 12/04/05 02:50 PM
Linz

Reged: 09/01/03
Posts: 8242
Loc: England

Sounds very sensible....and hopefully a female doctor MIGHT be more open with you b/c she can understand the whole "I've got a lump in me" panic and the girly pain better.

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Re: OK backup plan new
      #229237 - 12/04/05 05:09 PM
jen1013

Reged: 05/06/05
Posts: 1322
Loc: the wabe

To be honest, the communication thing is probably more my fault than his. I should be asking more questions. And unlike every other doctor I've been to so far, he will continually stop to ask me if I do have any questions about what he's saying.

I had wanted to do the laparoscopy anyway to check out the endo situation. The cyst ended up being an unexpected surprise. The laparoscopy isn't that invasive and he's already warned me he might be taking out the cyst, and I'm OK with that. I don't have time for a second opinion. It is really hard to get into a gynecologist here at short notice. In this case, no matter what, I'm doing the laparoscopy, so if I seek out a second opinion, it would probably be after the fact if I wasn't happy with the way the gynecologist was handling it.

I always figured a female gynecologist would be any more sympathetic and/or knowledgeable. I've been doing regular paps/pelvic exams for the past six years, all by women, and every time I complained about painful sex. Every time I basically got blown off. When I complained to this guy (GUY), I got answers.

The main thing, I guess, is that I'm sort of paranoid about the cancer thing and wondering if he's deliberately steering away from that just so I don't needlessly freak out. Or maybe I'm being paranoid about that!!! Who knows. At the same time -- I didn't ask. I didn't pipe up and say, "So maybe it's rare, but you're still going to make dead sure I don't have it, right?" I should have. And maybe it's my inner disgust at myself that's fueling the paranoia. Whatever ...

I have NEVER wanted to go to a guy about gynecological problems, but the fact is, he's taking me a lot more seriously than any woman. So for that alone I plan on sticking with him, at least for now. Because, as I've found out the hard way, if you are unhappy with DR #1, the odds are good that you might be just as unhappy with DR #2, #3, and #4.

Thanks for your input! We'll see how the laparoscopy goes.

--------------------
jen

"It's one of the most serious things that can possibly happen to one in a battle -- to get one's head cut off." -- LC

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fluid new
      #229239 - 12/04/05 05:14 PM
jen1013

Reged: 05/06/05
Posts: 1322
Loc: the wabe

Hey Laura ... thanks for weighing in. I forgot to clarify about the fluid thing -- in one of my many tests, they actually already found some fluid. This was at least several months ago, maybe longer. It wasn't much and they said it was probably nothing to worry about. It sounds like there is a lot more now. Not buckets or anything, but it's more significant. So that's why it worried me, in case it was something that was just getting worse and worse.

UGGGHHH stupid female stuff

--------------------
jen

"It's one of the most serious things that can possibly happen to one in a battle -- to get one's head cut off." -- LC

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Re: Male vs female gynos! new
      #229241 - 12/04/05 05:18 PM
LittleLisa

Reged: 06/22/04
Posts: 2018
Loc: USA

Nope. Female ones in my experience have pretty much no sympathy! They figure, hey, they have to go through the same thing you do so I think they cop that attitude. I LOVE my male gyno! In fact, I wish he could be my regular doctor. He spends so much time with me when I have my yearly appt. Never rushes me and answers all my sex questions too! I had two deliveries and both were with male OBGYN's. The one woman in the practice was such a Bi#ch that no one ever wanted her to deliver their babies. She had no patience and was know to just give C-sections! So in my opinion, MALE gyno's are much more sympathetic!

--------------------
~~~Lisa~~~


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Hey, Jen! new
      #229242 - 12/04/05 05:20 PM
melitami

Reged: 02/23/04
Posts: 1213
Loc: Ewing, NJ, USA (IBS-D, Vegetarian)

If you don't mind, if you ever do figure out an answer to painful sex thing, let me know? I have the same problem, and my (female) gyno doesn't have an answer either, other than "you need to relax."

--------------------
Melissa
Friendship is thicker than blood. ~Rent

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