Discussions By Condition: I cannot get a diagnosis.

Ideas or suggestions anyone? (long)

Posted In: I cannot get a diagnosis. 4 Replies
  • Posted By: Pickle
  • November 5, 2008
  • 03:58 PM

I'm not sure if anyone here could offer some thoughts on this, but I figured it can't hurt to ask. I've had such odd things happening, and as of yet, nobody knows why.

I'm a 31 year old female, and I have 3 children. My youngest is 5. I had a tubal ligation July of 2003. After I had it done, I began having all sorts of problems. Bleeding constantly, really bad cramps all the time, etc. I finally found a nice gynecologist who said I could try birth control pills, or have a hysterectomy. She said she didn't know what was wrong, but she thought one of those two things would fix it. So I chose the pills. After finding the right one, and taking them non-stop (no inactive pills, I'd just start a new pack after the active ones were finished), the problems went away. No period, no problems!
I don't know that any of this has anything to do with the rest. I just thought I'd mention it anyway.

A few years ago, I began having a pain in my right side. I ended up in the ER, and admitted, as they weren't sure if it was my appendix. After testing, I was told my appendix was inflammed. they said they could find no cause for the pain I was having, and they didn't think my appendix was the problem, and gave me the option for an exploratory surgery. I said no way and I was sent home. (surgery scares the ***l out of me) Eventually the pain went away.

About a year after this, I began to lose weight. Not a lot at once, but a couple pounds per month. At first it wasn't a problem, but it wouldn't stop. This was over a year and a half. I asked my doctors about this, they did blood work, they found nothing and brushed it off, telling me that most women would love to have that problem. It was disturbing to me. I ended up at the gynecologist for my yearly exam, and she was concerned for this unexplained weight loss, and actually asked me about it as soon as she opened the door. I told her I had no idea. I had my blood work results with me and showed her, she said she would have checked the same things, but something was wrong and she said I needed to find out what it was, to maybe go to a gastro doctor and see if I had a malabsorption problem. She did send me for a chest x-ray, as I has a slight cough for a while up to that point, to see if I had TB. I didn't have TB, I had pneumonia. She said she never would have guessed, either, cause I didn't have the classic signs of it or anything. It took a couple months for me to get better from that. (my family doctor treated me, but I had issues with the different antibiotics and it took a while to get the right one)

Well, about 8 months ago, I began having this odd feeling on my right side. I never felt anything like that before. It felt like something was under the right side of my rib cage. It didn't really "hurt" so much, it just was very uncomfortable, like something was too big and didn't fit there. After about 2 months, the feeling went away. I never had it checked. I figured maybe I did something at work, pulled a muscle, something. Well, a few months ago, it came back, only this time, it not only felt odd, but sometimes it actually did hurt. So this time I went to the doctor to ask what the heck it was. He said it was odd, and it could maybe be my liver, or even gall bladder, and sent me for a CT Scan with contrast (oral and IV). I went back to him a week later, and he said everything was normal, and it showed no real abnormalities on the right upper quadrant, or anything. So I was dismissed and told to come back if need be. It took a while, but that weird feeling went away again. During the blood work I had several months previous to the CT Scan, the doctor checked my vitamin D-3 level in addition to the other stuff, and it was 25. He said I could take a supplement if I wanted to, as it was a little low. (he wasn't worried about it.) I did get the supplements, and after a couple months, my bones weren't hurting as bad as they had been. (I had bone pain that developed about 2 years ago, and had gotten progressively worse as the months went on. It was horrifying. they had no answers as to why I was having this problem, either. It was all the time, and during cold weather it would get horrifying. I asked if it was because I had nothing to cushion them, and he said it could be. He wasn't worried, though. Kind of blew me off. I still have it, but it isn't as severe as it had been. Only sometimes now it gets that bad)

During the last several months, I never thought a lot about it, but I developed a problem with gas, that I never had before. Not too bad, I just haven't thought much of it. I've also had this urge to urinate a lot more frequently.

Well, I was due again for my yearly exams with the gynecologist, but it turns out she up and left town. So I went to the midwife who delivered my babies. It was so odd, because the day before my appointment, I had this feeling in my pelvic area I have only felt at the end of my pregnancies. It was when my babies had their head down, getting ready to be born. I would get this pressure feeling in my pelvic joints that made me feel like I was going to fall down, and this huge pressure like something was there pushing down, and it kind of hurt. It went away after about 20 minutes, just like when I had felt that before. I just couldn't figure out why I would feel that! I could NOT be pregnant, and even if I was, I had only felt it at the very end. Make sense? During my exam, she discovered a lump in my right breast, and a mass on my right ovary. I thought it was odd. I've been taking these birth control pills continuously for a couple years, and I thought they helped with issues like that, but whatever. She ordered an ultrasound of the breast and pelvic area, and sent me for a mammogram. My sister had breast cancer at the age of 35 and it was stage 2 by the time they found it and she was diagnosed, so they didn't want to mess around and wait. the mammogram came out normal. The breast ultrasound was "normal" on the right side, but on the left a small lump was found that they said looked like it was maybe a lymph node. I was told to follow up in 6 months with the mammogram and 4 months with the ultrasound. The pelvic ultrasound was also "normal" . I asked her about the pelvic/hip joint thing and she told me she didn't know. She also said all of my lab work was normal. She did a CA-125 in addition to the other blood work she always does, and said that was normal, too, at 8.2. I have no bladder infection, either.

Of course, after she found the lump and the mass, my sister flipped out. She said I should be seeing a doctor and not the midwife. I told her my gyn left town, so she had me go see hers. He said he thought maybe it was fiberous tissue being felt in the breast, and he ordered another mammogram and ultrasound of only the right side. He also ordered a pelvic ultrasound as he said my right ovary was swollen. (how on Earth does one get a swollen ovary? It isn't like your foot, where you could drop something on it, you know?) I saw this doctor two weeks ago, and had the tests done yesterday. During all of this time, that feeling in my pelvic joint has gotten worse. My urge to pee has gotten worse, too. (doesn't burn when I go, I just have to go all the time). I have this odd feeling of pressure and I guess a fullness of sorts in my pelvic area, along with episodes of sharp pains, and cramps in general that are pretty bad sometimes but come and go. (I think maybe the cramps might have something to do with the doctor telling me I had to stop the BC pills to get the tests done yesterday. He said they would be better if I only had my own hormones in my body when they're done. So I haven't taken them in two weeks now. I have had spotting twice since I stopped, but that's it.)

In addition to this other stuff, I have been SO tired, for months on end. It's horrible. It's one of those things where I have to lay down NOW. I get enough rest at night and never had to nap before. Sometimes I've been dizzy, too. For some reason, my immune system just doesn't seem to be very good, and I can't figure out why. I eat right, take my vitamins and stuff, and I get plenty of exercise. Doesn't seem to help, though. I've acquired a cold of sorts that feels like when I had pneumonia. (in Februrary I had been sick and had pneumonia a second time, too)

I will go see the gynecologist tomorrow morning to get the results of the tests I had yesterday. I'm afraid he's going to tell me that they were all normal, and dismiss me. I don't want there to be anything wrong, mind you, but I know something is wrong and nobody seems to know what it is. I'm afraid that whatever it is will not be found and then what? So I'm not sure what kinds of questions to ask him. Any suggestions? Also, if the tests are "fine" then what do I do? I'm so tired of feeling awful all the time, and it's only getting worse. I have three kids to take care of. I'm also tired of having tests and nothing ever showing up! These doctors think I'm crazy I think!

Sorry this is so long, but I thought the more info the better. Thank you for any advice or help you guys can give me.


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4 Replies:

  • Pickle please send me a note on yahoo messenger I would like to be able to speak directly to you because I know a few people with different diagnosis that have similar symptoms... and I would have to ask A LOT of questions to figure out who your most similar to... before I can make any suggestions... my YIM name is giftsgalore60534
    Christina2008 10 Replies
    • November 6, 2008
    • 03:35 PM
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  • Thank you Christina! I'm trying to get my YIM up and running. It's giving me difficulties, but hopefully it won't take long. I'm happy to answer all of your questions!
    Pickle 2 Replies
    • November 6, 2008
    • 04:01 PM
    • 0
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  • Well, as I expected, I still have no answers. He said he sees no reason for the strange pain in my pelvic area, in that joint, or otherwise. He said I do have a small cyst on my right ovary, but nothing that would cause problems. The only thing he said was if after a few months I still have pain, then he can do a laproscopic surgery to look and see what is wrong. He said endometriosis could cause pain like that, or if something is all twisted up. But we wait. Nice. I'm still confused about the cyst thing. Taking those birth control pills non-stop for years, I had no problems. Yet my ovary was swollen while I was on them anyways, (never happened before), and after I stopped taking them, it's only gotten worse. I feel like ***l. I'm tired of seeing doctors and having tests just to be told "it's nothing, everything is normal/fine." I don't feel normal or fine. It's hard to feel determined to get an answer when I feel like they all think I'm crazy. I don't want to keep eating so many aleive and advil, it doesn't help much anyways, and I don't want to damage my organs taking so many. (it takes the edge off a little sometimes, so I take them to get through the day at work and having to care for my kids) Anyways, that's how that went. Christina, My yahoo messenger still isn't working. I'll try to fix it again after I get back from work today. I'm interested in talking to you. Pickle
    Pickle 2 Replies
    • November 7, 2008
    • 05:13 PM
    • 0
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  • I know how frustrating it can be... and to be quite honest I believe in trusting your natural instincts... they would not tell you something is wrong if it isn't...If your having a lot of trouble you could always go to www.meebo.com and use their online instant messenger (you can sign in to several programs from it without any downloads, my cousin uses it lol)But I hope I can help you... I know how hard it is to go undiagnosed...
    Christina2008 10 Replies
    • November 8, 2008
    • 02:56 PM
    • 0
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