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  • An Ovarian Cyst Ruine my Health- anyone else?

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    Old 10-26-2005, 06:48 AM   #1
    kyethra
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    An Ovarian Cyst Ruine my Health- anyone else?

    Almost two years ago, I became very ill. A couple of months earlier I had had a strange bought of the flu or something-- a high fever, 103.something for several days where I was freezing all the time and not generally with it, followed by hives and being lightheaded and sick to my stomach. After that I kept getting colds and feeling run down and my doctor told me it was just stress. Then in February of 2004 I got very sick. It started out with my stomach/asthma. I have severe GERD which used to be under good controll, but then it stopped being under control. And my asthma stopped being under controll. And then more stomach problems started. I became more and more nauseaseated. My doctor told me it was stress and I was given more medications for the asthma and my stomach. After that I started having diarrhea. I never had diarrhea. My bowles had always had very little complaint, so I found this strange. My doctor told me it was IBS, gave me some pills (that did not work) and told me, yet again, that it was stress. All along I had been telling him that this was causing me more stress that I already had, but it seemed to fall on deaf years and he refused to refer me to a gastroenterologist locally and while I had made an apointment for my old gastro back home (I was a junior in college, 20 years old, that year) it was a month before I could see her.

    After that things just got worse. I started throwing up and had trouble keeping food down. Then the pain started. It started out as a mild ache in the lower left abdomen, not more than two weeks after the bowel problems started. My doctor said, again, that it was stress, and threw some pills at problem. Shortly after that, as the pain escalated one night I went to the ER. I was worried. They took an X ray and an urine sample. I was not pregnant, and I reasured them it was not refered pain from my appendix. They referrred me to a gastro locally and I was able to get in quickly.

    The gasto ran every test I could think of. Blood tests, urine samples, stool samples. By this time I was on Darvocet for the pain that had gotten quite severe. I couldn't keep food down. I was increasingly exhausted. I spent most of my time in bed, and I was growing rapidly weaker. No one said it was stress anymore. My hair was starting to fall out- no one could tell me why. Instead they all asked me, "Thats odd, why do you think its doing that?"

    When all of the tests came back negative, a colonoscopy was scheduled for the end of march. I had had another visit to the ER. More pain medications- the pain was more than I could take. I couldn't make it to work or to class anymore. My boyfriend spent a lot of time taking care of me. My mom took home my pet rabbit for a while because I couldn't take care of him. Everyone seemed mystified at this point- what was wrong with me?

    My boyfriend was actually the one who suggested that it might be gynecologicall. So I suggested to a doctor and they scheduled me for a gyno exam-- I had had a full annual in January of that year and was on the nuva ring, so everything had been ok then. During the exam the doctor felt a mass, so an ultrasound was scheduled. The ultrasound revealed a large ovarian mass, right where my pain was comming from. An MRI was scheduled-- tumors and adhesions and cancer were mentioned.

    I had the colonoscopy. It was negative. I asked the doctor about the ultrasound. He told me that it wasn't his area and that he would no longer be able to help me at all. See at gyno he said.

    Then, at the beginning of April, I woke up one morning at about four thirty something. I just tried to breath. The pain was so intense there I couldn't move. I went to the ER, I felt like something had gone terribly wrong. They said it was likely the cyst had ruptered and gave me a shot and sent me home. But the pain did not go away or get better.

    I had another ultrasound which was negative, though painfull this time, a couple of weeks later. Nothing was found. A gynecological surgeon told me that I probably had endometriosis and did a laporpscropy. Nothing was there. All the other symptoms were still present. the pain, the stomach and bowel problems, the weakness, etc. She told me to either see my gastro or focus on the psychological aspects of healing. She could no longer help me.

    I had no idea what to do or what would happen to me. I had just turned to 21. In fact, my birthday had been spent getting a CT scan-- also negative-- in the ER. I called Mayo and asked for an apointment with Gynecology. They said that they didn't make apointments without refferals. So I said, ok, maybe I should go to Gastroenterology. The person at the desk asked what the problem was. I said I was really sick and in a lot of pain and had had an ovarian mass and that my gynecologist had told me it was gastroenterological and that my gastroenterologist had said it was gynecological and I had no idea what it was. I was patched through to gynecology and made an apointment for two weeks later.

    Mayo was a god send. Despite being seven hours drive from me, it was worth it seventy times over. The gynecologists said I was not crazy. He said that it looked like a cyst had ruptered, but that someitmes the pain remained, but based on a part of the exam- a very simple part, carnett's sign, he thought it might be internal organ pain, and he refered me to gastro enterology.

    When I was there, they adjusted my medication and helped my stomach problems. They figured out what was causing the pain. I had a nerve ending that had been damaged in my abdominal above where the cyst had ruptered. I was refered to a pain clinic for injections to treat that.

    I went through several pain clinics actually. Turns out I have a difficult case. Again, I can really only get it treated well at Mayo. I have to have an injection into the nerve ending every few months when the pain returns. While it isn't supposed to be possible it looks as though when the cyst ruptered it bothered the nerve in my abdominal wall.

    I now have Fibromyalgia. Something I did not have before all of this. I am 22. I don't know anyone else as young as I am with it. I am slowly working on my health. My left side- which is used to be stronger, is now permanently weaker than my right side of my body.

    I have not another cyst, and I hadn't had one before that. Even the way it bothered the nerve and the pattern of it seems to puzzle my pain doctor. Right now I feel puzzled and angry. This seems like such a freak occurance. Why and how did something like this happen. How was it possible? How did the doctors miss it?

    Has anyone else ever heard of or experience anything like this? I'm trying to move on, but the odditiy of it, in some ways, is holding me back. Why me? Why such a strrange thing. I feel so alone in it at times.

     
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    Old 10-26-2005, 04:46 PM   #2
    SRMom
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    Re: An Ovarian Cyst Ruine my Health- anyone else?

    I just want to say I am so sorry you have had to go through all of this. I have had a hard time getting my pelvic pain diagnosed. I've been in pain for 10 months and finally will get a laparoscopy next month. I don't know why doctors don't take us seriously. Sometimes I think it's to keep insurance costs down because maybe they get paid more if they do? That sounds paranoid, but what else could cause a doctor to let this continue? It's very frustrating and I commend you for advocating for yourself to get what you need. I wish you the best.

     
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