Discussions By Condition: I cannot get a diagnosis.

Years of pain, now rapid increase in symptoms

Posted In: I cannot get a diagnosis. 3 Replies
  • Posted By: RamblinWreck
  • July 15, 2008
  • 07:53 PM

When I was 16 I had an ovarian cyst and elected to have surgery to lacerate it. Two weeks later I was in the hospital again because I had internal bleeding and appendicitis. The source of the bleeding was never found and the doctors supposed that it was from a ruptured cyst. Ever since then I have had chronic pain on my lower right side (site of both surgeries) and for the most part it feels like it's at the surface of an organ. (That tends to cause odd looks from doctors.) It definitely hurts worse when I have a full bladder, but it doesn't hurt to pee. I think it's the pressure that makes the pain worse.

3 and a half years later I was diagnosed with CMP (Chronic Myofascial Pain) in my back, probably from hunching over so much with abdominal pain. I asked my physical therapist to look at my abdomen, and she said that the muscle were very tight and gave me some stretches to do. That helps somewhat, but does nothing for my pain that feels like it's on the surface of something.

My pain tends to be worse just after a period, which makes me think it's estrogen related, since that's when the estrogen rapidly increases in the body. Unfortunately, recently I've been adding to my list of complaints very rapidly in the last 2 months. I have nausea about all the time, chronic headaches that pulsate on one side of my head, spider veins popping up everywhere, joint pain, dry eyes and mouth, photosensitivity (makes me blotchy and makes my headaches worse), chest pain, rapid heart beat, nails have become rigged, and insomnia. I've always had Raynaud's, bruise easily, and really bad fatigue when the pain is at its worse.

My doctors told me to go see a Rheumatologist and I still have a couple of weeks before my appointment. Do you have any clue what's goin on? I've asked my gyno about endometriosis but he said my symptoms didn't fit, and I went to a Rheumatologist when I was 16 but all my workup was negative. Thanks for any suggestions!!!

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3 Replies:

  • Hi I think that the right sided abdominal pain could be from recurring cysts. I know I had a 5 cm cyst that went away on its own. I think it burst. But anyway, Im pretty sure Ive had them before and endometriosis can cause cyst to form(they're called chocolate cysts cause of the color; gross huh?) Anway, if you have very heavy periods and passing of clots, and very painful periods, chances are it's endometriosis. Find a better doctor. Anyway, as for the other problems, they probably aren't related. YOu could possibly have lupus. Have your ANA checked. If its negative, then maybe its not lupus, but rarely, it could still be, or it may turn positive later on. Oh and Im having surgery on my fallopian tube to remove it cause it's the size of a balloon. My dr. thinks its from endometriosis. So endometriosis is not a fun thing and i think sometimes dr.s underestimate what it can do to some women.I also have my own set of other problems so I know how you feel. Just think positive and always try to find the answer. I use to blow off my symptoms and that wasn't such a great idea. Never do that. ANyway, good luck and keep me posted!
    funnybunny 1 Replies Flag this Response
  • Hi! Sounds like you are having a rough time. Your description immediately brought two things to mind, endometriosis and adhesions. In either condition you would expect to feel pain along the surface of an organ. Adhesions are generally easily removed, though it does require surgery. My best advice is this: Keep asking questions, and find a doctor who also asks questions. You need someone who is interested in getting to the root of this... Have you had an ultrasound, MRI, or other diagnostics? If your doctor isn't addressing this as you'd like, visit another doctor. No disrespect to your doc, but you have to be pro-active and assertive about your health. I wish you the best, and a quick resolution!
    Anonymous 42789 Replies Flag this Response
  • In addition to recurring cysts, I ended up after many many years of taking pain meds finally getting a hysterectomy, it might be adhesions from the previous work they did, if they any cauterizing. The way you describe it reminds me of the adhesions (webs of scar tissue) I had. Also, endometriosis can spread inside you and attach to places it shouldn't be. I would talk to your gyn about an exploratory laparoscopy and abdominal ultrasound or other imaging tests since you are in so much pain. You are right that chronic pain will cause myofascial pain, but infections and the like can give you a pretty all over horrible pain too. I got extreme back pain with a pelvic infection which also was a ut infection and actually had affected my spine it had been allowed to go on so long. I think it was pelvic inflammatory disease, and it hurt so so so bad I couldn't walk. If your gyn can't get to the bottom of it or properly treat your very real pain, you need to find another. Check the internet and get a recommendation from someone highly recommended. Sometimes docs that use natural hormones can be very good. If you have a good medical center near you, try them perhaps. I wish you the best. Don't give up and follow your feelings. You know your body. If you feel you may have an infection, don't stop until you get things cultured and you get strong treatment to zap it. I did and my back pain was reduced 80 pct. from pid that spread.When I was 16 I had an ovarian cyst and elected to have surgery to lacerate it. Two weeks later I was in the hospital again because I had internal bleeding and appendicitis. The source of the bleeding was never found and the doctors supposed that it was from a ruptured cyst. Ever since then I have had chronic pain on my lower right side (site of both surgeries) and for the most part it feels like it's at the surface of an organ. (That tends to cause odd looks from doctors.) It definitely hurts worse when I have a full bladder, but it doesn't hurt to pee. I think it's the pressure that makes the pain worse. 3 and a half years later I was diagnosed with CMP (Chronic Myofascial Pain) in my back, probably from hunching over so much with abdominal pain. I asked my physical therapist to look at my abdomen, and she said that the muscle were very tight and gave me some stretches to do. That helps somewhat, but does nothing for my pain that feels like it's on the surface of something. My pain tends to be worse just after a period, which makes me think it's estrogen related, since that's when the estrogen rapidly increases in the body. Unfortunately, recently I've been adding to my list of complaints very rapidly in the last 2 months. I have nausea about all the time, chronic headaches that pulsate on one side of my head, spider veins popping up everywhere, joint pain, dry eyes and mouth, photosensitivity (makes me blotchy and makes my headaches worse), chest pain, rapid heart beat, nails have become rigged, and insomnia. I've always had Raynaud's, bruise easily, and really bad fatigue when the pain is at its worse. My doctors told me to go see a Rheumatologist and I still have a couple of weeks before my appointment. Do you have any clue what's goin on? I've asked my gyno about endometriosis but he said my symptoms didn't fit, and I went to a Rheumatologist when I was 16 but all my workup was negative. Thanks for any suggestions!!!
    Anonymous 42789 Replies Flag this Response
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