Discussions By Condition: I cannot get a diagnosis.

A history of miltiple problems.

Posted In: I cannot get a diagnosis. 3 Replies
  • Posted By: Anonymous
  • February 20, 2007
  • 04:14 AM

Where to start. Well, first off, I'm a 27 year old woman of Native American/Irish descent. I've been ill since I was born with various things. As of 5 years old I was first diagnosed with Juvenile Rheumatoid arthritis which has since been changed through newer data to a diagnosis of Fibromyaglia and Osteoarthritis. My case is relatively severe and despite most cases of both these things find little relief with opiod therapy, mine doesn't respond well to anything else but narcotic painkillers. I have been through pain clinics, biorhythmic feedback, etc etc to manage pain symptoms. I've been on every anti-inflammatory you can name off the top of your head plus tricyclic antidepressants which only help somewhat with some of my symptoms. I have a high rate of insomnia, all 3 types of common migraines plus other headaches that do not fall into the category of migraines but take a lot to get rid of. My 4th type of headache results in a drop in blood pressure (normal is 104/78 or so and it drops to 95/60 or thereabout). I have a rushing sensation in my head with these and they can last longer than my true migraines. I also have hypothyroidism and am at the moment on a .112 mcg dose of the replacement hormone, as well as asthma and am overweight though starting to lose with the introduction of the thyroid hormones.

Now, down to my other problem now that you have a general idea of past history. Over the last 3 years, my menstrual cycle has repeatedly interrupted and become worse. It first started with some incredibly strong crampes 3 days before my period and 3 days into my period as well as 7 day periods and very large blood clots that I can actually feel passing and can be painful at times. Its progressed to the point of me having severe cramping and lancing pain through my abdomen every 2 weeks or so and going between 6 and 12 weeks without a period at all and when I finally do have a period I'll literally be doubled over in pain for the entire duration. I feel naseaus, sick, can't eat and always seem to need to be drinking something. I've been tested for diabetes and thats come back negative for my excessive drinking. They tried me on birth control pills to try and regulate my periods and the hormones made my symptoms worse within 3 days. I had a pelvic ultrasound done which didn't show much but the pelvic wand they used triggered an 8 day period that was extremely painful to the point I had to remain in bed during it. During the 6-12 week intervals, I'll sometimes seem to start a period with some very dark brown spotting but after 2 days the spotting stops again and I'm left with just the severe pain of what seem like extended duration cramps. I have stabbing pains sometimes while I urinate or sharper pains after I get done. I've had urine tests done and theres no sign of infection. I've been celibate now for 5 years so there's no chance of pregnancy or STD's.

I'm looking for anyone who might be able to give me some ideas of what this might be to throw towards my gynecologist. We're all pretty stumped by my symptoms and the seeming increase in them over the last 3 years. As it stands now, I haven't had a period in 3 months, just the 2 day spotting once. Before this started, I was as regular as a clock in my cycles. My mother had Endometriosis at 33 after she had me and when they were doing the hysterectomy found she had uterine and ovarian cancer. I just recently had a pap done which came back clean.. so far all the tests they've done have come back fine but I know these symptoms are not normal and so do my doctors. Endometriosis has been mentioned but when the pelvic ultrasound came back I was told it was highly likely that wasn't the answer so I'm at a loss now. Anyone who can help, it would be much appreciated.


email available at drune@charter.net

(Sorry if I'm not supposed to put my email up. Edit the post if need be to remove it but please leave the rest of the post up if possible. I'm rather desperate to figure out what this might be. Thanks)

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3 Replies:

  • endometriosis is only rarely diagnosed by ultrasound, and then it's just suspicion. you need to have laparoscopy. also it sounds like you have adenomyosis as well, which is endo in the uterine wall.
    Anonymous 42,789 Replies
    • February 20, 2007
    • 05:33 AM
    • 0
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  • Sorry you are having all these problems. It is possible your periods are being affected by all the other health problems. Have you been checked for anemia? How abt Thyriod?? I was having a lot of female problems and pelvic pains that all tests showed were normal, Yes, its very frustrating to hurt so much and be told theres nothing wrong. Along with traveling joint pain, but No arthritis was found. I was on all kinds of antidepressants for 7 yrs to treat fibro and they didn't work for me. I can relate to a lot of what you are saying, except the RA. Turns out I have had Lyme disease, for 20+yrs. They have tied Fibro{ and so much more!} to Lyme and its co infections. Its possible your mom or dad had it and didn't know and passed it on to you. Undx'd Lyme gets every place and taxes your thyriod as well. Go to www.lymenet.org and see if this seems to fit you. Hope you can feel better soon.
    Anonymous 42,789 Replies
    • February 20, 2007
    • 10:21 AM
    • 0
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  • I agree it does sound like endo, and they should probably do a laparo...try to find a specialist who is very familiar with endometriosis. Also, have you tried acupuncture and Chinese herbs? It works wonders for women's health. I have treated many women with severe dysmenorrhea (painful periods), fibroids, and endo. It is worth trying in my opinion as opioids just mask the pain and don't address the cause of your imbalance. Visit www.acufinder.com for more info and to find a practitioner near you. I really feel it would give you great relief, and would work on treating the cause of your symptoms. Best wishes.DOM
    acuann 3,080 Replies
    • February 20, 2007
    • 02:57 PM
    • 0
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