Discussions By Condition: I cannot get a diagnosis.

Mysterious Blood Clots???

Posted In: I cannot get a diagnosis. 9 Replies
  • Posted By: Adriesse07
  • October 21, 2007
  • 10:09 PM

Okay..

I have been to so many doctors for this it is hard to count and even remember.. I can not figure out whats wrong with me

I was diagnosed with PCOS at the young age of 8, and was put on high doses of hormones..

Recently..I have been having mysterious blood clots around the time of my period..

They are extremly large

Last month my period came a month early, and it was large clots the size of a fist,

this month the same thing happened

I was checked for Endometriosis and Uterine Fibroids and I do not have either of these..

When I get this way I feel abnormally tired and weak..

Its not regular flow..its coming out in huge clots..its disgusting

I am on psych meds Celexa, Abilfy and Seroquil, and the doctors have all told me that this is not what is causing my problem

and that they are unsure what is

Whats wrong with me? what could this be?

HELP!

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9 Replies:

  • How were you checked for endometriosis?
    Anonymous 42789 Replies
    • October 22, 2007
    • 04:23 AM
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  • Complete Medical History, Pelvic Ultrasound and Transvaginal Ultrasound Why? p.s. still clotting today maybe I should go to the ER?
    Adriesse07 41 Replies
    • October 22, 2007
    • 02:38 PM
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  • Because endometriosis can only be diagnosed by laparoscopic surgery - that's why there's an average of 9 years till diagnosis. With an ultrasound, endometrial tissue is indistinguishable from normal tissue. Please do some researh on endometriosis because I believe this probably what you have - the treatments for endo are hotly debated - yahoo groups has some very large, knowledgable networks. Also get another gynecologist...and don't take treatment from one (like say more birth contraol pills or lupron - actually under no circumstance take lupron) until the endo has been confirmed laparoscopically. As for ER, I'd say probably not, but you're there and only you can gauge the seriousness of what you're experiencing. They'd probably give you some morphine, test whether you're anemic, and refer you back to your gyno.
    Anonymous 42789 Replies
    • October 22, 2007
    • 04:22 PM
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  • I do not currently have a gynecologist. I just moved from Miami to Cocoa so I need to set up a visit for an OB/GYN Your suggesting that I get this checked out at an OB/GYN office? Can I have Endometriosis and PCOS at the same time??
    Adriesse07 41 Replies
    • October 22, 2007
    • 04:37 PM
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  • Good that you'll be seeing a gyn - a first step might be finding an ob/gyn who concentrates more on gyn than OB. I think it's likely you have both. I probably had endo for years but was tolerable....it was not until I began birth control pills (Seasonale) again in my early 40's to keep ovarian cysts from forming every month, that it took off into being an intolerable condition and spread into the walls of my uterus (this is known adenomyosis). This happened *after* I stopped the BC pills due to health concerns at my age with the pill. BC pills can be very disruptive to the natural balance of your own hormones. The traditional doc would love to put me back on BC pills, but I have had enough. You were started at *8*...that had to have packed a hormonal punch and I would frankly be surprised if you didnt have endo, without even hearing about the clots - which btw, are a classic symptom. If this does turn out to be what you have, research natural progesterone, and an option would be to see a doctor who will measure your hormone levels - often these are known as "anti-aging" doctors. They are MDs catering to older clients generally, but are very expert on bioidentical hormones. These are a lot safer and less disruptive than the synthetics. They are also Rx'ed based on your individual levels rather than the one size fits all approach of the pill. This is an area where alternative medicine is light years ahead of traditional medicine. Endo removal is another issue you would need to look into. Here are a couple of links:Antidote for Endometriosis Endo Victims - Endo Doc List A Better Approach to Endometriosis
    Anonymous 42789 Replies
    • October 22, 2007
    • 05:10 PM
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  • So I went to the Emergency Room yesterday and the care that I was given was unacceptable. I arrived in the Emergency Room (Whesthoff ER-Cocoa, FL) at 3:30pm and we sat until about 5:50pm to finally see and be admitted to the ER. Then we waited some more, they took a urine sample from me, and we waited some more. We finally got a room at about 7:30 and we were not seen by one person until about 10:50pm. This was my nurse Kirstin and I told her I was hungry, and hadnt eaten since this morning and was it possible to get something to eat. Her reply was we dont give paitients with belly pain something to eat so they dont throw up. I then got about 11 tubes of blood taken from me at around 11:35pm, and the Phelbotomist was very nice. Then My fiancee and I waited some more, and when they changed shifts, I was finally given a gatorade and crackers. Kirstin my nurse came back in and told me to drink the "GI Coctail" which was a mixture of lidocane, malox and something else, and this numbed me completly. I than couldnt eat. The doctor got my blood work back and noticed that my white blood cell count was extremly high, signifying my body was fighting off infection of some sort. He ordered an ultrasound, and the Sonographer noticed that I had a "Hepatic Hemangioma" and they explained to me that this was a Cyst filled with blood vessles. At about 1:30 in the morning the Doctor came barging into my room and told me that I needed a pelvic exam, and I explained to him I had a history of being raped and prefered a female, he continued to try and shove the speculum up in me, and I cried, and so he stopped, because my fiancee looked like he was going to kill him. They put that I refused the pelvic exam, and then discharged me. We waited from about 2:30 until 6:30 for my uncle to come and pick me up, and he told me next time to go to Cape Canaveral Hospital in Cape because that hospital was known for stuff like that. My fiancee and I are not sure if this was medical negligence or malpractice, but I feel I was treated unfairly. The ER Doctor was fresh out of Med School and prescribed me pain medication "Percocets" and an over the counter drug of some kind, but I am worried about the addiction factor in this drug, and tried to speak to him about it and they told me that it wasnt strong enough for me to become addicted to it, and I am on Celexa, Seroquil and Abilify, so I asked will it interfere with my psych meds and they told me they didnt know.. So all in all..he didnt check my symptoms with my infection, and I am still in pain sitting here writing this on this board for you guys to figure out what is wrong with me..:mad:
    Adriesse07 41 Replies
    • October 23, 2007
    • 07:36 PM
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  • My mother was diagnosed with Endometriosis after MANY years of SEVERE pain and "fist size blood clots". She also had a lot of problems with her bowels with her periods, etc. She would go to the ER and they would put her through hummiliating tests aimed at her bowels - even though she kept saying that wasn't the problem! Then they told her it was all in her head and needed to see a physchiatrist. FINALLY, she found a GYN that would listen, did the exploratory surgery and found the BACK SIDE OF THE UTERUS WAS COVERED IN ENDOMETRIOSIS. They ended up doing a hysterectomy and she is much better now.I am sorry to hear you are in so much pain. PLEASE DON'T GIVE UP ON YOUR SEARCH FOR HELP!!!! Good luck.
    Anonymous 42789 Replies
    • October 8, 2008
    • 05:47 PM
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  • At 21 I was put on a double dose of birth control for heavy bleeding, about 3 wks later I was hospitalised with severe DVT's in my left leg,. I had 6 of them. For two wks they pumped me full of Coumadin (NEVER TAKE THIS EVER!) and then finally sent home on crutches because the clots were still there. I was fine for quite some time until about 4 years later when I ended up with DVT's again this time there was NO reason as I was not on any birth control and on strict orders to not be on ANY hormones at all. In 2007 I got a PE in my lungs (Pulmonary Embolism) for no known reason. I have a Hemo specalist who can not figure out what is going on with me, they did say my factor 8 and factor 9 levels are elevated which can cause clotting but not enough that it should be causing this. I get DVT's at least 2 times yearly and the dr doesnt see me anymore they just call the pharmacy and call in Lovenox and I give myself injections until they are gone. I have autoimmune disorders (Cont)
    Anonymous 1 Replies
    • December 3, 2015
    • 05:03 PM
    • 0
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  • (cont) that they are not related. I now have several large hard lumps in my groin area that I have no odea what they are and for the last 3 months I cannot breath. I have been on ABX which didnt work and they said I have Chronic Bronchitis and they think either COPD or pnemonia but they are unsure. I have severe asthma and about 3 months ago I cleaned a home and while painting it the carpenters came in and ripped up the floor exposing more black mold than I have ever seen...I know I have gone off on a tangent but I have no clue whats wrong with me and I need help. I have a greenfield removable IVC filter that is covered with blood clots, wonder if somehow on moved past into my lungs or if I have mold in my lungs...I am 37 and last night i couldnt breath at all and it was notan asthma attack,..even the drs say it wasnt they just dont know what wrong with me. Any ideas?? I would greatly appreciate it. Margo J.
    Anonymous 1 Replies
    • December 3, 2015
    • 05:10 PM
    • 0
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