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    ISO geneticist that will do EDS testing in the Kansas City area, but I’d settle forfriend who is willing to walk with me on my journey to resolution❤️

    #Dysautonomia #EhlersDanlosSyndrome #PosturalOrthostaticTachycardiaSyndrome #pelviccongestion #Zebra #ChronicIllnessEDS


    What Next?

    I was diagnosed with #PelvicCongestionSyndrome on Jan. 7 of this year by a radiologist after an extremely painful IUD placement. Almost a year since diagnosis and I still don't have any answers. I was told shortly after my diagnosis to seek a doctor closer to my university that could help treat the PCS and seek out other things that could be causing my pain. The gynecologist I went to was terrible. She repeatedly told me that I was far too young to have PCS and it was probably all in my head anyway. That I was overly hormonal and just experiencing changes, and that it couldn't be true, since I hadn't had any kids (that is not a real thing, any of these you can have without having kids). She refused to do the laparoscopic procedure that was suggested by the other doctors until I started bringing "witnesses" to my appointments (3 months of appointments).
    I was in surgery for less than 20 minutes and never got a diagnosis from it. She stated "it doesn't look like you have endometriosis, but you have adhesions and fibroids throughout your gut." She wouldn't see me after this and I can't find any record of me even having the surgery scheduled, let alone what the results were. She also refused to refer me to a doctor that specializes in these things.
    Fast forward from April to now. I recently found out that this gynecologist and a couple of the doctors I saw while hospitalized this year have many malpractice suits against them. The charges? Negligence for ignoring patient diagnosis and concerns, leading to traumatic and serious health problems. Apparently my gynecologist is known for just keeping things to herself and misdiagnosing patients or completely missing the diseases to being with. Since I was still fairly new to this area when I started seeing her, I didn't know about all of this.
    Now I'm worried. What if she missed my diagnosis or just lied to me because she wanted to be right? What do I do next? I can't find my records of ever even having the surgery, let alone the results. I'm frustrated and angry that this is even a possibility and I could be right back at square one.

    #GenitoPelvicPain #pelviccongestion #PelvicCongestionSyndrome #Endometriosis #ChronicPain #ChronicIllness #Michigan #MichiganUniversityStudents #PatientAndDoctorExperiences


    How Crazy Is This #Endometriosis #pelviccongestion #ChronicPain #tired #frustrated

    I'm lying in bed waiting to be driven to work...bc I can't drive today...knowing full well that I cant make it to lunch and somebody will have to bring me back home.
    Is this crazy?
    I just can't risk more days off and my pay being affected but I know I'm not able.
    I need to stop working this job but I won't be able to pay the bills.# fedup#frustrated


    Forever Tired #ChronicPain #Endometriosis #pelviccongestion

    What do we do when were tired? Forever tired of everything? I am tired of trying to find the energy to just do anything. It's a physical, emotional and mental fatigue that is always present #ChronicPain #Endometriosis #pelviccongestion