I asked a group of women the following questions here is their response:
I have heard two things from new patients:
1. There doctor does not take their symptoms seriously
2. That they are frequently given misinformation regarding their disease
Shirley- (FMD) "this is my life to a tee"
Harriet -“My FMD is in my vertebral arteries...was told by the vascular doc...that this is no big deal, and don't go home & start reading stuff on the Internet!”
Deb - (FMD, Aneurysms 2 coiled) "Before my diagnosis, the doctor I had been seeing for seven years questioned me as to WHAT I WAS DOING to cause my symptoms.
I never saw him again and was diagnosed 3 weeks later by a different doctor"
Susan - "I waited in the E.R. for over 6 hours before a test was performed. They brushed me off because ,and I am quoting a Dr. "you are young,healthy, thin & you dont smoke".You should have seen the look on his face when he saw me walking down the hall in the trauma unit 2 days later! my first episode I was told it is like "lightening..never strikes twice". 2 years later I had my second dissection. It was not until then a test was performed to diagnose me with FMD"
Irene- "When I was first diagnosed in July 2004. I was given misinformation. I was told that FMD only involved the renal arteries and that one angioplasty would cure me of the disease. Sadly for the first two years my carotids were not checked . In six years I have had 6 angioplasties of my renal arteies and will most likely need them in the future. As far as point number one goes I had a vascular surgeon say that I did not need to have followup check ups on my renal FMD, had a neurologist tell me that FMD does not cause stroke ( After I had a TIA) and ER doctors who had never heard of the disease the good point is I have also had ER doctors who are well informed."
Emily- " My cardiologist picked up on my FMD right away in August of this year. One week later he did an angioplasty on my renal artery, he really amazed me! It's my nephrologist that was ignorant. She didnt want to hear anything that I had to say about FMD. She said that I most likely didnt have it because I'm to old to have it (I'm 39yrs old to be exact) Then she said its to rare and its not what I had. I told her that I even saw the beaded effect. She just kept shaking her head saying no and then she said my dr. should have put in a stent then if it was FMD. I walked out of her office today and cried!!!! Can we send her a pamphlet on FMD?"
Lyn- "I was diagnosed 2 years ago and pretty much was told it was no big deal. It was only because of my research online and insistence that I have additional tests done that I found that I have FMD in 8 arteries with aneurysms on 2. Very frustrating - cannot find a doctor in the Seattle area that takes this seriously"
As a women's vascular advocate I hear a recurring theme that physicians are not taking women's vascular symptoms seriously. This is leading to women sent home from the er while having a stroke or dissection. Hard to believe in this day and age, but it is true. Why? What is being missed in diagnosing women with vascular disease both in the acute care and ambulatory care setting? What can be done to change this?