My name is Kathryn Blake, and I am a 20 year old UC Student, worker of 5 jobs, and previous college volleyball player of Fresno Pacific University and UC Merced.

Through my whole 20 years of living, I have played three sports year round since Jr. High and was always heavily involved in my community as well as clubs.

The only broken bones I ever suffered were from my nose, and both of my thumbs from playing college volleyball. My problem arose my sophomore year playing volleyball when I had extreme hip pain. I had my first MRI after season in January of 2013.

The doctor had told me I had a little swelling and I would be fine there was nothing they could do. I had several people tell me I was making excuses and it was all in my head. I had them tell me so much I started to believe the pain was not real and tried to forget it, thinking it was my fault– how could I be so selfish? Six months passed by and I had been seeing my chiropractor who then took the initiative to have me get another MRI.

The results were a bilateral hip fracture in both upper femoral necks. My orthopedic put me on crutches and said I would need a full hip replacement. Being only 20 years old and hearing this was heartbreaking. To add to it I have had severe Tourettes Syndrome, OCD, and ADHD since I was 7. So stress only made it worse.

I was sent for one more MRI to prep for the surgery and went back to find that I was misdiagnosed. I only had a stress fracture in my left femoral neck which was no big deal. They found one cyst that appeared to be nearly 5 cm big and an association of the Nutcracker syndrome. You guessed it, what the heck is that you may ask?

It is the left renal vein being crunched by the aorta vein like a nutcracker. My orthopedic said take care of the cyst first and worry about the other thing later. I went to my gynecologist to find I had two cysts but only the size of a dime. Earlier that year I had been seen in Stanford by their gynecological specialist and was diagnosed with interstitial cystitis commonly mistaken for a UTI because of the complete a likeness in similarities they share.

For two years I have been in constant throbbing pain. I had to quit my waitressing job because I could not stand on my feet moving at intense speeds balancing heavy plates and bussing tables being bent over. I now work several jobs making pay check to pay check, praying I can still pay my bills and continue to support myself.

Recently I went to Stanford where they set up to have a venogram done because I was officially diagnosed with Pelvic Venous Congestion Syndrome associated with IBS. After a mix up the day before surgery with the insurance I was told I needed to come back up for an MRA and CT scan with Iodine of my low arteries, etc. I then received a phone call from the doctor stating that my gondal veins were completely dilated in my left hip. He also claimed I have May Thurner’s Syndrome and my iliac vein is collapsed.

He said that the blood in my veins is flowing up when it is supposed to be flowing down. My legs should also be swollen and are not. And I have never given birth nor am I pregnant. I am just your basic 20 year old woman that never did drugs, got good grades, never broke anything major or had a health problem- other than the Tourettes and OCD…etc. I constantly have burning in my urethra simulated as if I have a UTI all day everyday of my life…but it is not a UTI. It is in relation to this. I have now become what one could call a case study for my doctor. As he said he is currently consulting colleagues about this to find the real culprit. There is quite a bit more.

I am currently waiting to have a venogram done on the 7th of February for Stents and Embolization where he will open and close of veins that are over working, not working, or not flowing as much. From there he has explained it will be a step-by-step process. I have waited for two years. Two years of being put down and told I was crazy…two years of constant pain, tears, and struggles financially.

With PCS it gets worse over time. The veins compress the uterus, so when it comes to my monthly the pain is excruciating. Most of the time as if I am being stabbed. For the first year and a half I refused to take pain meds. And now I cannot function without them. I find it so hard to believe that just two years ago I was playing collegiate volleyball at high level. It is one of my hopes and constant prayers to potentially find someone who is or has gone through the same thing that I am going through. Even just to listen to my story means the world to me. Thank you to everyone that took the time to read this.

3 thoughts on ““I Was Just Your Basic 20-year-old Woman That Never Did Drugs and Got Good Grades””

  1. Hi, my name is Nicole and I also have a handful of rare vascular conditions. How would I go about sharing my story? I would love to make people more aware, but don’t know where to begin.

  2. Hi Nicole–you would submit your story to this link here: https://globalgenes.org/patient_story_submission_form

  3. Thank you! I happend to see the link after posting my comment.

Comments are closed.

X