Katie’s Personal Story: Living with Vascular Compression Syndromes
I’m Katia Yago from Barcelona, Spain. I’m 44 years old.
I suffer from 8 vascular compression syndromes: Nutcracker Syndrome, May-Thurner Syndrome, Median Arcuate Ligament Syndrome, Superior Mesenteric Artery Syndrome, Inferior Vena Cava Syndrome, Budd-Chiari Syndrome, Pelvic Congestion Syndrome and Dysphagia Lusoria, as well as vascular Ehlers-Danlos syndrome and comorbidities such as visceroptosis, gastroptosis, gastroparesis, mast cell activation syndrome, central sensitization syndrome, postural orthostatic tachycardia, dysautonomia, a bilateral luxation of the temporomandibular joint, frequent hip, elbow, knee, and finger subluxations, craniocervical instability, atlantoaxial instability, superior odontoid migration, occult tethered cord syndrome, abdominal and inguinal hernias, pelvic prolapses, diastasis recti, livedo reticularis, an abdominal eventration, recurrent SIBO, collagenous colitis, scoliosis, hyperkyphosis, hyperlordosis, digestive disorders, a bowel subocclusion, an intestinal hyperperfusion, abdominal adhesions, pelvic and bladder dysfunction, anxiety disorders, pudendal neuralgia, systemic lupus erythematosus, dysphagia, among others.
From my experience, there is no better mindset than self-acceptance. You may wonder why I make this statement, and the answer is simple: I keep adding diagnoses, and my body is falling apart. I’m receiving palliative care, but still can’t manage to control my pain. After 11 surgeries, 23 coils, glubran, foam, 3 bypasses, a stent, a nephropexy, the release of the celiac trunk, and a severe 15 Liter chylous ascites with pulmonary atelectasis due to post-surgical complications, I have a recurrence of the vascular compressions treated and new ones have also appeared, making me lose +25kg in the past months, and I now can’t eat or walk, my body is exhausted, and I keep repeating to myself: “To what extent are you going to continue trying to gain quality of life and at what price?”
At this point, self-acceptance is the key, because now that I have admitted that my body is a real challenge, and I’m certain that I have tried all options at my disposal, I live at peace with myself, even knowing that I am in pain 24/7. What I know for sure is that I’m immensely grateful for the constant help and support of all my doctors, but my body refuses to cooperate.
As long as my body allows me to do so, I will continue to advocate for the visibility of Vascular Compression Syndromes so that other patients do not have to go through a journey like mine. This is why I’m a Co-Founder and a Board member of the Spanish Association of Vascular Compression Syndromes AESCOV, to make our voices heard and raise awareness worldwide.