I’ve had POTS for 3.0.0.5 years now… along with hEDS, Endometriosis, Narcolepsy, Factor V, and Homocystinuria. I had a full hysterectomy due to endometriosis/adenomyosis and thought the constant severe pelvic pain was a thing of the past. Unfortunately, my symptoms were exactly the same post hysterectomy. I researched for years for anything that could explain my POTS, other than just “lote of people with EDS have it”. Then a few months ago I stumbled upon Pelvic Congestion Syndrome, aka Pelvic Venous Insufficiency, and I broke down in tears reading the symptoms.
Chronic/persistent, severe (5-8/10) abdominal/pelvic pain
Pain after sex
Pain that is worse after sitting/standing for a long time
Migraines
Dysautonomia/POTS symptoms
Bladder pain
IBS like symptoms
Fibromyalgia
Vulvodynia, varicose veins in the genital area and thighs
The list goes on.

No doctor from any specialty was able to tell me what this was or offer it as an explanation to the myriad of debilitating symptoms I had. I was so desperate for answers that I found the only vascular surgeon in my area, got a referral and got him to order me a CT scan of my veins. I had areas near my kidneys of expanded veins extremely suspicious for Pelvic Congestion. In 1-2 weeks I go see another Vein specialist to get a venogram done, then if needed, schedule embolization of whatever problem veins are causing this.

What triggered this? For me, pregnancies. The more pregnancies, the more at risk you are. However it can and does happen in those who have not been pregnant along with Nutcracker Syndrome (NCS) and May Thurner Syndrome (MTS). It is believed that it is responsible for 40-60% of ALL chronic pelvic pain! It also exists in men as an issue with iliac veins (MTS). It can cause SEVERE abdominal pain that seemingly has no other cause. Doctors will not always advocate for you or give you answers as I am sure we all know by now, so please advocate for yourself! If any of this sounds familiar to you, I urge you to find a specialist that is knowledgeable on Pelvic Congestion/Pelvic Venous Insufficiency. There is a chance you can walk away from a minimally invasive procedure 80% better. And that’s something, to me, worth sharing with any person suffering from POTS.
#PosturalOrthostaticTachycardiaSyndrome #PelvicCongestionSyndrome #pelvicvenousinsufficiency #Chronicpelvicpain