Briefly explain to a healthy person what it is like to live with this illness.
I think as much as I explain some things cannot fully be understood without experience………..however, they can be imagined and I think some people will be able to empathize.
The main aspect of Pelvic Congestion Syndrome and Endometriosis is pain; constant pain.
If you can imagine never being out of pain that’s it. For me there is never a moment when I am not in pain. There’s always a baseline which does not ever disappear. I tell people on the scale of 1-10 that 3 is like 0 to me. The pain never goes below 3. Actually 3 is quite ok. I can easily do that without meds beyond those I take at night.
Besides this ever present baseline pain there is then the intermittent sharp and / or crippling pain that happens on any given day. Pelvic cramping, pain down legs, lower back pain, pain when urinating, pain with bowel movements, pain during and/ or after intercourse and pain with movement or exercise.
Added to this is fatigue. An overwhelming tiredness that pulls you down and stops you from going. This doubled with a physical heaviness in the pelvis that literally stops you in your tracks at times.
Life is a constant roller coaster of ups and downs; constant medication and doctor’s visits. Periodic time off from work – in my case every 8-12 weeks or so. Just living life and doing everything around pain and the expectation of increased pain.
However, as I said at the beginning some things cannot be fully understood unless experienced.