I’ve had clear POTS symptoms since chemo/tamoxifen too. I think I always had minor symptoms but now it stops me in my tracks and I have to rest and then stand/walk slow. For me I took a break to travel int’l (due to tamoxifen increasing clotting risk) and my fissure healed. Went back on and tore a new fissure within 2 weeks.
In case it’s helpful here’s some things that are helped me on Tamoxifen:
- Daily Imvexxy as a suppository (my OB prescribed but ok’d by oncology)
- Daily Estridol cream on the area
- Replens in the mornings so going to the bathroom is easier
- Calmoseptine days im not bleeding (it’s a healing ointment)
- Lidocaine Prilocaine mix (straight lidocaine did zero and it’s believed to be folks with EDS don’t react to lidocaine)
- Heavy liquids daily (100 oz) incl smoothies, broths, water and drinks
- 1 LMNT electrolyte and 1 Instant Hydration electrolyte daily (for the POTS symptoms)
I was taken off tamoxifen 4 months because I was in such daily pain. I mostly healed. Then we tried again and I re-tore in 1.5 weeks on a half dose every other day. Then we tried Toremifene (older med) and it did the exact same thing after 1.5 weeks. So I’m off all endocrine therapy now. It’s worth asking about taking breaks, or taking a half dose. Or trying Toremifene as an alternative.