My 6-year pain odyssey - PN - Ketamine infusions

[LeOs92]

Hello,

I would like to briefly summarize my pain history below.

I have had bilateral pudendal neuralgia with severe allodynia (sensitivity to touch of the skin in the area of pain) since the birth of my child, but this was only diagnosed or confirmed 4.5 years later by means of a pudendal block. I have now been under treatment with Dr. Demmel (head physician for neuromodulation in Munich) for 1 year. After all conservative and medicinal therapies (pelvic floor physiotherapy, shock wave therapy, antidepressants and anticonvulsants, medicinal cannabis) were unsuccessful, I was given 24/7 IV ketamine infusions (slow drip protocol; starting dose 4 mg/24h; maximum dose 12 mg/24h) as an inpatient. This was the only thing in the 6 years that brought me immense pain relief in a short time and I showed no side effects. However, as only a very low dose was administered, the effect only lasted temporarily/during the therapy. After two inpatient therapies in Munich in 2024, the next step planned was a higher-dose ketamine infusion therapy. Due to the closure of the clinic at the end of 2024, this follow-up therapy can no longer be realized. Unfortunately, the new partner clinics do not offer this type of therapy.

Due to my long history of suffering and daily very severe restrictive pain (no wearing of underwear/pants, no sitting, no long walking// any kind of friction and pressure in the area of pain triggers my pain and lasts for days), I would like to continue this therapy. Is there anyone here who has already had ketamine infusions and could recommend a place to go/clinic/doctor in US?

Many thanks in advance for your feedback!

[Violet M]

That's unfortunate that you have been through so much pain. I found two doctors in the US who do ketamine infusion for pudendal neuralgia -- Dr. Vogel in Atlanta, Georgia, and Allison Wells in Houston,Texas. You can find their information on the pudendalhope.org website at the following link:

https://www.pudendalhope.info/united-states-physicians/

If they are too far away, their offices might be able to refer you to someone nearer to you -- could be worth asking anyway.

All the best,

Violet