Ovarian Cancer Survivor--Now Have PNE

[SarahL]

Hi All,

I am new to the board. Like most of you, I was misdiagnosed --first my GYN misdiagnosed my cancer and then, after the surgery (and a new doctor), I developed what felt like bladder issues. I had 14 UTIs in less than a year. Was told I had IC (despite the fact that chronic UTI is not typical of IC). Switched doctors again and did lots of research. Meanwhile, I became resistant to most antibiotics--which is a dangerous situation. Ended up going to Europe for treatment (they have a UTI vaccine). Cured of the chronic UTI, but my bladder burns all the time. Rx'd with Levator Syndrome (new doctor--the urogyn that told me I had IC was wrong!) and PNE. Sitting is awful. I have a standup desk, but I travel internationally and it kills me to sit that long. I usually stand in the back of the plane on those long over-night flights, but sometimes, that is not possible. In any case, my doc thinks the PNE is due to the very delicate but invasive cancer surgery. I'm sick of the pain. Tried PT, didn't help. Trying new PT (both pelvic floor specialists) next week. Most of the time, my attitude is good, but there are days, as I am sure you all know, when I can't take another day of suffering. Tried all the meds mentioned here--well most of them--acupuncture, meditation, prayer. Things are a little better with the pain meds and walks help, but mostly, I'm in constant pain. I want my life back. I survived a cancer that has a high mortality rate, and now, I have this to deal with. Tried to keep this short, but any advice would be welcomed. I live in New England and will try to get an appt with Dr. Mark Conway. Do I need to see a neurologist, too? Thanks.

[Violet M]

Hi Sarah,

Welcome to the forum. Sorry to hear what you are going through and hope that pelvic floor PT will be successful for you.

If you are going to Dr. Conway he does the EMG tests so I can't really see any advantage to going to a neurologist too unless you can find one who knows about and treats people with PN. The neurologist I went to didn't know anything about it so the visit was a complete waste of time.

You might want to consider a 3T MRI using Dr. Hollis Potter's protocol to see if there is any scar tissue around the pudendal nerve as a result of your previous pelvic surgery.

Hope you can find some answers and treatments that work for you.

Violet

[SarahL]

Thanks, Violet. This is very helpful. It is New Year's Day and I am trying to be hopeful, but it is tough. Blessings, Sarah