people with PN/PNE in Toronto

[duskidawn]

I am interested in talking with anybody who has PN/PNE or other chronic pelvic conditions in Toronto and Southern Ontario
duskidawn1@yahoo.com

[corey3RM]

Can I ask about the purpose?

[Sumar]

Hi, I am a 78 year old single female just diagnosed with PN/E and vulvodynia since Feb 2022 after being healthy. It took 9 months to get a diagnosis after several false diagnoses of the groin and labial pain. Collingwood isn't the Mayo clinic. I'm concerned that this is incurable, rather than just trying to block pain. Any suggestions about specialists treatment for PN/E in GTA? OHIP is in such chaos now, it's hard to get appointments with specialists.

[Violet M]

Sorry to hear you are on the PNE journey. Last I heard, there is a doctor at University of Toronto but I don't know much about him other than what is on the website.

https://obgyn.utoronto.ca/faculty/nucelio-lemos

Violet

[Fhmd]

Dr.Peng at Toronto Western University Hospital is knowledgeable about PNE as a pain doctor. He works with Dr.Lemos on their publications also.

[angelaG]

Sorry to hear you are on the PNE journey. Last I heard, there is a doctor at University of Toronto but I don't know much about him other than what is on the website.

https://obgyn.utoronto.ca/faculty/nucelio-lemos

Violet

I have been waiting for an appointment with Dr. Lemos, who is the only specialist in Canada, since July 2025, and I still don't have a confirmed date.

I have done pelvic physiotherapy at Alpha Physiotherapy clinic in Toronto, which helped me get where I am now, but I still have pain when sitting and don't know what else I should do to improve. The pelvic physiotherapist thinks I no longer have a tight pelvic, and she is now working on stretching the ligaments around the nerve. Without an expert opinion, we don't know what the best approach is moving forward.
I am a 57-year-old female, and I did not have any surgeries or other traumas in my life, other than a hemorrhoids banding procedure during the same time when the symptoms started, because I was referred to an endoscopy clinic, and they discovered internal hemorrhoids that were believed to cause my symptoms, but it was not the cause.
Any opinions are welcome.
Thank you very much.

[Violet M]

Hi Angela,

That is sad that you have had to wait so long. Sometimes people travel to the US or Europe for treatment and have posted that it was paid for by the Canadian health system, but this was quite awhile back so I don't know if that would still be possible.

Are your symptoms primarily rectal or do they include the clitoral, vaginal, or perineal area? If just rectal, then possibly just the inferior rectal branch of the pudendal nerve is affected. It sounds like maybe you had some symptoms prior to the hemorrhoid procedure, right?

It can be tricky to figure out whether a tight pelvic floor is caused by the pudendal nerve being the source of the pain and causing the muscles to tighten up, or whether the muscles tighten up and irritate the pudendal nerve. If you pelvic physical therapist presses on the pudendal nerve at the ischial spine do you know if there is any tenderness there? That can be a possible sign that the pudendal nerve is irritated potentially due to pudendal nerve entrapment by the ligaments at the ischial spine and can be one of the causes of pain when sitting.

Violet

[eraser]

I have been waiting for an appointment with Dr. Lemos, who is the only specialist in Canada, since July 2025, and I still don't have a confirmed date.

I have done pelvic physiotherapy at Alpha Physiotherapy clinic in Toronto, which helped me get where I am now, but I still have pain when sitting and don't know what else I should do to improve. The pelvic physiotherapist thinks I no longer have a tight pelvic, and she is now working on stretching the ligaments around the nerve. Without an expert opinion, we don't know what the best approach is moving forward.
I am a 57-year-old female, and I did not have any surgeries or other traumas in my life, other than a hemorrhoids banding procedure during the same time when the symptoms started, because I was referred to an endoscopy clinic, and they discovered internal hemorrhoids that were believed to cause my symptoms, but it was not the cause.
Any opinions are welcome.
Thank you very much.

I really hope you have got this resolved now but if not, if you can afford it, go elsewhere. Time is of the essence, if you have pudendal nerve entrapment.