Health Organization for Pudendal Education

Hi everyone...I am so glad to have found this forum.After much pain, emerge visits and doctors perplexed here in Canada.I was diagnosed by Dr.Mark Conway in New Hampshire with pn..Treatment options are not plentiful in Canada hence making it difficult to start with the more conservative treatments before thinking of surgery.I am on lots of pain meds which allow me to function but cause extreme constipation and a feeling of general malaise and fatigue. I am now trying to get in to have nerve blocks done but the wait may be months.The constipation is severe no matter how much fibre or fluids I add to my diet.Unable to sit or drive.I live in the country so I am starting to feel quite isolated.I miss my busy,full life and am not sure what to do next to get me on the path to wellness.If anyone has any guidance or wisdom for me I would be so very grateful.Blessings,Lise.

Welcome Lise,
A few suggestions are to post your story in the welcome section to get more advice (I think more people monitor that section). For constipation Miralax is used widely and said to be safe (I use twice a day but others have done more often) and you can search in the right top search box for the numerous posts on this topic. Another idea is to read the homepage FAQs and there is a list of PN aware PTs off the homepage to go to them and see if they can help in some way. Good luck.
Janet

Thanks so much Janet........I will follow all of your suggestions and am very grateful for your guidance!! BLESSINGS,Lise

There are some excellent PT's in Canada -- I've no idea which part of the country you live in though. And being in the country would make it very difficult to get in to see a PT. It might be worth it to at least have an evaluation by one though and they might be able to suggest some things you can do at home that would help.

Several forum members have been to see Dr. Kirk Andrew for electroshockwave therapy with good results. No idea how close he is to you though.

Will you be getting your nerve blocks in Canada?

Violet

Hi Violet, How kind of you to make some suggestions.I have found a PT in Ottawa which is 45 minutes away from our home.Her name is Caroline Allen.She was recommended to me by someone on the forum who was very pleased with her...a fellow Canadian.It is always good to have a positive reference.Actually Dr.Andrew is also in Ottawa,however,I feel this treatment may be a little too aggressive for me at present.My pain is being managed by a fentanyl patch, and lyrica.Sadly if it was not for the patch I would not be able to function.So my PT appts start at the beginning of December and I am awaiting an appointment with Dr.Peng in Toronto for nerve blocks.I also have what looks like a Tarlovs cyst on my S3 nerve root which has to be looked at by a surgeon in Ottawa.I am really not too sure if nerve blocks are to help with pain or are more diagnostic in nature.Violet you seem to be one of the few people who feel they are now well and are not suffering.How I wish that would be the case for me but I suppose I have to try everything else before choosing the surgical option.Any thoughts in this regard?Blessings,Lise .

Lise,
The nerve blocks are mostly diagnostic I think only a rare person or more actually got longer lasting relief. Mine were diagnostic with a few hours of relief adding to my history to help the doctor to determine I was a candidate for surgery. The Tarlov cyst ended up being a major PN like pain for another member and has lowered with tarvlov cyst surgery. Defintely look into it. Take care and hope the PT helps.

Thanks so much for your message.My goodness....I too have terrible bunions on both of my feet which have worsened over the years.I waited 3 years to see a lovely surgeon who said my poor little feet were quite deformed ...at least they are both exactly the same so I have a matched set.He worried that surgery may even make things worse....one less surgery to worry about!I will have my cyst looked at for sure.Although I was diagnosed with PN by Dr.Conway of New Hampshire. ...the cyst is probably not helping things.I am on the list for nerve blocks in Toronto.Good to know that they may be helpful for my profile and help in determining my suitability for surgery.I do hope the PT helps even a little.Thanks again for your insight and happy wishes.Blessings,Lise.

Hi Lise,
Is Dr. Conway aware of your Tarlov Cyst?
Kind regards,
Karyn

Hi Karyn,Yes...I actually sent a copy of my MRI report to him.He felt it was an incedental finding.I am however,going to have it looked at by a surgeon in Ottawa which is about 45 minutes from home.As it is on the S3 nerve root it is probably not helping matters.Dr.Conway did say I could have some type of test done by a doctor at the pain management centre but I will wait to have it looked at by a surgeon here at home or by Dr.Peng in Toronto who I am waiting to see for nerve blocks.May I ask why you pose the question?Is the cyst something I should be concerned about?Hope to hear back from you.Blessings,Lise.

You might want to PM Hermajesty about Tarlov Cysts as she is our expert on this forum. I know most doctors don't think it means anything but I think in the future it will bear out that dismissing them is a bad idea. Dr. Kalinkin in Phoenix (radiologist that works with Dr. Hibner) had an abstract at a recent meeting that shows patients with PN have almost a 4 times likelihood of having a Tarlov cyst finding on their MRI compared to the normal population. So don't dismiss this finding.