Possible PNE/PN problem. Any med specialists in TO Canada?

[ynnebp]

Hello everyone,
First of all I would like to thank all those people who made their effort to build this wonderful website. This really helped me figure out on what’s going with my condition and at the same time it gave me some cautionary measures to prevent the aggravation of my illness. I am new to the forum, I am a 46 year old male and currently suffering from buttocks pain for 3.5 mos. I live in Brampton (Greater Toronto Area) Ontario Canada and I’m an immigrant so please excuse my grammar. My problem started 3.5 mos ago when I slipped on the snow and had electric shock like feeling on my buttocks. After that I noticed that there was some discomfort when sitting and the pain got worse over the next few weeks. I had seen Orthopaedic surgeon, family doctor, physiotherapy, chiro, massage therapist but it didn’t help. I will see a neurologist in couple of weeks (finally after a long wait!). I had x-rays and they’re all fine but still no MRI yet. I’ve been through many medications Oxycodone, Nabilone, Gabapentin, Lyrica, Vimovo but I couldn’t handle the side effects, these medicines made me walk like a Zombie. I am using cold pack, capsaicin, TENS, infrared hot compress for my pain. I didn’t have severe pain (10/10) for almost 7 weeks now or maybe that cold pack did a pretty good job. I changed my lifestyle (as mentioned below) for a month now and I’m not sure if it really helps. I think I am suffering from PN/PNE if you look at my symptoms. I would really appreciate all your advice/feedbacks to help alleviate my condition. I would also like to know if you could please provide me some answers to the following questions. Thank you very much.
1. Does anyone have experience with Barbara Szczerba/Milleneum Physiotherapy because this is the closest clinic to my place? Or do you know someone in my area who knows how to deal with this type of condition?
2. I would love to see Dr. Kirk Andrew of Ottawa (I think he is the right person for my case), but right now 5 hrs. of driving seems impossible for me . Any suggestions on this? Do I need to stay there for a week? What is the frequency for shockwave treatment?
3. All the health care professionals that I had seen were unable to mention to me about PN/PNE and I’m afraid that the same thing will happen after seeing my neurologist. For sure, If I will mention my genital and rectal issue to my family doctor she will refer me to urologist or other specialist. I don’t want to be misdiagnosed and I would really appreciate if you could help me find someone who can help me.

CURRENT CONDITION/SYMPTOMS:
- No pain on the legs, arms and hands.
- No pain from the upper body to the head.
- Pain/discomfort when sitting. Sometimes sitting would trigger the feeling of urination/bowel and sometimes slight burning to the genital. Pain relieved when standing or sitting in a toilet bowl.
- Constant pain on the left buttock close to the anus (just above and beside tailbone). Pain is in scale of 1-3 in the morning and worsens throughout the day. The rectal discomfort sometimes on and off during the day.
- The pain in left buttock (this is where the pudendal nerve is) radiates from/to the middle lower back area, it also radiates to genital and rectum.
- I used to have hyper sensitivity in the buttocks area but it’s gone now.
- Wearing denim/jeans and tight clothing makes it worse. I found out that the $10.00 joggers from Chinese store are more worth than the True Religion Jeans.
- I sometimes have the urge of urination (I also drink plenty of water) and bowel (no constipation as I always eat lots of fibers).
- Weaknesses on my body or sometimes makes me feel like a little bit of shaky.

LIFESTYLE:

Sitting:
- Avoid sitting as much as possible. I have an adjustable desk so I don’t need to sit in front of the computer.
- Currently using cushion for pelvic pain/coccyx pain/pudendal neuralgia and it helps although not 100%. I only use it when I’m driving though.

Diet:
- Vegetables, fruits, oats, brown rice, fish, chicken breast.
- No sugar, no dairy, no alcohol, no meats (except fish and chicken breast), no fatty foods, no processed foods. no caffeine.
-
Daily supplements:
- Almond milk (1-2 glasses/day)
- Omega 3 oil (2 tsp/day)
- Turmeric (2 tsp/day)

Exercise:
- Walking

[Violet M]

Hi,

I don't remember that physical therapist, Barbara Szczerba, specifically being mentioned on the forum but she is on the list of PT's on our website, which means she is trained in treating pudendal neuralgia. I think that is a good place to start at least.

Regarding Dr. Andrew, his email address is listed on our website so you could try emailing him to ask what the protocol is -- whether a week is long enough. http://www.pudendalhope.info/node/90
Sorry, it looks like the formatting on that page got messed up a little but you can still see the info there. I will try to get the formatting fixed soon so it's easier to read. Is there anyone who can drive you there? I used to lie down in the back of the car for long trips.
You can do a search on konedog4's posts on this forum for more info on Dr. Andrew. Use the search bar in the upper right corner of the page.

If you are lucky the neurologist will know something. The one I saw was not helpful at all but it really depends on what their interests are and whether they have chosen to have any training in this area. Good luck with your appointment.

Violet

[ynnebp]

Hi Violet,
Thanks for the information. I really appreciate it. Hope I could find the right doctor for me.
Best regards,
ynnebp

[Violet M]

Sometimes the PT's know which doctors to go to for treatment of chronic pelvic pain. Maybe your PT can tell you who would be good in your area. If not, you may have to travel to the US for treatment. There are patients from Canada who were able to get their treatment in the US paid for by the Canadian health system because there weren't any docs in Canada offering comprehensive treatment for PN. So, that is something to keep in mind if nothing else works out.

Violet

[ynnebp]

Hi Violet,
Thank you again for the support, this means a lot to me. I found a PF therapist referred by a former co worker who used to have a similar problem with me. I had my initial assessment including external/internal exams, looking for trigger points and mobilization (I might used wrong terms though) and she told me that the pain is primarily in the main pudendal nerve. She told me that I will go for 4 sessions and if there is no significant improvement she will refer me to a specialist who will do the further treatment, I'm still positive to see one of the specialists (just in case). In my knowledge the only neurologist that deals with PN/PNE in TO is Dr. Gordon who is currently on suspension. Anyway, the PT also mentioned to me that it is good that I started the treatment as this problem will be hard for the therapist to treat once the stiffness gets worse. She also noticed that my anxiety is too high (which is true) and she told me to do a meditation. She was not even amazed with my healthy diet as this has nothing to do with my condition, on the other side I was a little bit pleased as I can always eat my favorite foods. A day after my initial treatment/assessment I noticed that the feeling of having an object in my rectum was gone but I still have a little bit of pain. I am planning to continue my treatment. I still have Barbara, Nelly Faghani and Dr. Andrews in my mind if nothing else works out. I really appreciate your time in responding my post and providing important information. More power to you.
take care,
ynnebp

[Violet M]

Well, this sounds hopeful, and it's a good sign that you have a little bit of improvement after the first treatment. Hope to hear more good news from you in the future.

Violet

[ynnebp]

Hi Violet,
Good day to you and I would like to give an update regarding my current situation. But, first of all I would like to thank you for the continued support, patience and great advice.

Orthopaedic Surgeon: He told me that I have coccydynia eventhough he didn't press my tailbone.
Neurologist: He told me that I have coccydynia too but I insisted that my GP said that my tailbone is fine.
He finally pressed my tailbone and was convinced that the pain was not on my tailbone. He
said the pain is in the soft tissue but he couldn't say the specific problem. He will send me
for MRI to check the SI area.
GP: My GP believed that I have nerve irritation but couldn't figure what it is. She prescribed me Lyrica,
Cymbalta and Diclofenac but couldn't handle the side effects. She will refer me to a specialist to
check my rectum which I think not really necessary except to rule out any bacterial issues. I am also concerned that this test will result to increase my rectal pain.
PF/PT: She told me that my obturator muscle is so tight and probably pinching the PN nerve. She is doing internal mobilization of the muscles.
PAIN: The main location of the pain is in the soft tissue besides my tailbone (no pain in the tail bone).
When I press the soft tissue beside my tailbone the pain on the left is more dominant than the
right. I also have an occasional pain that radiates to sacrum and rectum. The pain is at 3 most of
the time. Would it be possible that I have problem with sacro T/S ligaments as well as the
coccygeal muscles?
RECTAL PAIN: Rectal pain is down to 3 as well but shoots up to 5 and discomfort when sitting. My
normal bowel is one in the morning and sometimes one in the evening. Between these
times I usually have this feeling of urge to bowel. I know that this is the reaction of the
irritated nerve so I don’t constraint my bowel. This is also accompanied by
anxious/uneasy feeling???? I have no constipation at all. The TENS machine does a big
help too.
SITTING : Before, I couldn’t sit for a shot time without the help of the twin cheek cushion, but now I
am trying to sit normally except that when I feel the pain and too much discomfort, I
immediately stand up. I drive 30mins x 4 times everyday and occasionally sit at work. Too
much standing would cause my lower back and hips to ache.
MEDICATION: I'm not taking any meds due to severe side effects, I am taking ice for severe pain but I
didn’t use it for several weeks now.
PN: Would it be possible to have an entrapment on the rectal nerve only? I noticed that the rectal nerve
is separated from other Pudendal nerves and maybe the rectal is only that is being pinched. I have no
issues with my genital (except for occasional very mild pressure) and no perineum pain as well. Is
the PN positioned very close to the tail bone?
OTHERS: My issues are pain beside coccyx area and probably the rectal nerve. I am still working (with tolerable pain 3-5) as I don't have insurance, the government insurance can only provide me 50% of my salary and it is not going to be enough for paying my bills. Also I noticed that when I took off for 3 days I got depressed while staying at home and often think of my pain. Sometimes I feel desperate but I have no choice but to be strong. Do you think that PT can eventually solve my problem?

[Violet M]

I don't know for sure if PT will solve your problem but it's generally considered a good place to start with treatment and see if it seems to be helping you after a few visits. A good PT might be able to help you isolate the source of the pain.

Tailbone pain can be related to a number of things. The inferior rectal branch of the pudendal nerve innervates the anal sphincter. There are variations in anatomy between people so it could be that it comes off higher for you along the course of the nerve than is typical. People with PN typically have some genital pain but there are some people who have only the rectal branch affected. You may also want to get checked for SI joint dysfunction.

Coccyx or anal pain can sometimes be relieved with a ganglion impar block. If that type of block is successful then you could try a more long-term procedure using phenol in the block or trying cryoablation to that area. Have you checked out the coccyx.org website?

Violet

[ynnebp]

Hi Violet,
Thank you so much for spending your time in answering my questions. I checked out the coccyx.org website and I find it very helpful. I also found this DrWilderman clinic in TO and they administer ganglion impar block as well as pudendal block. The Ganglion Impar Nerve Block Injections stated in drwilderman website correspond to my current situation. This is going to be beneficial for me in the future and I really appreciate your effort in providing me these information. I am now a bit confident that I have lots of resources to face my ongoing problem. By the way, I already booked with Nelly Faghani (long waiting time) on the 2nd week of June. Although my current PT was able to help me and being a good PF/T I don't think that she has enough knowledge about PN. A lot of times i had to oppose her exercises especially the yoga bending and stretching (I remember you always said to proceed with caution during exercises). She even encourage me to start sitting normally and I said a "no" because it happened to me so times that after sitting normally I always get a huge flare up. Few days ago, she introduced me this ball exercise and I had a very bad flare up. This resulted pain in my perineum that radiated to my urethra and I had trouble sleeping. After i stopped that exercise my perineum pain subsided somehow. Right now, I am alternating standing/sitting with my twin cheek cushion while writing on the computer. My pain right now is 3 and I also feel some sensitized feeling on my buttocks, the feeling of going to the bowel is always there but I know that this is due to nerve abnormality. It is weird that most of the doctors don't have knowledge about PN. My 72 year old GP mentioned to me that if no abnormalities found during x-ray, MRI or endoscopy that means it is only a psychological issue. One time I mentioned to her about PN and her reaction is like that word came from Jupiter. Now I am trying to educate her about PN.....I will let you know the progress in few months and thank you gain for your help.
Ynnebp

[Violet M]

That's great that you found a doctor who might be able to help you. Sounds like your GP doesn't have a clue.

Nelly F has a very good reputation so hopefully she will be able to steer you into the right kind of PT. It always helps when you have a plan and feel like you have some options of things to try. I will be interested to hear how it goes for you.

Violet