Health Organization for Pudendal Education

Hi, I am writing from Mokopane in South Africa and have been on the PN journey for the past 2.5 years. I had my coccyx removed and woke up in excruciating pain. I lost 18kg in 3 days and needless to say I have scant memory of that time. All I do remember is that I was unable to urinate for 2 days and had no relieve even after a catheter was inserted. I still struggle with a very sluggish bladder today. Obviously we all thought that it was post operative pain. I started looking for help about 6 months after the op because by then I still could not sit at all. I saw the orthopedic surgeon who referred me to my gynaecologist and there the drug induced journey started. I was given Lyrica, Arcoxia, Celebrex, Synaleve, Stillpain, Dicoflam, Artrexin, Mybulen etc. I underwent phisiotherapy, bought all sorts of cushions, got rid of all my jeans, tight fitting clothes etc. Still the pain got worse.

I eventually ended up at the then President of the Spinal Unit, Dr Necer, and he ordered a MRI scan. He then explained that there might be a nerve entrapped but nothing can be done since it might be that scar tissue is pressing on the nerve and by opening the old incision, more scar tissue will form.

Obviously I have seen numerous doctors and specialists. The diagnoses all varied between "ghost pain due to amputation" or it was my imagination playing tricks on me because I was in so much pain initially after the operation. I am a very strong person and had to deal with various weird illnesses and the death of a child, but this pain and situation got me to a point where I considered suicide, twice. After seeing a neurologist in March 2014 and being told that he is so sorry to hear about my story, and he knows that doing another MRI scan is a waste of money and time but at least he feels better because he told me to do something, I decided to take control of my body and life.

I started scanning the internet and eventually found a website for Prof Possover where my symptoms were described perfectly. I lost my job due to my inability to sit and the constant flare ups and is in the process of claiming disability from my insurance. I have submitted my claim in March and since then have been phoning my medical aid provider and even the Association for Surgeons of SA trying to find a doctor in South Africa with knowledge about this decease and who can help me. Obviously my insurance will not pay out until I can prove that the pain is really debilitating and it stands to reason that I would rather be pain free! Everyone with PNE will know that no amount of money will ever make up for even one "clean" day. BUT...after reading everything I can get my hands on about PNE, I am so scared to let any specialist touch me especially if he/she has no experience at all in this field. I went to a specialist with 30 years experience for a relatively simple procedure and ended up like this. Imagine what can happen if I let a doctor who has no experience work on me?

Does anyone know about a doctor in South Africa who will be able to help me?

Thanks!

Esme

The only person I could find is Lizelle Grindell at The Pelvic & Urotherapy Institute.

Esme, it sounds like you have been through so much. I'm sorry, I don't know any specialists for PN in your country but I just wanted to say welcome to the forum and wish you the best in finding the right treatments.

Hugs,

Violet

Hi Everybody! Well, I had a consultation with a neuro surgeon (and had to travel 660km for this) yesterday, and his first response was that he does not think I have PN but more likely coccydymia. I am booked for a series of brain scans, another MRI scan and a lumbar punction next week and then he also wants to inject me into my pubic bone to relieve the pain. I am petrified of that. I printed every possible piece of info and pictures of PN with a summary of my symptoms etc. This is the first doctor who is willing to do more tests than a MRI, but knowing where this nerve is situated, am I being neorotic about not wanting to have an injection there? In all the research I have done, being misdiagnosed is one of the main reasons why we suffer so long. Oi, I am between a rock and a hard place. Don't know whether I should feel positive that the eventual diagnoses of PN might be wrong or scared that it is PN and will now be treated for something else and aggravate the situation in the process? Can someone turn on a light for me please?

No, I don't think you are being neurotic at all, especially since you already had one procedure that didn't turn out well. Before having a lumbar puncture I would at least want to have a good explanation that makes sense as to why they want to do it. What are they trying to rule out that warrants a lumbar puncture and what symptoms do you have that warrant a lumbar puncture? These are things you might want to ask the physician.

I have heard of people getting relief from coccydynia from ganglion impar blocks. Have any of your doctors suggested that?

Violet

Hi,

Just a quick update on my situation after my 5 month treatment with the neurosurgeon:
- Had all the scans and bone flicker tests,
- Had LP, Rhyzotomy, infiltrations and nerve blocks,
- Had a neurostimulator implant where the probes were initially placed between the C3 and C5 vertibrae but with no good impulse response, then it was placed in my lower back with a better impulse response. During this operation the membrane between my brain and spinal cord was damaged which resulted in terrifying headaches and I had to be readmitted 5 days later for a blood patch.
- Impulses did not relieve the pain and caused extreme burning in my lower parts thus the stimulator was removed. My Dr. suggested a morphine implant but I decided not to go that route.
- I am actually now in more pain than before all the procedures especially in the areas where the probes were fitted. I am still battling with my insurer for pay-out of my disability policy and it seems that I need to go for a EMG.

How accurate are the test, is it painful and the question remains, should it proof positive, where should I go for help from there?

Goodness, this is a never ending journey. Thank the Lord for an amazing husband and children!

EMGs can be painful since they insert needles. However, just because an EMG is normal doesn't mean you do not have anything wrong. You can have loss of the sensory nerves which does not show up on an EMG. For that, you need quantitative sensory nerve testing. Once you have the results of the EMG then you can determine what to do next.

My pudendal EMG was completely normal in 2006 despite having had vulvar and rectal pain for 18 months. It is the reason Dr. Bautrant declined to do surgery on me in 2006. My PNMLT was also normal.

Esme, I'm sorry to hear things are worse for you now. I wonder what kind of EMG they have planned for you. Do you know if it will be an EMG of the pelvic floor? My experience with PNMLT and EMG was that the PNMLT was close to normal with a worse score on my less painful side than the painful side. My pelvic floor EMG was very abnormal and sensory testing was abnormal. I hope you can get this sorted out and figure out what is causing your pain.

I went back and re-read your post from awhile back and noticed one of your doctors wonder if your mind was playing tricks on you or if you might have scar tissue that will just reform if you have it removed. Both of these are possibilities that have been mentioned before on this forum. Scar tissue can be a real challenge to deal with. Did any scar tissue impinging on nerves show up on your MRI? The suggestion that your mind might be playing tricks on you could be a simplified way of describing how chronic pain may develop due to neural plasticity of the brain and spinal cord.

http://bja.oxfordjournals.org/content/1 ... 1/i69.full (scroll down to the section on neuroplasticity)
http://tinyurl.com/lskta55

http://www.ncbi.nlm.nih.gov/pubmed/19712899

http://www.macalester.edu/academics/psy ... d_two.html
http://tinyurl.com/k4xqyfk

http://link.springer.com/article/10.100 ... ccess=true
http://tinyurl.com/l6cfl83

Hi Esme,
Since this started with a coccyx removal you could check coccyx.org to see if there are others with similar post-surgical pain.

solarmom