My Story

[Pudendo]

Hi,

Ive learned a lot from the forum over the last few months so its time to give a little back. Thank you to all those who shared and in particular I wanted to give a shout out to Violet for whom I have huge admiration for, for the time and effort she has put into the site.

I intend to write over the coming months/years as my symptoms evolve in the hope one day my experience will be of use to someone else.

My PN story started 7 months ago.

I felt a pain on the left side of my penis which simultaneously felt cold.

This lasted for in excess of 4 weeks around which time I started to feel a burning pain in my lower back, more precisely in the area around my sacrum.

Weirdly there appeared to be a link between the pain in my back and my penis. When one was sore so too was the other.

Next up I started to have urination issues. Prior to all this I would urinate 6-8 times per day like clockwork.

It dropped down to 3-4 times and at times I had to push myself because I didnt even feel the urge to go.

At its worst I would urinate only approx 50ml every couple of hours which each time was a big effort.

It seems to alternate. The last few weeks have been pretty good but it comes and goes.

I have a stricture from a previous accident and my greatest fear is that I will end up one day having to use a catheter,

I also had terrible constipation for a while during which even with medication it was difficult to defecate.

In parallel with that Im unable to sit without pain in my perenium and anus which disappears when Im standing up, lying down and sitting on a toilet seat.

My penis will some days feel numb while other days its burning.

I also experienced numbness in both feet and around my lower back/buttocks.

I was diagnosed by a neurologist and a neuro-urologist based on my symptoms but also from the results of a nerve conduction test which measured the speed at which signals were sent from my legs up to my back and down again.

The results showed some loss of motor function and sensory loss both on the left side. Also the MRI's, Cat scans and blood tests were negative.

I have a young family with 4 children and Im the sole bread winner so like many of you Im very fearful of what the future will bring.

I have a very supportive family but deep down my heart is broken. All my hopes and dreams are dashed. Prior to this I was very active and someone who made the most of life. Now Im a shadow of my former self.

To those of you are in any doubt as to whether or not you are suffering from PN, my advice is to read up on it as much as you can via the website and the forum (forewarned is forearmed) but ultimately you need to see a doctor to get to the bottom of it.

Im under the impression doctors are much more aware of this condition nowadays at least judging by how quickly I was diagnosed. I would caveat that by saying it will depend on the dr you see. 2 urologists whom I met prior to seeing the neurologist believed my issues to be nerve related however they did not suspect the pudental nerve. Instead they thought it was might be caused by a compression of the nerves in my back.

Just as an FYI I suffered a fractured pelvis and sacrum 10 years ago when I was run over by someone who ran a red light. Ive also been floxed (ie had a severe adverse reactions to an antibiotic from the quinolone family which I will write about in a separate post to create awareness of the danger). I suspect both factors played a role.

Take care.

[Violet M]

Thank you for sharing your story. I'm sorry I have not been on the forum as much lately as I have been caring for some family members with health problems and recently my dad was killed by someone who crossed the median and crashed into him in a car accident.

I am sure you can relate to the feelings of devastation after having been in a serious car accident yourself. I agree with you that the pelvic injuries you had back then may have contributed some to the problems you are having now. I'm sorry this has made life so difficult for you, especially when you are so young and trying to care for your family. It is always difficult to determine whether the root cause of pelvic/genital pain symptoms are coming from the spine/sacrum or the peripheral pudendal nerve. I don't know what you have tried so far or what diagnostics you have had done. If you have been following the forum you have probably already read what many of the options are as far as getting a diagnosis and proper treatment. Sometimes there are no fixes and you have to settle for symptom relief. Are you able to work and carry health insurance?

Violet

[Pudendo]

Hi Violet,

Thank you for taking the time to respond and absolutely no need to apologise.

Unfortunately I know only to well as my son was killed in the accident I spoke off. Im very sorry for your loss and all my condolences to you and your family. For those family members you are taking care of I wish them a speedy recovery.

Im working at present but its shall I say "challenging". Im fortunate to live in Luxembourg where the health service is of a high standard and is available to all residents at a reasonable cost.

In terms of tests Ive had blood tests, MRI's, CAT Scans and nerve conduction tests.

The diagnosis is being made primarily based on my symptoms which the results of the nerve conduction test support (sensory and motor function loss).

And yes the forum has been a fantastic aid in terms of better understanding what Im going through and the options out there.

I have found a very good physio with experience dealing with pudental neuralgia. If Im honest Ive not seen much improvement so far but its early days yet.

I have an appointment with Dr Bautrant in Paris at the end of November so I will post again after I see him.

Take care Violet and keep up the good work.

[Violet M]

Hi Pudendo,

I am so sorry to hear about your son being killed in the accident. I am sure that makes it way more difficult to handle the health problems you have suffered besides. You are a strong person to continue on the way you are.

I think you will be in good hands with Dr. Bautrant. He was a lifesaver for me. Hopefully the physiotherapy will help and you won't have to go the surgery route.

Take care,

Violet