Health Organization for Pudendal Education

Dear Friends,

As I struggled to take my young child with me to the grocery store today in order to give my husband, who has been working round the clock and has no sleep, some time off from food shopping, I noticed this note on my dashboard when I came out of Wal Mart:



Now, I didn't know whether to scream, cry, curse, laugh, or get mad.

I think I'm just mad. I HAVE A HANDICAP PLACARD, REGISTERED IN MY NAME, BECAUSE I AM HANDICAPPED.

And I realize now, that more than ever, WE NEED TO GET THE WORD OUT ABOUT THIS HIDDEN DISEASE

We struggle to live our lives every day, in CHRONIC, HIDDEN PAIN. We may not have a crutch, a brace, or a wig to cover up lost hair from chemo treatment, but we SUFFER. On behalf of the friends here I've made at HOPE, I want to get this word out. The bulletin/brochure that the MODS put together to distribute to doctors is great. But, I think we should take it a step further. If I had a MEGAPHONE, I would SHOUT it from the mountaintops on behalf of all of us who tirelessly search for a cure, search for the right surgeon, search for the money to get to the surgeons, try to make the surgeons BELIEVE us, try to EDUCATE the physicians.... the list goes on and on.

I am a 30 year old mother with Pudendal Nerve Entrapment. One side of me has been freed, the other waits. I am handicapped. But not FOREVER


Sincerely,

A's Mommy

This is really sad, AM. There are a lot of people who just don't understand that you can be in a lot of pain even if you can walk. I agree, we need to take many more steps to get the word out about PNE and believe me, I'm working on it. I have a whole list of things I want to do but I can't do them all at once. What do you see as the most important next steps?

Wow. That's all I can say since this is not the religious section :/ I can think of a few applicable verses though, A's Mommy, and I'm sure you can too.

A's Mommy

I can only send you calming wishes to try to leave this terrible moment behind you.
i have been in the same situation where I have been abused verbally by an elderly gentleman who shouted at me while i got out of a car in a disabled bay, with no regard for my displaying my blue badge.
In airports i have also been abused by airport staff for managing to walk to the toilet but not being able to walk to the airplane.

We need to try to find a way to let the World know that not all disabled people can sit......and that we can walk a little etc.
Any theatre or cinema allows for disabled people provided they can sit, i have been removed a few theatres because i was standing at the back of the auditoriam and therefore was causing a fire hazard rather than occupying a seat......!!!!!

I have never heard of somebody with PNE asking their doctor for a Handicapped permit.

I had a handicap permit because I had a lot of difficulty walking before surgery. Possibly, some PNE patients have more difficulty walking than others?

A'Mommy

I hope you dont mind but I think this post should be in the Disability Section of this Forum, we need to highlight this issue as it is more relevant than many people know. There are many members who have Parking permits and who face the difficulty that you encountered....because they look too young, dont look sick etc....we need to take a strong stance on this and reeducate people that disability can take on many forms even if not always visible by a deformity.

Celeste

There are many people here who hold Parking Permits because of PNE.
When i applied for mine it was on the basis that i couldnt sit for long, had to carry a bag full of cushions and couldnt carry any weights or walk too far. This was strictly validated by my GP.
I have the European version which is widely accepted throughout Europe however there are restrictions depending on where in Europe you are...for example in Ireland there are few restrictions on parking with no time limits in airports or public places whereas in other countries you need to display a timeclock and parking is restricted to 3 hours in one place. Every country has its own different regulations. in Belgium, Frnace and Spain there are no limitations to time limits.

It would be interesting to hear of the restrictions in the USA or Canada regarding the use of a parking permit.

Celeste wrote:I have never heard of somebody with PNE asking their doctor for a Handicapped permit.

Well, now you've heard it, Celeste. I applied for a handicapped permit before I had my surgery because I refused to take pain medication because I wanted to/had to take care of my then just barely 2 year old daughter. In PA, there is a box you can check for neurological/nerve damages. Box 8. My PCP signed it eagerly because he saw the agony on my face.

And now that I am 4 months out of surgery, I may not be in 10/10 pain anymore, but I am in still quite a great deal of pain and have just started venturing out on my own right now to shopping stores/etc, with my daughter and it is HARD to lift a child when one side of your body is healing/trying to heal and the other side is still entrapped.

I'm certain I'm not the only one, and I know for a fact I'm not. For as long as you've been around on the forums, you've NEVER heard of ANYONE apply for a handicapped permit?!?!

Mod4 wrote:A'Mommy

I hope you dont mind but I think this post should be in the Disability Section of this Forum, we need to highlight this issue as it is more relevant than many people know. There are many members who have Parking permits and who face the difficulty that you encountered....because they look too young, dont look sick etc....we need to take a strong stance on this and reeducate people that disability can take on many forms even if not always visible by a deformity.

Mod4,

Please feel free to move my post wherever you see fit. I am grateful for HOPE and the support I receive on this forum. It's 99% support, 1% criticism. God bless you guys.

And to the rest of you, if you can't sit, I'd say that's DISABILITY, if you can't walk without excruciating nerve pain/neuralgia, I'd say that's DISABILITY, and so on and so on. I will gladly burn my temporary disability permit when I am completely better, but I have come to the acceptance it's not going to be 6-8 weeks out from surgery like some lucky people, but possibly the full 12-18 months.

Keep strong, keep believing, and keep FIGHTING for THE CURE and THE RECOGNITION of PNE.

AM

Violet M wrote:This is really sad, AM. There are a lot of people who just don't understand that you can be in a lot of pain even if you can walk. I agree, we need to take many more steps to get the word out about PNE and believe me, I'm working on it. I have a whole list of things I want to do but I can't do them all at once. What do you see as the most important next steps?

Violet,

I was wondering if we could work together to form a CME presentation from the PATIENT'S PERSPECTIVE. Obviously, we would have to get a doctor (one of the PNE's would be the best, hopefully) to back us up medically, but we could make video testimonials from patients, put them into the presentation, get it accredited by the ACCME, and boom --- educated general practitioners everywhere during their grand rounds, especially at teaching hospitals. If the next generation of doctors can be aware of this disease, they can look for the warning signs, get patients early and PROPER testing, and perhaps become inspired to learn the surgical techniques and evolve the surgical techniques themselves.

When I lived on the west coast, I worked for a CME accreditation agency. The lady I worked for was the former president of the ACCME.

I have talked to patients/forum members on here who are willing to give their testimonies of the struggles they have dealt with from traveling from doctor to doctor, from misdiagnosis to misdiagnosis, from draining bank accounts, to getting unnecessary hysterectomies, etc, and the list goes on.

PM me or anyone else chime in if you want to help.

A's Mommy

PS: I want to do something for this community while I am healing and waiting for my next surgery; honestly, I don't think I'll ever give up fighting even after I"m completely cured, which I will be, amen.