Letter to the Medical Profession

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Re: Letter to the Medical Profession

Postby kat » Fri Oct 29, 2010 4:32 pm

Got it.
Just an observation.
I was a little worried about the emotional feel of the letter.
We are all in an emotional state as this conditions has controlled our lives at times and I'm worried how medical professionals (who have already written us of as being head cases) will respond to the letter.
I've been handing my version to the nurses and docs and they read it as they walk me to the (scale, room or where ever they are taking me) and we then discuss the situation as they take my blood pressure and whatnot.
It is short and sweet with a medical feel as this is a medical condition.
I'm trying to help the medical profession see PN and PNE as a medical condition and not a mental condition.
That is why I modified the letter to be short, precise and medically focused.

I will distribute your letter as well if you prefer. I'm just not sure if medical professionals have the time to read it as they walk me to my room and as you know, time is of the essence as medical professionals are running from person to person and are usually running behind.

Do to being so ill at this time, I'm unable to make time to discuss PN and PNE with medical professionals in any other way.
I'm open to ideas of how to get the word out.
I'm thinking of showing up with edible treats during lunch hours of medical offices to share some information verbally while using visual aids.
These would be 5 min. meetings just to find out if their offices know of the condition and what to do if they come across someone with PN or PNE symptoms.
Mostly I just answer questions since medical professionals are curious about what has been done to me.

The issue in Missouri:
neurologists won't see me because of where PN nerves are located
OB won't deal with me because know nothing of nerve damage
Urologist won't help because has no knowledge of nerves

I'm discussing PN and PNE with all these types of docs so they have somewhere to turn when they meet people like me so people can be diagnosed sooner.
I would like to send them to your site since that is where the information is and I have only a very basic understanding of what happened to me and each person is different. My docs either wouldn't see me or had no idea where to send me. I would like to change that.

If you wish that I keep your organization out of it I will, but I'm trying to raise awareness of your organization so what would you like me to do?

Born with pudendal and obtorator neuralgia. 32 years of being misdiagnosed.
Surgery with Conway 7/14/10. Internal burning cured!
Currently in PT for many pelvic floor issues due to having PN for so long.
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Re: Letter to the Medical Profession

Postby mod3 » Sat Oct 30, 2010 2:41 am

Kat, I think you have made some very good points. How about if you PM the Mods your version or post it here and maybe we can take you up on some of your suggestions and revise the letter. We are definitely open to suggestions/changes. Thanks,

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Re: Letter to the Medical Profession

Postby kat » Sat Oct 30, 2010 4:33 am

I emailed a copy of the modified version of your letter to the email given on your Letter to the Medical Profession.
I sent it Monday.

Did you not receive it?

Would you like me to post it instead so others can read it so we can continue to gain ideas?

I'm working on generating an informational packet so docs have resources to give to the next person with PN they meet.
Most docs say, I have never heard of PN, or I've heard of PN but have no idea where to send you for help.

I would like each docs. office to have a packet so the next time they observe someone with PN they can be directed to this site.
I plan on focusing on the heads of OBGYN departments, Neurology departments and physical therapy centers.
Let me know if you thing I should add to that list.
When the packet is complete I would like to mail one to the one running this site in the US. I only speak English so that is the only language I can work with.

The packet will include: a list of symptoms, picture of Pudendal nerve to make explanations easy, a list of related conditions and therapies available.
I'm not sure if this will be in a brochure form or a small flip chart. I want it to be small, direct and easily understood by those who have never heard PN before. I'm creating the packet I feel we all should have been handed the day we were diagnosed with PN or PNE.

I will keep you posted on the work.
Born with pudendal and obtorator neuralgia. 32 years of being misdiagnosed.
Surgery with Conway 7/14/10. Internal burning cured!
Currently in PT for many pelvic floor issues due to having PN for so long.
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Joined: Fri Sep 17, 2010 3:44 pm

Re: Letter to the Medical Profession

Postby mod3 » Sun Oct 31, 2010 12:25 am

We got the letter Kat! Sometimes I have so many things going on in my head I forget to connect them all --I just needed to put 2 and 2 together and realize that you were the same person. :lol: :lol: Please give the mods a few days to look it over.

And I love your idea of making up a packet of info for docs to give to patients. Please share what you come up with -- I think it would be helpful to a lot of people.
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Re: Letter to the Medical Profession

Postby kat » Sun Oct 31, 2010 2:01 am

I will share it as soon as I compile it.
As you know some days are good and some days are bad so work gets done very slowly.

I'm including my op report and also my PT report since I want to talk medically to the medical professionals.

I'm going at it with this angle:

You are in a unique position to help people with this rare condition.
Your expertise and vast knowledge of the human body and how nerves and muscles relate to each other gives you an advantage when diagnosing and pointing patients in the right direction when looking for the best care.

I want to be kind, but we all must agree that stroking egos is the best way to get our point across so that is the position I am taking.

I'm not sure what to say about the gap in treatments yet so if you have ideas about that I am all ears.

Neurologists wouldn't see me because the nerves were in my genitals
OB would not treat me because it was a nerve condition
Urologists would not help because he said incontinence is normal for a woman my age (I'm 32 and it is NOT NORMAL)
PTs couldn't help because they are convinced it is a muscular problem

My Chiropractor diagnosed me because when he said my body was in fight or flight mode and that he could not help me until my nerves would relax.

Should Chiropractors be 5th on the list of medical professionals I plan to personally visit?

Thoughts and suggestions are appreciated.

Born with pudendal and obtorator neuralgia. 32 years of being misdiagnosed.
Surgery with Conway 7/14/10. Internal burning cured!
Currently in PT for many pelvic floor issues due to having PN for so long.
Posts: 204
Joined: Fri Sep 17, 2010 3:44 pm

Re: Letter to the Medical Profession

Postby catherine a » Sun Oct 31, 2010 4:00 am

hi Kat,

Your input to produce an information package is just great. This is the type of thing that will help get the medical profession educated on PN. Your efforts will be most appreciated.

2004 PNE following vag. hysterectomy and A & P repair. 2007 TIR surgery France. severe entrapment at Alcocks canal & SS ligaments . Have my life back. 90% cured.No longer have medical appts.or physio.Some pain remains but is tolerable. 2012 Flew from Australia to the UK without pain flare. Very manageable. Almost back to normal. Now hold support group meetings at KEMH Subiaco Perth WA. Every 2nd Sat. of the month. Still pace my activities. PN doesn't dominate any more.
catherine a
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Location: Perth Western Australia

Re: Letter to the Medical Profession

Postby Violet M » Mon Nov 01, 2010 3:30 am

Kat, yes, I agree chiro's should be on the list because I'm sure many of them see PN patients who are trying to find someone who can diagnose them.
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
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Re: Letter to the Medical Profession

Postby johnd.h » Thu Nov 04, 2010 2:46 pm

Just want to add my thanks to all involved in the production of this letter. I intend to take this to my GP who clearly has no understanding or even knowledge of this terrible condition it would seem. I will also let all of my family read it so that they have a better understanding of the difficulties I am facing.

Thankyou again.

This site is a Godsend.

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Location: Kent. United Kingdom

Re: Letter to the Medical Profession

Postby Amanda » Fri Nov 05, 2010 11:41 pm

Welcome John

We do try to give our best experiences and knowledge as we know of it to help others here....we are all sufferers of this horrible condition and can only offer what we know to be right.
PNE started 2003 following Vaginal Hysterectomy, pelvic floor repair and right oophorectomy; eventually after many tests had BilateralTG surgery Nantes 2004; following this tried many other treatments including 7 day epidural, ketamin infusions to no avail; Trialed and was implanted with a Neurostimulator in 2007- Dr Van Buyten Belgium, this has enabled me to manage my pain much better.
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Re: Letter to the Medical Profession

Postby helenlegs 11 » Mon Nov 08, 2010 6:24 pm

Excellent ! I find the lack of knowledge, understanding and treatment SO frustrating. It has taken me over 2 years to get a diagnosis never mind treatment and I know that many people have a similar struggle or worse. I will deliver the letter to my GP who told me I just needed to go to pilates.
Fall 2008. Misdiagnosed with lumber spine problem. MRN June 2010 indicated pudendal entrapment at Alcocks canal. Diagnosed with complex variant piriformis syndrome with sciatic, pudendal and gluteal entrapment's by Dr Filler 2010.Guided piriformis botox injection 2011 Bristol. 2013, Nerve conduction test positive; new spinal MRI scan negative, so diagnosed for the 4th time with pelvic nerve entrapment, now recognised as Sciatic, pudendal, PFCN and cluneal nerves at piriformis level.
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