Letter to the Medical Profession

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Mod8
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Joined: Thu Sep 02, 2010 2:18 pm

Letter to the Medical Profession

Post by Mod8 »

The directors of HOPE have put together this letter for anyone who wishes to print it off and take to their health care specialists. Doctors, Nurses, Therapists etc. The more people we reach, the more we raise awareness of PN.
HOPE Letter to Medical Professionals.pdf
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HOPE letter to Medical Professionals Grey.pdf
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The document/letter that was originally posted was a word document file. It is now changed to a "read only" letter because the directors of HOPE are asking that it not be modified since it is on our official letterhead. We know that our great forum members would not modify it without our permission. Thank you.
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Karyn
Posts: 1655
Joined: Fri Sep 17, 2010 12:59 pm
Location: Lowell, MA

Re: Letter to the Medical Profession

Post by Karyn »

Thank you very much for making this valuable document available to all of us!
Warm regards,
Karyn
Ultra Sound in 03/08 showed severely retroverted, detaching uterus with mulitple fibroids and ovarian cysts.
Pressure and pain in lower abdomen and groin area was unspeakable and devastating.
Total lap hysterectomy in 06/08, but damage was already done.
EMG testing in NH in 04/10 - bilateral PN and Ilioinguals
3T MRI at HSS, NY in 09/10
Bilateral TG surgery with Dr. Conway on 03/29/11. Bilat ilioinguinal & iliohypogastric neurectomy 03/12. TCD surgery 04/14.
TracyB7777
Posts: 196
Joined: Mon Sep 27, 2010 3:42 am
Location: Vail, Arizona

Re: Letter to the Medical Profession

Post by TracyB7777 »

This is wonderful!! Thank you. I plan on taking it to my DO on Tuesday. He felt my pain was stress related and I just needed to learn to deal with it. ARGH!!! He's only still my DO because work is in the process of changing insurance and I need him to keep my meds current.
Have been dealing with burning pain since Jan 2010.
No sitting since April 2010.
Seen the following dr's: DO, GYN, Dermatologist, Accupuncturist,
URO GYN (his RN is the one who suggested the pain could be PN), Neurologist
Had ECG and MRI both inconclusive, only the SSEP said Pudendal reaction was abnormal and they lost that test result.
Saw Dr. Castellanos April 6, 2011. Next steps, MRI and botox. Having PT while waiting.-Botox denied, appealing to Insurance company now. :(
Judith
Posts: 30
Joined: Sun Sep 19, 2010 5:34 am

Re: Letter to the Medical Profession

Post by Judith »

Great letter, thanks so much- I will share with all my practitioners.

Judith
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Charlie
Posts: 214
Joined: Fri Sep 17, 2010 11:48 pm

Re: Letter to the Medical Profession

Post by Charlie »

Yes I agree. Thank you for making this document.
Tried numerous medications as well as a long period of myofascial physical therapy combined with meditation/relaxation. My pelvic floor muscles are now normal and relaxed on exam ( confirmed by many Pelvic floor PTs) yet my pain remains the same. Also have intense leg pain. Deciding on next treatment.
mod3
Posts: 2271
Joined: Tue Aug 31, 2010 4:18 pm

Re: Letter to the Medical Profession

Post by mod3 »

The document/letter that was originally posted was a word document file. I have changed it to a "read only" letter because the directors of HOPE are asking that it not be modified since it is on our official letterhead. We know that our great forum members would not modify it without our permission. Thank you.

I also added a grey version if anyone wants to save color ink.

Mod3
kat
Posts: 203
Joined: Fri Sep 17, 2010 3:44 pm

Re: Letter to the Medical Profession

Post by kat »

The version of the letter you created first is the one I modified and have been distributing to my docs and medical practitioners.
It has led to discussions of PN and PNE with those who have never heard of this condition so it is very helpful as a conversation starter.
It does not have you letterhead so I feel there should be no issue with getting the word out anyway we can.

If you prefer I put the letterhead on the version I modified, I am more than willing to do that.
Let me know what you are most comfortable with.

Keep up the good work spreading awareness of this medical condition.

Kathy
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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Karyn
Posts: 1655
Joined: Fri Sep 17, 2010 12:59 pm
Location: Lowell, MA

Re: Letter to the Medical Profession

Post by Karyn »

Thanks for the grey version, Mod3! Great idea about making it a "read only", too!
Warm regards,
Karyn
Ultra Sound in 03/08 showed severely retroverted, detaching uterus with mulitple fibroids and ovarian cysts.
Pressure and pain in lower abdomen and groin area was unspeakable and devastating.
Total lap hysterectomy in 06/08, but damage was already done.
EMG testing in NH in 04/10 - bilateral PN and Ilioinguals
3T MRI at HSS, NY in 09/10
Bilateral TG surgery with Dr. Conway on 03/29/11. Bilat ilioinguinal & iliohypogastric neurectomy 03/12. TCD surgery 04/14.
mod3
Posts: 2271
Joined: Tue Aug 31, 2010 4:18 pm

Re: Letter to the Medical Profession

Post by mod3 »

Kathy, it's awesome that you are getting the word out. We are just asking people that if they are distributing the letter in the name of the organization using the letterhead that it please not be modified. If you've already distributed it -- hey, no worries. ;) Thanks for getting the word out.

Mod3
Mod8
Posts: 685
Joined: Thu Sep 02, 2010 2:18 pm

Re: Letter to the Medical Profession

Post by Mod8 »

thank you Mod3 for fixing this.
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