Patient Handout

[Violet M]

What would you like to see in a patient handout on pudendal neuralgia?

Please post your ideas here or send them to violet@pudendalhope.org. Thanks,

Violet

[Karyn]

Hi Violet,
Just a few questions:
1. How many pages are the Directors thinking about for the handout?
2. Are you planning to include information that isn't already available on the site?
3. Is this something that would be available on the HOPE site for folks to download and print?

It would seem to me that the most valuable resource for a patient handout would be RESOURCES. Where to find help for diagnostics, surgeons, pain management, alternative treatments, etc ....
Warmest of regards,
Karyn

[Violet M]

Sorry, I should have been more specific. We've been asked for a leaflet that doctors can hand out so I'm thinking one page folded into 3 sections with info on front and back. It would probably mostly be info that's on the website but it would be something providers could download and print to give to patients. We have such a long list of providers I think it would have to direct people to the website for that list. So I would like to hear from patients what info they feel is most important to include in a leaflet that gives a summary of PN.

[helenlegs 11]

I suppose that if a patient is has been given a hand out they are on the way to PN treatment, so it's the wealth of information on this site and the HOPE community support and help that is important.
It's a shame that the wrongly diagnosed pelvic pain patients can't be given the leaflet. 'do you suffer from pelvic pain and nothing has helped?' or 'Had a diagnosis of IC and think it's nonsense?' That's not going to happen is it! being dished out to those they have misdiagnosed
Maybe it should have a bold(ish) hope logo but what H.O.P.E stands for in smaller text and Pelvic(nerve) Pain more prominent, even without the nerve, ? I haven't thought this through too well but the best we could hope for is to reach out to those who are floundering with a wrong/no diagnosis as well as those who have started on the right track.
I hope tons of people do have an input here
Helen

[Violet M]

These are great ideas, Helen! Thanks.

[janetm2]

Violet,
From what I see in the welcome center for people who first arrive it seems we say:
Go see a PN PT
get the diagnostic tests ( Potter or other 3T MRI or possibly MRN, nerve blocks, etc)
Stop sitting and whatever else causes you pain
get medication (Amitriptylene, gabapentin, Lyrica, Cymbalta, combo)
Maybe what they can give to their doctors for explanation to gain support
How to explain to friends, family, work
helpful hints such as grabber to pick up stuff, cuddling with young children you cannot pick up
Cushion info
Surgery alternatives like Dr Andrew ESWT...

note many things need to point to areas of the site but the top 5 of each?
Oh yes symptom list to give a clue to applicability.

Janet

[Violet M]

Thanks Janet -- that's a very helpful summary/outline.

[nyt]

Such wonderful ideas by everyone. When I think of handouts that I've gotten at dr.'s office I think Violet's idea of one page tri-folded is right on target. It could be divided into sections (my list below is not in any specific order):

1) What is Pudendal Neuralgia
2) How is PN treated
3) Typical medication options
4) Self-help
5) The role of pelvic floor PT
6) Who can diagnose and treat PN
7) Surgical Options
8) Life-style modications
9) Resources (this is where you could put website links ie here, spun, international pelvic pain society, american pain foundation etc.)

These handouts could even go to the dr.'s who treat PN to give to their patients as general info. Dr. Howard has an information sheet that is available on-line

http://www.urmc.rochester.edu/smd/Rad/Pudendal.pdf

[Karyn]

Thanks for posting Dr. Howards handout, NYT. Looks like it covers everything and is consistent with the info from this site. Maybe we just need to modify it a little bit to add the HOPE logo and add a link to this site.

We've been asked for a leaflet that doctors can hand out so I'm thinking one page folded into 3 sections with info on front and back.

Is it "PN" docs that have requested the leaflet? Specifically, what (specialty) doctors would be handing these out?

It's a shame that the wrongly diagnosed pelvic pain patients can't be given the leaflet. 'do you suffer from pelvic pain and nothing has helped?' or 'Had a diagnosis of IC and think it's nonsense?' That's not going to happen is it! being dished out to those they have misdiagnosed

I agree. I guess my concerns are: Would we be providing redundant information for patients who have already been to this site and/or are in the process of seeing a PN knowledgeable physician? Are we providing handouts to physicians who aren't PN(E) aware and don't treat it in any way?

[helenlegs 11]

I'm sure there will be patients who have been diagnosed with PN who have just been lucky enough to have a good Dr and know nothing about HOPE (got to be ??) If any of us see the leaflet (bound to be fabulous Violet) pick it up, develop a warm glow, then PUT IT BACK!!
I would love to see some pelvic pain leaflet in every doctors surgery, women's health clinic's, well man's clinic's as well as the specialised people. As impractical as that may be (would need government(s) backing for all I suppose)
What do others think would be doable and practical?
Love all suggestions as to content.
Are the questions
Content. . . . . . . alone?
Where to distribute ?
Any thing else?