Sharing my story - request for info + products that help

[Guest guest]

Hello all,

This whole thing has been quite a journey/process.  Not one I would have

chosen, and would LOVE to stop.  However, this does not seem to be the case. 

I’ve been very lucky with my doctor situation. 

1 -The first GYN after prescribing steroid cream to use for 3-months (because

the topical estrogen didn’t have an effect), told me “this just happens to

some women†– not soooo good a response, so I got a second opinion. 

2 - Second doctor agreed with her, but opted for a 7 day different steroid cream

and thought I would know by then if it would have a positive effect.  If not, I

really opt to see a specialist. 

3- Very fortunately for me, Dr. Boardman (previously of Providence, RI) was near

by.  She was wonderful!!  Tried amitriptyline – seemed good at first, but

increasing walking-zombie side-effects were too much.  Now I’m on Neurotin. 

It seems that when I first started 300 mg 1x per day.  I felt relief (and the

side effects lessened).  Eventually worked up to 300 mg 3x per day and felt

steady for a while.  [side note for those who are keeping track - Dr. Boardman

moved to Florida (near Orlando?).  She will be teaching – great! – but may

not be seeing patients..]

4 - New GYN, with my first visit I felt very cared for.  She spent a long time

(almost 2 hours with me!) going over my personal history, etc..  She upped my

Neurotin dose to 400mg 3x per day.  It seems with each increase I feel almost

symptom free for a while.  I LOVE that.  Still the idea of continually taking

an anticonvulsant just doesn’t sit well with me.  I hope, I hope, I hope this

fades.  But who doesn’t.

She suggested I may want to see a Vulvar clinic in Boston.  As I have very

localized pain, she thought it may be worth looking into their assessment (for

surgery perhaps).  Has anyone had experience with surgery (or assessment

criteria)?  I would love to hear from you. 

I have found the following products helpful and wanted to pass the info on:

- 100% cotton undies (of course!)

Gladrags - http://www.gladrags.com/

Aquaphor (as a topical shield, It’s as easy as Vaseline, but I like it better)

http://www.eucerinus.com/products/hb_aho.html

Travel Bidet - Lots of sites (best price I found):

http://store.cleanbutt.com/index.asp?PageAction=VIEWCATS&Category=9

Hope this helps someone else – Good luck with your days,

Lena

[Guest guest]

Hi Lena,I think many of us can relate to the "journey/process" aspect of vulvar pain. *sigh* When you mentioned the Vulvar Cinic of Boston, are you referring to the one that is run by Dr. ? If so, there seems to be mixed reviews about her. Some like her, but I've seen many responses where women don't care for her or her bedside manner. As for surgery, there are 'some' that belong that to this group that have had successful surgery. You might want to put 'surgery' or vestibulectomy in the subject line and see if that helps with responses. Have you tried Physical Therapy? Some have had good success with PT. Not all PT's truly understand pelvic floor dysfunction and how tight pelvic floor muscles contribute to vulvar pain, but some are truly experts at

it. Seems like for many of us there can be more than one issue adding to the vulvar pain. It's like a puzzle, but stay determined!!! Thanks for sharing your info and for the links. Welcome to the group!Take Care,Chelle