Vulvodynia - how many patients have it and what are your symptoms

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Hi ladies,

Ive been a patient of Dr B's for about 18 months now. About 6 weeks ago she changed my herbs completely which has lessoned the migraines and actually I have been sleeping well for the most part which has been a challenge and only getting up once a night.  I can last for about 5 hours before I need to pee.  But the one major thing that I still feel is a challenge is VV.  so I'm wondering... how many patients have it?  what specifically are your symptoms?  when have you noticed a decrease in pain during treatment and most importantly, how do  you get past the fear to be able to enjoy sex again?  Its something that I have been putting aside since I have so many other symptoms as well which I will detail on a different topic trail.

Any input is appreciated.  Thankyou.

 

Tinkerbell7's picture
Tinkerbell7

Hey Adriane!  So good to "see" you!  Unfortunately, this is still one of my remaining symptoms... so much has gotten much much better for me, but this is the one that lingers on and on... It has gotten better here and there with herb changes, but it is still there.  Mine is mainly feelings of inflammation, as well as stabbing, pinching, and acidic feeling.  I think this will be one of my last things to go.. unfortunately.  I asked Dr. B why this is still bad, and she said it is because of all of the lymph nodes we have down there.  She said when the lymph is flushing out toxins, it causes more pain.  This makes sense in my situation, so I trust her on it.  Again, so good to hear from you here!  I had been thinking of you. xo

cprince's picture
cprince

Hi Adriane! My vv is also still very problematic for me, now 2 years into treatment, better than when I first started, but still deal with it on a daily basis. I also notice much worse right before, during and after my period. It feels raw, burny, itchy, stabby and pinchy! I am always hopeful that sex is not going to be so painful, but always so sad when I get the courage to try and am in tears because of the pain! It feels like it will never go away, but will have to be patient like we have had to be with everything else along this journey!

Tommygurl's picture
Tommygurl

I have a few minutes only before I put down my little boy to bed.  Tinkerbell!!  So happy to hea from you :)  Huge smile & hug!.  You have been on my mind often as its been AGES!  I would love to catch up with you via phone if you want, as we both started around the same timeframe.  Let me know if you are. 
Thank you everyone for the insight.  CPrince:  I see that you still have that pesky toe nail issue too?  how have you improved?  The VV right now is internal vaginal itchiness and when I wipe it feels like sharp pain, jabbing.  I'm so fearful to have sex yet its really taking a toll on our marriage.  I pray one day to be better.
I will reply to all later tonight.  Gotta get him down to bed or tomorrow will be not so great to get him to school

Lelibre50's picture
Lelibre50

Shortly after my bladder problems started (6 years) ago I developed bacterial vaginosis.  It was after this that the vulvodynia started.  
Since starting treatment 17 months ago I still have the VV.  It is mostly a burning and sometimes itchy sensation.  Before treatment with Dr. B my vagina tissues would swell terribly.  On occassion I barely feel the VV - but it does not last long - maybe a few to several hours of relief - sitting and lying down make it worse.  I am looking forward to when this symptom calms down and I have some longevity with being symptom free.  I still get quite a bit of die-off and cleansing going on.  When I get my period all my symptoms go away. Only to return when it is over.  Who would of thought I would look forward to my period.  We will heal - the VV just really sucks.  
Patience is a virtue.
Breis

Tommygurl's picture
Tommygurl

Hi Breis
Your symptoms sound just like mine pertaining to VV - the period makes it go away but just as its ending, the come back ASAP.  I also started this 6-7 years ago after giving birth to our son.  I had to have a D&C due to miscarriage, then got pregnant 3 months later.  after his birth, I bled so heavily around 8 months later and thats when the Dr put me on Birth Control which I was on for 4 years.  Sex during that time was so painful and still is.  I feel like I will never recover from VV.  Its such a hard thing to deal with.  Right now, the interna vaginal itchiness is back after so many months of it  being gone.  Not sure why its back  Thank you for your input.  Be well.