Went Away and Came Back

Hello all.  I was on this forum last year back in August/September, describing my burning pain, discharge, and tingling feet.  I suspected vulvodynia at that time but did not have a diagnosis.  I had been to multiple doctors with no help.  I have since then tried to come to this forum to update my condition, but every time I try to post, in the middle of posting, my browser shuts down completely.  It has happened to me today as well in the middle of posting.  So, I'm going to try again.

Back in October of last year I went to a "specialist" in Atlanta who was a real asshole.  No bedside manner, didn't seem to want to answer my questions and he wasn't caring or understanding at all.  My husband nearly lost his temper with him.  He told me my birth control had nothing to do with my vulvodynia (he did give me that diagnosis).  He suggested surgery.  He suggested gabapentin.  He suggested a pinched nerve.  He sent me to a neurologist in Macon, GA, who is fantastic.  Very kind, very caring.  He ran me through every test he could think of, all of which were negative.  He put me on Elavil 10mg, then titrated me up gradually to 30mg but all that seemed to do was make me sleepy and impair my short-term memory, which isn't good for my job as a Hospice nurse.

I started seeing a neurologically-based chiropractor.  I stopped taking my birth control.

Within four to five months, I was cured.  No discharge.  No pain.  No tingling/burning feet.  My cycles were back to normal, my discharge followed a NORMAL pattern.  My husband and I could have intercourse and I wouldn't hurt at all.  It was amazing.  It was wonderful.  It was a relief.

Back in September of this year, I took Plan B because my husband and I were scared our birth control method had failed.  It delayed my period by two weeks.  Then I got my period, and THEN I began having a discharge, symptoms of a yeast infection.  At that point I was terrified that the vulvodynia was coming back because I had had what I thought was a yeast infection when it started in 2014.  I was prescribed Diflucan and Clotrimazole this go-around.  It didn't help.  And now I have red, swollen vulva and even part of the "surrounding area" outside the vulva is red.  That same discharge is back, and my feet hurt even worse than they ever did before.  From the moment I put my feet on the floor in the morning, it literally feels like I have just been jumping up and down on a concrete floor, with bare feet.  Nothing helps with this pain except staying off my feet, which isn't possible with my job.  It's all back, and I don't know if it's because of the Plan B or what.  I still see my chiropractor.  I weaned myself off of the Elavil forever ago, long before this started back up.

The pain seems worse during the latter part of my cycle.  I can still have relatively pain-free penetrative sex, for the most part (some days are bad), but having my clitoris touched is painful and the edges of my labia as well as the inside closer to my urethra hurt all of the time.  I shave, and when there is regrowth, it literally feels like needles pricking my skin over and over.  I have been trying herbs and stuff since mid-late November as well as PEA capsules with no noticeable effect this far.  Just so you guys will know, I am taking PEA, scullcap, cordyalis, passionflower, hops, magnesium, vitamin b 12, vitamin b complex, zinc, and vitamin c.  I was taking dong quai for about a month, but stopped that and started the hops.  I don't know if any of this stuff will help me or if all I need to do is give it time.  I don't know if the Plan B caused this mess, or what.  It seems my body is back to it's normal cycle; I'm ovulating every month; I have an estrogen rise and LH surge and all that (I have a monitor which detects this) and during the times when I am most fertile, my pain seems somewhat lessened, and my discharge is more tolerable, less thick white globs and more clear with the white mixed in.  I'm still suspecting hormonal imbalance due to the Plan B and really, really just hoping that with time I will improve and get back to where I was.  Again, penetrative sex is possible and wonderful as long as we are careful(ish) and don't spend a long time with it.  But oral sex on my bad days can just be mostly miserable.  My husband thinks that the more I masturbate and things like that, the more my nerves will associate with pleasure down there instead of pain.  After I stopped birth control, we did do a lot of oral and he encouraged me to masturbate.  Eventually, I was completely better.  I don't know if that was just a time thing or if doing that really helped.  

I feel gross.  I know this discharge isn't normal.  I know it's because of the vulvodynia.  I'm miserable most days because of the pain, not just in my vulvar area but the pain in my feet makes it hard to do a lot of walking, and I just feel like... why?  Why did it come back?  If I just KNEW it was for sure because of the Plan B and it's just going to take time for my body to heal, then I'd feel better.  I would feel like I have something to look forward to.  But right now, I just feel hopeless and depressed, again.  I got better before, maybe it'll happen again.  But, in the same token, what if I just get worse again?  

I hope at least some of you ladies have found your answers, your cure.  I'm still dealing with the fact that this stuff is back, and with a vengeance.  And I hate it.  

Fingers crossed that this will post.

Edited to add: I am also having that urgency to urinate that I also had the first time I had vulvodynia (for almost three years straight). I also forgot to mention I am taking Vitex morning and night now from day 14 of my cycle until my period starts.

lindsey_taylor wrote:Hello all.  I was on this forum last year back in August/September, describing my burning pain, discharge, and tingling feet.  I suspected vulvodynia at that time but did not have a diagnosis.  I had been to multiple doctors with no help.  I have since then tried to come to this forum to update my condition, but every time I try to post, in the middle of posting, my browser shuts down completely.  It has happened to me today as well in the middle of posting.  So, I'm going to try again.

Back in October of last year I went to a "specialist" in Atlanta who was a real asshole.  No bedside manner, didn't seem to want to answer my questions and he wasn't caring or understanding at all.  My husband nearly lost his temper with him.  He told me my birth control had nothing to do with my vulvodynia (he did give me that diagnosis).  He suggested surgery.  He suggested gabapentin.  He suggested a pinched nerve.  He sent me to a neurologist in Macon, GA, who is fantastic.  Very kind, very caring.  He ran me through every test he could think of, all of which were negative.  He put me on Elavil 10mg, then titrated me up gradually to 30mg but all that seemed to do was make me sleepy and impair my short-term memory, which isn't good for my job as a Hospice nurse.

I started seeing a neurologically-based chiropractor.  I stopped taking my birth control.

Within four to five months, I was cured.  No discharge.  No pain.  No tingling/burning feet.  My cycles were back to normal, my discharge followed a NORMAL pattern.  My husband and I could have intercourse and I wouldn't hurt at all.  It was amazing.  It was wonderful.  It was a relief.

Back in September of this year, I took Plan B because my husband and I were scared our birth control method had failed.  It delayed my period by two weeks.  Then I got my period, and THEN I began having a discharge, symptoms of a yeast infection.  At that point I was terrified that the vulvodynia was coming back because I had had what I thought was a yeast infection when it started in 2014.  I was prescribed Diflucan and Clotrimazole this go-around.  It didn't help.  And now I have red, swollen vulva and even part of the "surrounding area" outside the vulva is red.  That same discharge is back, and my feet hurt even worse than they ever did before.  From the moment I put my feet on the floor in the morning, it literally feels like I have just been jumping up and down on a concrete floor, with bare feet.  Nothing helps with this pain except staying off my feet, which isn't possible with my job.  It's all back, and I don't know if it's because of the Plan B or what.  I still see my chiropractor.  I weaned myself off of the Elavil forever ago, long before this started back up.

The pain seems worse during the latter part of my cycle.  I can still have relatively pain-free penetrative sex, for the most part (some days are bad), but having my clitoris touched is painful and the edges of my labia as well as the inside closer to my urethra hurt all of the time.  I shave, and when there is regrowth, it literally feels like needles pricking my skin over and over.  I have been trying herbs and stuff since mid-late November as well as PEA capsules with no noticeable effect this far.  Just so you guys will know, I am taking PEA, scullcap, cordyalis, passionflower, hops, magnesium, vitamin b 12, vitamin b complex, zinc, and vitamin c.  I was taking dong quai for about a month, but stopped that and started the hops.  I don't know if any of this stuff will help me or if all I need to do is give it time.  I don't know if the Plan B caused this mess, or what.  It seems my body is back to it's normal cycle; I'm ovulating every month; I have an estrogen rise and LH surge and all that (I have a monitor which detects this) and during the times when I am most fertile, my pain seems somewhat lessened, and my discharge is more tolerable, less thick white globs and more clear with the white mixed in.  I'm still suspecting hormonal imbalance due to the Plan B and really, really just hoping that with time I will improve and get back to where I was.  Again, penetrative sex is possible and wonderful as long as we are careful(ish) and don't spend a long time with it.  But oral sex on my bad days can just be mostly miserable.  My husband thinks that the more I masturbate and things like that, the more my nerves will associate with pleasure down there instead of pain.  After I stopped birth control, we did do a lot of oral and he encouraged me to masturbate.  Eventually, I was completely better.  I don't know if that was just a time thing or if doing that really helped.  

I feel gross.  I know this discharge isn't normal.  I know it's because of the vulvodynia.  I'm miserable most days because of the pain, not just in my vulvar area but the pain in my feet makes it hard to do a lot of walking, and I just feel like... why?  Why did it come back?  If I just KNEW it was for sure because of the Plan B and it's just going to take time for my body to heal, then I'd feel better.  I would feel like I have something to look forward to.  But right now, I just feel hopeless and depressed, again.  I got better before, maybe it'll happen again.  But, in the same token, what if I just get worse again?  

I hope at least some of you ladies have found your answers, your cure.  I'm still dealing with the fact that this stuff is back, and with a vengeance.  And I hate it.  

Fingers crossed that this will post.

Edited to add:  I am also having that urgency to urinate that I also had the first time I had vulvodynia (for almost three years straight).  I also forgot to mention I am taking Vitex morning and night now from day 14 of my cycle until my period starts.  

I would suggest anxiety medication if the pain wasn't helped by amitriptyline. A lady on this forum reported success with an anxiety med which is also an antihistamine "Vistaril (hydroxyzine) reduces activity in the central nervous system. It also acts as an antihistamine that reduces the effects of natural chemical histamine in the body. Histamine can produce symptoms of itching, or hives on the skin. Vistaril is used as a sedative to treat anxiety and tension." I am thinking you might kill two birds with one stone, mainly the redness and the pain.

It's hard to say what the redness and inflammation is, I think I have had this on and off at some point. An obgyn in Germany gave me vaginal Vitamin C pessaries and Symbiovag once, an internal probiotic. these products don't exist in the UK and having been to OBGYNs in 3 different countries I've noticed they treat the same issue COMPLETELY DIFFERENT. both products worked very well for me, but not for vulvodynia issues sadly. They only helped BV.

I've googled about 5 to 6 different forums to find out everything I know about nerve pain and vulvodynia. I for instance have symptoms that relate to fibromyalgia rather than vulvudynia. Alas..

I hope you can find a good doctor..ever think about trying an UROGYN? Or the clinic in Rochester which specialises in pelvic pain ?

I battled vulvodynia (internal and external burning) for 15 years. I consider myself cured now. And no it doesn't take 15 years to heal. Once I finally got the right advice, it didn't take long.

I followed the advice of Anthony William. According to him, vaginal burning can be caused by an unknown and currently undectable strain of strep or shingles. There are few different varieties. The virus that weakened your system which allow these viruses to take hold is EBV (also currently undectable as well). Shingles and strep are co-factors of EBV. Shingles can cause tingling in your hands and feet. Yeast is present when fighting a infection. Yeast actually isn't the infection itself. Usually, strep or ecoli are present when yeast in present. So... just based on those three symptoms you probably have shingles and strep along with EBV. No worries though! I had all three as well.

My vagina is nice normal now. I have nice sex with my husband. I have a beautiful son. So now, I spend my spare time reaching out to others trying to help them shorten their battle with V. No one should fight this for 15 years. Ridiculous. You'll need to change your food and add some supplements but you can get you life back.

Check out my blog. Let me know if you have any questions. Please don't forget. Your body is fighting as hard as it can for you. We just need to help it along.

Sending prayers and hugs!
Sarah

http://myvulvodyniacure.blogspot.com/
sarisbaris40@gmail.com

The supplements you are taking are good but they don't specialize in killing strep and shingles and EBV. Once we get you on the right things, things should turn around.

sarisbaris wrote:The supplements you are taking are good but they don't specialize in killing strep and shingles and EBV. Once we get you on the right things, things should turn around.

You can't kill a virus like shingles, so please stop posting so much pseudoscience.

mary jane wrote:I would suggest anxiety medication if the pain wasn't helped by amitriptyline. A lady on this forum reported success with an anxiety med which is also an antihistamine "Vistaril (hydroxyzine) reduces activity in the central nervous system. It also acts as an antihistamine that reduces the effects of natural chemical histamine in the body. Histamine can produce symptoms of itching, or hives on the skin. Vistaril is used as a sedative to treat anxiety and tension."  I am thinking you might kill two birds with one stone, mainly the redness and the pain.

It's hard to say what the redness and inflammation is, I think I have had this on and off at some point. An obgyn in Germany gave me vaginal Vitamin C pessaries and Symbiovag once, an internal probiotic. these products don't exist in the UK and having been to OBGYNs in 3 different countries I've noticed they treat the same issue COMPLETELY DIFFERENT. both products worked very well for me, but not for vulvodynia issues sadly. They only helped BV.

I've googled about 5 to 6 different forums to find out everything I know about nerve pain and vulvodynia. I for instance have symptoms that relate to fibromyalgia rather than vulvudynia. Alas..

I hope you can find a good doctor..ever think about trying an UROGYN? Or the clinic in Rochester which specialises in pelvic pain ?

Thank you so much for the information. With the job I have, and the fact that I am the only one currently working, it is nearly impossible for me to take leave for several days in a row, which is what I would have to do to go to Rochester. When this all started before, I went from doctor to doctor to doctor and I really can't do that right now. I am just hoping this is all a hormonal imbalance like with the birth control, since I did take Plan B for a couple months in a row before all of this started up again. But even if it is that I have no idea how to get back on track. It's frustrating.

I have read that so many women with this issue wind up having concurrent autoimmune diseases. Have they done studies on you that confirm fibromyalgia?

sarisbaris wrote:I battled vulvodynia (internal and external burning) for 15 years. I consider myself cured now. And no it doesn't take 15 years to heal. Once I finally got the right advice, it didn't take long.

I followed the advice of Anthony William. According to him, vaginal burning can be caused by an unknown and currently undectable strain of strep or shingles. There are few different varieties. The virus that weakened your system which allow these viruses to take hold is EBV (also currently undectable as well). Shingles and strep are co-factors of EBV. Shingles can cause tingling in your hands and feet. Yeast is present when fighting a infection. Yeast actually isn't the infection itself. Usually, strep or ecoli are present when yeast in present. So... just based on those three symptoms you probably have shingles and strep along with EBV. No worries though! I had all three as well.

My vagina is nice normal now. I have nice sex with my husband. I have a beautiful son. So now, I spend my spare time reaching out to others trying to help them shorten their battle with V. No one should fight this for 15 years. Ridiculous. You'll need to change your food and add some supplements but you can get you life back.

Check out my blog. Let me know if you have any questions. Please don't forget. Your body is fighting as hard as it can for you. We just need to help it along.

Sending prayers and hugs!
Sarah

http://myvulvodyniacure.blogspot.com/
sarahcamp20@gmail.com

Thank you for your reply, Sarah. One of the first things I stumbled upon in my searches when this all started up again was your blog, and I initially tried many of the things that you mentioned there. I took Nettlelear and Zinc for nearly a month with no effect. I used the Lobelia and Yin Care since my pain was mostly external anyway with every shower. The Yin Care felt soothing for a short amount of time, but that was all I ever seemed to notice. The supplements I purchased were the ones recommended by Anthony Williams. Unfortunately, I just wasn't getting any relief at all.

Hello all. Just to give you an update, about 3-ish weeks ago I spoke with a Nurse Practitioner whom I work with that has some experience treating women with vulvodynia. She has recommended:

Vitamin C 1,000mg twice a day
Hawaiian Spirulina three tabs daily
Maca Root two capsules daily
Amino Acid NAC 600mg twice a day
Sea buckthorn oil 2 capsules daily
Calcium citrate two tabs in the morning and two in the evening.

She also advised me to try Pre-seed lubricant, to insert every night for a couple of weeks.

I have no noticeable burning inside the vagina at all. I continue to be very red, swollen, and irritated externally. Stimulating my clitoris can be painful. The tissue immediately surrounding my clitoris and the tissue at the bottom of my vulva and on the outer sides of the vulva hurt when touched. My feet hurt all the time. I continue to have white discharge that is almost paste-like, and when it dries on my fingers and I rub them together, it looks like glue does when you do the same thing to it. Because of that, the Nurse Practitioner things it might be cytolitic vaginosis. I'm pretty sure I was treated for this the first time all this started, to no avail. But I can always hope, right?

lindsey_taylor wrote:Hello all.  Just to give you an update, about 3-ish weeks ago I spoke with a Nurse Practitioner whom I work with that has some experience treating women with vulvodynia.  She has recommended:

Vitamin C 1,000mg twice a day
Hawaiian Spirulina three tabs daily
Maca Root two capsules daily
Amino Acid NAC 600mg twice a day
Sea buckthorn oil 2 capsules daily
Calcium citrate two tabs in the morning and two in the evening.

She also advised me to try Pre-seed lubricant, to insert every night for a couple of weeks.

I have no noticeable burning inside the vagina at all.  I continue to be very red, swollen, and irritated externally.  Stimulating my clitoris can be painful.  The tissue immediately surrounding my clitoris and the tissue at the bottom of my vulva and on the outer sides of the vulva hurt when touched.  My feet hurt all the time.  I continue to have white discharge that is almost paste-like, and when it dries on my fingers and I rub them together, it looks like glue does when you do the same thing to it.  Because of that, the Nurse Practitioner things it might be cytolitic vaginosis.  I'm pretty sure I was treated for this the first time all this started, to no avail.  But I can always hope, right?

I think there is a gel produced by an italian company for the external redness and pain called SAGINIL gel that someone else posted about and works.

If your feet hurt all the time, it's called referred pain. At this stage I would quit taking the supplements except calcium citrate and start taking some serious medication like Cymbalta or Lyrica.

your nurse should know this !! What is wrong with medical professionals

I'm so sorry your symptoms came back. I totally understand the feeling of wanting to know if its a "relapse" or if it's from Plan B. I experience random itching so sometimes I don't know if I'm getting a yeast infection or if it's a flare up of vulvodynia. It makes me go crazy and totally consumes.

I think it's interesting that you had issues with urgency before you had vylvodynia. I started having issues with urgency a few months before as well. I went to Pelvic Floor PT which definitely helped. I basically did stretches that helped loosen my pelvic muscles since they were apparently so tight that they pulled on my bladder. As long as I do the stretches a few times a week the urgency stays away, but it always returns if I forget to do them.

I'm crossing my fingers that you will be back to a symptom free life soon!!

ryn207 wrote:I'm so sorry your symptoms came back. I totally understand the feeling of wanting to know if its a "relapse" or if it's from Plan B. I experience random itching so sometimes I don't know if I'm getting a yeast infection or if it's a flare up of vulvodynia. It makes me go crazy and totally consumes.

I think it's interesting that you had issues with urgency before you had vylvodynia. I started having issues with urgency a few months before as well. I went to Pelvic Floor PT which definitely helped. I basically did stretches that helped loosen my pelvic muscles since they were apparently so tight that they pulled on my bladder. As long as I do the stretches a few times a week the urgency stays away, but it always returns if I forget to do them.

I'm crossing my fingers that you will be back to a symptom free life soon!!

The ithcing is neurogenic. Try lidocaine 5% ointment


"Treating neuropathic itch is difficult; antihistamines, corticosteroids, and most pain medications are largely ineffective. Current treatment recommendations include local or systemic administration of inhibitors of neuronal excitability (especially local anesthetics) and barriers to reduce scratching."