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question about vulvodynia

By March 30, 2010 - 6:02pm
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I been having pain off and on , more on then off with burning and itching, seems now more burning in the vaginal area , its been 4 months, I had every single test from std's to diabetes and yeast infection etc, my doctor said there is no other test he can think off for me to take, I had Conns syndrome when I was 28 years old, they removed my Adrenal Cortex gland, I am 46 and was told I am peri-monapausaul, my doctor said its stress related , symptommaticic stress , sometimes I think so , I was on Premarin 2'ce a week for 8 weeks but stopped , I was discharging white creamy stuff that was burning my vulvo area , it was white clumps, I just finished monostat for 7 days , but my doc feels its the premarin , lately I feel fine during the day then as the day goes on I notice white stuff and it burns, do I have vulvodynia, the white stuff has only been recently being discharged , I felt I was on the rd to recovery but now I am not sure , can't take any more estrogen I had a bloodclot at 16 .p.s. I am not itching as much now as I am burning Thanks you waiting for an answer

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Hi Laura123

At this point I have two suggestions. Again, I'm sorry you are so miserable. First, I would find an gyne associated with a teaching hospital or medical school. I'm not sure where you live. I would go to a Mayo, Cleveland Clinic, University of Chicago Dept. of Gynecology, that sort of thing. Those tertiary centers see things other doctors don't, because people with complex or difficult problems get sent to these places. This may be something they are very familiar with that your doctors are not. Secondly, I don't know what kind of diet you eat, but you might try some dietary changes to restore beneficial bacteria and PH balance such as eating yogurt, drinking cranberry juice, decreasing sugar intake, and that sort of thing. Sometimes all these meds strip out the good bugs as well as the bad ones, and a few tweaks to the diet can encourage healthy flora to return and keep things in balance.

I sure hope you can get to the bottom of this issue and get some relief.

April 5, 2010 - 6:27am
EmpowHER Guest
Anonymous (reply to Cary Cook BSN RN)

Hi Cary,

Thanks again , I have been doing exactly everything you suggested with having some relief, I live in Torronto Ontario , I haven't been intimate with mu husband for 3 1/2 months because of the burning and itching I have been having and when I tried to be Intimate 3 times only since it happened back in December it only made it worse , the burning and Itching was so unbearable , but while being Intimate it didn't hurt , it was only after 15 -20 minutes later . But, now its been over 3 1/2 months ago since we tried ,my Doctor suggested we try again , so just the past week we tried again on several ocassions , this time it just hurted when we were being intimate while we were doing it unlike before , and after it just got sore and red , I am not sure if its because we haven't been intimate for awhile thats why it hurts and gets sore after, but the intense burning had subsided , still have a bit itching on ocassions, and still irritation still on external of my vulvo area. I have been using a different Lubricate suggested by a pharamist because the KY Gel stings when applying , but on one ocacssion the new Lubricate did the same.So I think I am still sensative on my Libia area and surrounding Vulvo area . Thats why I questioned if its Vulvodynia , because everything else of all test results were normal. My family Doctor said Vulvodynia theres no known diagnous for that because its stress related problem?? I have been on Gabepentin for almost 2 weeks, Clonazopam for awhile , the Gapepantin is for blocking the nerve fibers , its also perscribed for Vulvodynia , and any Nerve damage , the cLonazopam is for aniexty and panic attacks, I take both at night before bed . I am really praying that its just healing itself and that I don't have to depend on medication to heal me , during the daytime now I am feeling much better, sometimes I have to take Tynol extra strength if I feel soreness coming on or any sysmptons.Ass far as the sugar I have elimated that , well all the junk foods , Chocalates deserts etc... I never craved them before until about 4 years ago , I think thats about the time I was starting the change of life, peri-menopause. Right now I am concerned about the pain I endure (still somewhat bearable) while being Intimate , I usually wait until bed time so that I can take my meds a hour before so that it helps with the pain . The pain its not related to not being Lubricated because we have that covered ..., I am hoping its just because we were not sexually activate for such a long time as my husband states. My Family Doctor is a male , I don't think they understand what women endure .Thank you for your contiuing support . I feel like I finally have a support group I can talk too . Thanks again .

P.S. I tried sending a message prior to this one but I don't think it sent , if it did sorry its because I couldn't see my previous message being sent out. Thanks again

April 5, 2010 - 8:26am

Hi Laura-

I'm sorry you are feeling so miserable. I totally agree with Pat - if you are not seeing a gynecologist, you should. If you are, I'm not sure why he isn't able to figure out your diagnosis. There are a several common conditions that cause similar vaginal symptoms. Yeast overgrowth (candida) sounds a lot like what you have going, discharge-wise. Sometimes treatment with Monistat or other topical just doesn't do the trick, and an oral medication is prescribed. Diflucan is a common med used for this. Yeast infections can come and go, some women have them chronically. A change in diet can sometimes help with that.

Bacterial vaginosis, vulvodynia, and trichomoniasis are some other vaginal issues that can cause similar symptoms, but the white clumps you are describing are often related to yeast.

If your doctor is a gynecologist, make another appointment so you can get this figured out, or find another gyne for a second opinion. If your doctor is not a gyne, like Pat said, you need one. I have a link that discusses these various infections, perhaps it will help (http://www.emedicinehealth.com/vaginal_infections/article_em.htm#Vaginal Infections Overvie). In the meantime, it is reasonable to be aggressive about getting proper treatment for your issue. Long term infections can cause problems, so you'll want this taken care of as soon as possible. It sounds like you have been pretty patient already, so if you have to be a little pushy to get the care you need, then be pushy.

Please let us know what happens.

April 1, 2010 - 6:30am
(reply to Cary Cook BSN RN)

Thank you Carry for your comments I graetly appreiate it, as my lastest reply to Pat , I had seen 4 GYN's I have and been very agressive about lt to all Doctors I have seen, I was on Steriods 5 creams different kinds I had almost every antibiotic orally and inserted interally , I was treated for Severe Vaginitis , even though all test results were negative , I was given meds for STD's that came out Negative , I am so sick of medication its crazy, I was given a perscribtion for yeast infections orally and internally at least 4 times , they say my Vagianl is very healthy , nothing abnormal , but its very senasative around my Labia internal arear, couldn't even use KY gel anymore , not evn toilet tissue , its that sensative , changed eveything I had incase its an allergy , done evrything that I can do to rule out everything, if you have time read my lasted reply to Pat , I don't think theirs anything the doctors haven't perscribed me I haven't taken , I was definately given perscribtions fot infections from several doctors , I had seen too many Doctors while vacationing in Florida , so one Doc say this another say that , I am now back home and my Doctor don't want to perscribe anything else too much antibiotics I had already taken , I spent seriously over $1000.00 in perscribtions since I was in Florida from Dec 2009 - mid March , we actually flew home from Florida in January for 2 weeks to see my family Doctor and the GYN , the lastest appointment I had with this GYN here was just over a week ago , he said theirs nothing else he can do , he told me if the Premarin or Monastat didn't work then theirs nothing else wrong with me . Read my lastest reply to Pat . Thank you for yours and Pats support.


April 1, 2010 - 7:51am
Expert HERWriter Guide Blogger

Hi Laura - I can't tell from your comments whether you're seeing a family physician or a gynecologist. If you're not seeing a gynecologist it would be in your best interest to get a referral to one, a physical exam and a treatment plan to deal with your situation. Continuing to have a discharge indicates that your condition is not being managed and needs attention. A discharge on its own, however, is not a typical symptom of vulvodynia.

We can't diagnose your condition, but we can provide you with information that you can use to evaluate whether this information seems to fit what you're dealing with and to use in seeking treatment.

Here's the link to the EmpowHER reference page on Vulvodynia which includes information on the causes, symptoms and treatments:

This is another great resource:
National Vulvodynia Association

Let us know if this helps. Take care, Pat

March 31, 2010 - 5:51pm
(reply to Pat Elliott)

Hi Pat,

Thanks for your reply, I had seen 4 GYN and they all told me everything was normal, I was told by that Gyn that perscribed the Premarin Cream it will sometimes discharge , as I looked it up in the web site on Premarin it also had stated that, as far as that white cream coming out it had stopped since I just had a period I gues it absorbed the remaining amaount, I also seen my family Dr he also stated to stop the Premarin he told me my body has absorbed what it was able to absord , and for me to stop it. As I mentioned I cannot be on Estrogen dued to a bloodclot I had when I was 16, I was on Accomadin for 2 years , I had a stroke/cancer/highblood pressure @ the age of 27 all related to Conn's Syndrome, which caused Hypertension, I had me Adrenal Cortex removed with the Tumor the size of a grapefruit. So other then the discharge do I have Vulvodynia symptoms, cause all the Drs and I seen 4 GYN'S , at least over 20 doctors , alot when I was vacationing in Florida from Nov 2009-March 2010, I was under tremendous stress being away from home that long for the first time away from my kids(which are 29, & 22) they are still my kids even though they are adults, I had my Estrogen/Progestrogen and Testostrome tested all normal, my Cortisol , checked for Diabetes, my Electolytes , potassium , all tests for STD'S , UTI tested several times, yeast infections tested , even though I was still told to do Monostat for 7 days and every single tst came back NEGATIVE and the same for my Husband he had every test that was possible to be 100% sure it wasn't caused from him and all came back NEGATIVE, just finished that last week after the first discharge I had seen of the white cream, the Dr at the Emergency told me then it was Premarin Cream, it only discharges the cream in small amouts twice since then that was after I did the insertion of the dosage of Premarin on Friday past, that swhen my family Doctor told me to stop. The thing is the few times I was intimate with my husband , when we did it didn't hurt inside at all, it was just after 15-20 minutes thats when the burning and itching started all over again that was back in December and I haven't treid since. That is why I think its Vulvodynia because every aother test has ben ruled out , I asked my Dr is it Vulvodynia as well as the GYN they said no , then why do I have these symptoms come and go all the time, my doctor said its stress related and thats what vulvodynia is caused from my Dr told me, I am on Gabepatin and Clonozapam for aniexty, panic , I take both at night time , I try to deal with the pain in the daytime as much as possible. P.S. when I am on my period as I am now there is no systems at all , except this period I have a little soreness around I think its called the clitoris , I am not sure exactly where it is somewhere around that area. So what do you think can it possible be vulvodynia if not what is it I havedo aanyone know , I am so desperate for an answer its really tearing me up inside emotionally , I am so depressed , and have no more energy to fight this pain anymore. I am desperatly looking for someone that understand what I am going through. If you have any answers let me know. Thank you again Pat.


April 1, 2010 - 6:42am
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