Still have vulva burning :(

Szabo,

So sorry. Did they test you for bacterial vaginosis, yeast infection, and urinary tract infection?

Have you been tested for chlamydia trachomatis and chlamydia pneumonia? The first is the sexually transmitted form. The second can also affect sex organs from what I read in Buhner’s book on chlamydia treatment.

Had you changed soap or laundry detergent or any new or different products that would come in contact with the area before this started? Did you change underwear materials - ex. from cotton to nylon or something.

Did you look into vaginal atrophy? (Most doctors don't know about this except when it's associated with menopause.) Are your estrogen levels normal?

I had vaginal atrophy while breastfeeding at 28 and no one could figure it out, including six gynecologists. It has returned (albeit more mildly) because since having Lyme I have HPA axis dysfunction. For me, this means I have almost no estrogen or progesterone (the levels of a typical 80yo person), but I have normal cortisol. My body basically confiscates the cortisol to make sure I maintain a regular menstrual cycle (because in some twisted evolutionary joke it's more important that I be able to reproduce than it is that I function?!). So I have normal cortisol but symptoms of low cortisol, because it's being diverted from its intended jobs. I was lucky enough to find a functional medicine LL gynecologist, or I probably never would have learned about any of this. I mean really, who knew hormones could substitute for one another?

Vaginal atrophy felt like an excruciating burning sensation when my vulva was touched and especially when it was stretched by anything. It looked normal to me. Various topical creams did nothing. No yeast, no bumps, no STIs, no irritation.

This might not be what's going on with you, but perhaps an estrogen test would not be tough to get, just in case. People treat vaginal atrophy effectively with topical estrogen.

I hear you. Whatever it is, I hope you find some relief soon! I know you've been searching for answers for a long time.

Thanks so much pirouette, for now I have booked a private gynae appointment and will have my hormones tested. I would love to find someone like the one Saraeli has. I will start researching.

There’s so much to learn about the human body!! Just wish this wasn’t the reason I’m having to learn it!

My husband keeps telling me it must be fungal/yeast issue and that they only test for a few so we can’t eliminate that.

Hope i get time the bottom of it soon it’s awful and not to mention not great for my already struggling marriage!

Have you checked for HSV 1 and 2? I have HSV2 which causes horrible burning pain but my tests never came back positive until last year (the tests are very unreliable just like with Lyme). I would take L-Lysine and see if that helps you at all. I never had any sores just tiny little pimple like bumps but the nerve pain was horrific! Lemon balm cream helped a bit. Best of luck

Penguin77 said...
There is a name for this symptom: vulvodynia. I encourage you to Google a good forum or information page on this topic. There is no one opinion in the medicine what might cause it. I encourage you to explore following possibilities:
- hormones (it could be not only that you lack estrogen, but it could be that you have not enough testosteron in the tissue locally due to high shbg. )
- persistent virus infection without lesions
- sensitivity to oxalates
- yeast sensitivity
- mycoplasma infection (however this should not produce burning pain)
- issues with pudendus nerv or inflammation in the lower back, the nerv is effected and generates pain (especially if it is burning like pain)
- just another symptom of Lyme / Bartonella
I can ensure you that this GOES AWAY at certain point! You just don't know will you have it two weeks, two months or longer.
If everything is checked and you don't think that this is yeast or infection, you can try tricyclic antidepressants.
It is not an easy way to get read of this symptom, but as I wrote to you it will eventually get better.
Try antihistamines, also in combination with ibuprofen, low inflammatory diet, yeast diet etc. There are a lot of tools to cope and with time you will find what works for you!

Thank you for this info Penguin, I did suspect Vulvodynia however when I went to the sexual health clinic the Dr said it’s not that as if it was I would have been in intolerable pain when he put the speculum in. Is this true? I mean I felt it and it wasn’t pleasant but I wouldn’t call it intolerable.

Maybe it’s a bart/ thing? I have a gynae appt next week, it’s never ending with these appointments!

HeartsinPain said...
Have you checked for HSV 1 and 2? I have HSV2 which causes horrible burning pain but my tests never came back positive until last year (the tests are very unreliable just like with Lyme). I would take L-Lysine and see if that helps you at all. I never had any sores just tiny little pimple like bumps but the nerve pain was horrific! Lemon balm cream helped a bit. Best of luck

Is it possible to have this with no visible symptoms at all?

“ The drs just keep saying it can’t be atrophy as I have regular cycle blah blah blah. But as we more than anyone know... what do they know?!“

It’s easy to tell if it is - the Dr just has to look at it..
Or you can with a mirror

I didn’t think what he said sounded right, surely there are differing levels of pain, as with anything.

Wish I knew for sure what it was so I can start treating! What helped you with the Vulvodynia? Was it a burning sensation you were experiencing?

I have started l lyseine as I know I have hsv1 as I get cold sores.

Szabo246 said...
I didn’t think what he said sounded right, surely there are differing levels of pain, as with anything.
Wish I knew for sure what it was so I can start treating! What helped you with the Vulvodynia? Was it a burning sensation you were experiencing?
I have started l lyseine as I know I have hsv1 as I get cold sores.

In the first two years I was not really treating it as after a couple of months every local treatment possible made it only worse.
Then I was already better informed on condition and started experimenting with the diet - first low oxalate, then yeast free, then gluten free. Pain has leveled on a certain level, got a bit better. Then I finally tried a tricyclic antidepressant and this has helped probably 50 to 70 percent. This allowed me to restart life (started working, more socialising etc.). Then I stopped antidepressants and my pain moved to urethra but it was overall not totally bad. Final improvement came when I resumed sexual life. Even better improvement came when I contracted hsv 2 as after that only days of reactivating of the virus were painful (however this was a bit different pain). And all other time started being completly pain free as before all of this happened. I know it is a very strange story but also a very sad one. I think at the end it was either typical Lyme / Bartonella / mycoplasma symptom, or inflammation typical for this infections, or hsv that my immune system could not recognise and cope with.
Maybe you could also ask for a test for mycoplasma / ureaplasma from gynecologist. In case it is one of these infections. They can create low grade inflammation and burning ( but not nerve pain burning like herpes).
I have read on the forums that hsv 2 can sometimes create nerve burning symptoms without lesions. If it is like immune system trying to fight against it all the time, but cannot finish the work. But this is only a speculation.
In case it is herpes related low arginine diet might help.

Interesting, saraeli

Mine was definitely something you could see - maybe if you can’t see the atrophy - it’s higher up? Out of view?