Lyme disease burning vagina / Vulvodynia

Hello,

I have recently been diagnosed with Lyme disease after a trip in August. My first symptom was horrible burning in my vagina. I have tried everything from hormone creams, thrush medication and amitriptyline drugs nothing is working.

I haven't yet started my treatment for Lyme as I am waiting to see a Lyme literate doctor. Has anyone else has this problem with Lyme and is there anything I can do to make it better?

Thank you for any help given.

Hi Nicc,

Welcome. Sorry you have Lyme but you will be glad to have found us here. It is a very supportive group. If you haven't checked out the New to Lyme thread at the top of the page give it a look. Lots of great information that you will need going forward,especially about detoxing.

I have suffered similar issues for many years, it probably started with my Lyme infection 10+ years ago. I assume you've been checked for infections? If this is neuropathy pain you may want to ask about Gabepentin, a drug that helps with neuropathy pain. Feel free to email me off list if you like.

LL

Hello newcomer,

the pain that you feel can be due to a local infection(with no rel. to lyme) or neuropatic pain from lyme, as anywhere else.

the best way to check out for a local infection is go to your ob-gyn and have done a normal swab, a chl. trachomatis test and culture.Your LLMD can check for mycoplasma hominis and ureaplasma(from blood, serology-Ig G and Ig M).

What the ladies told you before:gabapentin, Lyrica or Amiltriptiline help with neuropatic pain.I did not have that but, I had my perineum vibrating in a painful way as having a cell phone there, it was awful.That went away, thank God.Also treatment with time and detox make symptoms go away.

All the best to you.

Hi, Onlybygrace!
Welcome to our community! I'm so glad you found us!

If you haven't ​yet​, it would be helpful for you to start with reading through the thread at the top of the forum titled,"New to Lyme?...Start here!!", as it is packed full of important information, symptom lists, helpful links and pdf's, how to detox when one has these infections, information on probiotics and much more.

​ And, here's another good place to find helpful detoxing routines: ​http://www.tiredoflyme.com/detox-methods.html​​

​ Does your doctor use ILADS treatment guidelines? If not, you may need to seek out another doctor. If that's the case, let us know, we may be of help in finding one near you.

I can sooo understand the weariness of talking about your vagina to just about everyone! I was having serious issues at a very early age, and no one wanted to do anything about it - and so I had to keep talking to different doctors! One thing it did for me was that I no longer care what I talk about with who! LOL!

Interstitial Cystitis can be from Bartonella as well. Lyme disease rarely is the only thing passed during being infected. So do be sure that your doctor evaluates you for all the tick-borne infections, as well as viruses.

Let us know how we can be of help to you!

Onlybygrace I love your description of it as a twisted game.

Best analogy I've heard yet! Probably one of these days you'll be able to look back like I did this morning, reviewing years of your medical records and see all of the crumbs of Lyme symptoms you scattered on your path to getting the right answer, that no one picked up on before.

As for that "phantom" pain, mine was labeled as having "Somatoform Pain Disorder by a clinical Psychologist on April 16, 1996 after 12 years of trying to get answers and relief.

ETA: Vaginal or pelvic pain wasn't one of my complaints, I'm just joining the club of being told everything is imaginary, and so I am sharing my empathy with you on the pain and frustrations.

I have burning on my lady bits as well. I have full body small fiber neuropathy. Hang in there.

You might need to be titrated up on a decent amount of nerve medication. If this is indeed neuropathy, then it will take some time to find the right combo or amount of nerve meds to find relieve....and even then, you probably are not going to get complete relief.

Hopefully Lyme treatment addresses this symptom.

Welcome! I haven't had this issue, but I think pelvic pain is a pretty common symptoms. I know testicular pain is common in men. Does it feel like a yeast infection or more of a sharp pain?

OK so like I do know the difference between a bladder and a vagina. 😊. Thought I would just make that known and point out possible problems in the vicinity

LOL, Purrrsiankitty!! It can be very confusing trying to figure out WHICH internal organ is really responsible for the pain!

Onlybygrace, I'm so glad that you could verify that your doc follows ILADS guidelines, as they aren't miracle workers, but they are the best we've got.

Hi there girls!

Sorry for my english - as it isn't my native language.

I'm not diagnosed with Lyme, I'm struggling between many doctors ( and after another treatment I'm gonna wait 6 weeks and go to get C6Lyme and LTT test to another city ).

I had a weird, very short time when I have been feeling ill without illines. I had stomach problems, fatigue, temperature fluctuations. Then I was diagnosed with depression and I went for 3 month treatment. Then I was ok for some time.

Then I was told I have a yest infection in vagina. I took test - I had not but the doctor said to take medicine anyway. I was given some weird globs for infection and small Cervical ectropion - but she was not being sure if I have it, or not.

Then I was treated for yest infection one after another - for my burning feeling ( the test showed I have non and I had no symptoms like itching or any ). Then my flora, destroyed by it coused a REAL Staphylococcus infection, but the easy one so it was cured in one week ( I had Toxicological liver poisoning by an antibiotic - thank you antibiotics :P ). Then my tests showed that I'm oh so clean :D After that the burning sensation stayed with me for like forever.

In mean time the doctors were searching what's going with me 'cos out of nowhere I developed stomach problems, fatigue, temperature fluctuations, I had horrible joints paint, my muscles were at pain, I felt so weak - it was hard to stay on legs and slept almost all day each day. It was BEFORE the antibiotic I took by mouth ( sorry, english - I try my best :D ). All 3 kind of globs I took into my vagina, all for yest infections. So My bad feeling wasn't connected to me treating the liver badly :P

After that the burning sensation stayed with me for like forever. The burning sensation is similar to putting a finger into wound. It is not infectional feeling for me. The infection pain is different for me. It's close to place at the height of the ***oris and coil, and around the entrance to the vagina. It emanates in way that it's it's hard to say outside or inside. The most burning I feel when I'm sitting, I go to sleep in cradle like position. Knees up, and I hold them close to my body. Also I have red markings in the area that are getting worst - the skin is similar to papyrus, but it does not flake - just hurt. I live in constant pain. Each day by day. Allergies excluded. All the doctors say they dont know. Sex is impossible, the pain is horrible. Slightly enlarged lymph nodes down there as doctor said and they hurt a little bit. In their area I would say.

I was cheked many times for: fungus, bacteria and viruses.

I tested for : HPV, chlamydia trachomatis, HSV 1 and 2, Mycoplasma, Ureoplasma, Trichomatis vaginalis, mycoplasma hominis, ureaplasma urealyticum, ureaplasma parvum, mycoplasma genitalium, Neisseria gonorrhoeae.

I got so many treatments for things I don't have that actually I developed a new infection, this time real - enterroccocus fecalis. Microbiologist took test and said I have almost non Lactobacillus, very high leukocytes, and high enteroccocus. And doctors says they think the test is fake, and done wrong. And I have nothing. But leucocytes are high, and colposkopy shows real tissue inflammation. They say they are doctors, and the woman who is diagnostician is not :P

Right now, after another part of time when I only had vaginal pain ( right now I have it all the time, every day ) I have like weird sensations to my face. Sometimes it hurt weirdly in places. And I never had problems with headache - now I have mild headaches, my eye sometimes hurts...so weird O_O

I will take 5 days of antibiotics, do microbiology test, and I don't care if it helps or not. I'm not taking anything until the Lyme test.

I took KKI and West Blot ( after another antibiotic treatment ) between treatments and I got nothing on West Blok but my KKI test showed I have border reasult. The doctor that treats Lyme said that based on this he can't say I have Lyme, but he cannot say I don't have it either. There is something on KKI but not much. But enough to say he can't say cleary if I have it or not.

I met a girl, that has similar symptoms - she was treated for vulvodynia ( another hard issiue in medicine. When you need real neurological help and physiotheraphy - and they want to send you to psychiatris :D ). After 3 years and cosmic amount of money - she found out she has Lyme. No test showed it. She made a test in laborathory that has the most sensitive equipment in our country - as we have no equipment to diagnose Lyme here. The test are send to another countries to be checked :P

She said she was told she is crazy, it's her imagination - She said they wanted to take her for closed treatment in a psychiatric hospita for 3 times, as they wouldn't belive her pain and said her vaginal visual skin weird papyrus like changes were no-one-knows-what but probably made by her head :D

Well, it was Lyme.

Not her imagination and feelings.

Oh, and she developed coli infection that was cured while she got Lyme treatment.

I was told that my vaginal skin changes, and the burning are maybe coused by fear of intercourse ( I do love sex then no ) or maybe I fear I will end up pregnant ( I have endometriosis - If I had a baby I would be happy ). Oh! And remember girls - whatever you have will be magicaly cured after you have a baby. I would love to but I have no possibilieties right now as baby comes after sex XD I know 38 years old woman with endometriosis that has its very advanced level. So she ends up in hospital for laparoscopies and open operations very often ( at least once a year ) - and she still hear it from doctors.

So right now I have to check if I have lyme to start treatment for vulvodynia ( if I have no Lyme ).

You see, the problem is the conviction that if something is wrong with woman - it cames from her head. It's probably the remnant of Uncle Freud :P The sex id painfull? What endometriosis, what vulvodynia, dysperunia, vulvar dermatosis or other logical explenation? NO. You were molested as a child or you fear sex with your man. You see, if it was about your penis - oh no the lovely penis - you would have recived more belive on your symptoms :D

Lovely, really.

Another thing - I was biten when I was 5 years old ( I'm 25 ).

I heard that you can get Lyme from sex, but the opinions are confusing - some say yes, some say no.
I had a relationship with a gut that was struggling with diagnosis. He didn't say much, once he said something about joints and muscles pains - and we were laughing it was his age :D Relationship ended not long after.

I'm so confused right now. I want to go to another city to see vulvar dermatosis specialist ( we don't have many, there is he, his pal, and I didn't hear of others that take care of weird cases ).

Also go to another city to take Lyme test.

Also I need to wait so long from antibiotic treatment - and I'm so sceared It might be worst

I was suggested I might wash the wrong way. You know, 25 doesn't know you should wipe yourself from vulva to anus, not from anus to vulva hahaha :D Great diagnosis, great. Worth the money :D

To see there are gilrs like my, with freakin' weird vulva problems makes me actually hapy - sad as they had so much of horrible time with no help but happy that I might not be crazy as **** and that there is a chance of something.

Love you girls :*

Post Edited (Kociamama) : 7/14/2018 12:45:57 PM (GMT-6)

Hi Kociamama

Sorry for all you’ve been through this far.

I’m glad you are getting tested for Lyme. Is that the Elispot at Armin Lab?

I wouldn’t be surprised if your symptoms are from Lyme and coinfections..there seems to be no end to what it can do.

Do you have the test results? You could post what they are on here.
I’m wondering if you had any positive bands on the WB

Can you get tested with the Armin Lab test? I know that is a good lab for testing lyme and confections.

(German lab)

No, you don't need to travel...they send you the test kit.

Kociamama said...

Girlie said...
Can you get tested with the Armin Lab test? I know that is a good lab for testing lyme and confections.

(German lab)

No, you don't need to travel...they send you the test kit.

How do I send it back? There will be no problem for Laboratory to give my my blood for packeging?

I will tell you the truth - I'm so scared that my infection will get worse in 6 weeks, but I can't take antibiotics for it to get tested for Lyme so

I would give them a call. I'm in Canada, and many of the Dr.'s here use Armin Lab.
Will your Dr. sign for the lab work?