I've also heard of cytolytic vaginosis, although many doctors don't believe in the diagnosis. I guess it depends on who you see ;-)
If you're experiencing this pain/burning in your vulva, you might want to do a search on vulvar vestibulitis. I'd also suggest seeing a pelvic pain specialist - they're tough to find, but definitely worth the effort :-)
Thanks Monkeyflower, I know I dont have vestibulitis because I dont have any pain to touch, and also I dont have painful intercourse...its more a sensation, rather than something that hurts to touch.
I went to another gyno and he seemed confused, as did all the others! He said the only thing he can see is a cervical etropion (previously caused cervical erosion), probably caused by long term pill use, and that we should treat that as it could be the cause. But I'm not very confident about this - I've heard that a cervical etropion is usually left alone because it only causes excess normal discharge and no discomfort. Has anyone got any comments about this?
I've also been reading about vulvodynia, and wonder if this is what I have - but vulvodynia seems to cause pain during intercourse, which I don't have. Just a burning, stinging sensation...mostly just uncomfortable, but can get quite painful as the day goes on.
Anyone got any ideas, experience with these symptoms? I would be so grateful to hear from people, I'm feeling quite worried about it all!
You might try looking into a low oxalate diet. I had problems with pain/itching labia, and keeping my oxalate intake on the lower side helped me.
I have a similar condition that has taken me YEARS to properly diagnose-- on my own (doctors were clueless)! It is most likely LB or CV and requires a 7 day treatment with Augmentin 500 mg or bicarbonate sitz baths. Hopefully this site will clarify things for you.
Thanks for the site dreamspirit, its really helpful. I'm going to see a different gyno soon as my other one didnt believe that these conditions exist, lets hope I get somewhere with my new one! Can you tell me about your symptoms? The thing I'm worried about is that the site says that LB and CV are always cyclic - the symptoms are worse just before your period and then they disappear during your period. Do you know if that is always the case? Because my symptoms don't deem to be related to my cycle - they certainly don't disappear with my period. So could it still be LB or CV? I just want these horrible symptoms to go away!!
Sunflower, I current am experiencing the same symptoms as you. Did you ever find out what was wrong or treatment for this horribly irritating condition???
Im currently experiencing the same symptoms as well! does anybody know what could cause this?
I used monistat 1 to get rid of a yeast infection 2 months ago.... and the yeast is now gone apparentally... but i have this horrible burning almost itchy feelling in the whole area. It doesn't hurt to have sex or to touch... its just a sensation as you said that gets worse as the day goes on!!
Same here. I can't sleep at night, because I'm having so much discomfort. Like blinkchic38 said, it gets worse as the day goes on. However, I believe I have generalized vulvodynia. There are two main types of vulvodynia:
Generalized vulvodynia is pain in different areas of the vulva at different times. Vulvar pain may be constant or occur every once in a while. Touch or pressure may or may not prompt it. But this may make the pain worse.
Vulvar vestibulitis syndrome is pain in the vestibule. This is the entrance to the vagina. Often a burning sensation, this type of vulvar pain comes on only after touch or pressure, such as during intercourse.
There is a lot information here: http://women.webmd.com/vulvodynia
So perhaps, Sunflower 22, you have generalized vulvodynia, which is not necessarily prompted by touch or pressure
Um, question... I was on website that discussed Lactobacillosis, and it said that Vulvodynia could be a symptom of Lactobacillosis, Cytolytic vaginosis, Candidal vaginitis, Bacterial vaginosis or vaginal dysbacteriosis.
Does anyone know if Vulvodynia is an ailment all by itself, or if its just a symptom of something else?
Moreover, I do find that my discomfort often starts up and worsens before my period starts. However, this month the pain was not alleviated during my period, and only got worse after it ended.
I hope we can all figure out what's going on, and are able do something about it, cause I need to sleep at night instead of having not other thought in my head except the brining sensation.
ive also been suffering with pain..stinging..burning sensation..my gp said there is a bit of inflamation there but she couldnt see anything untoward...i have had a few gynea problems recently (i had a ring fitted for a cystecele and i had a severe allergic reaction to the ring and ended up in A/E to have it removed) and i put it down to the fact i havent healed properly but it was so uncomfortable i couldnt even wear knickers...so i saw my gp she prescribed some steriod cream to use and i have to go back to see her in 2weeks...i have used the cream since friday (3dys) and there is a slight difference she also said it may be lichen sclerosus
hope this info helps...
I too have been suffering from the same exact symptoms as Sunflower22 since Nov. 2008. It is now May 2009. I too had diagnosed myself with vulvodynia but was told by 3 doctors that I didn't have it because there was no pain to touch. I was however diagnosed with vulvar dysplasia after a skin biopsy. It is the same as cervical dysplasia except its in the vulvar area. The Doctor feels this may have been the cause of the vulvar burning. I had the adnormal cells removed 2 days ago and I haven't felt any burning so far as of yet and I'm praying that this is the end of that, although I do feel irritation at vaginal entry site. I will update with more as I proceed with the healing process. But Lady's do be aware of this disease it is rare and really shocked me because I only thought dysplasia was in the cervix. It is however a strain of HPV. I am married and have been with my husband for 13yrs so I haven't been living a promiscuious life style. I guess its just one of those things that happens.
It is now 2 weeks after my surgerty and I'm still having the burning so obviously vulvar dysplasia wasn't the problem..So if anyone has found relief from this painful condition please share it.
I have had this burning sensation for months, and it is the most irritating thing. I do not know what it is. I had a bladder infection in march and it cleared up for a little bit then it came back also with a burning sensation. Could it be the birth control im taking? or I think i could be allergic to certain foods. It just makes me upset because I want this to go away!
I have had burning,stinging,itching off and on since I was 20. I am now 43. Along with these sypmtoms come a strong vaginal odor,and alot of watery discharge, either clear or milky. Sometimes it is thicker and whiter. I also, get cramping and sharp pains if not treated with antibiotics and yeast meds.I know this is weird, but the taste of my discharge becomes bitter. After treatment of oral clindamycin and diflucan all my symptoms are relieved, sometimes for along time. I had read an article many yrs ago about chronic BV . I was first diagnosed with BV when I was 20, but I had no symptoms. Most of the time, doctors say they don't see any infection, but treat me any ways for BV because it does relieve my symptoms. I have been on on metrogel, 2 times a week,vaginally. I have not be reliable on the 2 times a week and have come down with my symptoms 2 times. Now the doctor has put me on diflucan, 1, every week for 12 weeks. I'm curious to see if this works. I have had a total hyestrectomy a few yrs ago, so its not related to my cycles. I cannot take hormones, but this really doesn't seem to make a difference to my symptoms. I am a nurse, so I have tested out every possible allergic cause I can think of. I am glad to find other women who suffer from the same symptoms. I hope we can figure it out. As for my history, I have had HPV ,in my young twenties I had cervical dysplasia and in my early thirties I had to have some warts removed. I test negative for HPV now. I also have intersticial cystitis and spina bifida occulta. I test negative for STD's and have not been sexually active for a few yrs. If the new treatment doesn't work, I am going to ask for a biopsy.
Just found this website i also have this burning sensation because i have vulvar dysplasia and have already had 3 biopsies for it. My last one showed me as having VIN2 which my oncologist/gyno wanted me to use ALDARA Cream for 3 months, I tried it but i couldnt function with all the side effects, So after much reading as much as i could find on HPV and VIN i started taking the supplement DIM, thought it was helping some but now I have the burning back again and am afraid I will have to go in and have another biopsy again. I hate this. How come so many of us never heard of this before. I have been with my husband for over 20 yrs now so Like others on here i never slept around either.
Anyone else using or heard of this supplement called DIM.
This is a very interesting subject. Thank you for posting it Sunflower.
I am wondering if it has anything to do with the pap tests we go in for (just a thought).
The reason I say this is because I have suffered that burning sensation on and off for years (ever since the day I received my very first pap smear). It seems worse a week before my period and stops when my period begins. I've had gyno check up and tests performed during it and found to have no std's, no yeast infections, no vaginal / bacterial infections. Skin in vulva / vagina looks very good, clean and healthy. Discharge is normal, natural and healthy. Doctors cannot see any problems nor abnormalities. Hormones all within normal range.
But again, the very first time I felt this burning sensation was at the very moment the doctor did my very first pap smear and I continued to burn for days afterward. This is many years later now and I still encounter that burning problem on and off.
So, this is just a thought. I'm wondering if its possible pap smears can sometimes cause a permanant irritaion problem in the area where they are removing cells to have checked?
I am feeling the same as everyone else........getting the run around by drs....uruologist....god help us all....this burning keeps me at wits end and puts me in bad moods....I can't be me and feel free....this seems to take over my life sometimes....I am going to a woman specialist on Aug. 24 at a womans hospital in Pittsburgh.......god help me.....I will let all know.....wish us all luck :-)
I am so happy to not be alone. Five weeks ago I started with this burning/raw sensation. Went to my gyn and he did the culture to check for bacteria (nothing). Went back, he did a biopsy to check for dysplasia and put me on Topicort cream. Could not handle the cream at all, made things 100% worse. Biopsy results all came back benign, so he has me using A&D ointment. Seems to help with the burning factor as long as there isn't much rubbing in the area. Going back on Monday for full test results. Out of all the different things it could be, does anyone know if these uncomfortable feelings ever go away? Is it always going to be a matter of just treating the symptoms but no real "cure"? I'm going a little crazy as all my attention and focus is on my crotch!
I have the same symptoms as you all -- intense burning just before my period and continues until a few days after my period ends. All tests come back negative. This has been going on for YEARS and my OB/GYN got annoyed with me so I quit him. I had 2 other docs say I had IC (interstichal cystits) but when they looked at the inside of my bladder it was perfectly healthy. I have a med. chest FULL of creams that don't work. How can this be happening to so many women and the docs be so clueless and quick to give up?
i last posted on this thread in may....i have had a few years of this suffering and no end of examinations for the doctors to find nothing wrong...after a lot of investigations on the net by myself i found the info i needed and went to my doctor to ask if i have VAGINAL ATROPHY and she said yes...at last a diagnosis..she wanted me to go and have an investigation at the hospital and i said no way as ive been poked and prodded for months and i have had enough...she would not prescribe any hormonalproducts as she said there is a high risk of cancer so i asked her for some REPLENS...she gave me a prescription amd said it wont do any good you...well i have been using repelns now for a few months i use it every other day and the difference is unbelievable...VAGINAL ATROPHY is a normal thing to happen to menopausel women and it can happen to any woman..why the hell these doctors dont know this is beyond me..in the uk REPLENS can be prescribed by the doctor which helps if you get free prescriptions or it can be bought over the counter...
Vaginal Atrophy: vaginal dryness, soreness and painful sex
Without the production of oestrogen by the ovaries, the skin and support tissues of the vulva ("lips") and vagina become thin and less elastic. This is an inevitable consequence of the menopause and the majority of women will experience some form of symptoms. Vaginal dryness is commonly the first reported symptom. This is due to a reduction in the production of mucus by the glands of the vagina.
Thinning of the vaginal and vulval skin can follow, which in turn makes them more easily damaged. This damage can occur more so during sex, especially if lubrication is also poor and even quite gentle friction can cause pain and discomfort. If the vulval lips are thin and dry, they can often rub on underwear causing soreness. Many women also dislike the outward changes in the appearance of the vulva (lips) as they lose their plumpness. It is not unusual that for many women, sex becomes difficult, painful, and of course unwelcome!
Alteration in the normal vaginal discharge is something noticed by most women after the menopause and also rarely discussed. Without oestrogen the pH (acidity) of the vaginal secretions changes and the normal discharge becomes more alkaline (like caustic soda!). This pH affects the balance of the micro-organisms in the natural secretions which in turn suppresses the normal levels of "good" bacteria (lactobacillus). The discharge changes in nature, becoming watery, discoloured and slightly smelly. This often leads to vaginal burning and vulval irritation.
Some seek advice from specialist clinics but most just worry and don't ask for help. Because of this relationships can sadly suffer and this is all completely unnecessary.
Management of vaginal atrophy
Some options that may help include:
Avoidance of soaps to wash with (perhaps replacing with aqueous cream, available from most pharmacies).
Treatment of underlying skin problems with topical creams , often after guidance by a specialist and perhaps skin-biopsy.
Treatment of altered vaginal flora with appropriate antibiotics (often after an examination). This is short-term and may be administered by mouth or sometimes directly into the vagina. This treatment may need to be repeated.
Local oestrogen therapy. It is now well recognised that low doses of oestrogen therapy, delivered locally in the vagina, can be effective (see box below)
These treatments are effective and acceptable and unlike the conventional form of HRT, the effects are local therefore the risk of systemic side effects are reduced.
Local oestrogen therapy
Vaginal dryness, soreness, burning, vulval irritation and chafing can all respond well to local oestrogen treatments. This can also help greatly with discomfort, pain during sex, correcting the vaginal pH and stopping the overgrowth of abnormal vaginal flora.
Local low dose treatment with oestrogen has been found to have significant effect on the postmenopausal urogenital symptoms related to atrophy.5
Oestrogen delivered locally can be in the form of:
Vaginal tablets or pessary: initially taken daily, then as advised
Creams: taken daily initially, then as advised
Vaginal silica ring: inserted for a 3-month period
Pelvic floor changes and prolapse
Many postmenopausal women become aware of ballooning or bulging of the walls inside the vagina, or even of a feeling of descent of the neck of the womb. Others simply experience a generalised pelvic dragging sensation. About half of post-menopausal women are found to have weakening of the front wall of the vagina (anterior vaginal wall prolapse); about a quarter have similar problems with the back (posterior) wall, and one-fifth with the highest part of the vagina.4
The muscles and ligaments of the pelvic floor (which should normally support the womb, bladder and other organs like a trampoline) are also oestrogen-sensitive, and changes in collagen, due to oestrogen deficiency, have a profound effect on the support mechanisms of the pelvic floor.
The protective covering of the clitoris is often affected by the changes in the collagen of the vulval skin, and the clitoris itself can become sore and traumatised. These skin changes are often so profound that genuine skin conditions emerge ("dermatoses"), and may need separate treatment.
Lower urinary tract symptoms
As they get older many women may find they have problems with their urinary tract ("water-works").
Some suffer from genuine stress incontinence, which is leaking of urine on coughing, sneezing or jumping, for instance. There is still a lot of debate about whether this is direct result of the loss of oestrogen after the menopause.
Urge incontinence is even less commonly referred, some postmenopausal women have difficulty "holding on" once they sense that they need to empty their bladder. They may also leak and start to pass urine before they can get to the toilet.
Other associated symptoms of the overactive bladder include frequency (recurrent need to pass urine) and nocturia (need to pass urine at night leading to recurrent wakening). Some women also feel they need to pass urine, having only just done so. All these may be connected to over activity of the muscle surrounding the bladder.
Recurrent urinary tract infections (UTIs)
This is another form of "waterworks" problem that affects women of all ages, but increases with age with many elderly women being particularly troubled.
It sounds to me like quite a few of you may have Cytolytic Vaginosis which is caused by too much lactobacilli in the vagina. Especially those of you who have increased symptoms before your period which are temporarily relieved afterwards.
A good article about it here:
The good news is that it can be treated easily with baking soda sitz baths and laying off of tampons for a bit. It can also be diagnosed with a wet prep by your doctor but I would recommend treating it naturally by yourself first to see if it cures it. And if you are taking lactobacilli acidopholis and/or eating probiotic yogurt, stop now.
Hope this helps.
Ive been experiencing the same syptoms for 3 weeks, its so sore to wee. I dread going to the toilet!
oooooooooooh what to do. Im going to the dr on Monday, she will give me thrush treatment like she did before. Its a pain in the arse.
Good luck babe -
i just wanna get fixed! xxx
hello everyone, I have had vuval burning for 4 1/2 years so i know what its like. Here in th uk its hard to find a doctor that unserstands, Some days its hard to carry on as you feel so uncomfortable. Its not really something you can really discuss
My name is Rosita Perez , I’m a Chilean woman and one of Dr. Ricardo Espinoza’s patient, from Clínica Las Condes. I am 33 years old. I am contacting you because I want to know your experience about this following item and if you could give me some recommendations on this respect.
The clinical case is about myself , I am a medical doctor too.
I’m a healthy woman, without pathologies. With history since 8 years ago, characterized by augmentation of cyclic white vaginal discharge, associated to pruritus, burning, dyspareunia, vulvar erythema and vulvovaginal pain. Since the onset of symptoms and the first consult, I was treated at any times by recurrent candidiasis vulvovaginal (diagnosticated basicly by the clinics findings), without confirmation with laboratory exams or cultures. Through the years, I have visited three or four gynecologists, and all of them gave me the same diagnosis and similar treatments, even with locals or systemic antimycotics or in an association with antibiotics, for a short time. Also, I was chronic user of acidophilus supplements which contains lactobacilli, to increase my vaginal flora after this multiple treatments.
I’ve been a patient at Clínica las Condes for a year. In this center, after many exams, including PCR and common and fungal cultures, with results always negative I was diagnosed with an excess of lactobacilli (lactobacilocis) or cytolytic vaginosis, according to clinical and microbiological findings, without fungal growth, which may be responsable for all my symptoms described previously, due to a vaginal hyperacidity and cellular lysis. I have also a vaginal biopsy, for several vaginal zones, which is normal. I was treated with amoxicillin 500 mg twice a day, for seven days, with a good response. After treatment, I had recurrence of symptoms, almost immediately. Also, I have been with daily sodium bicarbonate (baking soda) vaginal douches (descript by the literature), without a good response.
I need help!!!!!!!!!!!