Not cystitis, not thrush, Cytolytic Vaginosis?

[JunoSospita]

I have been to the doctor a lot over the last four years with symptoms that present like cystitis and thrush, however urine test comes up clear and thrush treatments do not work. I noticed a pattern of bad diet (starchy, sugary foods) and recurrent episodes of this - a healthy diet and plenty of water clears it up within a few days, though I need to keep this up or it comes back.

In addition I noticed that the symptoms always start around ovulation and finish as soon as my period starts and google has thrown up Cytolytic Vaginosis which matches 100% my symptoms. Treatment also fits what I had worked out for myself - healthy diet with very little sugar and plenty of water. Doctor shrugged and said it could be and it was worth considering but she didn't know enough about it.

Has anyone else experienced this? I'm just wondering how long I need to avoid cake and sugar for or whether (sob) I have to be healthy forever.

[SinisterBumFacedCat]

Marking place. Been suffering nearly 2 years now with no diagnosis and clear swabs, wondering if this could be the problem.

[Burnybits12]

Sound a lot like my symptoms except I took Lymecycline for my skin.

Has anyone tested your ph? Mine is showing too alkaline, rather than too acidic.

It really is a nightmare having symptoms down there!!

[KingaRoo]

I have vulvodynia and take medication which controls the nerve pain.

However my skin in that region is extremely sensitive and over the years I've had many GPs prescribe thrush medication, steroids etc which never helped and often made it worse. The consultant dermatologist/vulvologist who diagnosed me (after 7+ years of GPs shrugging their shoulders) recommended washing with Dermol 500 (never soap or shower gel or other intimate washes) and then putting a generous amount of Cetraben moisturiser on twice a day. This made a massive difference to my burning and itching and if I ever forget to use the Cetraben the itching and soreness comes back straight away.

I hope this might help some of you.

[Bkj3rd]

I see the post hasn’t been posted on in a couple months but hoping maybe someone will see my post.

Over the past two years I’ve had bv a couple times. My ob prescribed me a couple refills of the medication Metronidazole. However I hadn’t gotten it for months but I was taking a balance probiotic by azo so I think that maybe was working.

Anyways, two months back I went on vacation and once I got home i was discharging and felt a little icky so I assumed it was bv. I had a concert and a couple days of drinking occasions so I waited about two Weeks to start the metro in the meantime I used boric acid tablets two nights in a row to see it I maybe could make it go away or atleast help with symptoms. It burned bad the second night so I stopped. I finally started taking the bv medication and half way through I really wasn’t getting much better so I went to my ob she said if I did have bv I got rid of it but she found something in my utuerus possibly strep and gave me medication for that. Once I was done i didn’t feel any relief until I got my period I thought everything was fine. Then again after my period I started feeling the burning in the inside and when I pee plus a little itchy and white clumpy discharge. I went back to the ob but a different doctor and he said it looked like yeast so he prescribed me yeast medication. Yet again not working so I went back a second time didn’t work again went back a third time and he said all my tests have been coming back negative for yeast so he doesn’t know he’s never seen anything like it. He prescribed me metro gel and flucanazole for yeast and said this should reset everything. Which it didn’t. Once I started googling I found Cytolytic Vaginosis and went back to the ob and said this seems like it was it. She said she didn’t know anything about it so she was going to look it up and call me back later if that’s what it was. She called me back and said symptoms matched and I had too many Lactobacillius under the scope so she told me to wait 7 days until after my first day of my period and thEn douche 1 tsp if baking soda once every day for two weeks. So here I am two weeks later and it still isn’t gone. Symptoms are better because at this point it would be unbareable but I’m still not the same. I also realized that I was still taking
The azo probiotic for bv half way through I realized there was many Lactobacillus kinds in the medication so I stopped taking it a little more than half way through my treatment so I’m not sure if maybe that is why it didn’t work.

At this point I am very depressed and have been reading everyone’s responses on how they’ve had it for years and can’t get rid of it. And all the things they’ve tried. I’ve used pre seed the last two nights and really don’t see any difference. I’m losing hope and don’t know what else to do at this point. I am waiting for a call for an appointment with a specialist but if anyone has any tips on what I should do that would be great. I am only 23 years old and really want my sex life and happy life back. If anyone has any advice on how to get rid of this please comment. It’s sad most ob don’t know what this is and how to cure it!!!

[Jp9016]

Hi, I think I have the same thing and I also think I had this issue around 3 years ago when I was taking probiotics!!! The first time once my period came it cleared it and never came back.

However, I had a uti last week took antibiotics felt great had a small itch in my crouch and decided to use a pessary, and took a probiotic (only took
Capsules) next day I felt fine. Until it came to Monday I had the worst vulva itch/soreness!!! Like an idiot I then took the oral tablet for thrush with then I think made things worse! I’ve been off for a week from work my vulva is on fire, I tried pressed, made me bleed with pinky discharge. I have been drinking Bicarbonate soda in water and have applied it. I felt some temporary relief. But woke up with morning with raging pain and throbbing!!! I have been doctors 3 times this week, just the same old “ it’s thrush” the nhs are terrible when it comes to listening to their patience and forget that we know OUR bodies best.

I just ovulated on Wednesday and since then symptoms have got worse, I’m just hoping and praying that once my period arrives it will resolve itself. And not to myself NEVER to take probiotics again or double dose on anti fungal. Sending healing vibes xxxx

[Jp9016]

Sorry, I didn’t proof read what I wrote. Some terrible spelling/grammar mistakes x

[Bkj3rd]

Yes I will never take any probiotics again. I think that all the medication they prescribed me for yeast may also be why it’s so hard for me to get rid of. Two weeks before your period is always the worst then once you get it it’s a relief. I always hope I’ll just be normal when it’s ended but this always ends up coming back. I’ve read people having success with changing their diet no sugars fruits and red meats etc I’ve been trying this for two days all though I’ve been eating salads the dressing I’ve been using has a little sugar in it. I will go nuts because everything has sugar in it!!! Everyday is a constant struggle. I wake up extremely depressed hoping I will show some sign of relief that I may be getting rid of this thing. So far I’ve had no luck with baking soda douche and pre seed. This is bar far the worst thing I’ve ever went through. With my luck nothing will work :(

[Bkj3rd]

Wondering what food you ate and what food you didn’t eat?

[Jp9016]

Hi, I’ve been eating whatever I want but I have found that my symptoms get worse if I eat carbs!!
FYI I used a bicarbonate soda in a capsule and inserted it in my vag and it has eased the symptoms a little. Can I ask gave you had and blood or pinky discharge? I feel like my vulva has some blood on it I’m not sure if it’s just from how acidic my discharge must be.

[Bkj3rd]

No I have not seen any blood. Sorry I meant to reply to someone’s post that said they got rid of this through diet but I guess you can’t do that on here. However I did read you should try not eating carbs milk and sugars so I’m trying to do the diet but it’s hard at this point in pretty much starving because I really don’t know what to eat and don’t want to be doing this for no reason. I was wondering if I should try that as well. Did you make the capsule yourself what size capsule and how much baking soda did you put in it ? That could be a possibility I’ve also seen people say their discharge has melted a whole through their underwear. Have you went to the doctor and mentioned Cytolytic Vaginosis ?

[Jp9016]

No I didn’t mention it because The NHS only follow their protocol and won’t even consider it could be anything else!! Which is why they are great if your about to die but when they consider your problem “minor” even though your world is falling apart.. they are terrible!!

Today I have drinking nothing but lemon water!! And wow my symptoms have improved. The baking soda worked for a couple of hours but drink lemon water all day long and eating super clean has made it disappear. Also I have noticed since this has been going on my urine is super cloudy! Have you noticed this?

[Nakedman1]

I am so glad to have found this post! I am 22 weeks pregnant, and I started taking probiotics at 16 weeks because I was experiencing what I thought was the beginning of an infection. Initially, the probiotics helped, but fast forward to about 4 weeks later, and I started experiencing this burning upon peeing, and my urethra felt completely inflamed. I had 3 tests for UTIs, which all came back negative, and then I had a doctor who looked up there, and she said that it looked like yeast. Though, the swab came back negative. Her assessment was that it was yeast, and said the test had a high false negative rate and told me to take Monistat. The Monistat was awful, and gave me severe cramping (not okay when you’re pregnant), so I did Clotrimazole 7 (Canesten). I had side effects in response to that, too, and it wasn’t really eliminating the issue. I finally stumbled across CV, and read someone’s story about CV and probiotics. It sounded exactly what I was dealing with! I have been taking 50 billion on my probiotic, while also eating yogurt daily. Plus, I was doing so great on sugar intake, since it was just mine and my daughter’s birthdays. I took a baking soda bath (as suggested to increase vaginal PH), and for the first time in weeks, I felt normal!!! I have stopped eating all probiotics, milk products, yogurt, etc., and I am just hoping this takes care of my lingering symptoms. I still have some urgency when peeing, but it doesn’t burn/stab/give me bladder pain like it was. I am just SO shocked that this doesn’t seem to be an issue that doctor’s look for!

[RubyRob]

I'm 27 weeks pregnant and have been experiencing similar symptoms over the past few weeks. I also suffered with this a few years back and came to the conclusion after doing my own research that it was probably high acidity that was leading to my discomfort. I'm going to try the baking soda to see if that helps as it's making me miserable. I also think my diet during pregnancy hasn't been the best so may need to make some adjustments and see if that makes a difference. Its a shame there isn't much research/health expert advice on this condition as it literally has you thinking there is something terribly wrong.

[Hopingforhelp96]

Hi ladies, I posted in here a while back re my condition and getting my diagnosis for cv. Although this sounds totally random I know for certain that my symptoms always get worse in autumn and winter! It’s been this way for the last 3 years... I was wondering if anyone else has experienced this? Thank you x

[Ihatemyvagina]

Hi ladies!
I’m somewhat relieved I found this post knowing others are dealing with the same issue and that I’m not alone. I’m sorry everyone is going through this, praying for you all. I wish it wasn’t so taboo to talk about these issues we women face, so that there would be more info out there to help.
Mine started last November, everything has been off and on super irritated, weird burning and itching. I’ve been on everything probiotics, Monistat, boric acid, diflucan, terazole, Apple cider vinegar, yogurt, hydrogen peroxide tampon (don’t ever do it, worst thing ever) and nothing works!! I wish nothing more than to go back to my old days of not thinking about my vagina 24/7. I’m thinking maybe my vagina doesn’t actually hate me and this could be what I’m dealing with. Unfortunately I have health care through the va and getting appointments take 3 months. This past month has been the worst of it, burning when I pee and extremely uncomfortable after where I want to rip my pants off and lay with a fan blowing on it. I’m going to try the baking soda and keep my fingers crossed. I have a appointment on Halloween and if by some miracle my doctor figures it out, I’ll share/update you guys. We are amazingly strong for dealing with this on top of everyday life keep your heads up

[Clairehi]

Hi I just read your post. I have the exact same thing! I have been to the doctors numerous times and they are never able to figure out what was wrong. What works for me to take the discomfort away is apple cider vinegar baths. Have you figured out what it really is? And what’s causing it?

[Boocat44]

Hi ladies! I never posted on any sort of thread in my life but I KNOW the frustration of Cytolytic Vaginosis and i want to help if i can! While i don’t have an issue, my 16 year old daughter has for the past 5 months ( I believe brought on by a round of antibiotics) and it has uprooted our lives! After many misdiagnosis, I did my own research, studied medical journals, etc. (I’ve always been interested in microbiology and have studied it previously), and I came to the conclusion of Cytolytic Vaginosis on my own. We finally found a local gynecologist who is somewhat familiar with it, but by no means an expert. To make a long story short, let me cut to the chase and say if any of you are currently experiencing this and are on hormonal birth control, get off of it if you can! Switch to non hormonal if possible! While baking soda and dietary changes helped somewhat to get it under bearable control, stopping her birth control pill has at this point taken care of the situation. New studies ( though there is not much to go by) suggest the hormones in birth control increase glycol (sugar) production which the lactobacillus consume for growth, thus providing great “home” for them to proliferate. We are on month one of being birth control free and so far, the symptoms have not returned ( they Always returned every two weeks right before her period like clockwork, then disappeared for the two weeks after the start of her period). When on birth control you are getting a steady raised “diet” of hormones, constantly feeding the lactobacillus, rather than the natural ebb and flow of the hormonal cycle that is not on birth control. I hope this helps someone!

[Linds12]

Hi I just wondered how all of you have got on woth any successful treatments? I’ve just been diagnosed with this :( making me so miserable!! I’ve been eating a ‘live’ yoghurt every day for months and thinking it could have caused it maybe?? I’ve cut them out and doing the baking soda baths but it’s still there

[98Chess]

Omg I’m so glad I found this forum!
I’ve had this for five months straight and have been on every medication known to god (most of which has been diflucan and probiotics which has probably stopped me from 100% recovering)..
I think mine started from stress (having just moved countries). At the worst point I couldnt go to work for three weeks because I couldn’t walk the pain was so bad. Everything was dark red and swollen.
The only thing that has made me feel better is augmentin! My gynae had no idea what it was, so gave me everything, augmentin, fluconazole, nerve pain tablets, probiotics. I’m just realising now that I probably have CV, and taking the probiotics and fluconazole with the augmentin probably stopped the augmentin doing its job properly!
Unfortunately this has been consistent for so long now that my muscles are all swollen too :(. Going to the gp tomorrow and showing her a print out of CV. I’m hoping she can get on board with the diagnosis! It seems like such a hard thing to control because so much of it is about balance.
Can anyone recommend an augmentin treatment regime and if they took anything else at the same time?

[98Chess]

I’m also wondering what the dr had to test for?
I had a recent negative swab for thrush (again!), and it said gram positive bacilli with three +++ next to it. So I assume there’s a lot there?

[Linds12]

Your doctor has to do a wet mount test for the overgrowth of Lactobacillus. And definitely stop all probiotics I got this condition from eating a live yoghurt :( I we tried baking soda baths and stripping all sugars out my diet so I’m basically eating salads has anyone from the older comments got an update? Has it gone now? Any tips? I’m depressed with it

[Undi]

Hi, are you still drinking lemon water? Did it really help? I heard that lemon water is alkaline, not acidic, but still nervous that it might make my symptoms worse.

[Linds12]

I drank lemon water it didn’t make me any worse

[98Chess]

I have had the same issues for 6 months. Swollen and very red. Thrush and BV tests are negative. Tried antibiotics, augmentin helped take pain away but symptoms didn’t disappear.
I actually went to a dermatologist, who did a vulva biopsy on me yesterday to test for more uncommon conditions.
I have also started seeing a pelvic floor physio, who did an inspection, and said my muscles have tightened up from having constant pain the last 6 months (right pelvic floor muscles cause swelling!).

For anyone still struggling with these symptoms (redness, swelling and discharge) I recommend going to a women’s dermatologist and a pelvic floor physio.

It is the first time I haven’t walked out of the dr with a feeling that I’m being listened to, and tested for something that isn’t thrush or BV!!

[98Chess]

Lemon water hasn’t done too much I must admit!
I was given advantin cream by the dermatologist which has reduced the redness