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Not cystitis, not thrush, Cytolytic Vaginosis?

(55 Posts)
JunoSospita Thu 14-Jun-12 08:19:10

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.

OP’s posts: |
shitmagnet Thu 14-Jun-12 12:28:03

Message withdrawn at poster's request.

JunoSospita Thu 14-Jun-12 13:10:45

Glad I could help someone, I wish it was better known. My doctor looked at the notes and printouts I had taken blush and agreed with me that it was most likely the cause, but admitted she hadn't heard of it. I think she was just relieved I had some relief as none of her treatments had worked.

I've had a little success with baking soda (drinking and bathing and applying as a runny paste) but I got worried about it encouraging thrush. I found anti-inflammatories didn't touch it and often made it worse.

What works for me is:

Diet
Water (at least four pints spread out over the day, if not more)
No pantyliners, cotton pants
No sex until I feel much better
Vaseline as a barrier
No soap on the undercarriage, just water.
Cold water flannel compresses

If I'm really strict I can clear it up in two days but there is a large birthday cake in the kitchen I am desperate to have a slice of. Pure torment!

OP’s posts: |
shitmagnet Fri 15-Jun-12 11:00:06

Message withdrawn at poster's request.

JunoSospita Fri 15-Jun-12 12:08:44

Interesting about the gluten, hadn't considered that. Everything I have read says reduce dietary sugar (and starches convert to sugar don't they, so I cut out all processed bread etc and stick to simple grains) but my mum is a coeliac so I'm wondering if I am just a bit more sensitive. I think it can also be caused by hormonal things- my first bout was when I was pregnant with my son and its got worse since I miscarried last year. Also it getting worse with ovulation (though if I am particularly run down it will start earlier in the month. The fact that it finishes with a period makes it 'nicer' (hah!) than thrush/cystitus though as it gives a breathing space to get healthy and try to avoid the next bout.

When its at its worst I find it hard to sit down and difficult to walk far because of the bladder discomfort. At the beginning it would last weeks whilst doctors tried to work out whats wrong and as I said I can get it down to two days (agony on Tuesday, very slight bladder discomfort today and no pain anywhere else). When its particularly painful when I look there are bright red patches on the skin around my vagina (sorry tmi) which don't repond to topical creams (sudocrem in particular is like barbed wire on it). I also find it very painful to hold wee in my bladder, it feels full all the time and its painful to wee, with stabbing pains afterwards. I don't think everyone gets those symptoms though.

OP’s posts: |
Aliceinthelookingglass Fri 15-Jun-12 21:34:10

I haven't heard of the condition you mention.

My first thoughts were it might be a type of cyclic vulvodynia- pain, rawness, burning- often due to hyper sensitivity to thrush which is mild and undetectable in tests at times. Caused by change in acid balance in vagina when progesterone is in the body- 2nd half of cycle.

The other culprit is mild IC- interstital cystitis- which is a bugger and I've had it for years. For many people it is worse in 2nd half of cycle- again due to hormones.

you might like to see www.cobfoundation.org- check that as it might just be "cob".org.

Aliceinthelookingglass Fri 15-Jun-12 21:35:43

p.s- try treating yourself with a thrush remedy- especially the oral tablets- and see if they help.

JunoSospita Fri 15-Jun-12 23:12:18

Hi Alice, thanks for commenting.

Over the last four years I have tried every over the counter thrush remedy, sometimes several over the course of a flare up. In addition my doctor has given me a variety of additional treatments including several anti-fungal meds and creams.None of these have worked. Urine tests have always come back clear.

I mentioned IC and she said that because the vulval pain occured everytime and was the main symptom with the bladder pain coming slightly later, that it was likely the vulval and vaginal inflammation was the cause of the bladder discomfort, which is why she thought it was thrush etc first. I have also been swabbed for BV which came back as another 'no'.

I've just seen that BV has similar symptoms and is caused by an undergrowth of lactobacilli. I'm wondering if CV as an overgrowth of lactobacilli could also be picked up on a swab. I don't think I can face going back to the doctors yet though.

OP’s posts: |
JunoSospita Fri 15-Jun-12 23:12:50

*urine tests and all swabs taken at various points in my cycle have come back clear.

OP’s posts: |
Aliceinthelookingglass Sat 16-Jun-12 07:02:08

All I can add is that I have something very similar. My symptoms include the same vulval burning, redness that looks like tiny red pimples- a bit like "spongy" tissue, urgency when weeing and pain after weeing.

I've found some relief from this by treating it as thrush, and also using oestrogen cream which soothes and toughens up the tissues.

It comes and goes- and like you- seems linked to diet and hormones. I am mainly wheat and dairy free as these used to affect my eczema. If I eat more than a small amount of these, then my syptoms whatever they are seeem to flare up. Sugar has the same effect.

In my case, I've always assumed it was thrush- over many years I have been diagnosed with this a few times when I didn't know I had it! It's as if a low level of thrush exists - almost the opposite of what you are finding- all the time, then something makes it worse , but with no real discharge.

Whatever it is, the pain and rawness of urine makes the skin burn and sting for up to 30 minutes.

Happy to PM if you want to discuss further and avoid TMI on forum .

PoppyWearer Sat 16-Jun-12 07:08:25

Thank you for this thread. I'm experiencing some soreness at the moment which the thrush creams seem to help a little, but not clear up. I've also got something dietary going on, Coeliac or IBS, still trying to work it out. So maybe this is all connected. Interesting!

ouchmyfanjo Sat 16-Jun-12 07:19:57

i am on my phone so will be brief but yous symptoms match mine exactly.
I have had problems since my son was born 2 years ago.my dr put me on the oral thrush tablet once a week for 6months.it helps but does not get rid of it completely.
Mine too is at its worst just before my period.some days just wearing knickers is very uncomfortable.
Cutting out sugar and bread seems to help (though i miss both!) and also using a mooncup.
When i am at my computer i will look at the links.sorry i can't offer help, just sympathy.it is horrible.

JunoSospita Sat 16-Jun-12 09:44:28

My inflammation doesn't look like red pimpliness, its just bright red patches that sometimes get swollen. The pain after weeing can go on for several hours. (I'm a regular poster but a name changer so not too worried about tmi-just need to make sure I change before posting elsewhere grin)

It seems that there are lots of similar things that present with similar symptoms, understandable as there are lots of bacteria/fungus in that area and any imbalance can cause a problem. It also seems that not much research has been done on these; over four years and several doctors I have seen a lot of blank faces and 'well we'll see if this one will help'. Not much good when you are in pain and discomfort.

I have tried the oral thrush tablet as ouchmyfanjo has and I got a tiny momentary slight alleviation of symptoms, but I put that down to the placebo effect -it wasn't worth continuing over the 6 months because the effect of taking the pill on my digestion was hideous.

OP’s posts: |
SufferingMum Tue 30-Apr-13 12:40:22

Hi Juno,
I've had the same thing for almost two years now. I had every test and antibiotic available for vaginal infections, to no avail.

I finally went to see a specialist in London on Cytolytic Vaginosis and he tested me for that very bacteria, which was indeed present. Most doctors don't know it exists as unless they test specifically for lactobacillus, it doesn't show up.
I also thought I had thrush and consequently took loads of anti-thrush remedies, including pro-biotics, which only make it worse.

To treat it:
I use a mixture of about a pint of warm water and a teaspoon of bicarb and syringe it into the vagina every night. I do about ten syringes, which takes less than five minutes, and it keeps it at bay.
I also try not to eat yoghurt or any lactose products. This seems to do the trick. The depressing thing is when I stop the douches, it comes back in full force.

I don't know how to clear it up altogether, but I do know that it's managable. My husband and I even have sex and as long as I douche afterwords, I have no adverse effects the next morning.

Good luck and if you find a more permanent solution, please let me know.

JunoSospita Tue 30-Apr-13 13:37:19

Just an update:

I am completely clear of this problem since August last year. I was diagnosed with IBS/Acid Reflux then and since I had a nasty reaction to the medication I was forced to control these conditions through my diet.

I cut out:

All fruit especially tomatoes and including peppers
All fruit juice
All alcohol
All sugar
Milk
Lots of red meat.

I did this for four months - eating salads, simple grains (couscous etc), veg and white meat/fish and then introduced small amounts of red meat, beer, peppers and sugar. I have been careful to keep myself hydrated too.

Not only is my IBS and reflux under control but I have had no real CV symptoms since then, just minor niggles if I eat too much sugar or let myself get too dehydrated. Nothing like the agony of CV at its height.

I have also lost a stone and three inches around my waist and stomach. I'm not bloated, sensitive to having my stomach touched, no longer suffer from crippling anxiety and depression.

OP’s posts: |
Ohgodmakeitgoaway Tue 03-Sep-13 00:56:53

Hi Suffering Mum! May I just ask, which specialist did you see about cytolytic vaginosis? I think I have this but it seems hard to get diagnosed! Can anyone recommend a person or department that's good with this? I'm going to royal free gynae dept next week for an initial visit after a few months of pain and discomfort, any recommendations are appreciated! Thanks!

anneday4 Thu 01-Nov-18 14:05:31

cytolytic vaginosis/ lactobacilliosis cured!!
I promised if I ever managed to cure the above I would post it somewhere as I suffered so long and terribly with this condition.
As the previous poster points out the best way to cure it is through
Diet. As it is an overgrowth of good bacteria lactobacilli which feed on
Sucrose you must cut out all sugars from your diet for at least 3 months. That includes fruit and milk plus carbohydrates. Milk has lactose which is a form of sugar. I also took a very low dose of augmentin every other day. The one week course of high dose did nothing as it always comes right back. If you need a diagnosis the best
and only place I know of that can do it is Balham sexual health clinic as
The swab must be done as a wet mount and inspected immediately. If
You you live outside london try a local sexual health clinic. Also cut
Out all live yogurt and anything containing live lactobacilli. Basically
You must eat a diabetic diet for three months which means loads of water
no alcohol or any sugars whatsoever. I hope this helps someone who is suffering with this awful condition which most doctors have not even heard of. I think mine came about my taking too much d mannose because of repeated uti,s.. Anything that upsets the balance of the flora
Of the vagina can cause a vaginal infection.

Hopingforhelp96 Mon 26-Nov-18 20:32:56

Anne your post has given me hope. I have been plagued by these symptoms on and off since I was 18 (now 38!) but the last 2 years have been unbearable 😢 my GP and Gynaecologist all drew a blank as when symptoms are really bad the yeast test as well as every other test are negative! If this is what I have, there might be light at the end of the tunnel.

This is having such an impact on my mental health and my marriage 😢😢

Bluemoon1183 Wed 30-Jan-19 10:17:22

Hi Ladies I'm so stressed out about my symptoms too, for 10 weeks I've tried everything for thrush and uti and bv I'm desperate. I have burning, mild itching, a lot of very sticky white discharge, my bladder is so irritated, burning and painful, vaginal lip inside out all red and inflamed, it so depressing, how do you know if you have this lactobillcus overgrowth? Thank you

Hopingforhelp96 Wed 30-Jan-19 10:48:13

Hi Blue Moon

I got my diagnosis finally from a specialist in London at the Wimbledon BUPA private hospital. Very few specialists are aware of this and as Anne says it’s has to be tested there and then on wet mount.

I have been trying the baking soda but it’s not really working so I am going to try the diet and I hope this works as I can’t imagine a lifetime of this.

I will keep you posted on progress. Good luck xxx

Heretosharemystory Mon 11-Mar-19 13:52:14

My story starts with a (bad) decision to try taking doxycycline, which is a broad spectrum antibiotic, for my acne.
I took it for almost a month, and it only slightly improved my skin. Meanwhile it destroyed all the good bacteria in my body along with the acne causing bacteria.
About a week after I stopped taking the doxycycline I had sex for the first time since starting the medication and the morning after I experienced a raw, burning sensation and discomfort. Upon further inspection I also discovered I had a thick white cottage cheese like discharge
I researched and found that antibiotic use can commonly cause yeast infections (my dermatologist didnt say anything to me about this, if I had only known taking Doxy may affect my sacred lady parts I NEVER would have done it no matter how bad my skin looked!!!)
I tried the one day Monistat. Burning and thick white cottage cheese discharge persisted for 2 more days. I spoke with a pharmacist who recommended the 3 day or 7 day Monistat.
I tried a 3 day course. Burning and discharge persisted. At this time I also started taking Diflucan, which is a commonly prescribed oral anti fungal to treat yeast infections. I took 3 doses spaced out 72 hours apart and also decided to try one more Monistat treatment, the 7 day this time.
By day 5 of this third Monistat treatment I was absolutely miserable, my period had come on top of everything else, I was having very intense burning sensations everywhere down there, thick white discharge all the while that looked like wet toilet paper, symptoms had persisted for 2 weeks at this point.
I also tried a vaginal suppository I got from a health food store containing boric acid and some other ingredients, and was taking triple doses of probiotics every day. Also tried rePHresh gel which made it WORSE - OMG BURNING FROM HELL.
Since the Monistat, Diflucan, and other treatments, were doing absolutely nothing to help me, I decided to stop all treatment and waited 3 days until I could accurately be tested for all other possibilities (its advised not to be swabbed and tested for 72 hours after Monistat and/or your period) Saw my primary Dr and was tested for: Yeast (candida) all strains, UTI, bacterial vaginosis, Trich, gonorrhea, and chlamydia.
All tests came back negative
At this point I was desperate for answers - OBVIOUSLY something was VERY and terribly wrong. I did some more research online which is when I discovered lactobacillus overgrowth syndrome and this forum. OMG!!!!
So all this time I had been treating for yeast, and using medications that are meant to lower the PH of the vagina AKA make it more acidic, no wonder everything was aggravating my symptoms!
RePHresh gel, boric acid, Monistat, are ALL A BAD IDEA if you suspect you have this condition - they are all acidic which will make the vagina more acidic which is NOT what you want if your vagina is ALREADY too acidic!!!!!! --- OUCH!!!!! ---
Probiotics also made it worse with more burning which makes sense if I already have too many lactobacilli and I am taking triple doses of medicine with 90 billion lactobacilli!
Through all my research I found that baking soda can help to raise the PH of the vagina AKA making it more basic and less acidic
I immediately ran to the store and put an ungodly amount of baking soda in my tub with some nice warm water and soaked away - probably 30 - 45 minutes. Repeated the treatment the next morning as well for the same amount of time
HALLELUJAH!!!!! my first pain free day in almost 3 weeks at this point!!!! I was so happy. I celebrated by enjoying a beautiful day at the beach with my boyfriend and our dog.
We decided to try being intimate that night .. well 2 times that night and once again the next morning to be exact ........
NO ..... PAIN AGAIN ......
I was laid out on the couch the rest of the weekend sad sad sad sad
so all of this takes me to this moment writing my story
Today is another relatively pain free day thank GOD
After 2 days of recovery post sex
I am going to continue with the baking soda baths and I may try very gently douching using an irrigating syringe
I am planning on waiting at least a week before we try being intimate again, providing all of my symptoms stay away until then
Just praying for a normal healthy vagina at this point

I would like to add that until taking the doxycycline, I had NEVER had ANY vaginal issues EVER. Anyone thinking of doing this please re-consider. I wish I would have known what would happen, I would have NEVER taken the doxy. I only wish acne was the worst of my problems right now.

Ladies, please say a prayer for all of our bodies and our health, life is already crazy and hard enough, the last thing we all need is to be constantly in pain and worried about our vaginas!

LHMB Mon 11-Mar-19 14:43:58

Hi, I was prescribed Doxycycline last June for an infection. I always feel as though I have a slight UTI, and I have been prone to cystitis for years, a couple of times it’s been so bad I’ve been given antibiotics for it, the first time was Trimethoprim, can’t remember what the second lot was called. I always keep some of those Cymalon cystitis relief sachets handy and they do help but still there’s always that slight niggling of cystitis. Several times I’ve had urine tests come back normal although a blood test once revealed I had under functioning kidneys.
I’ve been getting problems for a couple of years with my periods and discharge and had 4 lots of swabs done over the course of those years that have all come back normal. My last smear came back with low grade abnormal cells and HPV , had a colposcopy five weeks ago and they took a biopsy. Haven’t had the results yet. Ever since then it’s been one thing after another, first pink discharge, then PMT which was much worse then I usually get it, then my period was 5 days early and heavier then usual. Next I was getting an awful smell during and after sex with DP. I went and had swabs done again which have also my come back normal. I used a few of those balance activ pessaries and the smell went. But then I developed bad thrush, dr prescribed Canesten cream and pessary. After it cleared up DP and i used condoms a couple of times just to be safe. Zero smell. Then the next time we did it without a condom the smell was back. Then my discharge was back to no smell again, but next day (yesterday) it had a smell again and was yellow. Used another balance activ pessary only this time it stang like mad. Today all seems normal again apart from I feel like I have raging PMT again, much worse then I usually have it, just like last month on the first period after the biopsy. My periods have been 2 or 3 days early each month for years but my cycle seems to be getting shorter. It was the 30th in December, 26th in January, 21st last month. My mood has been all over the place since the biopsy too. I suffer from severe depression and anxiety, plus PTSD and borderline personality disorder anyway, but mood has been worse since biopsy 5 week ago. Really worried I might be starting an early menopause but the dr said she doesn’t think I am, she said it’s all down to the colposcopy and biopsy. I’m pretty fed up though

StripeyChina Mon 11-Mar-19 22:59:07

Just placemarking (sorry) to come back tomorrow when i am less tired.

MaybeJayne Thu 25-Apr-19 22:28:57

I have been having similar issues for months, finally plucked up the courage to go to the Doctor's after trying otc medicines for thrush and BV thinking it had to be one or the other. Treatments seemed to make it worse which would make sense as if I do have CV inserting capsules of Lactobacillus into my vagina is really not going to be helpful!! All tests on swabs came back clear but there was no test for CV done. It's so frustrating, I've not had sex for over 4 months now and my fiance is at breaking point :-( I really hope finding this information to arm myself with when I go to the Doctor's in the next week hasn't come too late :-( I find it so frustrating that so little is known about women's vaginal microflora, just lots of home remedies used by other desperate women. I have tried a few I have to say but not tried the baking soda. Wish me luck and all the best on your journeys. I'll let you know how I get on x

MaybeJayne Thu 25-Apr-19 22:39:23

OMG how did I not know CV existed! I've had symptoms for months!!! No sex and my relationship is all but ruined because of it. I shall be trying the baking soda for sure and heading to the doctor's asap. It's just so frustrating, my sex drive is also non existent, I'm nearly always uncomfortable and I had no reason why as all my tests came back clear. My vulva is so swollen and red sometimes that I'm terrified the damage will be irreversible. Until I had issues I never realised just how many other women also had issues :-( I hope testing for CV becomes more widespread. There have been massive advances with Interstial Cystitis since I was diagnosed 9 years ago so fingers crossed. Good luck on your journeys to happy vaginas ladies, I'll let you know how I get on xx

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