Mystery vaginal ‘infection,’ please help :(

[Burnybits12]

I’ve name changed for this for obvious reasons.

I’m so, so desperate and if anyone can offer me any advice, I would be so grateful.

9 months ago I had a microneedling procedure done on my face that caused a huge acne outbreak and awful stress. I was put on antibiotics (3 different types over a month and a half) and strong antihistamines and my skin issue resolved.

However, I developed itching and a lot of discharge that I presumed was thrush. I also used scented sanitary towels and this came 3 days afterwards. Long story short, treated for thrush and didn’t work and multiple visits to doctors/GUM clinics and swabs have shown nothing except for group b strep. No STIs, no thrush, no BV.

Itching soon changed to burning and swelling, internally and externally (but not on labia majora, just inside of labia minora and vestibule, plus entrance of vagina etc).

I’ve been in continuous pain for 8 months now. The original discharge and itching have mostly gone. I would gladly welcome them over the redness and burning!

I’ve been treated with fluconazole, metronizadole, pencillin v for 10 days, 2 weeks of estrogen pessaries and clindamycin vaginal cream. I’ve been using the clindamycin cream for almost 2 weeks and don’t feel better. Natural yogurt burned and caused red patches.

No outer skin issues or white areas to suggest Lichen and am under the care of a hospital gynaecology team. The only thing they can think of is Desquamative vaginitis, but it isn’t responding to the clindamycin.

My PH is waaaay off, (way too alkaline) and I probably have no good bacteria left in there.

Is there anyone out there who could please help me? I have young children and it’s taking all my strength not to just sit in a room and cry all day. It’s killing me and has destroyed my mental health.

I don’t know who to turn to and have even looked at flying to America, so am willing to try anything. I’m open to all natural suggestions or anything.
Please?

I had something like this. I felt normal when I had a period but the soreness came back otherwise. It was that I had become allergic to thrush creams, soap etc.
Like a previous poster, my doctor gave me trimovate cream and that helped. What was happening was that I was getting thrush from hot baths (just plain water), the thrush creams were causing dermititis and then the thrush came back. Circular problem.

I cannot have baths at all and can only wash the area with water in the shower.

OP - look at this: www.dermnetnz.org/topics/cytolytic-vaginosis/

Cytolytic vaginosis

I think I've had this on occasion too and I've tried bicarbonate of soda baths. Usually my period would be fine and I've had soreness after.

You may find this thread useful: www.mumsnet.com/Talk/general_health/1494932-Not-cystitis-not-thrush-Cytolytic-Vaginosis

Have you tried antihistamine?? I just wondered as you said you became allergic to hair dye at the same time.
I don’t know what you’d be allergic to, but it might be worth a try?
I’m so sorry, it sounds awful x

Could it be lichen planus?

Oh OP, I really feel for you. It is absolutely awful when you have complex symptoms that can’t be easily diagnosed and treated - I’ve had some similar issues and symptoms that are really confusing. GP has no idea what’s going on, and they can’t really be arsed to try to be honest - too complicated for a ten minute appointment!

I’ve recently had a really drastic change in symptoms after quitting smoking and I’m paying for private blood tests because my GP isn’t being too helpful. Have you had any blood tests done?

I’ve had some vaginal discomfort for a few weeks now (nothing like you) and it turned out to be down to a UTI as now that’s been picked up and treated the vaginal symptoms have gone.

My immediate reaction when reading your OP is that this sounds like an immune response (triggered by the micro needling maybe and then exacerbated by the many antibiotics). Possibly hormonal issues in there too. Have they run blood tests to check for issues with the immune system? Lupus etc? I hate to ask but i assume the GUM clinic tested you for HIV?

I’d really think about finding an integrated medicine or functional medicine doctor privately. You do have to make sure they’re a medical doctor and not a homeopath etc, some of them are a bit woo but their whole thing is looking at the patient as a whole, and they often deal with complex cases where people have been unable to get any help from the NHS. Obviously do your research before spending the money!

Thanks, everyone.

It’s not Cytolytic vaginosis as that’s too acidic and I’m too alkaline.

@Dione I wondered that but I saw a vulva expert at the hospital and doesn’t suspect Lichen Planus. I don’t have any skin changes besides redness that comes and goes and the discharge I started with literally came on overnight while I was sleeping, rather than creeping on.

@Deathgrip I do wonder if the microneedling has triggered an immune response but I’m fine everywhere else. I teach infants and am constantly exposed to germs and not ill very often, so it that way my immune system is fine.

Nobody suggested blood tests but I have severe health anxiety with a fear of tests so i’m relieved it hasn’t been suggested.

I was checked for HIV when pregnant and have only had 1 sexual partner so know it’s not that. Very reputable clinic did the microneedling and showed me while they opened the microneedling packet.

I do wonder if extreme stress can cause some of this. When it came, The microneedling had literally caused SEVERE acne all over my face. I was starting a new job and was so upset. There literally wasn’t a cm on my lower face that didn’t have a spot on for about a month and a half and I barely left them house and just cried all the time.
The vaginitis followed that and I do wonder if the stress and antibiotics worked together to cause this

Honestly I think you need to push for some blood tests, and I’d also get retested for HIV if you haven’t been checked since this happened. I know it’s hard when you’re anxious but I’m sure not knowing won’t be helping either.

I’d say inflammatory markers / some of the more common antibodies would be good to check, from what I’ve read.

When did this happen in relation to pregnancy? Pregnancy itself can cause changes in immune response, good and bad.

I know it’s hard to accept but I don’t think any GP is going to be able to help you because it’s too complicated and it’s not even clear who they should refer you to. Have you seen a dermatologist? Maybe a rheumatologist might be helpful, or an endocrinologist if you have hormonal symptoms. It’s so difficult when what you have doesn’t fit neatly into any box.

I see you're trying balance activ. I recommend the pessaries rather than the gel. One a night for seven nights which enables more acidic conditions for good bacteria to thrive. I would also second the idea of changing toilet paper. I only use the cheapest unbleached stuff. The posh stuff can cause me irritation and I read somewhere it can cause micro cuts in your skin.

I'm so sorry burnybits I misunderstood. I do sympathise with your predicament. I was becoming a bit depressed with my soreness. I couldn't walk with any comfort. I hope you find a cure soon.

I’d recommend Dr Jacobs clinic in Dorset / London.
Traditionally trained doctor who specialises in Eastern medicine / biomedicine / uses Russian space technology for diagnosis and healing.

A good example of how he’s helped me: I had BV, Thrush, Candida etc that not matter what I did wouldn’t clear.

His tests showed that I was carrying a parasite and that my body was actually creating these things in my body to help fight the parasite - so until I cleared the parasite would never be free of the Candida.

He treats you there and then with machines plus medicine.

I’m approx 10 weeks in - I’m losing weight, have more energy, much clearer headed - honestly it’s such a difference!

I only ever use aloe Vera loo roll, for my kids too. It's so soothing on the skin.

*Lichen sclerosus

I had a mystery infection 'down there' that went on for years. GP was useless. Had all the tests, all negative. Creams, gels, probiotics would work for a while or not at all.

These Boric Acid suppositories are the only thing that have helped. Take until your infection clears, then once a week or so. Haven't had any issues since.

Thanks, everyone!

@Lulubella- that’s amazing, will have a look and glad you are feeling great!

@breakfastpizza Are you in the US or do they send to the UK? It’s just saying amount it $. I’m sure there’s a way I can get them, though, that’s amazing and you’ve given me hope!!!

Hope it might help

@Burnybits12 I stocked up last time I was in the US. You can get them on Ebay, too!

Have you had an allergy test? I had one a few years ago which brought up 3 allergies. 2 of them are in many medicines, foods and beauty products. I have flare ups every now and again, often in quite unrelated and unexpected areas of the body!!! I always then look for the source and find that it's something I've eaten or used that contains the allergen. It might be worth a try.

OP I had similar last year and eventually bought these They did sting on first insertion but this wore off within a couple of minutes.
The other thing I did was change to really cheap loo roll as i found that the others, even supermarket own brand were "dusty" and this definitely triggers it for me.

GP here - have you considered plasma cell vulvitis? regardless seems like you haven't tried steroid creams which may be worth a go....? (obviously after talking to your doctor)

I know you don’t have the whiteness but it sounds a lot like my LS - better when I have my period, soreness etc - if it seems to respond to 1% steroid ask for mometasone which is what I use - stronger and works v well (1% barely helps)

Deep sympathies, OP. I suddenly developed lots of allergies as a teenager and suffered with itching downstairs for years. It's gradually gone longer and longer between attacks, and I've been free for over a year now (touches wood), but it was absolutely awful. Don't scratch! If it gets really awful, put the shower head attachment off you've got one on lukewarm and use that. Pat dry and clean pants.

I would use child's farm baby wash as a shower gel and their shampoo too. It's really mild and the only thing I can get away with using downstairs apart from aqueous cream. Non bio detergent, reusable sanitary towels, no pyjama bottoms at night, clean knickers instead if you have to have something on. Use water from a spray bottle after the toilet and pat dry - don't wipe. Cotton knickers only, no lace or frills. That is all based on what helped me.

I got checked for HIV when pregnant and have only had 1 sexual partner so know it’s not that

But has your sexual partner only had one sexual partner? I would very tested again anyway.

Hope you get better soon!

@Clankboing Can I ask what type of allergy test you had? When I asked the GP, they said food allergy tests are just exclusion diets?

@imsorryiasked
Brilliant, thank you! I’m so relieved that I have new things to try- just having some hope that something will work is great :)

@bobbypinseverywhere I’ve just had a read about it, thank you! Interestingly, looks like it can be treated with steroid and the other treatment for Desquamative vaginitis is 10% hydrocortisone. The gynaecologist I saw said that in between seeing her again, I could ask my GP if they are willing to prescribe me 10% rectal foam as we don’t have compounding pharmacies here (like in the US) to make vaginal suppositories with 10% hydrocortisone. Is there a specific name you can recommend- something I found online said prednisolone foam? Another woman I found online had success with Procto foam, but that shows online as just 1% hydrocortisone? Sorry for all the questions, bet you wish you hadn’t commented

Thank you, @Regansomerset :) Yea, HIV would be pretty impossible, thankfully! I don’t have any other signs like repeated infections (besides getting cold sores but I think that’s coz I’m so bloody worried and anxious all the time). I’m surprised my hair hasn’t fallen out from stress- I literally think about my issues all the time and have lost all enjoyment in life :( It sounds pathetic but I feel so alone with something like this. Sometimes I think, ‘today I will try and think positively and keep busy’ and then I will decide to have a quick google again and be searching forums till 2am, worried sick.

I went in holiday for a few days and it was a lot better and strangely flared right back up the night I got home. Part of me hopes that if I can just stop worrying about it and reduce my stress levels it might just go away but it’s impossible

The ph is most important but as someone else said have you developed an allergy. Do you manage to see female doctors. Anxiety related issues can lower the immune system and you have mentioned this. Have you had a general check up.

Could it be your fabric detergent on sheets or the toilet rolls that you use?