To think i must be the only person in the world that has this mystery illness?

[FlamingoFlower]

Shamelessly posted in AIBU for traffic - tried on the health forum previously but no response.

This is going to be very very long -but I just don't know what else to do, or where else to go for help.

So back in November I'd had sex with my partner in the night, got up the next day and was weeing frequently all day, by the evening I developed a really uncomfortable feeling in my vagina, especially when I sat down, which then turned into a full blown horrible UTI a few hours later.

Got put on a course of antibiotics and the UTI went but vaginal pain stayed.

Went back to the doctors and to cut an even longer story short I had 4 urine cultures taken, 4 lots of 2 different types of UTI antibiotics just incase, in the space of about a month and a half, all cultures were always clear and antibiotics didn't do anything.

Then went to see a gynaecologist who examined me, I went absolutely though the roof when she put the speculum in- the pain was only in one sore spot on the top wall of my vagina, the only way I can describe it is you know when you get a really painful large spot and putting any kind of pressure on it hurts? It was that pain...anyway she decided it might be a pelvic infection, swabbed me for chlamydia, ghonorrhea, thrush and sent me off for an ultrasound.

Swabs where clear, ultrasound was fine so decided they wanted to perform a laparoscopy but didn't have a clue what she was looking for so that put me right off and I decided to get another opinion.

went to see another gynaecologist who decided it was thrush as I had a thick discharge (even though the previous weeks thrush swab was clear)
Went off and used a pessary and no change
Went back to see her, she decided she couldn't find what was wrong with me but did say having a laparoscopy would not make sense as it was a superficial pain rather than a deep pelvic pain and said not to go through with it and said sorry there's nothing more I can do with you and in not so many words told me not to come back and see her...

I then went to see a urologist as my doctor thought that seeing as the pain was on my vaginal wall behind the urethra it might be that
Went to see him, he didn't know what the problem was but gave me a steroid cream to use on the sore bit

That didn't work so he decided to send me for an MRI - that came back clear also.

He shrugged and suggested a 3 month course of antibiotics incase my uti hadn't really gone away - queue more sending off of urine cultures but again clear.

Went back to my doctor by which time the pain was getting worse and I had now developed "sores" which look like little pus filled sacks, right at the bottom of my labia just before the entrance and she decided it was herpes - told me to get to the STI clinic for swabs immediately

Went there, they swabbed the sores and also internally and again - as the swab hit this particular spot inside, I went through the roof and ended up bursting into tears as she wasn't particularly gentle and hit it with quite a force!
She then said I need to see the in house doctor who came in and examined me - said she couldn't see any sores at all and I definitely don't have herpes!
Examined me internally and again - when she hit this particular spot I winced but she said she couldn't feel anything :-(

Whilst she was examining me the nurse came back and said the guy in the lab upstairs said my slides do not show thrush but I'd have to wait for the herpes and other results

The doctor said she was going to refer me to see someone that might be able to help me...

Anway a week later, STI results came back negative for herpes and everything else (as expected!)
I still have the sores and I am stil in a lot of pain in and out of my vagina

The referral letter came and it was to see therapist! I'm really annoyed about that - it is not in my head ffs! It makes sense now as she kept asking if I'd ever been abused in the past and did I have any problems in my relationship that are subconsciously making me not want to have sex erm no.. I am in pain constantly not just when I think about sex!!

I went to see yet another urogynaecologist over 70 miles away and whilst he was very nice he didn't know what was wrong but said right lets just do a laparoscopy, a hysteroscopy and a cystoscopy and a uteroscopy (all at the same time), whilst he was examining me he said I think you have thrush.. I explained my slides were clear a week ago but he said I could have developed it in the meantime

I went home, got a pessary, a tablet and cream but nothing has made any difference

I'm sore, im red, im itchy (but not like an intense itch that you get with thrush)

Went back to my doctor yesterday who said if I've taken all the thrush treatments and nothing has worked then its just no way it can be thrush!
She was horrified reading the letter the urogynaecologist wrote and said those procedures were completely unnecessary especially the hysteroscopy! She has apparently performed several of these procedures before and said its really not a nice experience and will not diagnose your sores or the sore spot inside! SO I've decided to put that on the back burner for now as I don't want to be recovering from all that and still have this pain to deal with.

She gave me some steroid cream for the sores and some etalium as she thinks the soreness and itching might be because I'm too dry?
I slapped It all over last night and this morning but no relief at all. I know its only been 2 applications but I would have expected even some degree of relief no matter how small if that was the problem?

I forgot to mention to her that I now have a dull ache pain at the top of the back of my legs just where my buttocks start and all around underneath there, its almost like I've been walking miles in the wrong type of shoes, that sort of aching pain..

I can't understand why I am the only person in the world that has this problem - everyone is scratching their heads and doesn't understand what it is!

These are the things I have tried over the course of the 6 months:-
Tea tree oil
Umpteen thrush treatments
Nitrofurantoin, Trimpetroprim, Co-amoxiclav
Sudocrem
No washing with shower gel or soap, only water
Warm baths with tee tree and Epsom salt
Etalium
Steroid Cream
Coconut oil
Blood test to check for menopause (its not and im early 30s)
MRI
Ultrasound
several negative STI tests
Negative BV & Thrush
Changing my washing powder several times all sensitive or hypoallergenic powders/tablets etc
Changing my toilet paper for unbleached unfragranced
wearing only 100% cotton underwear and on some days no underwear at all
Antihistamines
Probiotics (ones specifically for vagina)
Vaginal moisturisers

I am so sorry it's been such a long thread I don't know what else to do or where else to seek help!

forgot to mention to her that I now have a dull ache pain at the top of the back of my legs just where my buttocks start and all around underneath there, its almost like I've been walking miles in the wrong type of shoes, that sort of aching pain..

This (but not your internal vaginal symptoms necesarily ) sounds like the beginning of an infected Bartolin cyst. Starts as an ache - as if you have had too much sex - and then gets worse.

I agree with PGOAT - vaginismus is an invisible problem which has the exact same issue of soreness in 1 spot and not being able to have sex or use tampons. Feels like a wound and the pain is searing. I've suffered with this and the underlying reasons were psychological. A very clever gynaecologist diagnosed this for me after a long chat about my personal life (not being able to SEE the sore spot) and then referred me to therapy.

PGOAT - I've tried the lidocaine and it did work a bit, but not entirely. I went on to have therapy & another baby which has resolved it for me but I still can't use tampons without feeling like I am on fire! Do try it, it can't hurt (lidocaine, not baby )

OP, just wanted to add these: . Vaginal pain and sores can be awful. They can affect everything from your sex life to your ability to walk; throw in the new back pain you've mentioned, and I'm sure you're having a rough time. I do hope it gets sorted.

Also, don't feel bad if you have to get a bit forceful with your doctors about getting things investigated. There's proof that sometimes women do not have their pain or gynaecological pain taken as seriously as men's pain.

www.theatlantic.com/health/archive/2015/10/emergency-room-wait-times-sexism/410515/

Genital psoriasis?

I had lots of discharge, itchy, sore, but no actual painful spot, though sex and examination were very uncomfortable. Same as you all swabs clear. Only thing that sorted it was stopping the pill. Same thing happened after being on HRT for a while. Stopped that, no further problems though flushes are a nightmare! Are you on the pill?

Have you been to your local GU clinic? I was sent there when I had an odd strain of thrush which wasn't responding to normal OTC meds. There are many kinds of thrush, and after I had a long spell of it I ended up with something called vestibulitis which sounds like what you're describing. My GU consultant put me on amitriptyline for six months and that sorted it out. It's flared up a couple of times in the last 15 years but is no longer remotely as debilitating as when it started.

Gps are pretty hopeless with thrush, IME, but the GU docs are fab.

Good luck!

Ok so I went back to the doctors this morning for swabs from the nurse..

She put the smallest speculum in which I just about tolerated and the swab was quite painful but bless her she was really gentle!

She said she noticed I have a thrush looking thick discharge so I told her I'd already taken some thrush treatments and I still have this pain so she told me to wait for the swab results

I'm not on any contraception at all - I stopped the pill back in December just incase that was causing any problems so it's definitely not to do with that.

Banderchang - what treatment other than amitryptiline did you end up having to clear your strain of thrush?

I'm starting to wonder that if I've had this for SO long if either a) I need a longer treatment or b) its a strain not responding to the OTC stuff but my doctor says there's nothing stronger or better than you get other than the OTC stuff? Is this correct?

I went to the GU clinic about a month or so ago on the insistence of my GP to get tested for herpes and they said my swab results did not show thrush??

Do you have any pale patches on your labia? I have just been diagnosed with Lichen Schlerosus and my GP specialises in it, she says it's very underdiagnosed., I had little white lumps and 'pimples' with it too

Fabulous - nope no white patches at all - I did google lichen schlerosus after someone else on here suggested it but I don't think I have that although it's going on the list of things to suggest to the GP anyway!

I wasn't clear before, sorry, my amitriptyline wasn't for thrush, it was for vestibulitis (the sore patch you're talking about) which I got as a result of so many thrush treatments.

So, normal thrush is Candida albicans, and this can be treated by the OTC meds such as canasten (fluconazole) and also prescribed meds like Sporanox (itraconazole). However, after literally years of having thrush (or those symptoms which didn't always show on the swabs) I went to the GU clinic and they identified that I had candida glabrata. This is really rare and doesn't respond to the -azole family of medicines at all. The key medicine which sorts candida glabrata is, I think, flucitozine (not sure of spelling). It's not easily commercially available. I've needed to have it twice, and my consultant had to contact Dr David White somewhere in Birmingham whose lab made it (its cream pessaries) and sent it to my clinic. It's a faff because it's two weeks of pessaries which need refrigeration, but it's worked for me on two occasions now when nothing else did.

I will try to dig out better contact details for you about the medicine....

Ok, here is the BMJ article from Dr White: sti.bmj.com/content/77/3/212

And here is another article about use of boric acid and flucytosine to treat vaginitis after candida glabrata: http://www.life-worldwide.org/assets/uploads/files/Glabrata%20boric%20acid%205Flu%20copy%202%20(1)(1).pdf

I've just remembered that another medicine which helped me a bit and was easily available from my local GU clinic was nystatin pessaries.

Good luck getting it sorted - mine was awful and it took years to sort out.

Just googled and found that Dr White is still practicing in Birmingham. Secretary's details are online. So if you're anywhere near there, might be worth trying to see him?

Thanks for all the info Banderchang! sounds like I might need to go further a field and find a different GU clinic then because they didn't seem to want to investigate further - just said not thrush, not STDs and sent me away...

Ok so a bit of an update...

Went back to the doctors - got swabbed for thrush again and negative for thrush - again..

The sores have either gone or are so small they aren't bothering me now!

However my labia are bright red, sore, and painful. I have thick white clumpy discharge which when the nurse swabbed me said was 99% sure it was thrush but the tests are always negative

Doctor gave me strong steroid cream which has actually made it a bit worse I think.

She said she's never heard of candida glabrata - went to my GU clinic they said they've never heard of it either!

GP won't prescribe me any topical anaesthetic other than vagisil which doesn't do anything :-(

@FlamingoFlower

I know this thread is from summer last year but I found it when googling something else and wondered if you had any diagnosis yet?

Really hope that you have and that things are less painful for you.

I’m sorry sounds a nightmare. Hope you solve it. I had a painful spot in my vagina and it was actual an internal haemorid in my bowel. I would hit the roof during Pap smears and I assumed it was my cervix but nurse explained she was just putting pressure on vaginal wall. Solved my internal haemoriods and Pap smears stopped being painful. Good luck.

@flamingoflowers
I know this is old.. did you get to the bottom of this

@flamingoflower
I know this is old.. did you get to the bottom of this