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!

If you are being treated for thrush repeatedly - is your DP also being treated? Otherwise he could give it straight back to you over and over.

I might actually try that then dame! I have been googling about how many pessaries you can use and I cannot find anything, not even in the leaflet that comes with it - they always just say if symptoms persist consult your doctor but obviously that hasn't worked either!

I've never actually been prescribed any thrush treatments I've always just been told to go buy a pessary so not even sure if the stuff you buy OTC is the same as the prescribed stuff!

I know that when I buy the oral tablet (fluconazole) they always say "have you taken this more than once in 6 months" and if you say yes they wont let you have it but then I've read other stories about people taking it every day for 2 weeks?!

Did you take the tablet at the same time as using the pessaries - sorry I know it was 20 years ago!

glitterfarts - no DP is not being treated because I haven't been able to go near him since November :-(

Some 'out there' suggestions - latex allergy / sensitivity (if you use condoms)? Allergy to something DH had eaten and could be passed via semen eg Brazil nut allergy?
Hope you find the cause - sounds awful for you. Xx

I'm actually someone who has Behçet's (mentioned earlier) and it's a very rare condition related to arthritis but it started JUST like this for me (sores exactly like you explain, but in both my vagina and my throat) with sore spots that just kept showing up, and then I started getting sore joints after that, exactly like your back.

You've mentioned lots of gynaecological treatments but not having your blood tests done. Maybe see your GP and start the road to have this looked at from the inside out, IYSWIM? Ask them to do blood tests to check for inflammation, as well as a full blood count. It could be something like Behçet's or even lupus, could be an infection elsewhere, and these sores just happen to have started in your vagina first. They know how to request these tests and if your levels are abnormal, then you can get a referral to a rheumatologist more easily. Always drives me crazy when they recommend a therapist as "next step" for something like this because they never would if the sores had started in your mouth instead!

Oh yes, that's the name of the oral treatment,I remember it now. Yes,told it at same time as using cream and pessaries.

MrsRUby - I'm not apposed to out there suggestions at all! but no condoms used or lubricants or anything like that and no nut allergies that I'm aware of, and even if it was surely it would have subsided after 6 months? (haven't been near DP since this started in November)

Yeah I don't know why they haven't tried blood tests - they did once but only to check if I was in early menopause which thankfully I wasn't. I keep suggesting things and they keep saying no!

I'm so sorry about this - you're discovering what loads of people do once they start having painful and mysterious symptoms: two things that are sort of awful.

1. It can be a long road to getting a correct diagnosis. This is NOT out of the ordinary really.
2. You have to be your own advocate.

Of course, you don't want to scare yourself with Google (which will end up telling you that even the smallest toothache could be cancer ), but I know from experience you have to go in sounding like you have an exact reason for why you want something done, i.e. "I've read that sores exactly like what I've got can be a symptom of ___ and I think it would be wrong to get even a minor exploratory surgery when we haven't even done full blood work to test for X, Y, Z." I would say your best bets are to try to get some complete blood panels and maybe get a sample taken of one of the sores and send it off for testing - these are both much less invasive than the other procedures that have been mentioned by some of the consultants you've seen. Good luck, OP! Very sorry you're going through this in pain, but believe me, you're definitely not alone, even if it seems very mysterious at the moment.

Also, ask your gynae about lidocaine spray or cream for your vagina, if they haven't tried it. It can numb the pain and if you have no infection (as has been ruled out about 20 times), there's no reason not to try it to at least give you some relief.

well the one saving grace is that my doctor thinks its unnecessary to go diving into a procedure without looking into other things first so I have her support in that respect but when I mention things I've found online it usually gets dismissed with a don't believe everything you read online type of thing...

I read somewhere that there was a different type of thrush treatment which has a different ingredient in there but only available on prescription but my doctor said there wasn't there was only either the canesten OTC pessaries and creams or the fluconazole tablet

dammit I forgot to ask about the lidocaine!

I've googled the hell out of this and it always keeps coming back with either thrush or STD's which is really frustrating!

Lidocaine you can just buy over the counter and would probably help a lot.

Have you been tested for diabetes? Aunt had exactly the same symptoms for a year before it came out.

While DameDiazepam is right about being able to buy lidocaine over the counter, the stuff in something like Vagisil is only 2%, whereas the doctor can write you a prescription for lidocaine that goes up to I think 20%,maybe higher, if nothing over the counter has worked. (I've also had to get prescription lidocaine to gargle with for throat pain, so it can be useful stuff).

oh can you dame?? I can only seem to find this one that talks about stopping itching rather than pain (and only for external use)

www.boots.com/lanacane-anaesthetic-cooling-cream-medication-60g-10021926

Nope not been tested for diabetes groupie i need to add that to the list of possible things to test for then!

rightyesbutno - ah i see yes i have tried vagisil and it didn't do anything :-(

I've suffered with recurring thrush for years now but it's almost under control. Some of your symptoms do sound similar. Although I also wondered if it's possible to have a boil or pimple internally?

I don't think many doctors consider thrush a chronic condition so are a bit too passive about treating it.

I often don't have much discharge. I read an Australian journal piece (that I keep trying to trace) and the Dr that wrote it said that in many cases of recurring or long term thrush, the patient doesn't report discharge as a symptom.

What works for me when i have a bad bout is both oral tablet and pessaries for a couple of days but gp usually only prescribes 1 or other so I buy over the counter . My life saver has been multigyn actijel. I use daily when thrush is "active" but be warned it can be toe-curling stingy when thrush is bad. Then I decrease to alternate days then 2x a week and now once a week or as soon as I feel dry or itchy. I use 2,5ml in an old medicine syringe as I find that's enough without "leaking"
They also do a version for thrush which works just as well but Its sold in individual capsules so works out much more expensive. I also use as a lube.

I hope you find some answers soon

I think we bought it at 5%,plain generic tube,OTC, we just asked for it.

Oh and start taking acidophilus capsules, if it is thrush this will help no end,if it's not it won't do any harm.

Any good?

www.superdrug.com/Emla/Emla-Cream---5g/p/567664

Have you ever been investigated for endometriosis?

It is rare, but it can appear in the vagina - link

It would also link with the sciatic pain.

I really hope you can get some answers, flamingo, mystery health issues are the pits.

What about vaginismus? I know that's technically "psychological" in origin but it is a very real physical condition. Like you I have no abuse or negative sexual experiences, just a wonderful DH who I fancy a lot. But for some reason, sex (or any touching the vagina) can be extremely painful, and there's no other explanation. Of course that wouldn't explain the sores, but if the urogynae couldn't see them they must be quite small and possibly an unrelated minor thing. I don't know. This really doesn't completely match your situation but having exhausted other options it's something to think about.

What has helped a bit is topical oestrogen cream (by prescription), inserted 3x/week. I am certainly not menopausal at all, but somehow that helped. Eventually months later i started to get better and now it comes and goes, with no apparent cause. No fun.

Good luck.

Not to hijack but DameDiazepam , I wonder if the lidocaine would be helpful for me as well. It looks like I don't need a prescription but I need to ask the pharmacist? Do I tell him what it's for?

www.chemistdirect.co.uk/emla-cream-5/prd-jt

I always say any embarrassing creams are for my mother when I'm asked and yes she has used it before 😉

It is probably very unlikely as you don't seem to have any of the other symptoms, but genital sores without infection is a symptom of Behçet's disease.

www.nhs.uk/conditions/Behcets-disease/Pages/introduction.aspx

Oops I should have read the whole thread before commenting, I see people have already mentioned Behcets.