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!

Pudendal neuralgia?

Heard something on Radio 4 a while back about this:

www.nhs.uk/Conditions/Lichen-sclerosus/Pages/Introduction.aspx

Worth asking about?

Cross referenced with vulva neuropathy? Disclaimer... I am not a medical person but i DO unfortunately suffer from pudendal neuralgia.

I would have a laparoscopy so they can have a good look inside. If they can't see what it is from the vagina, it makes sense to look at it from the other side.

I am a surgical nurse and I can tell you it is not a major procedure and you could have it done as a day case. I think it would be worth it for some answers.

Has your partner been tested for anything?

I did read up about lichen sclerosis whilst googling my symptoms but I don't have any white patches at all anywhere but it's still worth asking about I guess - although surely that's quite a common condition for several gynaecologists to miss?

breakfastnotattiffanys - pudenial neuralgia - would I need to see a gynaecologist about that? what are the treatments are you pain free now?

toobusy - my partner hasn't been tested, I get tested every 2 years along with my smear test as they do this routinely, I was tested before I met him and have been since we've been together and I have never ever had any STI so the clinic said if I've been all clear for so long then its highly doubtful my partner will have anything. My doctor didn't seem too worried about this either after so many negative tests but I may get him to go get checked just for double reassurance.

Is it an allergic reaction to all the creams?
I can't use a pessary or cream for thrush as it gives me a horrific allergic reaction

do you have actual sores? If so, what do they look like?, ulcers?

they look a bit like vestibular papillomatosis

But not quite as big and definitely not all over the place like in that picture theres just a few of them right down the bottom in the crease between the labia and the entrace

another person thinking maybe pudendal neuralgia

Gynaecologist gave amyltriptiline for the constant vaginal pain (as you described, it was just in one particular spot)which helped But I put on a lot of weight quickly and blamed the tablets. I was already very overweight so I stopped the tablets, went on a strict diet, lost 4.5 stones and lo and behold the pain diminished enough to become bearable. I have suffered from sciatica which originates from The nerve between the L4,L5 vertebra which is also near where the pudendal nerve emerges. I'm thinking that my losing the weight has caused less stress on my vertebra therefore reducing the pressure on the relevant nerves.Another disclaimer..This is just my take on the The situation....i am not in anyway medically trained! 😂

the lesions you describe could be just normal skin tags and nothing to do with the pain...

I've had something similar and was told it was this www.vulvalpainsociety.org/vps/index.php/vulval-conditions/vulvodynia

Actually, it seems to be caused by low oestrogen in me

I've also started doing kegels daily which seems to have helped

breakfast - I dare not lose anymore weight I'm only 8 stone and 5ft 5 as it is lol!

Have they checked you haven't damaged or trapped a nerve?Being as you've said about the dull ache in your legs and bum.Make sure you tell your Dr about the new pain.

Wow! I dont think ive been eight stone since i was 12! But have you ever had back problems ..specifically where the Lumbar 4 and 5 vertebra are?

theredjellybean - yes there is that but it is definitely sore when I touch them and all red around there

The main thing that's bothering me is the internal pain because I can feel it all the time and it means I cant have sex or use tampons :-(

As I was reading I kept thinking 'thrush' especially the painful spot when they examine you. I get pain with thrush rather than the classic itching. How long do you use the thrush treatments for? Ime you have to use them for ages past when it clears up. I remember in my 20's needing a week off of work as I had such bad thrush, it was SO painful I was crying with it. I had tried pessaries, creams, the lot. I actually needed 4 lots of pessaries rather than the standard one the GP dishes out then I continued to use the cream for at least 2 weeks and it finally went.

I do get backaches now and again but that's usually because I've either spent the night in my partners uncomfortable bed which I don't do anymore lol, carried something heavy or twisted awkwardly or something, never just random pain for no reason...

I also remember the dull ache feeling in tops of legs you described.

dame- did you get discharge also?? I can't see any discharge at all , its only when they examine me high up and say I've got thick curdy discharge up there that I know I have the discharge rather than being able to see it myself..

I only used the treatment once when the first gynaecologist said it was thrush and then once a few weeks ago when the second gynaecologist said it was.

I asked my doctor do I need to have a stronger or a longer course of thrush treatment and she said no - one dose will cure it straight away so if you're still getting symptoms its not thrush..

what pessaries did you use and did you use them every day or once a week or something?

No white discharge either, that's why it took so long to clear as I didn't recognise any of the symptoms I had.

I've just remembered I took an oral pill too, just one, I can't remember the name, sorry it was 20+years ago plus the pessaries which I used every night for 4 nights plus the cream for 2or 3 weeks. The pessaries were Canesten , prescribed by the doctor. You can buy them over the counter but they're approx£15 iirc- I don't know how many you get in a pack ( might be worth googling as I'd be tempted just to go to Boots and get some!)

This is probably way out but it's rare so you could look it up and see? Friend of mine had something called Bechet's, and the pain was exactly as you describe. Could be worth a google to check.

Sorry OP, it sounds horribly painful :(

Just noticed while googling Canesten do a soothing wash for when you have thrush or discomfort- calms you down apparently!