Long Term Urinary/Vaginal Problems.. what should I do next? (Long post but bear with)

[emma_jk]

Hi everyone,

I haven't posted on here in a while but this has been a long term condition I have been suffering with for a few years at this point. It has put a strain on my relationship - which has (thankfully) lasted throughout this whole ordeal; but I need to get this sorted and would like someone's thoughts on what to do next.

Symptoms

- Itchiness and burning all over my groin - especially around the opening to the vagina, the clitoris, and my anus (noticeably more after going to the toilet). The itching around my anus has got really bad in recent months with it being very painful to walk, stand or do anything sometimes. I have mentioned this to several doctors where one diagnosed me with thrush that had "spread to the back passage" because she said it looking inflamed. I applied cream and used a pessary tablet but there was no improvement.

- Peeing is painful right on the opening to the urethra, sometimes with a lower stomach cramping associated with it.

- Back pain (especially when on my period and after peeing) particularly on the left hand side of my lower back which sometimes feels similar to the kidney infection pain I had a few years ago.

- Skin irritation with comes with the itchiness, I thought this may have something to do with the type of detergent/pads I use which had fragrance but it has lasted so long and I have this irritation even when not wearing any underwear! I end up getting red and swollen down below especially on the opening to the vagina.

- Painful intercourse (dyspareunia), it has become almost impossible. I have been tested frequently for STI's and have had a long term boyfriend throughout this as mentioned.

The worst symptom is the irritation and itchiness. I can't live with it anymore and I don't know if maybe it's my pubic hair that is irritating, should I get a wax or something? Shaving has been irritating in the past. Also the painful sex is the worst part of this for me emotionally. My mental health has really suffered because I am a young 21 year old girl at university with a boyfriend and it's really put a strain on our relationship - and we've been together almost 4 years.

Procedures/Referrals.

- I've been referred to gynecologists and urologists. All my recent swabs, examinations, and urine tests have come back clear and unremarkable.

- My GP found candida in the summer of 2018 from a urethral swab which I took fluconazole for, for about 2 months with no change.

- In November 2018 I had a biopsy which came back with nothing in particular but they did notice inflamation of my urinary tract. My urine has been clear since my last suspected UTI in 2017.

- I had an MRI in July 2019 which came back clear.

- In September 2019 I went to see a new gynecologist which diagnosed me with vulvodynia which she prescribed me amitriptyline for. I had been using that up until recently going as high as a 30mg dose but with no improvement at all.

- Since September 2019 I have been having a cystistat which is a instillation of fluid into my bladder to support the lining of my bladder as they couldn't find anything from the biopsy or MRI so thought this might help. I have seen maybe a little improvement but by no means are any of the above symptoms "cured".

I'm sort of at my wits-end and want to cry and scream all the time about how I'm feeling and how uncomfortable I am. What I would really like to know is who to go to next. I was wondering if it was worth going private and what kind of specialist I should see. Also what kind of tests I could ask for? Like should I get another blood test and more swabs/ urine/ stool samples? I really want to see this treated in the new year and I would be grateful to anyone who could help!

Thank you for reading,

Emma

[moo196]

Sounds nasty! I'm definitely not an expert but a lot of your symptoms sound very similar to my lichen sclerosus. Perhaps ask for an urgent referral to a dermatologist. It can't be cured, but controlled well. Pm me if you want to chat it over.

[Melhom]

That sounds horrible. Have you thought about holistic approach and check for food allergies? Reducing sugar , Using no bio washing powder and just washing you in non scented shower gels or avoid anything other than water down there for a while. A very long time ago on the program embarrassing bodies, there was a lady being treated long term for thrush, she was over cleaning and turned out she has tiny little fissures in side her vagina. I can’t remember how she healed them.

Could the skin condition be eczema?

Do you need a pelvic ultasound for the pain?

[emma_jk in reply to Melhom]

Thank you for responding! I have never used scented soaps to wash and only use non-bio detergent - only using water to wash down there. I don’t think it is dry enough to be eczema and I’m not sure that would cause the inflammation of the vulva and everything. I got a pelvic ultrasound maybe 2 or 3 years ago but I doubt they would find anything now because I had an MRI that came back with nothing do you think it’s most likely a sort of skin condition then? I will go back to the GP soon and ask for a blood test for allergies I think. Thanks!

[moo196 in reply to emma_jk]

Perhaps consider my suggestion of lichen sclerosus as above. I hadn't even heard of it until I was diagnosed after months of problems

[emma_jk in reply to moo196]

I will do! Thanks so much, I hope to get to the bottom of this soon! Best wishes for health in 2020! xx

[Melhom]

For topical relief perhaps try sudocream or bepanthan

[emma_jk in reply to Melhom]

I’ve tried sudocream but I’ll give bepantham a go! I’ve just bought one of those vagikool things too

[Notme7]

Emma hi,

For such a long time I had near enough the same symptoms. I went to the gp and was prescribed thrush creams and pills time after time.

I was so frustrated and pissed because the itch and worry affected everything I did throughout the day. I couldn't even stand in the supermarket queues without wanting to scratch.

I had no obvious visual signs that I had anything wrong apart from being quite red and swollen. The whole of my clitoral area took the worse hit and the inflammed bits started to thicken and look white.

At my wits end and I went to an entirely different doctor. She took one look and said Lichen sclerosus. She prescribed an ointment called Colbestol and referred me to gyne.... I'm still waiting for that appointment.

In the end I did my own research and found that it is an autoimmune disease.

I decided to cut out wheat which I know I have a slight intolerance to, i now wash with an emollient cream E45 down there, i used the Clob ointment every day twice a day then decreased the usage to every three days and as and when i need it.

It's been 3 weeks since the doc diagnosed me and i feel so much better.

I still have crazy lower back pain but it has decreased somewhat and the pain I had associated with when I went for a wee has decreased since not eating wheat.

Your triggers may be different to mine but the main culprits are dairy, yeast, sugar and wheat.

Good luck x

[moo196 in reply to Notme7]

Hi, I'm using betnovate and betnovate rd ointment to control the symptoms. And fortnightly fluconazole as an anti fungal. Nothing seems to be diet related in my case.

What OP describes sounds very much like lichen sclerosus... Definitely see a doctor with this in mind and hopefully get some treatment that will help.

[Galen70]

My differential given your symptoms would have been Lichen Sclerosus or vulvodynia. Given you have had a biopsy ( depending on where it was from ) and it was normal , that makes vulvodynia likely. I would attend a sexual health service , ideally one with a genital skin clinic or a psychosexual service so they are familiar with this condition . read here also : vulvalpainsociety.org/vps/ . It is a treatable condition but you may need a combined approach.