Vulvodynia - new member trying to gain some insight with people suffering similar symptoms

[ejp1006]

I'm so glad I've found this site as I too have been searching for cases where vulvodynia seems to be just itchiness and not stabbing pain like a lot of other women seem to experience. I'm 30 years old and last December (2017) I started to experience itching. It was initially treated as a UTI then thrush then bacterial vaginosis (all of which I have experienced previously) but this felt slightly different and it wasn't clearing up. I felt like I had daily intermittent sensations down below, sometimes they would last a few seconds and sometimes longer. In April I was prescribed amitriptyline but I didn't feel this made much difference. I was changed onto pregablin and then gabapentin (which I still take). Again, I don't feel like this medication makes any difference. Over the months I've tried various creams - vagisil, steroid, canesten, e45. Some sooth the itch slightly but none of them have relieved it permanently. I've had probably 20 GP attendances in 2018 about this. All of my swabs and examinations come back normal. I've been to see a registrar at hospital who also said everything looked normal down below. They've now referred me for cbt and physiotherapy(!?) And I'm due to gave a pelvic ultrasound in a couple of weeks (I had a laparoscopy a few years ago where small cysts were found but no endometriosis so they are checking cysts haven't grown etc). I have had private cbt over the summer anyway... this hasn't helped the issue! I've told my close friends and my partner about my condition but they just dont understand what it's like to have an intermittent daily itch down below. It's wearing and debilitating. I only wear cotton underwear and don't use perfumed products. I have a desk job so I do sit all day which can't be helped but sometimes this doesn't overly affect me and sometimes it does. A couple of weeks ago I was adamant the docs had got it wrong because I couldn't find itchiness stories; they were all about pain. I self medicated canesten thrush tablet and cream hoping and praying it was thrush that hadnt been picked up on. The treatment did help the itching a little (maybe I did have it alongside out acquired it in the last 10 months) but all my symptoms have returned. I'm suffering itching a lot of the day. Sometimes I physically have to scratch it you relieve it. Sometimes I have to give it a good scratch with toilet paper too. It's just so depressing having a fight with your vagina every day!! I feel so low. My sex life has drastically reduced; I struggle to find pleasure in sexual activities; I find it more of an itch relief!! I just want the vulvodynia to stop! I cry myself to sleep some nights because I just can't see any light at the end of the tunnel. Stories I read are of women who have suffered this for some 10 years. I've suffered for a mere 10 months in comparison. I'm going to try the Actigel a lady mentioned above but I don't hold out much hope at this stage! I want to come off gabapentin... i find it has made me put on 1 stone in 5 months and I feel low, spaced out and mentally numb. I'm getting married next year and want to start trying for children after. Any tips would be appreciated on how to treat this horrible vulvodynia! The itching and sensations are around the vagina entrance, urethra and perineum. The sensations can't be brought on by touch and I don't have pain when having sex, I just find that sometimes his penis acts as an itch relief which of course isn't ideal. I feel a little lost and I'm trying to do everything I can to alleviate this problem.

[Amelca17]

I was diagnosed with lichen's a couple of years ago. I had never heard of it before then. I was seeing a gyn who specialized in urology which is why I went to him in the first place since I had and still have chronic UTI's. After a while I was so raw feeling, swelling, itch etc.. This doctor tried a variety of topical medicine and added cymbalta. I got to the point I could not stand to sit had to use a donut pillow where ever I went. One medicine the doctor thought the alcohol in it was causing some of my symptoms so he had a compound made...$60 plus dollars later no help. This continued for some time and nothing was working. When I found his diagnosis on my patient summary I looked it up and found the support groups for vulvadynia & lichen sclerosus. I got so much advice on all those sites. My doctor had never explained how to go about applying the medicines, sitz baths and to use halog ointment instead of clobetasol cream. I went back to this doctor asked him to switch to halog he said NO! I guarantee if he was a female and he looked and felt like I did he would change the medication. So I told him I was not using it anymore that patient summary read like he had suggested to discontinue the clobetasol! I never went back!! I already had a appointment with a gyn who treated lichens & vulvadynia that was in March of this year. She prescribed the halog and happy to say I have been pretty well symptom free since then. I also use premarin topical. Now to get the UTI's under control...currently I am seeing a doctor of infectious diseases for that.

Good luck to you...oh I have never taken amitriptyline, it was in a topical cream but never orally. Wishing you well. Speak up to your doctor or change to someone different. It is your body and you have to be your own health advocate!! Keep records of all your tests & medications. When I transfered my care the new docs were so glad to look at my information in my struggle1

[ejp1006 in reply to Amelca17]

Thank you. I don't think I have lichens, they've ruled that out previously and I don't seem to have the white spots. I may try Halog oil. I work in clinical negligence so unfortunately I over worry but it does mean I make notes of meds etc. I did keep a diary for months but then it got to the point it was the same every day so I've stopped.

[Heathwhit]

Are you in the uk if so you need to visit the clinic at your local hospital, ask your doctor for a referal to the femail dermatology clinic.

[ejp1006 in reply to Heathwhit]

Yes, in the UK. I will ask for a dermatology referral thanks.

[ejp1006]

I've also tried probiotic treatment and put natural yoghurt up there (yes!) Overnight... whilst wearing a pad. This soothed slightly but not resolved

[Konagirl60]

Have you been tested for a yeast infection yet? It causes terrible itchiness from what I have read. It can be passed to you by oral sex if your fiancée has yeast in his system. This sounds painful, irritating and must get under control. Good luck.

[ejp1006 in reply to Konagirl60]

Yeah been tested and all negative. Even had sti checks (both me and partner) just in case but again all normal. This is why I've recently hard thrush tablets and cream and probiotocs just in case it was an undetected version but that hadnt helped either. It feels more like nerves in certain areas. So frustrating and depressing. I just want a fix.

[Konagirl60 in reply to ejp1006]

Have you heard of the natural rash and skin sore healer called ‘Sea Buckthorne’ oil? You can buy caplets and taking three a day regularly for a month may help. I have integrated taking pharmaceuticals with supplements for ten years with no problem. Give it a try. It sounds as though topical treatments are to no avail.

[ejp1006 in reply to Konagirl60]

I hadn't heard of it but I'll try anything! Thanks

[Hidden]

Hi

I had itching and soreness after a UTI and then thrush. For ages I thought I still had thrush. Looking back, I think I may have had a bad reaction to the thrush cream, or possibly one of the other creams I tried. The more creams I tried, the worse it got. Eventually stopped using anything and took amytriptyline which helped decrease sensitivity but not a miracle solution by any means. Unfortunately most of the medics don't have a clue regarding "vulvodynia". There are lots of things which might help. Two suggestions - have a look at website called vuvodynia society or something similar, and a specialist women's health physiotherapist who treats nerve/muscle dysfunction might be really helpful to help you work out what is going on. It sounds like nerve pain, similar to mine, but this is just a guess, I'm not medically qualified! Hope you find something which works for you soon. It's so hard when you cannot find help and advice.

[ejp1006 in reply to Hidden]

Hi. This does sound familiar to my case. The hospital have referred me for physiotherapy so I'm awaiting the appointment and fingers crossed that will work. Are you in the UK? I agree... the docs dont seem to overly know what/how/treat/symptoms. I stopped all creams and products for a few months but it didn't really help. I've now sought comfort (slight) in just vagisil at the moment until I can see my doc again. Other comments have suggested a multi gyn cream or halgo oil - I may try those. I don't have 'pain' as such; just itcjiness that comes and goes throughout the day in various waves of sensitivity and intensity. Sometimes it can also feel a little tingling that goes down my leg but those incidences are rare.

[Konagirl60 in reply to ejp1006]

Tingling down you leg?....sciatic nerve?

[ejp1006 in reply to Konagirl60]

I do suffer a little with sciatica but this is different. Slight sensation when I get the itching if its severe but that tingling doesn't happen often down leg

[ejp1006 in reply to Hidden]

I've had a look on Vulval Pain Society - is that what you meant? Again I couldn't find an exact case to me

[Hidden]

Hi

yes I'm in London. I'm currently under UCLH women's physiotherapy with the NHS. Also have seen a private women's health physio who is amazing and was the first person who was helpful after 2 years of seeing gynaecologists, dermatologists, etc. Which part of the country are you in?

[ejp1006]

Shropshire/West Midlands. Sounds like physiotherapy is definately the way forward for most. I'm just awaiting any sort of correspondence/appointment from the hospital to get it started! Were all of your examinations, swabs etc. 'normal'. I'd be interested in your full story. You could private message me if preferred (and if you'd be so kind as to share). You're the closest person I've come across that sounds in similar situation. Others seem to have much worse symptoms; what I have is horrible enough; I have a lot of empathy for those who suffer so much more. Thank you for your help so far! X

[Hidden]

Some people recommend lidocaine cream, which is a local anaesthetic you get on prescription. It helps if you have a sympathetic GP. Although mine has little knowledge/understanding of my condition, she is willing to make referrals and prescribe based on information I've researched online.