Things I have tried so far...

So I've had this shit for 5 years and it hasn't gone away on its own so I decided screw it i'll use my V as a guinea pig for experiments of pain relief!
I'm going to sample some different things to see what works and what doesn'tt!!! This is my personal list so what works or doesn't work for me may do the opposite for you, but just thought i may as well try and cure myself while I wait endlessly for doctors appointments! I will edit the list as I go and update on progress. I will try treatments for minimum of a week and meds for at least a month or however long the doctors recommend unless I experience severe side effects.

Just so you know, I have had many long periods of not using any creams or taking any meds to give my v a break and there was still no improvement, so don't worry

Amitriptiline (antidepressant used for pain) ✓ - I began at 10mg and increased gradually. After about two weeks at 25mg, I noticed it seemed to dull the pain! So that was positive. But, then it seemed to wear off after a while. I stayed on them for 4 months and was up to 75mg but i was getting very tearful and depressed so me and doctor both decided it probably wasn't going to help much, so i started weaning myself off it going down 10mg a week. Am now down to 10mg again and will be stopping soon.

Gabapentin 300mg (anti convulsant used for neurological pain) ✓ - I tried it twice. First time I gave up after 3 weeks as there was no noticable difference. Second time I figured I should really give it longer to work so I was on it 8 weeks - not good for me, I had slightly blurred vision and bad headaches. I did not feel well at all. But don't let that put you off, everything is worth a try as people's bodies respond to things differently!

Balance activ gel ✓- This is a PH balancing gel often used to treat BV. I gave it a go as i thought my pH could be a bit off balance, it did actually seem to soothe me a bit.

Benadryl and lotradine (antihistamines for allergies) ✓- does help a little which is interesting

Canesten (oral tab, pessaries, cream containing clotrizamole & hydrocortisone) ✓ - Oddly, recently I had thrush and when I used a pessary, both the thrush AND the V went away? The thrush stayed away, but the V was back in 3 days. So a few times I've used Canesten creams and pessaries again but no relief.

Vagisil ✓ - As my V personally doesn't really ITCH, vagisil does nothing.

RepHresh ✓ - This is a gel to balance your vaginas pH. It actually made me kind of sore!

Lidocaine gel and spray✓ - One helped and one didn't.  No matter how much of this I used, it did not numb me at all! However, weirdly,  I tried XYLOCAINE, which also contains lidocaine and is used to numb gums, and that actually does numb me for about an hour. Not long but better than nothing.

Yoghurt ✓ - Both eating this daily, and even inserting a little inside vagina (Sounds so gross and weird) is actually quite soothing and definitely reduces the pain for me.

Cetraben ✓ - Again not a cure but mildly soothing.

E45 ✓ - Same as above.

Sudocrem ✓ - At first it seemed to really help but now makes no change and I don't like the thick, unbreathable texture of it.

Sylk ✓ - This gel is good as a lube during sex but made little difference to the unprovoked burning.

Aqueous ✓ - I use this in the bath and to wash with and find it now leaves me less irritated than soap, even though soap used to be fine. I really recommend this to use in place of your shower gel/bubble bath.

Timodine cream - no real change and seemed to irritate a little

Tea tree oil (diluted) - Stung at first and made me feel kind of tingly and fresh down below but didn't really affect the pain

Coconut oil -smells lovely. I applied a small amount to the sore area once a day for a week, then I ate a teaspoon for a day. Didn't irritate at all but didn't seem to help either


YET TO TRY!:

Oestrogen cream/testosterone cream for hormone imbalances

Lyrica

Pregablin

Noritryptline

Low oxalate Diet,ant candida diet? alkaline diet

Physiotherapy

Dermatologist

Acupuncture

Botox

Nerve block

Vestibulectomy (  ) *eek*

FeeL free to add comments, opinions or post own lists x

I just ordered some Ketoprofen (Orudis) suppositories, I will update after I try the treatment.
My doctor did not believe me, but I swear I have internal inflammation of the vestibule.

mary jane wrote:I just ordered some Ketoprofen (Orudis) suppositories, I will update after I try the treatment.
My doctor did not believe me, but I swear I have internal inflammation of the vestibule.

Ah cool, let me know how it goes! I've began to not always listen to doctors, often they seem to know a little bit of everything but not a lot about specific things, if that makes sense.

You have a lot of stuff there that has nothing to do with vulvodynia. Monistat and diflucan are for yeast infections. Do you have yeast? If not taking stuff just to try may make your problems worse or make it drug resistant so when you actually do have yeast the drugs wont work or take longer to work. I wouldn't just try stuff unless its been proven you have it.

Alana3 wrote:You have a lot of stuff there that has nothing to do with vulvodynia. Monistat and diflucan are for yeast infections. Do you have yeast? If not taking stuff just to try may make your problems worse or make it drug resistant so when you actually do have yeast the drugs wont work or take longer to work. I wouldn't just try stuff unless its been proven you have it.

I know what you mean but I have got to the point where I would try basically anything! I have no idea what is going on there. I have read a few women say yeast treatments seemed to help even though yeast didn't show up in swabs so anything is worth a try!

Just be careful I had a doc overprescribe and I got a drug resistance so when I do get yeast now its hard to treat (and they come more often) and bv which was gross. I'd find a specialist as much as I know none of this is in anyone's head a lot of people think takint stuff works when it doesnt (placebo effect). Dont get desperate I'm cured after finding a specialist in vulvodynia I'd say go that way and see if you cant find relief there rather than over medicating and throwing stuff at something you don't know for sure you even have. Its like treating yourself for hiv when all you have is thr flu theyre similar symptoms different treatments.

Thank you! It just takes so long to get seen over here, we have a free health service, which is a great idea but everyone has to wait. I currently wouldn't be able to afford private healthcare although I'm sure my parents would pay if that was the best option. I'm trying to find out when my next gyno appt. is. I'm not sure whether there are any vulvodynia specialists near here there could be in London. I'll see what this gyno suggests and then see from there. At the mo I'm feeling that this feels more like a skin thing. The sides of the skin inside me feel like acid has burnt me and it does look red.

Yeah, I would still wait, you could aggravate your problem worse by adding things to your diet/meds. Try a baking soda bath, it def can't hurt and brought me relief. Just be careful all I'm saying, I understand you want relief, but you can also make things a lot worse which makes it harder and more complicated to treat.

Tinkerbelle, I live in London and am about to get a referral to St Mary's vulval pain clinic. I will update ANY progress for you girls.
There is also a doctor called Miss Wendy Reid at the royal free hospital in London who also attends some meetings organised by the Vulval Pain Society. she also specialises in Barthollin gland surgery

sites.google.com site/londonvpsg/meetings

Hi Tinkerbelle - in my experience the canesten cream and pessaries made my pain so much worse. If you use it when you don't have thrush i think it can sensitise your vulva. So please be careful. I eventually steered clear of any topicals and used baths and icepacks for temporary pain relief.

Its great you're so focussed on finding a treatment that works for you - i hope you find it soon.

Dear,
You better be hesitant to put lots of things on your vulva. Please remember that ph balance is different on vulva than the other parts of your body. So any interruption may cause serious harm.

Thanks for replying ladies and being so caring

Don't worry I'll be careful. I have my 2nd gyne appointment on 15th November so I will ask if they think it would be an idea to test for different strains of yeast.

Thanks loulou & burningturning, i think ill avoid any yeast related stuff then. I can get motivated to go to town I'm gonna grab some oatmeal!

Maryjane - Good luck with your appointment! Let us know how it goes.  If i have no luck in brighton ill be coming up there! I need to look up these glands as I think that may be where the problem is! Xx

No significant improvement as yet girls! Plenty more to try though

I would try te benadrly (antihistamine). I only say that because you don't put it on  the vagina. Creams are scary to me and its to risky considering we have no freakin clue what's going on. The benadrly is just a pill has really nothing to do with ur girly parts but if it is a skin thing or imflammation problem it could totally help. I went to the er a few weeks back and it was a savior to me! Didnt take it completely away but definitely helped. It may not help but it won't hurt you like some  weird cream ya know.

You're gonna have to give it like 3 months to notice any improvement on anything you do

Thanks lauren! Gonna try it out :-)

Did you try organic pads/tampons? It can be a HUGE issue!

Ordered some pads! they're called natur care or something. ATM it's pretty sore so I want to avoid tampons unless i have to *shudders*

omg I just got these today at whole foods- heres hoping!  

I do like the natra care pads but they have made no difference really :/ how have you found them alana?

I dont get periods anymore cuz of my endo they stopped them but I hated them cuz they made a lot of noise haha

i still often use them on my period but i don't think it makes a difference tbh! x

I switched to cloth pads, at least when at home. A bit messy and labor intensive, but I found them much less irritating than Any disposable pad, even natracare, which is the best of them.

Antihistamines make me much more comfortable and help me sleep during a flare.

That's interesting kimkat ! i wonder what the link there is...