Vaginal burning / No STDs or other infec. / Possibly Vulvodynia...HELP! Watch

tinkerbelle2
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Hey guys, i've posted on several health forums but haven't had any feedback. This a bit of an embarassing condition! It is a bit of an essay so bear with! Apologies for being graphic ...

I first started having what can best be described as a burning feeling just inside my vaginal opening and the vestibule at 17. I am now 21.

I don't remember any obvious trigger but in that year i began the contraceptive pill (Yasmin I think? ) , Had thrush for the first time and Had cystitis/urine infection. I also lost my virginity that year but the irritation had already begun.

I don't know if any of those things or the combination of them could have contributed to the offset of vulvodynia.

(If you aren't familiar with vulvodynia, it is a chronic burning feeling in or/and around the vulva and vagina with no infection or obvious cause present. It can be constant or triggered)

One gyneacologist wasn't 100% sure that's what it was but my GP thinks it is. I think it is because it describes all my symptoms.

Something must have disrupted my vagina because I was perfectly fine before. I didn't change my diet or start doing anything differently and any infections I had were treated and any irritation or pain had been cleared up which is why it is so strange. Now having a pain-free vagina that I used to take for granted seems a luxury!

I finally sought help after suffering in silence and got referred for a gyno appt. I thought they were the experts and were bound to sort me out, but no! Turns out not many people know about this condition.

I have always been careful when it comes to sex so I wasn't surprised that when I've been tested for every STD under the sun several times, had blood tests etc. everything comes back fine. When the sexual health nurses and my G.P examined me they always thought everything looked normal and health except one time they said it looked a little red and 'angry'. There is no unusual discharge or smell (Ew!)

I was prescribed Gabapentin but it did little or nothing to alleviate the pain. I took it for about 6 weeks but had to stop as it was giving me severe headaches and slightly blurred vision (it is a major drug used to treat epilepsy! ) I had been told that it was brilliant for some and didn't work so well for others. Am now awaiting my follow up appointment to see what other options I can try.

I am waiting for my second gyno appt. Bloody NHS!

Some days it is unbearable and other times it is just uncomfortable. It is rarely painless but being distracted helps. Also, sex is sometimes bearable and other times out of the question. I have been with my boyfriend for nearly 2 years and he is very understanding.

Luckily I am fortunate to not have any other health conditions and am appreciative of the fact I am in good health generally.

I have tried many creams to no avail. Some days I just want to scream and cut the whole area off! It is such a nightmare! Sometimes I feel quite depressed and can't sleep because of it.

Just wondered if any other girls have had a similar experience of vaginal burning or irritation? Or any treatments you have tried that alleviated the soreness, even just a little.


Things I do/have tried:

- Cotton undies only, none at night
- No tampons
- No condoms
- No shower products only aqueous cream
- Canesten,Vagisil
- Lidocaine
- rePhresh
- e45
- cetraben cream
- sylk gel
- ice cubes
- baking soda bath (I read it somewhere?!)


I would love to chat to someone in the same boat or that knows anything related to this. I am happy to give anything a go!
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daisydaffodil
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Hi *waves*

I've had very similar issues to you - I have the pain just at the entrance to the vagina, and have suffered with burning/irritation to the vulval area for years. Been seeing gynae regularly since I was 17, I'm now 22..

I'm going to be honest - what kind of pain do you get? This is maybe TMI but I find that there's a spot just at the entrance that is incredibly tender/burning, it feels almost as if it has been burnt or like how a raw blister would feel.. When they do swabs at the surgery I end up crying as its so sore!

I think I too tried everything that you have - canesten, antibiotic cream, cotton pants...

I've also tried -

- no thongs, just big granny pants or boxers
- regular airing time (which if you go knickerless at night you'll get anyway)
- scentless sanitary pads (bodyform or natracare only)
- Dermol shower wash
- Bepanthen nappy cream, this stuff is amazing. It gets everywhere but it's truly amazing. I used this nightly after surgery and it meant I had minimal scarring. It's got a strange smell though.
- salty water rinses - if very sore I fill a sports cap bottle with warm water/salt and pour it over as I wee lol.
- I hate aqueous cream, it burns like hell for me, I used to put a bit on and be desperately trying to rinse it off..

Unfortunately in my epxerience gynae doctors are very hit and miss. I've had 5 in total, only 2 have been in any way decent. My most recent gynae is lovely, very helpful, as was my previous one. Some of the others have been absolutely terrible and have said things that I know are absolute rubbish ("You can't have vaginismus if you haven't had sex" - untrue, but gynae thought it was!) .. Best advice is to always take your mum or a friend with you, or ask for a nurse to be present - generally, in those situations they're a bit better.

For me the vulval soreness has lessened dramatically after having a labiaplasty a couple of years ago however the vaginal pain shows no sign of going. I've recently been refered on for psychosexual counselling/treatment for vaginismus so we'll see how that goes. I've been told that lidocaine can help with intercourse but I see you've already tried that?

Have you heard of the Vulval Pain Society (VPS)? Google should point you to them. They produce a small handbook which can be really helpful, and provide some basic advice on having an examination without pain (smears without tears, they call it). The handbook's quite good - they do charge something, I think it's in the region of a tenner but it's interesting and has lots of different info

I do wish sometimes there was a bigger network for ladies/girls with these disorders!

I am being fitted with the mirena coil next month in hospital (under anaesthetic thankfully) so hopefully that will help. Gynae said it might regulate my hormones which might help the skin down below, not sure but willing to give anything a shot!
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JazzyJo
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5 months ago I had surgery for provoked vulvodynia. I seem to almost be cured now!

It took me 5 years to get to this point though, after a lot of pain. Keep persisting with suggestions the drs make and ask for a second opinion if your instinct feels something is wrong.

Also look on Facebook for private groups there are a lot of forums on there which have helped me immensely.
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Anonymous #1
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Hi,

I can sympathise, I have had a similar problem for about 4 years now. I've been told I have eczema down there, however nothing they've given me has helped, I have probably spent over £100 on prescriptions.

I've lost count of the number of things I have tried, the only thing that helps is wearing no underwear, which isn't really practical lol.

It's surprising how many women seem to have this problem, at least you know you're not the only one.
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tinkerbelle2
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(Original post by Anonymous)
Hi,

I can sympathise, I have had a similar problem for about 4 years now. I've been told I have eczema down there, however nothing they've given me has helped, I have probably spent over £100 on prescriptions.

I've lost count of the number of things I have tried, the only thing that helps is wearing no underwear, which isn't really practical lol.

It's surprising how many women seem to have this problem, at least you know you're not the only one.
Bless you, it is so bizarre and frustrating isn't it. And upsetting.

My gp originally thought it was excema too as the skin did seem a little dry but I don't think it is that. I think maybe having thrush or a uti in the past or both has left my vaginal nerves hypersensitive. Or maybe the vaginal glands are just constantly inflamed. I don't think it is an allergy or anything or diet related.

It is surprising! Hopefully the more we speak out about it , the more we raise awareness and the closer we get to finding a reliable treatment for all women.
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tinkerbelle2
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Thank you so much for replying girls!

Daisydaffodil - I feel your pain! Now you've said it, my pain is definitely more severe at one or 2 points. It almost feels wounded or like acid has been poured there. Other times it is a dull ache.

Jazzyjo - So glad to hear you're doing better! Is it completely cured now? As my pain is more unprovoked and slightly inside I don't know whether surgery would be an option? I am looking into botox injections! My next gyno is in November so will see what they say :/

Please join this site - vulvodynia support forum - if you want to chat more, there are so many women on there and many of them have found a cure, it's really helping me.
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user1638699
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Slippery Elm powder one teaspoon-ish, mix with a little water into a paste, apply as much as you can internally & pat on outside. wear a pad to bed to keep it there. you will find it so much better it the morning. it helps heals damaged tissues, reduces inflammation & swelling. Excellent for stomach problems instead of proton pump inhibitors i.e. omeprazole etc

If the above doesn't work try medical grade manuka honey, same process. buy at the chemist or google & get free sample tube.
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Lucyj1991
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Hi I realise you posted this a long time ago but could I ask which hospital and doctor you had your surgery at?? Thanks !
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Lucyj1991
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(Original post by JazzyJo)
5 months ago I had surgery for provoked vulvodynia. I seem to almost be cured now!

It took me 5 years to get to this point though, after a lot of pain. Keep persisting with suggestions the drs make and ask for a second opinion if your instinct feels something is wrong.

Also look on Facebook for private groups there are a lot of forums on there which have helped me immensely.
Hi I realise you posted this a long time ago but could I ask which hospital and doctor you had your surgery at?? Thanks !
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tinkerbelle2
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(Original post by user1638699)
Slippery Elm powder one teaspoon-ish, mix with a little water into a paste, apply as much as you can internally & pat on outside. wear a pad to bed to keep it there. you will find it so much better it the morning. it helps heals damaged tissues, reduces inflammation & swelling. Excellent for stomach problems instead of proton pump inhibitors i.e. omeprazole etc

If the above doesn't work try medical grade manuka honey, same process. buy at the chemist or google & get free sample tube.

Thanks so much for your reply! This was two years ago I originally posted but unfortunately I'm still not cured of it..however I'm not in constant agony and I either have developed a higher pain threshold or the burning had decreased a little - I'm not sure! Will try out the slippery elm and Manuka honey as not tried those before! Thanks!
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tinkerbelle2
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(Original post by Lucyj1991)
Hi I realise you posted this a long time ago but could I ask which hospital and doctor you had your surgery at?? Thanks !
Hey, I know it wasn't me you were asking as I've not had the surgery but I still have it and I'm assuming you are suffering from a similar thing, so feel free to message me if you want to chat! And if you haven't signed up to the vulvodynia support forum then definitely do, I've learned so much from it! A lot of women on there have successful surgery stories if that's something your considering.
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Lucyj1991
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(Original post by tinkerbelle2)
Hey, I know it wasn't me you were asking as I've not had the surgery but I still have it and I'm assuming you are suffering from a similar thing, so feel free to message me if you want to chat! And if you haven't signed up to the vulvodynia support forum then definitely do, I've learned so much from it! A lot of women on there have successful surgery stories if that's something your considering.

I signed up to the forum but it said I would get an activation email and I never did so I can't login!

I've seen lots of people talking about surgery, mostly from America. The only people I've see from the uk are in Birmingham. None of my doctors have ever mentioned it. What treatment have you had ?
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tinkerbelle2
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(Original post by Lucyj1991)
I signed up to the forum but it said I would get an activation email and I never did so I can't login!

I've seen lots of people talking about surgery, mostly from America. The only people I've see from the uk are in Birmingham. None of my doctors have ever mentioned it. What treatment have you had ?
Oh no, that's annoying! You can use my account if you want?

None of mine have either but when I did mention it to one they said for my type it probably wouldn't be worthwhile because of the fact that mine is unprovoked not provoked. They seem to recommend it more for the provoked, triggered pain in a specific area. I'm not even sure whether it's something they'd even offer on NHS - *******s!

I've seen a dermatologist and a physiotherapist. Both helpful and have helped manage pain but not cure as yet sadly... Still hopeful though. I still haven't found out yet whether mine's a skin / muscle or nerve thing or a combination of the three?! Dermatologist and physio told me different things. It's such a mysterious condition! No one seems to know anything about it for sure. Anyway, I've come to terms with the fact it may be something I have to live with... Recently it's been just about bearable thank God.


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Lucyj1991
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(Original post by tinkerbelle2)
Oh no, that's annoying! You can use my account if you want?

None of mine have either but when I did mention it to one they said for my type it probably wouldn't be worthwhile because of the fact that mine is unprovoked not provoked. They seem to recommend it more for the provoked, triggered pain in a specific area. I'm not even sure whether it's something they'd even offer on NHS - *******s!

I've seen a dermatologist and a physiotherapist. Both helpful and have helped manage pain but not cure as yet sadly... Still hopeful though. I still haven't found out yet whether mine's a skin / muscle or nerve thing or a combination of the three?! Dermatologist and physio told me different things. It's such a mysterious condition! No one seems to know anything about it for sure. Anyway, I've come to terms with the fact it may be something I have to live with... Recently it's been just about bearable thank God.


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Could you send me a link to the forum? Maybe I'm looking at the wrong one or something.

I have seen so many doctors! I also saw a dermatologist, dr Derrick at brighton - she was nice and knowledgeable but she didn't really tell me anything I didn't already know and she just told me to get a referral from my GP to q phsycosexual counseller and a physical therapist. I had exactly the same that a physio told me it was all my muscles and the dermo said something else! I'm inclined to believe the dermo as the physio was no help and all she did was tell me to listen to a relaxation MP3. Who's your physio?

I think mine is provoked with a bit of unprovoked as well, I think I'm thinking of surgery as a miracle cure because I feel like I've tried everything else and it's still not something that's bearable!

I get paranoid that everything is all linked, I have a bad back and I hurt my coccyx when I was a kid so I get paranoid maybe that caused it !
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tinkerbelle2
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http://vulvodyniasupport.forumotion.net



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tinkerbelle2
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OMG I saw Dr Liz Derrick too! She was the first person I saw that actually seemed to understand and know what she was talking about?

The PT I saw was at the Hove Polyclinic and she was called Lucy?


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Lucyj1991
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(Original post by tinkerbelle2)
OMG I saw Dr Liz Derrick too! She was the first person I saw that actually seemed to understand and know what she was talking about?

The PT I saw was at the Hove Polyclinic and she was called Lucy?

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Yes she wanted to refer me to Lucy but she couldn't because I live outside of Brighton now :/. Is she good? I could see if I could see her privately.

Was it dr Derrick you spoke to about surgery? She was knowledgeable but she also said she didn't want another appointment with me really so from that I got that there was nothing she could really do. Have you seen her more frequently?

I'm Hoping to see someone called Leila frodsham in Kent who is chair of the phsycosexual institute and online it says she deals with vulvodynia.

Have you seen any other good doctors ??
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tinkerbelle2
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Ah I see, that's such a pain!
Lucy was really good I thought, I had about 5 sessions. Unfortunately I was ill so cancelled an appointment and then accidentally missed an appointment then I just let it slip away but I really should've carried on. She taught me some really helpful exercises but I'm still not sure my thing is really a muscle thing?! I don't know what the hell it bloody is! But as you said you have a suspicion it's linked to your coccyx / back pain, I would recommend giving it ago. I will warn you, she does kind of erm, get right in there and wiggle about (sorry, TMI!) which can be really uncomfortable (both embarrassing and physically) but she was so nice and down to earth she made me feel really relaxed.

Yeah same with me about Dr Derrick, she said she didn't feel like she needed to see me either! Maybe she feels there's nothing more she can do for us though? She said did this experiment thingy on my arm and said I had 'dermatographic skin'?
I can't remember who told me they didn't recommend surgery for me, it might've been her?

Nope, the rest I've seen have been a bit crap!

Let me know how it goes with the lady in Kent if you do end up seeing her!






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tinkerbelle2
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*see me AGAIN either I meant


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Lucyj1991
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(Original post by tinkerbelle2)
Ah I see, that's such a pain!
Lucy was really good I thought, I had about 5 sessions. Unfortunately I was ill so cancelled an appointment and then accidentally missed an appointment then I just let it slip away but I really should've carried on. She taught me some really helpful exercises but I'm still not sure my thing is really a muscle thing?! I don't know what the hell it bloody is! But as you said you have a suspicion it's linked to your coccyx / back pain, I would recommend giving it ago. I will warn you, she does kind of erm, get right in there and wiggle about (sorry, TMI!) which can be really uncomfortable (both embarrassing and physically) but she was so nice and down to earth she made me feel really relaxed.

Yeah same with me about Dr Derrick, she said she didn't feel like she needed to see me either! Maybe she feels there's nothing more she can do for us though? She said did this experiment thingy on my arm and said I had 'dermatographic skin'?
I can't remember who told me they didn't recommend surgery for me, it might've been her?

Nope, the rest I've seen have been a bit crap!

Let me know how it goes with the lady in Kent if you do end up seeing her!






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Do you know the surname of Lucy?

I know it's so annoying not knowing what it is, there should just be some kind of test and some kind of fix!! It's ridiculous.

Yeah dr Derrick said I was that dermo graphic thing too, she also said mine was mostly provoked but I think she's wrong because I do get unprovoked as well. My gp has just given me lidocaine and amyttiptiline - lidocaine is rubbish and I've tried meds before so I'm not holding out much hope! I just need some kind of miracle cure! Are you just not doing anything at the moment then?
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