A few questions...some advice please?

Hi ladies,

Just a few questions for you.

1. How do you find out if you have a chronic yeast infection? I have taken Fluconazole/Diflucan for 6 weeks with no success and all swab tests have been negative.

2. I don't know if I have vulvodynia. My main problem is itching, but I BURN leading up to my period, especially if I do not get my period. My cycle is extremely irregular.
It feels like itchy stinging nettles are coming through my skin from the inside out. Is this vulvodynia? I have no pain during sex. The problem is all external, inflammation running from my vestibule all the way up to either side of my clit.

4. Are "vulvodynia" specialists really any better than regular gynos? I've been to a vulval dermatologist who was totally useless and told me I need councilling! !

5. What is the 'safest' and most effective vulvodynia drug? I work in a pharmacy and know that Lyrica is bad news, and both it and Endep makes people turn into walking zombies coz it makes you tired.

6. The last doctor that biopsied me (biopsy shiwed only non-specific inflammation) looked at me under a magnifiying glass and said she could see tiny yellow-white dots all over the inflammed area. Did anyone else have this?

Sorry for the 101 questions lol. Any help would be much appreciated!

Why do you say Lyrica is bad news?

Now I know it has helped a lot of women on here, but I am really concerned about having to take it. A GP gave me a script for it and 3 pharmacists shook their heads and said NOT to take it unless I OFFICIALY get diagnosed with real vulvodynia.

It makes you tired and lethargic as all hell. It can give many people constant nausea and vomiting,  hallucinations,  tremors in your hands and legs, numbness and tingling throughout the body, difficulty and pain while urinating... and these are all the more common side effects. I see so many people come into my pharmacy with these problems.

The worst case I saw was a woman who developed a terrible peeling burn-like rash from Lyrica.

I know it does work for many people but seeing as I can't even take Phenergan without feeling like I've been hit by a bus for the next 3 days I am a bit worried.

My symptoms include nausea and vomiting on an everyday basis so I can't afford to feel more fatigued than I already am.

Wow! Thanks for the info.

Look up the side-effects of Lyrica for yourself... it is pretty scary. I have an uncle who takes it for chronic back pain, he sleeps all day long, he says it feels like it sucks all the energy out of him.

Lyrica saved me be careful scaring people off a drug that could help them. If We a ll looked up side effects to drugs we would all have something to be scared about. Lyrica is a common drug and one that works for many people

I work 4 days aweek with 4 children and sleeping still doesn't come easy and I don't just take lyrica sorry but women's well being and pain free is at utmost importance. I see the best vulva specialist in the country and lyrica is the first drug she recommends

If I can get my new dr. To prescribe it, I will be trying it!! I will try anything to be pain free. If I CAN't tolerate it, then I can check out my other options. I have heard of many success stories too (Zarli, you are one of them

I'm not trying to scare people off it, like the Pharmacists said, if it is REAL vulvodynia and you have been properly diagnosed, it's all well and good, you are taking the right drug for your diagnosed condition and need it to get better, and have to endure the side-effects that go with it in order to recover.

In my case, I havn't even been properly diagnosed and I'm not even convinced vulvodynia is what I have considering since my problem started I have had extreme nausea, fatigue and vomiting every single day. Are these symptoms usually accompanied with vulvodynia? My main problem is itching,  not pain.

Im just getting so angry that these incompetent doctors are throwing random drugs at me when there is a high chance they won't fix the problem and a high chance that it will make me even sicker.  The stupid doctor that gave that gave me the script for Lyrica admitted she had no idea what my vulva issue was, and knew how sick I was yet prescibed me the drug, despite the fact that taking it could cause me to tear the lining of my stomach and cause internal bleeding or a stomach ulcer, which the Pharmacists I work with (one who is a qualified doctor but chose to become a pharmacist instead)
informed me of and advised me not to take it, especially considering I don't have "typical pain".

I was just saying what I have personally seen of the drug from the many customers I deal with and it has turned me off the drug. I would take it if I was properly diagnised and there was a guarantee it would help, but at this stage I'm too scared because the last drug I got given had me vomiting blood and I ended up in hospital.

Needless to say I am extremely weary and a bit paranoid! I just wanted to know which vulvodynia drug has the least horrible side-effects, I can't afford to be any more tired and fatigued than I already am. I don't mind a drug that knocks me out snd helps me sleep, its the aftermath the next day I worry about and the overall side-effects.

I see you are in Australia Zarli, who is your specialist? I am not getting anywhere with the supposed "vulva specialists" I am seeing. Lol maybe I need to see your doctor?

Hate to break it to you but there are no guarantees. I took it and it didnt work for me so I got surgery the odds for my surgery were 65-98% better. I was willing to take the risk but there wasn't even a guarantee with that.

My specialist is at the Womens Hospital in Melbourne., her name is Angela Chia. My pain specialist was also amazing he deals with nerve pain and lyrica is the number one drug. I don't think your problem sounds anything like mine. You should keep researching other women's stories on here. I personally believe there are many types of vulvodynia and yours might need a different treatment. You are not alone and you will find something that works for you.

Thankyou Zarli, very much appreciated.

The Melbourne Clinic is my next destination if I don't get anywhere with the Gyno I am seeing in a few weeks. I have heard nothing but fantastic things about the specialists at the womens hospital.

Is Angela a Gyno or a Dermatologist?

From what I have heard the specialists there do not mess around, a lot of people say the doctors there can diagnose most patients straight-up! And they say the doctors are actually very caring too!

Angela is a vulva pain specialist. You can get referred to her by your GP or a pain specialist. If burning and itch is your biggest problem I would look into amiltriptilyn. I know you are wary of drugs but that particular drug has worked for a friend of mine with vulvodynia that had constant itch. Amiltriptilyn will make you very tired for the first few days but that wares off and the side effects are mostly constipation. Try not to read all side effects just get the common ones. My experience with women trying drugs for vulvodynia is that they give up too soon. People will have rare reactions to drugs but that is a risk you have to decide to take. My pain was so bad and so constant that I would have tried anything. Its a very personal thing. Its your body you do what you think is best for you.

Just my 2 cents... I've been on lyrica twice (once for 6 months) and now (been back on if for 3). I hated it the first time (weight gain a big issue) but love it this time. Virtually no
side effects, no weight gain and I can honestly say it was life saver. There are a lot of pharmacists and doctors out there who hate it.. But they haven't had to deal with the excruciating, intolerable, embarrassing and debilitating pain that we are all subject to (in whatever way, shape or form).

I would highly recommend it IF your doctor chooses to prescribe it. My other piece I advice is act fast... The longer you wait to start treatment, the harder it is for your nerves to recover. Just get on to seeing the right people as quick as you can.

Let us know if you do start on lyrica.. I wish I has talked to a group of girls like this so I could have been aware of the side effects more. All the side effects are controllable... Even the tiredness. You just change up what time of the day you take it. I have also been on amitriptyline but found it impossible to be on. It totally weighed me down. Zarli is right though, it is the first like of treatment for V, and that's because it works! Xxx

Hey Georgia,

I will definitely try it if the specialist I go to in a few weeks recommends it. My main problem is itching, no straight-forward pain...would Lyrica work for itching?

So far the doctors don't think I have Vulvodynia because I have so many other symptoms going along with my vulva problem...they don't know if it is all related or whether it is 2 separate issues, but given that it all started at the same time I believe they are related. I'm even going to be having an Endoscopy and Colonoscapy to rule out Chrones disease ect.

How did you go about not having horrible side-effects the second time round? Lower dose?

I have had this problem for a year now and am not getting anywhere.....I have not stopped seeing doctors since it all started. I am acting as fast as I can....waiting to see specialists is ridiculously long.

I have gotten so much info from this site, I am so glad I joined.

Hey Georgia,

I will definitely try it if the specialist I go to in a few weeks recommends it. My main problem is itching, no straight-forward pain...would Lyrica work for itching?

So far the doctors don't think I have Vulvodynia because I have so many other symptoms going along with my vulva problem...they don't know if it is all related or whether it is 2 separate issues, but given that it all started at the same time I believe they are related. I'm even going to be having an Endoscopy and Colonoscapy to rule out Chrones disease ect.

How did you go about not having horrible side-effects the second time round? Lower dose?

I have had this problem for a year now and am not getting anywhere.....I have not stopped seeing doctors since it all started. I am acting as fast as I can....waiting to see specialists is ridiculously long.

I have gotten so much info from this site, I am so glad I joined.

I'm not 100% sure about the itching. Some research says nerve pain isn't typically itchy and others put it down as a text book symptom. I get really itchy pubic hair (my only symptom now) and mine is definitely nerve related. You might not want to answer, but where exactly does it itch? (Sorry, could be TMI here...). If it's on your pubic hair, it's likely to be nerve related, if it's anywhere more mucous-y I guess it could be yeast? But you've probably gone down that route and been tested for yeast right? (Sorry I can't see the original messages so can't remember what you said!)

In any case, I'm not a Dr and Zarli's advice is spot on, there's nothing more valuable than a referral to a good gynae in this situation.

In terms of my dose of lyrica, I'm on a higher dose now than I was then - just because I want to hit it harder this time. I didn't get any relief from ami and thought I might need it stronger than last time. As i said, my only side effect really was weight gain last time so I'm just more careful about what I eat (I was pretty mental about anything I put in my mouth the first few months!) and upped the exercise and it's been fine. I was even able to lose a bit of weight. Although, I get a really bloated tummy for some reason. I think it's gas or something. But it's not a huge deal.

Everyone is different and reacts differently to meds, but just be totally wary of the potential side effects so you know what your looking for.

Lol there is no such thing as TMI on this forum! The itching and inflammation is all down either side of where my Labia majora meets my actual vulva if that makes sense, and goes all the way down to my vesibule/perenium area. It is not where any hair grows.
There are a couple of tiny tiny area of the vulva itself that are itchy too.

Yeah I have been tested for yeast about 20 times, I even had 2 biopsies which showed only non specific chronic inflammation. And I took fluconazole for 6 weeks.

However the more I read about yeast the mire suspicious I am about the situation!

The Gynae I am seeing in a few weeks has practiced in South Africa and Canada before he moved to Australia, so I am hoping he will have a bit more knowledge than your average Aussie Gynae. I can only hope.

Lol there is no such thing as TMI on this forum! The itching and inflammation is all down either side of where my Labia majora meets my actual vulva if that makes sense, and goes all the way down to my vesibule/perenium area. It is not where any hair grows.
There are a couple of tiny tiny area of the vulva itself that are itchy too.

Yeah I have been tested for yeast about 20 times, I even had 2 biopsies which showed only non specific chronic inflammation. And I took fluconazole for 6 weeks.

However the more I read about yeast the mire suspicious I am about the situation!

The Gynae I am seeing in a few weeks has practiced in South Africa and Canada before he moved to Australia, so I am hoping he will have a bit more knowledge than your average Aussie Gynae. I can only hope.

I used to get a stingy, eally painful raw feeling all around there and it was often super red and angry looking and I was sceptical of how a nerve med could help that sort of pain, but low and behold it did. So I guess was in the end nerve related!

Your gynae will fingers crossed have some answers... Definitely recommend lyrica over amitriptyline as it works much much quicker (if they don't give you both). Your lucky in Aus you don't have to beg for the meds you want like we do here in the UK! (I'm Australian but have lived here 6 years!)

Good luck and let us know how it goes!