New to the support group and have just been diagnosed

I am so glad to have found a forum of women who understand and have experienced symptoms similar to mine.

This is my story so far, I have only just been diagnosed with provoked vulvodynia with a side of dermatitis after experiencing symptoms for 14 years. Yep, that's not a typo - FOURTEEN years.

During this time, I have been on an emotional rollercoaster. The amount of times that I cannot count, I tried to get help from various GP's and/or specialists. I can understand that it is a hard thing to diagnose, but I was only referred to the right specialist 14 months ago. I had my appointment with them yesterday.

The symptoms that I have suffered from over this time are: itching, burning, soreness, pain (stabbing like knives), the feeling that my skin has been cut, tearing of the skin on spots over the whole area of the inner skin of the vagina and around the anus, feeling like acid has been poured over the area, dryness, pain during sex on the inside and outside of the vagina, not able to use tampons due to pain, feeling like I have a urine infection or thrush but results coming back clear.

I am now 32, I have been suffering symptoms since I was 18. I was never really able to use tampons from the beginning due to pain, but I just didn't use them and only started experiencing other symptoms around the age of 18.

I am married, to a man who is so understanding that I cannot thank my stars enough. Currently we would be lucky to have sex 1 -3 times a year because of the symptoms that I experience. We used to have oral sex but as time has progressed, our sex life has diminished into non-existence. I am hoping that the ideas the specialists gave me yesterday will work over time and we will be able to start having some form of sex life in the near future.

What I have found with the medical industry while I have been trying to gain an answer for my issues is that each time I tried to gain an answer, I was swabbed for thrush, STD's and a bacterial infection each time and when they all came back clear, I was advised to do everything I could to eliminate perfumes and anything that might inflame the overly sensitive skin that I have compared to other women down there. Well, how many times can a person be told this before they start thinking, maybe it's all in my head, I just have to put up with it.

So over the years, other than this, I have been referred to a couple of specialists and the treatments below were prescribed:

- Gynecologist: during the appointment, the gyno looked over, took swabs and douched the highly inflamed area with vinegar to check for any cancer. The vinegar douche was both painful and embarrassing. After completing this, I was given suppositories for thrush and advised that the thrush has obviously worked under several layers of the skin, which I would never be able to fully get rid of by I would be able to maintain. I was also advised to review my diet for sugary/yeast items. I did all this, no change.

- IVF/Conception Specialist: I was sent to this doctor as my Husband and I have wanted to try and conceive a child for around 8 years. This doctor tested for thrush, STD's and any bacterial infections. He also took biopsies and while I was asleep for those, checked all the inner workings to ensure that there was no issues with conceiving inside. He tested my partner's sperm, which there are no issues with. The results from the biopsies of the skin taken from the vulvar where that they could see there is obvious inflammation but they could not determine a cause. As mine and my inner partners workings were fine, that was where this specialist advised that he could no longer be of assistance as it appeared to be a dermatological issue.

- Dermatologist specializing in Vulval issues: Again, swabs for thrush, STD's and bacterial infections, come back clear. Advised to use steroid cream, antifungal tablets, barrier cream and wash with aqueous cream. Didn't work.

Vulval Clinic at the Royal Women's Hospital in Melbourne, yesterday:
I seen both a doctor who got her boss to review the examination yesterday. She took swabs for thrush, STD's and bacterial infections but advised that they believed that I have provoked vulvodynia with dermatitis (acting as a red herring).
For the dermatitis I have been prescribed a month of steroid cream, use of aqueous cream as a substitute for soap all over the body and barrier cream to be administered 3-4 times during the day.

For the provoked vulvodynia, I was referred to the physiotherapist, who I was able to see the same day and she has explained the issue with the pelvic floor muscles and prescribed the use of dilators. I have a review with both the specialists in 4 months.

The issue with having problems in the vaginal area is that to discuss it is taboo. For many females, it is hard to work up to discussing with a doctor or asking for help, and each time you try to do that and feel like your issue is being swept under the carpet, the harder it is to gain the confidence to ask for help again.

I really don't know how my marriage has survived over the last 14 years, especially the last 6-8 where the sex has been pretty much non-existent. I feel bad for my husband, there have been times that I have told him that it would be ok if he wanted to leave me because I cannot be the wife that he deserves. The immense lows that I have felt during this time have been awful. Feeling like I am worthless, not a woman, not a wife, not able to have a normal marriage, not able to have children (which I yearn for), feeling anxious, not knowing if I would ever have an answer and anger and frustration. Anger and frustration at myself, at the medical system, at other people who have normal lives. At times, I felt like I was going insane. Insane because of the questions I couldn't answer or the physical symptoms of a unnamed monster I couldn't do anything to alleviate.

I can't tell you what caused it. I can tell you that I want to get rid of it or manage it though. I will try ANYTHING.

At the moment, while slightly relieved, I am scared and unsure. It hasn't been long enough to know if the doctors are right.
I hope they are and that soon I am able to write a more positive post

Hi and welcome,

Doctor are stupid,fuck them.

I used to have the stabbing pain and later the itching in 2013 .. so I empathise
Has anyone offered you medication at all? Lyrica is the best for nerve pain.

Personally I was never embarassed to tell anything to my doctors, I think we think too highly of doctors in general, they are people just like you and me. They get paid A LOT for their jobs, I don't care, don't tell me they don't.

There is a plethora of treatments to try, combinations of medication, lidocaine creams, lidocaine patch for local anesthesia, pelvic phisio, desensitization therapy (you can do it yourself), trigger point injections, and then the big guns like nerve blocks (more of a last resort).

do you now when your v started? what triggered it ?

I also had inflammation problems in 2013 ...It may be neurogenic inflammation.
Ever tried antihistamines? You can take atarax, some patients will respond to it. It treats anxiety as well as the allergy

mary jane wrote:Hi and welcome,

Doctor are stupid,fuck them.

I used to have the stabbing pain and later the itching in 2013 .. so I empathise
Has anyone offered you medication at all? Lyrica is the best for nerve pain.

Personally I was never embarassed to tell anything to my doctors, I think we think too highly of doctors in general, they are people just like you and me. They get paid A LOT for their jobs, I don't care, don't tell me they don't.

There is a plethora of treatments to try, combinations of medication, lidocaine creams, lidocaine patch for local anesthesia, pelvic phisio, desensitization therapy (you can do it yourself), trigger point injections, and then the big guns like nerve blocks (more of a last resort).

do you now when your v started? what triggered it ?

Hello Mary Jane,

Thank you for your response, I appreciate it.

I have been experience symptoms since I was approx. 18 and and I am now 32.
I can't pinpoint what triggered it. Like a lot of people, I and Drs. treated it like it was thrush to no avail.
I have started with treating the dermatitis with steroids and barrier cream.
The physio has asked me to start using the dilators, so I will attempt that as well.
I guess if the dilators don't work I might be prescribed something different.
I'm not currently experiencing a flare up as I haven't recently had sex or done anything else to affect it.

Wait and see how these treatments go

mary jane wrote:I also had inflammation problems in 2013 ...It may be neurogenic inflammation.
Ever tried antihistamines? You can take atarax, some patients will respond to it. It treats anxiety as well as the allergy

Hi Mary Jane,

I have not tried antihistamines - I might give them a go

KaseyT85 wrote:

mary jane wrote:I also had inflammation problems in 2013 ...It may be neurogenic inflammation.
Ever tried antihistamines? You can take atarax, some patients will respond to it. It treats anxiety as well as the allergy

Hi Mary Jane,

I have not tried antihistamines - I might give them a go

You should definitely try it !

I am reposting what I found on another forum:

Originally Posted by Rebecca___p View Post

"Hi girls, I've had this pain for as long as I can remember (I'm 17 due to the pain being sometimes unnameable and just made me so fed up nothing could be done). I've been to 2 gynaecologists 1 of which helped me out so much and can thank my treatment for. I didn't even realise I had this until he told me, and was shocked that my previous gynaecologist did not see this. Vulvar vestibulitis (aka vulvodynia) is caused mainly by having thrush multiple times, making the nerves in the vulvar more sensitive. He told me that he had a treatment and I was so happy. -I am easily susceptible to thrush:((-
He prescribed me Atarax (an anti anxiety medication) it has been succesful in treating my discomfort. He first prescribed me 10 millagrams as he wasn't sure how I would be with the side effects/will cure my VVS with this low dose, (which are just drowsyness but can be managed by taking in at night -I didn't get any of the side effects-) it helped out my VVS but not treated it completely (I only took this for 28 days). He then prescribed me a higher dose of 25mg (which I am currently on for 3 months till my next check up). If that has treated it I will have to take the pills for 6 months for it to go. However if I still have it I will have to move to 30mg. But he is so helpful and said either way we are treating it. I hope this helped girls. It's hard to find a good gynaecologist that knows what vulvodynia is and how to treat it well."

KaseyT85 wrote:

mary jane wrote:Hi and welcome,

Doctor are stupid,fuck them.

I used to have the stabbing pain and later the itching in 2013 .. so I empathise
Has anyone offered you medication at all? Lyrica is the best for nerve pain.

Personally I was never embarassed to tell anything to my doctors, I think we think too highly of doctors in general, they are people just like you and me. They get paid A LOT for their jobs, I don't care, don't tell me they don't.

There is a plethora of treatments to try, combinations of medication, lidocaine creams, lidocaine patch for local anesthesia, pelvic phisio, desensitization therapy (you can do it yourself), trigger point injections, and then the big guns like nerve blocks (more of a last resort).

do you now when your v started? what triggered it ?

Hello Mary Jane,

Thank you for your response, I appreciate it.

I have been experience symptoms since I was approx. 18 and and I am now 32.
I can't pinpoint what triggered it. Like a lot of people, I and Drs. treated it like it was thrush to no avail.
I have started with treating the dermatitis with steroids and barrier cream.
The physio has asked me to start using the dilators, so I will attempt that as well.
I guess if the dilators don't work I might be prescribed something different.
I'm not currently experiencing a flare up as I haven't recently had sex or done anything else to affect it.

Wait and see how these treatments go

Do you live in UK? Go see Wendy Reid, she sees lots of cases like yours, one of the best out there. For the dermatology aspect, there is Karen gibbon

Do you live in UK? Go see Wendy Reid, she sees lots of cases like yours, one of the best out there. For the dermatology aspect, there is Karen gibbon[/quote]

Hi Mary Jane,

No, I am in Australia. The Royal Women's Hospital here, including the vulval clinic, are meant to be very good.
I have another appointment with them in August.

Kasey

Hi please read my posts! It might help!