My story. My experiences. My life with Vulvar Vestibulitis.

Tyger Thu May 05, 2011 4:21 am

Hi, I'm Tyger, and I have Vulvar Vestibulitis. I should first say that this will be a long post. But even if nobody reads it, I feel it will be therapeutic for me to write. I'm so thankful I found these boards. For once I feel like I'm not alone.

For a lot of you, the details will differ, but the emotional journey is the same. The roller-coaster of hope and despair. Vulvar Vestibulitis (and any subtype of Vulvodynia) is such a damning condition. No easy cure. I often feel so angry and upset that it takes all my will power to harden up and pull myself out of the despair and self-pity of it all. The "why me?". I have to remember - at least it's not going to kill me. There are countless worse conditions out there.

So... my story. I live in Melbourne, Australia. 27 years old next month. I was diagnosed when I was 19 and suffering since 18. I’m not sure I have ever documented my history of VVS so honestly before, even to myself. I tend to be in denial about it. So this will be interesting. To write this story accurately, I have actually had to dig back through the archives on forums I used to use, where I would constantly and incessantly ask question after question in a hope that somebody could save me from myself. It hurts my heart to read the posts of that confused, upset 18 year old girl.

June, 2003: 8 years ago. I can't believe it's been so long... how depressing. I had started a generic Pill (Levlen) 6 months earlier, and then swapped to another Pill due to acne and headaches (Diane-35). Until now, I never made the connection between VVS and the Pill. Could they be related? At first, I contracted a UTI, which antibiotics cleared up within days. Then 12 days later, the urethral irritation was back and I tested positive for another UTI. But this time the antibiotics did not clear the irritation. Tests for everything (Chlamydia etc) came back negative. I described my irritation at the time as a “stinging-like sensation in the vaginal area at the site of my urethra that is constant throughout the day, flaring up especially in the evening”. As yet, there was no pain during sex. It seemed localized around my urethra.

Oct, 2003: Ongoing irritation. Diagnoses were tossed around like “Interstitial Cystitis” and “Urethritis”. I was referred to a Urologist, but my appointment was cancelled, and I never followed up on it due to the expense. I didn’t deem it debilitating enough to keep focusing on, I suppose. Sex did not hurt yet. Also I should note that the month following, I swapped my Pill again to Yasmin, which I've been on ever since.

May, 2004: The first signs of pain during sex – and hereon after I am forever changed. It began with a burning pain sensation during penetration, internal rather than external. Soon, it had developed into a sharp pain upon penetration that was increasingly difficult to ignore and lasted throughout sex. Sex was no longer pleasurable. I bundled myself off to the doctor again, but as my usual doctor was on leave, I saw another lady. To my distress, she was completely unsympathetic, and instead of talking to me, just threw me on the examination table and without any fore-warning, thrust a large speculum up my vagina and examined my cervix. Now this may seem an obvious course of action to many women – but I had not yet had my first pap-smear and this was completely foreign to me. I remember clutching my hands together and squeezing my eyes shut at the unfamiliar feeling, feeling nauseated and tearing up. Afterwards, she told me off-handedly that I had a yeast infection, prescribed me a 6-day cream solution (Canesten), and shuffled me out the door. Once in the corridor I felt dizzy and almost fainted – I remember running to the bathroom and lying on the cold tiles trying to collect myself and get some blood back to my head. It was horrible. I just hadn’t been prepared for that. So marks the first of many painful, frightening doctor office experiences. Still to this day, I get so anxious and worked up sitting in the waiting room before an examination. I get awful bouts of doctor anxiety when it has anything remotely to do with speculums. Just thinking about them makes me feel ill. It just hurts me so damn much. Sometimes, it’s all I can do not to head straight for the door and bail.

June, 2004: After the 6 days, the Canesten cream did not ease my pain, so I returned to the doctor and she prescribed me the Diflucan pill. However, a week later, still the pain persisted. “If pain persists, see your doctor”. Yeah right. I now laugh at that slogan. Back I went, and she did another swab. Some yeast was still detected, but apparently of a different type, and she brought out the big guns – a pill called 'Nizoral' (Ketoconazole), which is prescribed for 'deep mycosis' (a deep Candida infection).

August, 2004: Surprise surprise, no change to the sex pain. At this point, both my boyfriend and I are getting distressed. Follow-up swabs declared me yeast free. And here comes the first hand-ball of oh so many. I was referred to a Dermatologist who has a special interest in Vulvar pain. As a coincidence, on these forums today I just rediscovered her name: Josephine Yeatman. I don’t remember the particulars of this appointment – only that it was the pivotal moment when I received a name for my condition. Vulvar Vestibulitis. (I have to say, Josephine wasn't too sympathetic or tactful when giving me my diagnoses and telling me it would "go away once you have babies"). Many women with VVS talk about their reaction when they found out what they had. I don’t remember my reaction, because I believe I’ve probably blocked it out of my memory, or just had no idea what it meant for my life. I was in denial. I assumed there would be an easy cure. Josie prescribed me a low-dose antidepressant (Amytriptyline) to block nerve pain. I was told this would work.

October-November, 2004: I stopped taking the anti-depressant after a few months because it had no effect, the long-term use was giving me grogginess and nightmares. This is where recollections get hazy. I think a part of me was just deflating. Seeking treatments and specialists was SO expensive (no private health cover) and that restricted me so much. I simply hated spending all this time, effort, and hard-earned money for absolutely nothing. It was making me feel worse and more hopeless, if anything. At some point, I was handballed from Josie to another specialist. Ross Pagano. He is pretty much the VVS specialist of Melbourne so I thought I’d give him a proper go and be rid of this thing forever. I truly thought I could do it! Well – here is an account I wrote around that time:

“It’s been a while since I've posted, but I thought it was about time I popped in to see how everyone's dealing. After many months of pain, my specialist (who's treatments failed) referred me to ANOTHER specialist, Ross Pagano, who's supposed to deal with these cases exclusively. Cue another 6 months or so of waiting for a damn appointment. Finally it came around. First up, he inspected me with a 'q-tip' which basically means touches around your opening and in the vagina to see which parts hurt. Yeah - that wasn't a lot of fun! After that, he told me everything I already know. 'You have Vulvar Vestibulitis, there's not a whole lot known about it and treatment is ongoing and experimental etc'. Basically what my other specialist had said.

First treatment was Nizoral tablets, yet again… a strong anti-fungal that I had already taken before, but 'apparently' had not for long enough. He put in speculum in (cue extreme pain), and had a look with a special microscope, and told me that doctors just check for the usual culprits of a yeast infection, whereas often people with VVS often have a different kind of yeast infection that is actually embedded in the skin. The only way to test for this is to take a “scraping”. I never found out the result of that “scraping”, but either way I was put back on the Nizoral for a full month to kill ALL the yeast. So I did my second course of Nizoral, and upon my next visit, I was finally declared free of yeast. Hooray? Dr Pagano then started me on the anti-depressant Amitryptiline all over again. Woohoo. Cue more headaches, fatigue and low moods. This time, I gave the Amytriptiline a full 6 months to work it’s apparent “magic”. If it was going to make me feel like shit, I was going to give it a good effort. I upped the dosage in stages until I reached 75mg's a day. He told me not to exceed this. Well, of course, it had ABSOLUTELY NO EFFECT.

Then came his suggestion that I go see a NEW specialist called Marek Jantos, who “specializes in these cases and has a special physiotherapy class for it!”

Finally I clued up. None of these doctors were going to help me. They just like hand-balling me to the next one, until they’ve completely sapped my bank account. And each time I take their word for it and go to a new one, I have to tell my story all over again, and then they pump me full of *THE SAME* drug that the last one did, and wonder why it didn't work.”

Following this second failed Amytriptyline attempt, I opted to try biofeedback at the Women’s Hospital Vulvar Clinic, upon Dr Pagano’s suggestion. Marek Jantos is Sydney-based and I couldn’t afford to fly there for an appointment, so I thought I’d opt for biofeedback first. I signed up Vulvar Pain Clinic at The Women's, but as it was a while until my appointment, my regular doctor recommended acupuncture as a holistic method. I was ready to try anything at this point. Again, the treatment did nothing except further deflate my hopes and bank account. I'm all for alternative therapies, but this one did zip.

Biofeedback at the Vulvar Clinic was a joke. I only went to 2 sessions. The only thing I remember, was being handed a bunch of papers with hand-drawn diagrams of vaginas, and a crude explanation of how to “massage your vagina entrance and perineum with almond oil” nightly, to get your vagina “used to it”. I suppose I should have dedicated myself to trying it out. But it just felt like nobody had a cure, and nobody cared, and this was just a way hand-ball me so that I’d shut-up. My relationship was deteriorating, and the stress of this issue was making me hate myself and my life. I decided to turn my focuses elsewhere.

Dec, 2004: My relationship with my boyfriend deteriorated to the point where we broke up a week before Christmas. I had been with him for 3 years, and at age 20, it felt like a lifetime. I was completely lost and inconsolable. I had not wanted it to end. Of course, I am quick to blame VVS. In hindsight, there were other factors, but the VVS was the major instigator. Sex had become so unpleasant and upsetting, and I was depressed so often that it’s not surprising he didn’t want to be with me anymore. I am generally a very sexual being with a high libido... so I didn’t even recognize myself anymore. At the same time I didn’t want to admit that I didn’t know how to cure myself. I felt like a freak. I felt disabled. I didn’t want to admit to the huge “issue” in our relationship. Well, in the end I didn’t have to. It destroyed my relationship anyway.

A weird hiatus: Well… that’s the full extent of the treatment options I pursued. Not many, really. 2 tries with anti-fungals, 2 tries with an anti-depressant, and acupuncture. I don’t count the pathetic biofeedback attempt. But the last (and important) thing I’ll say about my journey, is that there was this strange period between 2005 – 2009 when I was having semi-regular sex (fortnightly), and I was able to do it without much pain at all, from what I remember. It was still "there", just not as for some reason. I could do all kinds of crazy positions I can only dream of now. It's odd, but I believe it was because I still had high levels of arousal and less frequent sex, so I'd tend to just "go for it" and I was able to suppress the pain. I'm not sure if that makes sense. I can’t explain it by any scientific means. I know this may be counter-productive for some, but in my case, stepping back and letting go of treatment obsessions was, in fact, the one thing that has offered me relief and solace so far. I couldn't go on letting the VVS rule my life.

Today: So, why am I here now? Well... for the last 18 months or so, the VVS has really been affecting me. Going on from what I said earlier... I think it's because sex isn't as exciting, spontaneous and lustful as it used to be. Now that I have been in a stable, loving relationship since 2007, we are over the "honey-moon period", and sex for any normal couple can slow down and be arduous at times. So for a VVS sufferer... well, I guess my mind can no longer suppress how much it's hurting. I place a lot of emphasis on sex...I'm determined not to stop having sex. I can get aroused occasionally, but a lot less frequently than is normal. I can't do any other position other than missionary. It's very boring and sad. I want to make it better for me and my partner.

My future plans: I have experimented lately with Lidocaine 2% gel ("Xylocaine" here), which I ordered online. I wanted to use it to numb me during sex. It hasn't worked. I apply it 20 mins before sex, but I feel no difference. I think I might try the 5% cream next, as some ladies say they've had success with it. As for proper treatment... well, my partner and I are travelling for 3 months, leaving in July, so I cannot afford any type of specialist treatment until after we return. When we return and I have the funds, I plan to contact Marek Jantos, who now does Melbourne visits, and pursue whatever he offers. I want to try Estrogen compounds. I may need to get off the Yasmin to see if that helps (really don't want to do so... cannot STAND condoms). Then, I guess its biofeedback. I can't imagine going through with surgery though, until after I have children perhaps. Some people say that childbirth fixes VVS completely. I am really nervous about getting back into treatment. I HATE being poked and prodded down there, it makes me so anxious. I also get so depressed when treatments don't work out - it's almost worse than doing nothing at all and ignoring it as much as I can.

So that is my story. All I will say is, remember to still live your life and don't let this condition rule you. There is more to life than VVS.

I would LOVE to hear from any and all of you. Advice, treatment options, experiences, just general chats. The one thing I've realised is how important support is, from women who really understand. Thanks so much for reading Very Happy

~Tyger.

Aussie Thu May 05, 2011 5:16 am

Hi Tyger,

Firstly, so sad to hear you have been suffering for so long. Unfortunately your story sounds so similar to many of ours here, I am sorry to hear of your struggles so far. I know too well what it is like to be shuffled around from doctor to doctor. However I hope I can offer you some help regarding Marek Jantos, and this time, I promise, it will be different.

Without his help I can honestly say I would not be where I am now. Read my story here I have provoked and unprovoked pain.
http://www.vulvodyniasupportforum.com/t300-new-here-been-suffering-for-9-months

I have posted about Marek's methods, and why it helps.

This is not to say, however I am 100%,. Treatment is costly and time consuming but so, so worth while. Marek now has a wonderful lady called Sherie working with him who is an ex vulvodynia sufferer. She was so bad, to use the toilet she had to insert a catheter to drain her bladder. Now she is walking around pain free wearing jeans and having sex as she pleases. So that just proves, recovery is possible. She had suffered for 8 years.

Since my first post, I have improved more. I can now have pain free sex about 85% of the time and I am about 65-70% better on the whole than I was prior to meeting Marek. In fact I wore jeans for the first time in almost a year the other day. I could feel them ( I am not sure how much sensation is “normal” now, after the pain) but it didn’t hurt.

I still have flare ups before my period, and I still have a constant daily pain level of about 2-3 but the improvement is remarkable.

With Marek, you will not feel like you are being prodded and poked, and if you prefer Sherie can do the internal work for you….they are both so gentle and reassuring.

I don’t think there is a cure but there is always, always improvement. Just takes time, and patients and persistence….you will get there I promise you. Sex will be come interesting and fun again….as long as you use lube Wink

Any good women’s health physio should help, if you find Marek too expensive. (but he is the best) Just call a few and ask if the have experience in treating high tone pelvic floor dysfunction and vulvodynia or vvs. I see one now once every few weeks just to go over the trigger points I can’t reach myself.

Hey if you want to give me a call send me a personal message and I will give you my number. I live in Qld on the Sunshine Coast.

Hope this helps.

Claire

Sarah001 Thu May 05, 2011 7:43 pm

Hi Tyger and welcome and wow Claire you're doing really well, an inspiration to all of us.

Tyger Fri May 06, 2011 12:13 am

Hi Claire (and Sarah), thank-you for your wonderful reply!

I’m so relieved to hear from somebody who has experience with Marek. I was dubious at first, because it sounded to me like he just treated vulvodynia, focusing on the muscles and the pelvic floor, rather than vulvar vestibulitis and the vestibule “stinging” that I experience. I suppose I figured that first I should try some more medical compounds before resorting to the whole dilator thing. I don’t really feel like I have trouble “opening up” when I have sex, there is no obstruction, it just really stings and hurts throughout. Then after sex, it stings inside sometimes up to a few days. It’s really horrible L However, the external areas don’t really hurt at all.

Anyway, I’m still planning on pursuing Marek. When I return from overseas in November I’m going to make an appointment for his next Melbourne visit asap, then save up while I wait for it to approach. I’m sure he’s knowledgeable about the different V-related conditions, so he’ll be able to alter my treatment as needed.

I just hope in the meantime this issue doesn’t get worse – I’ve been having a lot of trouble over the past fortnight, and not sure what has made it hurt more. My fingers and toes are crossed that it will be manageable until later this year when I can seek proper help.

Aussie Fri May 06, 2011 2:02 am

Hi Tyger,

From reading Marek's case studies it seems to me he has more experience in treating vvs specifically than vulvodynia (generalized) it seems most of the stories on his website are from women suffering from pain with sex and tampon use only. So I am sure he will be able to do great things for you, and show you the ways you can reduce the pain yourself.

I highly recommend intensive therapy but it is very costly. Some people recover quickly from just seeing him once a month though. I was not so lucky. It took 7 months of therapy with him to get to where I am at.

Perhaps just give him a call to talk things over first he is so calming and knowledgeable on the phone. It will put your mind at ease before you go traveling.

Glad to have helped Smile

Sarah: I am getting there....baby steps. xxxx

saskatownv Sat May 07, 2011 4:48 pm

Hi Tyger,

I read your story and have a few things to tell you so you don't feel so alone and hopeless.

I see you have tried a bunch of treatments and have had V for almost as long as I have. I want to tell you that even though it may seem like all of your visits to a bunch of different Dr's has seemed like dead ends, I assure you that with this condition it is very individualized and some treatments work for some women and others not and its good that you rule out things that dont work. I myself have seen several million Drs and am now with one who I feel has done the best for my V. We have tried a million types of Estrogen Creams and I am now currently on Ami (50 mg) and a new Estrogen cream and it has done wonders for me. I can wear jeans!

My sexual experience has been similar to yours over the past few years. I am married - but now separated bz of this stupid life that i / we live with when we have V. Sex was fun and exciting in the beginning and I felt I could power through the pain. When it got to the point where I was avoiding it after a few years and eventually the guilt and pressure (imposed only by myself - he is/was wonderfully understanding) of having to go through with it made me feel that i wasnt attracted to my husband anymore. I am in the middle of a separation and still am not sure if I fell out of love with him or if it was all in my head because having to have (boring-just because it was routine) sex made me think i had fallen out of love. So......I am going to live the life of a single woman. I understand my decision, I will miss him, he is my best friend, but the stresses and guilt I imposed upon myself was just too much to handle for me right now.

I wish you all the luck in the world! Keep on truckin!

Sally

noni Sun May 15, 2011 1:38 am

It just rips at my heart when I read the stories we ladies post on here. I can relate to so much of the emotional and psychological suffering I see in our story posts.

Doctors are very blase about this condition, well many of them, I cant paint them all with the same brush. From my experiences, I feel VERY alone and isolated as a result of Vulvodynia. The only people on the face of this earth who could possibly understand this type of suffering are others with chronic pelvic pain.

Its very discouraging when you can no longer wear trousers, ride a bicycle, or sit! Imagine being at a doctors appointment and he or she telling you to have a seat!!! It was a total nightmare for me. Or all the other times I was told that taking sitz baths would take the pain away. Oh you well-intentioned but ever-so-ignorant Nurse Practitioners Wake Up !! Burning, searing, sharp pain cannot be taken away with a bath !!!!!!

Im tired of the medical community. Maybe its just my negative experience seeping into this post...

Anyways, Im tired, and I hope you all are doing well ....

Take care,

Noni Wink

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My story. My experiences. My life with Vulvar Vestibulitis.

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