I am sorry to inform you, BUT it’s all in your head!!!

This is a common phrase I have heard from different doctors, therapists and people trying to grasp the concept of pelvic pain. Sound familiar to anyone else? Yeah, I thought so.

Getting the actual diagnosis was the most frustrating and painful process thus far. You think GIANT EMG Botox needles are bad??? It’s nothing compared to not knowing what’s wrong and the fear and shame I felt before my diagnosis.

In May of 2007 I started having a lot of problems- it first felt like an itchiness, then it was a burning of the vulva, then it started to hurt badly during intercourse and then in July 2007 it became full-fledged itching, burning, shooting nerve pains in my pelvic area and thighs that would make my legs go numb.

I went to my first gynecologist to see what was wrong in July. I was confused and scared by the symptoms and started crying during the visit. I will refer to her as evil gyno – she said, “Do you always cry during doctors appointments? There is nothing wrong, stop crying- you don’t have anything!” Me- “So why does it hurt?” Evil gyno  “It doesn’t, it’s fine, it’s all in your head.”

After that the symptoms persisted and I started to worry and fear that there was something terribly wrong with me. I then proceeded to visit the FIU university women’s health office to figure out what was going on.

I was tested over and over and over for the same things. STD’s, STD’s, STD’s and basic infections… Every time I went in I told them, “It hurts to have sex, I have one partner, it’s not possible for me to have STD’s, why are you testing me for the same thing?”

I was finally diagnosed with vulvodynia in May of 2008. I felt worried but extremely relieved to finally know what was wrong and I have spent the past few years healing and coping with the condition. Now that I have accepted it and am finding ways to live happily and healthily with the condition, medical professionals and people just haven’t caught up.

2007-Evil Boyfriend- “Why are you lying to me? You are making it up!!! You are just a lesbian!”

January 2009- Therapist #1- “Well, it does seem like it could be physical. Nerve pain does sound like more than it being in your head. I just don’t know though.”

February 2010- Pittsburgh Gyno Office 1-3 “Never heard of it.”  “Doesn’t sound real.”  “We can’t help you!”

February 2010- Sex Therapist Screening/Pittsburgh- “Vulvodynia is all in your head!”

My Med Dilemma

In March of 2010 my healthcare officially kicked in for the first time since I was diagnosed with Vulvodynia. It took months to find a real specialist in the field of women’s health and pelvic pain, but I finally found one.

For months I struggled with the concept of all the creams and systemic meds they wanted to try, because I have always been a strong proponent against synthetic hormones and other meds that change your brain chemistry and wiring. (Like I really needed to worry about this more…)

Finally in October I gave in. My osteopathic Doctor proved to me that I could try a number of different holistic treatments like pelvic floor therapy, osteopathic work, etc. but sometimes you need all the right pieces in play. He explained that people don’t stay on anti-depressants or other meds forever, just enough time for it to calm and alter nerve damage and pain signals. Thus began my long trial and error process.

Here are the meds I have tried so far and the side effects and rating system:

1 terrible/ 2 bad/ 3 ehhh/ 4 ok/ 5 great

(WARNING: I am more sensitive to medications than the average person)

• Traumeel Cream- Still on it since July of 2010; topical cream that develops better tissue health and calms the nerve pain (5)
• Diazepam (Valium) Suppositories- Still on them since July of 2010; intended to help relax the pelvic floor muscles. I get to stick them up my butt every night!!! (4)
• Singulair 5mg- Reduces inflammation (5)
• Amitriptyline 10 mg- Eliminates the rippy, burny crotch feeling but also is really bad for weight gain and sleepiness (1- for side effects); (5- for pain relief)
• Gabapentin 300 mg- Designed to relieve nerve pain, it really just does nothing and makes you forget how to speak (1)
• Cymbalta 20mg- Designed to remove rippy, burny crotch feeling; however, it caused massive pharmaceutically induced anxiety and depression (1+)
• Klonopin- anti- anxiety medicine prescribed solely for trying to survive Cymbalta (5)
• Traumeel Trigger Point Injections- monthly shots into the deep and superficial pelvic floor muscles and vulva to calm nerve pains and release muscle tension (5+)

Next on the way is Effexor and possibly Amitriptyline cream.

My lips are real firm and wrinkle free! Thanks Botox!!

Three months ago I officially entered a study at the Drexel Sexual and Pelvic Health Institute involving Botox, EMG needles, machines that sound like barking puppies and traffic and too many people in one room. Sound interesting yet??

Supposedly the use of Botox is very common in dealing with high-tone pelvic floor dysfunction. The Botox is injected in the 3 layers of your pelvic floor muscles in order to paralyze them. This way your muscles cannot spasm and will release to a resting position within the pelvic bone causing relief from pain. The study is being conducted not to evaluate the use of Botox in treating the condition but on how to safely and effectively administer the Botox. Through the use of this GIANT  EMG needle, the doctors and researchers are able to find problematic areas within the muscles by using the screechy, puppy, traffic sounding device and a computer monitor highlighting changes in the pelvic floor. Once they identify these areas, they inject Botox and a pudendal nerve pain blocker.

GIANT EMG Needle

If I wasn’t used to be probed and prodded constantly, and perhaps even finding a sick pleasure in it at this point- I would have been terrified of the room and set up.

Screechy puppy, traffic sounding machine on left and crazy crotchless procedure chair!!!

I am a study participate for a total of 6 months and have my last visit in November to see how my body responded over the period of time. Side effects from this treatment are as follows:

• Day one, extreme agitation and anxiety that leads you to yell at racists on the streets (true story)
• Day one, a void feeling in your pelvic region and vulva, like it doesn’t exist or is missing (due to Lidocaine and pudendal nerve blocker, a.k.a Novocain for the vagina!!!)
• A sense of feeling overwhelmed where you cry during your entire acupuncture session to release the tension
• A really strong urgency to pee, all the freaking time for the first month!!!
• The responsibility in finding a new way to sit on the toilet to properly pee and defecate (supposedly my organs moved around because they were no longer stuck)
• Week 2-3 as the Botox starts to really set in, constipation
• The desire to endlessly refer to your vulva as a 50’s house wife or a jersey shore mom

In order to flaunt my weirdness and take my mind off the pain of the procedure the visit conversations go a little like this:

“Do you think my vulva will be really tight and puffy? Isn’t that how Botox works?”  -Me

“Um, what?”- Doctor

“Doctor, my vagina is a 50’s house wife, it takes valium and get’s Botox injections, what do you think about that?” –Me

“Um, what?” –Doctor

“Mandy, you are doing so great- we have just a little longer and the pain will be over”. –Doctor

“Thanks, my vagina feels really comforted by that. It often needs validation and assurance!” – Me

“Why does my pelvic floor sound like barking puppies? Do I have puppies up there? Is that why it hurts?” –Me

“Um, what?” –Doctor

“Do you want to squeeze my hand to take your mind off the pain of the procedure?”- Nurse

“No, I will just sit here and text.” –Me

“Twat did you say Doctor, I didn’t hear you over the barking puppies”. –Me

Regardless of all this, I would do it again! It has been really helpful!!!!

Circle What???

In April of 2010 I started going to a pelvic floor therapist. What they do is use a number of different internal massage techniques to help your pelvic floor achieve a few things:

• Soften the tissue and relax the hard muscles
• Practice relaxing and releasing tension in your pelvic area when you experience pain and stress
• Develop breathing exercises that will calm your body and prevent tensing your pelvic floor muscles
• Stretches that will encourage pelvic and hip health

My initial visit consisted of filling out paper work and an external and internal evaluation of the tone, skin and skeletal structure. A very strange appointment to prepare for. I didn’t know quite what to expect but I was excited because it’s been a very successful treatment and more holistic.

The visit went a little something like this:

I entered the catchall physical therapy office (as most of them are) and sat down to fill out my paper work. It was pretty typical, what is your family history; any medications, referrals, emergency contact information and then I came across the page- circle where it hurts…

I remember thinking, “Circle where it hurts?? You have got to be kidding me??? This is awesome!”

circle where it hurts...

I was so amused by this that as I entered the back room reserved for pelvic floor therapy and biofeedback, I told my therapist.

“This paperwork is ridiculous, it told me to circle where it hurts”. –Me

“Did you really do that? Haha, most people don’t”. – Her

“Yes, I did. I don’t understand though- it made me circle a man’s crotch. I don’t have a mans crotch, I have a vagina! I am so amused that this is now a part of my medical records!” –Me

“The medical profession is still learning when it comes to women’s pelvic pain…” – Her

Who’s your Doctor??

Last year in July of 2010 I finally found a specialist who treated vulvodynia and pelvic pain. It was a breath of fresh air. For years I had gone without healthcare or interacted with confused and often ignorant practitioners who thought that vulvodynia was all in my head.

I have gone through a whole slew of different treatments, shots, studies and medications (many more posts to come on this).

As I learned the system, I realized that no one was going to advocate for me; I was the only one to do it. Knowing this I created a number of conditions for my treatment:

1. Number 1 of all, I refuse to take meds or any systemic drugs unless you can give me a strong explanation as to why I should try it. Then I make the final decision.
2. I want sensitivity and understanding (not a therapist) but a doctor who will not scold me for crying.
3. I want to come regularly and have all parts of my care discussed with me.

These conditions helped me to take control of my care and not rely on doctors telling me they know best. Obviously they have training, but did they know best when I spent a year and dozens of gynecological visits trying to figure out what was wrong and after the millionth visit- when I said, “it hurts, it hurts”. They said, “oh, really? Crap, you might have vulvodynia”.

At your next doctor’s appointment, what conditions would you want to make for your care??

My sense of ownership over my care has helped me find a system and network of doctors who work with me:

• Pelvic Health Institute- my specialist who oversees all of my treatments, meds and care plan
• Osteopathic Medical Doctor- a specialist who uses touch and adjustments to decrease nerve sensitivity and immune health to calm pain and muscle spasms
• Pelvic Floor Therapist- a trained therapist that provides me with internal massage targeting the high-tone muscles to soften the muscles, increase blood flow and decrease nerve sensitivity
• Sex Therapist- a therapist who knows and is not uncomfortable talking about vulvodynia (physical and emotional)
• Community Acupuncturist- helps to decrease inflammation and create immune health

Do you grab your crotch???

Tips they always say will help…

Common tips any book, doctor or pamphlet will tell you:

• Put a cold pack on it, and by it- yes, I mean your vulva
• Soak in Luke-warm to cool water 2-3 times a day -because we all have that much time
• Avoid hot tubs and hot water– it will leave it dry and itchy (very true!!! So will chlorine)
• Avoid activities that put pressure on your vulva-such as riding bikes or horses (if you are in need of similar activities, resort to playing with my little ponies)
• Wash gently– if you are scrubbing your vulva too hard, please remember it’s not the 1950’s, it’s not supposed to smell like rainbows and cotton candy!!
• Wear white cotton underwear– go through your mom or granny’s drawers and find all the granny panties you can dream of!
• Use lubricants– if it’s for sexual activity or self-massage the best brand used by my pelvic floor therapist is “slippery stuff”. It is natural and has only 4 ingredients!!! Very important!!
• Try an antihistamine before bedtime- my doctors prescribed me 5 mg chewable singular

Vulvo… what???

Welcome to the Vulvodynia Monoblog- a blog dedicated to the education, awareness and humor of living with Vulvodynia.

So what is this catchall phrase, Vulvodynia?

Generalized Vulvodynia:

“Chronic vulvar itching, burning and pain that causes physical, sexual and psychological distress (or) pain of the vulva ”

~ Heal Pelvic Pain, Amy Stein, M.P.T.

For the sake of real life stories, I have generalized vulvodynia and have also been diagnosed with vulvar vestibulitis and high-tone pelvic floor dysfunction.

Vulvar-vestibulitis:

“Discomfort of pain that is located only on the vulvar vestibule, which is the shiny mucus tissue surrounding the vaginal opening inside the lips of the vulva”.  ~ Heal Pelvic Pain, Amy Stein, M.P.T.

High-tone pelvic floor muscle dysfunction:

Essentially my pelvic floor is stuck, i.e. really tight and hard. It does not sit properly in the pelvic bone and leads to muscle spasms that cause pelvic pain, sends pain signals to the nerves and also decreases access of healthy blood flow to the pelvic tissues.

I started having the symptoms 4 years ago in July of 2007 and it took a year to diagnose- something many of you have probably also experienced. Doctors and books have certain terms for describing my condition- however,  when we are the patient trying to describe over and over again the pain, it goes a little something like this…

“It hurts really bad, it feel’s like a bad infection but I don’t have one, it’s burny, it feels like it’s ripping, my abdomen feels like it’s filled with pus and full, when I am on my period my belly hurts in a strange way, it hurts to have sex, I can’t wear tampons anymore- made me want to vomit, it itches, I can’t stop holding it for comfort”.

These are the things doctors hear time and time again- but since they can’t find an easily identifiable physical problem- it becomes a matter of it being all in our heads.

That being said- this blog is committed to living happily and healthily with vulvodynia. Finding the amusing and often hysterical moments that exist between doctor visits, to disclosing my medical condition to grabbing my itchy, burny, rippy crotch in public. The forums and other women I talk to often feel angry, ashamed and devastated by our condition- all of which I have felt… but there is much more.

It’s not the end of our sexuality or partnerships or exciting lives- it’s to change, cope and accept with humor and resilience.

More posts to come on:

• Tips for living with Vulvodynia
• Doctor Reviews
• Medicine Reviews
• Public Crotch Itching
• Study Participation (a.k.a. my life as a lab rat)
• And much more…