Coming back from it all…

One of the hardest parts of Vulvodynia that I have struggled to come to terms with is the overarching feeling of a loss of power and control over my life, my health and my future. The first year before I was diagnosed with Vulvodynia I was in a terrible relationship with someone I like to refer to as a man-child. I was blamed and scorned for my pelvic pain and often accused of lying.

When I was finally diagnosed- I was without healthcare, as I have been much of my life and not sure what to do next. For the next 2-½ years I struggled with the fear of dating again and getting accused of lying or scorned for my condition. I felt like I lost all my options and it was one more layer of hopelessness to the existing challenge of growing up in a stunted and abusive family and never having a voice.

Doctors who “say” they treat Vulvodynia are often a nightmare and add one more layer of crap to the pile- however, when I found the Sexual and Pelvic Health Institute- it all changed.

My first appointment was lengthy where we went through the official diagnosis, perinometry reading and skin examination. Get this- they didn’t stick a speculum up me- wanna know why??? Because my vagina has nothing to do with Vulvodynia- it’s about the vulva!!! Yeah, wish other doctors knew that.

Anyways, during this first visit my doctor gave me a hand mirror and she said, “I want you to see what I see when I explain it to you…”

I said, “no way! This is awkward!”

She told me, “ There is no way you will be my patient if you do not do this- you have to learn to stop disassociating with the pain. You have to come back from it!”

From then on- I have been a faithful patient and always happy to go to my visits because I know no matter how I feel or what my day is like- she will remind me that the struggle is worth it and it will be ok.

I had an appointment this past Wednesday and it just so happened that a physician from the Mayo Clinic in Minnesota was shadowing her for the week in order to learn from the Institute. The Pelvic Health Institute is an innovative practice that not only compounds medicines you can never dream of- but they take their time to explain and educate all of their patients. Every visit my doctor and I discuss where I am, where should I be heading and what we both think are ways to get there.

On this particular visit she was explaining to me a cream that we might try in a few months. This cream was discontinued for a long time, not because of it’s lack of efficacy but because of the symptoms associated with it. Supposedly, women with Vulvodynia and also burn victims have a build up of P Substance in the inflamed areas that are toxic substances created due to inflammation and sickness. The cream serves as a treatment to remove the P Substance from the skin. My institute brought this treatment back to life and 81 other clinics followed. My doctor explained to me- “clinics criticize us constantly because the cream causes burning during the application and treatment.” Other doctors say, “ Why would you cause more burning for these women”.

The funny thing was- she didn’t even have to tell me. Because I know, the true path to control and empowerment of patients living with chronic pain is not to protect us from the hard things but to treat us and teach us how to gain control and live a healthy life.

Philly- a major hub for women with Vulvodynia…

It’s been close to 2 years since I moved to Philadelphia from the south. Of all the cities for me to move to I am constantly shocked by the amount of specialists and support for women with Vulvodynia and chronic pain conditions.

A quick run down:

•  There are over 200 sex therapists in Philadelphia!!
• There are dozens of physical therapy places that provide pelvic floor therapy- they are literally competing for people’s business!!!
• Every study I read before moving north about Vulvodynia and new treatments came from Drexel and UPenn and Drexel has one of the top 5 specialists on Vulvodynia in the country!

Not to mention my favorite- the Drexel Pelvic and Sexual Health Institute!

I have been going to the institute for treatment for about a year and a half and in that time I have been entered into research studies and often receive strange and innovative treatments on a monthly or daily basis.

A few to date:

1. Traumeel trigger point injections, which are shots in the pelvic floor muscles and vulva. Traumeel is most often used for sports injuries and inflammation, but I get it shot into my vag…
2. Amitriptyline Cream- known as a TCA for depression but used as a topical cream to calm the nerve pains -I was totally worried that my vagina would get fat on this
3. Neogyn- actually designed by a Swiss cosmetic company and serves as a regenerative cream, a.k.a. it will grow me a new vulva!!!
4. The notorious Botox injections!!! Jersey Shore represent!

And I am sure many more to come…

Every lady part needs a Pal!!

When you read any website, pamphlet or book about Vulvodynia, a number 1 staple is an icepack.  Putting an icepack on it, and by it I mean your vagina- it helps to cool the inflammation and angry nerves associated with the condition.

As silly as it seems now, the first year I was struggling with Vulvodynia (and didn’t have a diagnosis) I soon learned that the only thing that made me feel better was to go home and lay in bed with an icepack. I was living with a partner at the time and remembered the shame and embarrassment I felt. How can I possibly explain the need to put an icepack on my vagina??? He already thinks I am nuts for this…

So over the last few years, these are some of the things I tried until I found the perfect icepack and yes, I mean perfect.

 

 

Ick, just drippy and cold

 

then came…

Succotash!!! (j/k didn't actually use this one)

 

then…

Oh Gal-Pal, you are the one! But your name sucks!!

 

Get your own gal pal at http://www.gal-pal.com/

 

Yes, like you are going to poop on me…

Yesterday was my last official doctor’s visit for the Botox study at the Drexel Pelvic and Sexual Health Institute. For the past 6 months I have been poked and prodded like a human lab rat trying to help researchers and practitioners prove the importance of Botox for pelvic floor dysfunction- but more importantly the correct and safe use of Botox through a highly complex system of electrodes (as I call them, electroids), Giant EMG needles, screeching puppy sounding machines and computer screens that read- anal sphincter. Why? I have no idea!!

My final visit consisted of all the same things, initial evaluation, Peri-reading, lidocaine numbing, EMG needles and post-procedure numbing solution.  However, the visit was anywhere but ordinary.

When I arrived I was seated in the crazy gyno chair where the nurse spent a while figuring out where to place the electroids (ha!). This was a painful process because they kept changing their minds and I essentially got an accidental bikini wax. Once the electroids were in place the study visit officially started.

They then collected data through an evaluation in which they use a perinometry device to read the pelvic floor muscles at resting and tensing positions. I started the study with a resting/ tensing reading of 48/68 and am leaving the study with a reading of 39/48. All and all a better place than where I began.

Next comes the lidocaine numbing and EMG needles. My legs are shaking at this point anticipating the strange and painful feeling of EMG needles. In order to take my mind off of it, I proceeded to say ridiculous things.

The conversation during this process went a little something like this:

Me, “Ugh, I am so glad to never do this again”.

Nurse, “Ah honey, it’s ok. Hold my hand.”

Me, “Thanks”.

Nurse, “Am I squeezing too hard??”

Doctor, “Wait, nurse. Why are you squeezing her hand?”

—-

Doctor, “Could you please bear down?” (spelling?)

Me, “huh, what do you mean? Like I am going to poop on you?”

Doctor, “Yes, like you are going to poop on me.”

Me, “hahahaha”

Nurse whispered, “Awesome” and mini high-fived me.

The procedure was relatively short and I feel extremely excited about the progress I made along with being lucky number 13 in a study of 20 women. Statistics are already showing 70% of study participants have improved by the end.

Doctor as he was leaving, “You have been my funniest patient by far.”

Farewell Botox study and creepy room.

Vulvodynia Matters- Boston Based Non-Profit

Recently I bought a CD on Amazon titled, “Guided Meditation to Support Women with Vulvodynia”. This CD was created by practitioners and women living with Vulvodynia.

I was hesitant to buy it, mainly because I still have no clue how to do a body scan (or what it even means) and I get too stuck in my head when meditations tell me to get out of it- but all the same, I ordered it and love it.

A few things I love about it:

– Gives the best explanation of Vulvodynia I have heard to date

– It addresses the fears and concerns I have, without me even realizing they still existed

-It is actually written by women who live with Vulvodynia everyday

-It reminds me to live outside of the norm and what life is supposed to be

The CD was compiled by a Boston based non-profit, Vulvodynia Matters. The organization grew out of a support group by women with Vulvodynia and their families. This condition is extremely challenging for people to openly discuss and it’s amazing to see a group doing it.

Check them out:

http://www.v-matters.org/

My Vagina Monologue (2008)

Written in 2008 to help deal with the anger and helplessness I felt when diagnosed with Vulvodynia and the triggers it caused. Through much effort, work and support I do not feel this way as much anymore. 

A friend told me I should write a vagina monologue. Maybe because I have always found it pretty amusing to talk about around the dinner table, maybe because of the crazy natural concoctions I have tried to heal it, or maybe just because I speak in monologues.

I don’t know if I would feel the same if my life had taken a different course. I never felt connected to my sexuality growing up. I longed to have a picture perfect romance, but was never willing to pursue it or deal with it when it came along. I felt like it didn’t make sense, like riding a damn bike and not even knowing what to do…ever. Just some gangly girl peddling along- wobbling here and there, taking corners too fast.

When your first experience is rape- things change. The issues before are now exasperated by your new experience and you feel like everything is falling apart. I felt like this is how it is- this is how it is supposed to be. I was never taught before that women had rights or choices. I moved quickly from a rape into a self-destructive situation where everything was centered around the idea that all men want, is sex and all women are good for, is sex.

After the rape, I really understood this concept of a vagina that feels and speaks. I spent a whole year in silence and denying what happened to me. Never could I imagine that I would be raped…or at that- had been raped. Because, when you are saying no…you don’t even believe it yourself. You make up excuses like any other bad relationship- well, maybe I did want it, or maybe if I wasn’t so poor and desperate I would have never gotten in this place to begin with, or maybe because I grew up that fat, ugly, loud mouthed little girl- that this is the only thing I will ever get…

God, what a sad thing to finally say.

The guilt I felt. Can you believe- I actually tried to help the man?! No, he wasn’t bad…he just needed someone to believe in him? He didn’t mean to? He feels terrible…oh, he really did care about me…I gave him the wrong message, I sold myself for comfort?! Or security?!

Two years, I believed I could help change this man. This man that changed everything for me.

So what does my vagina say?

Well, it would say, fuck off. Or, I am too scared.

What would it wear?

Lace-up combat boots.

The Rape

People to this day still think I am crazy when I say- vagina’s really do have a mind of their own. Let me give an example- like I said before- I have never been very connected to my sexuality, nor had I ever really noticed my vagina…but things changed.

After rape, you feel like you just don’t understand your own vagina. You don’t even know it. So many days I would suddenly realize it all over again- my vagina is not a part of me. It is angry and distant and something I don’t even understand. The moment anything goes wrong with it- I am convinced!! I have contracted an STD from the rape…no matter if it is 1, 2 or even 4 years later. It feels confused, and embarrassed. When I go to the gynecologist, I cry and cry. One time the female doctor asked me real cold, “Do you always do this”?!?

I have researched and studied our past history of violence against women and the notion of sexual violence as a weapon during war. Bosnian women explaining how the lips to their vagina just fell off in their hands. Everything smelled of pus, disease and emptiness. Everything sweet and beautiful, gone.

I don’t know a better statement to make someone understand…if it is physically or emotionally. Often times, when you are sitting alone trying to figure out what to do next or just trying to reason the past…you sit there. Lip in hand, numb, confused and lost.

Moving On

I feel like as a feminist, I am supposed to say- fuck you and move on. I am stronger than this…Well, it is a damned well known fact that Ms. Mandy H. is stronger than this, but what does that even mean.

Does it mean that we forget, we heal completely and welcome any hungry man into our open legs…or do we build a wall?

How can you not? How many men really say- oh, of course I understand.

Every time that I feel like I am moving on- something goes wrong and I end up at the gynecologist for a bladder infection- crying and crying. Figuring that somehow- just somehow this was caused by the rape.

So, I need to address this issue. Yes, I am still a strong feminist, but the reality is that we are influenced by our environments, our past and the political culture of this nation to know that we have a long battle ahead of us, and it will be hard.

An Ode to Vulvodynia

Many of our wonderful male doctors believe that vulvodynia is a product of women’s pea-sized brains. We dream up chronic Vulvar pain.

After all these years of healing and finding happiness here and there…it results in something so frustrating, so lonely, so unfathomable.

Shooting nerve pains, raw, angry, almost like your lips are once again lying in the palm of your hand.

This could be genetic, allergies, environmental or a product of all of them?

Or maybe, just maybe these egotistical, misogynist male doctors are right. Right in this sense that we are plagued by a disease that touches and changes every woman no matter class, race, culture, age or geographical location.

A disease that makes me say- my vagina has been one of the biggest problems in my life. Everything has revolved around this one damn lump of flesh and nerves.

God, how many men walk around and say that they are all hung up on their penis? How many walk around thinking it is the worst damn thing that ever happened to them?

What does a penis mean today? Well, what is has always meant- power, pleasure and war.

What do our vagina’s need to say?

This plague will one day end.

Get your Free trial today!

Today at my Pelvic Health Institute appointment I was informed of a new topical cream, Neogyn, to address the itchy, rippy, burny problem associated with Vulvodynia. A week ago it was released in the U.S. and they are giving out free trials for a limited time. If you are struggling with itchy, rippy, burny crotch, maybe this will help.

http://www.neogyn.us/

Draw me a diagram…

Late night vagina/vulvodynia art...

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.