A Painful, What? – Gabrielle’s Hypertonic Pelvic Floor

On a seemingly ordinary day I woke up in my Connecticut apartment to an extreme burning and pain in my female organs…

It literally felt like someone was taking a knife and shoving it up and down — a hot, hot knife to be exact.

Naturally, I panicked, texted my boss and told her I would be late to work and immediately called my gynaecologist in Connecticut and begged him to see me right away.

Too ashamed to tell him exactly what the symptoms were I was experiencing over the phone, I simply said I was “in serious pain” as I choked back tears.

After pleading this was an urgent matter he finally agreed to see me that morning.

I went in for a full examination and he proceeded to tell me that I had a vaginal Yeast Infection in addition to Bacterial Vaginosis. I had heard my girlfriends talk about both being “annoying” and “uncomfortable” but never did I ever remember them complaining about extreme pain or burning.

I attempted to ask questions like if this knife-like sensation was normal for this type of thing. He disregarded my mania and in turn wrote me a lengthy series of scribbled prescriptions from Nystatin to Diflucan to a heavy dose of Miconazole.

I have had A LOT of Yeast Infections in my life people — sorry for the TMI.

Now I don’t know if that’s because I could eat a baguette everyday for dinner or because of the birth control I am on or because hey, this is just how my body is, but never had I EVER experienced such symptoms.

He told me “I would be fine in 3–5 days” to “calm down” and wished me the “best of luck.”

Well Mr. ‘He who should not be named’ doctor…

Luck is just what I was going to need because after 8 days of agonizing pain and no change in my symptoms I was starting to get even more panicked and depressed.

I was completely shutting out the world around me.

A job I worked so hard to get just months before, I could barely imagine sitting at for more than two hours at a time.

I spent my nights cancelling plans and sleeping with ice packs between my legs and waking up in a swimming pool of water.

I would also like to add that this job I alluded to is working for a top executive at a corporate, luxury fashion brand where I was very much expected to perform at a high level every day. In between scheduling hundreds of executive business meetings, nail appointments for my boss and booking extreme trips to Abu Dhabi and beyond, I spent many a night laying awake cross eyed on WebMD and chat rooms hunting for a solution or at least SOMEONE who had or was experiencing a similar issue.

Ladies, actually no one, ever go on WebMD unless you want to convince yourself you have a rare disease and/ or are dying a slow death.

Flash forward 4 more months of silently struggling both emotionally and physically, I proceeded to see four more gynecologists this time located in New York City either recognized as “top pain specialists” or known for treating “rare cases.”

Each doctor, specifically 2 men and 2 women had pretty much the same response to my sorrows. I was essentially crazy. Yep, the pain was in my head.

“But sex was unbearable”, I told them let alone sitting for more than 2 hours at my job. You know the thing I like have to show up for everyday to pay my rent.

Two out of the four doctors actually told me to drink more wine before sex, do some stretches and yoga poses, make an appointment with a therapist and again to…

Maybe I should consider an antidepressant in addition to an anti-anxiety medication to take the edge off they suggested.

Honestly, maybe I should I thought, because at this point I felt pretty damn devastated, defeated, and truly started to believe I was in fact crazy and maybe the pain was getting worse in my head.

Maybe this pain would last forever

Maybe no one would ever love me if I couldn’t have sex. Maybe I would never have pain free sex again.

Maybe something was just wrong with me that no one would ever find out.

I had a clean bill of health at this point — no infections anymore. I was tested for everything- STDs, general bacterial infections, underwent multiple trans-vaginal sonograms and even had a pelvic MRI where they made me drink that horrific juice that’s really not juice…

Nothing could explain the constant burning pain.

Sitting naked in a gown looking at my unpolished toes staring at prestigious degrees became the new norm.

Nothing made it worse and nothing made it better. It just, was.

I believe that during that time period of hopelessness I became more spiritual than I had ever been before, sometimes screaming out alone in my apartment begging for an answer, for just one night of peaceful sleep.

The only person I really confided in was my mother and with her research we found “The Centers for Vulvovaginal Disorders” based in both New York City and Washington, DC.

The name alone sounded daunting.

I couldn’t believe I was even in this situation and was embarrassed to make this call.

Ugh.

A vulvovaginal disease… just disgusting I thought.

I made an appointment with Dr. Andrew Goldstein after reading countless incredible reviews of how his knowledge, skills and professionalism changed people’s lives.

Hopeful, but hesitant I waited the two month wait list to see him.

The initial consultation cost was $500 and no insurance was accepted.

I was beyond desperate so if it meant selling every handbag in my closet this was the route I was about to take.

And yes, handbags were sold.

THE life-changing appointment

To my surprise this appointment was unlike any experience I had ever in my life had with any medical professional.

Dr. Goldstein spent over 65 minutes with me learning about who I was, where I came from, and the concerns and symptoms I was experiencing. He never interrupted, never judged, never made odd facial expressions, never shook his head in confusion, but simply listened.

After sobbing through my story and rubbing my dripping nose all over my once chic jean jacket he looked at me and said…

“I am so sorry to hear that you are experiencing this Gabrielle, I can’t imagine how emotionally and physically draining this must be for you. Rest assured we will find an answer together as a team.”

He asked me if I felt comfortable answering if I was single and dating and how the pain was affecting that aspect of my life.

Well, let’s see I told him, I’m 26 living in NYC and no Bumble, Hinge or League date is calling me back and I shutter at the thought of anyone touching me and explaining that sex is painful is not really an option.

So yeah, no thanks.

“That will change,” he said confidently.

For the first time in months I didn’t feel crazy. In fact, I felt heard. And it felt God freaking unbelievable.

Dr. Goldstein performed an extremely detailed physical exam where he found my pelvic floor muscles to be severely tight and tender, specifically the bilateral iliococcygeus, bilateral pubococcygeus and puborectalis muscles.

In fact, they were some of the tightest muscles he had ever seen for my age and in his many years of practice.

Ultimately, my diagnosis was referred to as “Hypertonic Pelvic Floor Muscle Dysfunction”.

Um, what.

I asked him how and why I had this, feeling shameful like I somehow brought this upon myself. He said he genuinely did not know the exact catalyst and I really appreciated his honesty. He believed I may have always had tighter muscles to begin with from years of dancing and perhaps held a lot of my stress in my pelvic floor.

I had a body that was more prone to yeast infections from diet, birth control usage etc, and my muscles may have went into severe spasm and could not function properly anymore.

The lack of oxygen my muscles were not able to receive was what was producing the burning sensation and the pain during sex was my body “protecting” me from something it thought could be harmful.

A viscous cycle really.

Also, me not being calm about this whole thing like actually made my body more tense so…

His treatment plan for me began with six months of pelvic floor physical therapy.

Apparently there are professional therapists, that quite literally stick their hands inside you and massage your muscles back to normal.

Awkward? I would say so. Upsetting? I’m going to go with yes.

What a magical way to start each day at 7am.

In addition to physical therapy I would use Diazepam suppositories at night and cognitive behavioral therapy to help me cope with the emotional part to help settle down my nervous system which was hyper alert.

For months I followed his instructions with very little improvement…

He eventually suggested trying Botox.

I literally looked at him like he had five heads.

This is so unfair I thought, I should be getting this in my forehead not down there… what.

He let me know that this was an off label use, it would be $1,500 (not covered by insurance) and may or may not provide the result I was so desperately hoping for, but was definitely worth a try.

Essentially…

It would stop the muscles from contracting and paralyze them until they learned to work normally again through continued physical therapy manipulation.

After a series of 3 rounds (100 units each) of Botox spread out over the course of five months…

I can officially say I have been completely pain free for about a year.

I have resumed all my usual activities and I am forever grateful to Dr. Goldstein who believed in me and did everything he could from taking my late night panicked calls to following up with me on the weekends.

For a long time I was so embarrassed to talk about my story both while I was going through this process and even after I felt healed.

After a long inner debate I felt overcome with a strong need to share my raw, honest and quite emotional story with the hope that I may reach even just one woman silently struggling with a similar situation.

Ultimately, I want whoever reads this to know that though rare, there is hope.

I now have pain free sex, have not had to get anymore vaginal Botox injections, and only see my physical therapist once every four months for peace of mind.

I am thankful for women like Lara Parker, an Instagram influencer who speaks so freely, confidently, and candidly about her journey with endometriosis and even has a book “Vagina Problems” coming out this year which I low key can’t wait to get my hands on.

Although I don’t know her personally, her Instagram posts throughout this journey made me feel a little less alone each day.

I am thankful that I have known what it is like to have a loving partner to talk to when I’m feeling anxious about the pain coming back or letting me just have a “gab night” if I don’t feel comfortable having sex or being touched at all.

I hope that we continue to work towards Botox being covered by health insurance so that it becomes recognized as a real form of treatment for many painful and rare conditions. 

Most of all though, I hope that more women can feel empowered to talk about their bodies and their struggles.

With love,

– Gabrielle (26, New York, USA)

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