My Story

Hello World,

My name is Sophie, 31 years old, and wanting to share my unique story about my medical journey and hopefully help someone that is going through a similar experience. 

 It’s been 4 years I have been diagnosed with Vestibular Neuritis and Chronic Pelvic Pain Disorder. 

 I want to start off by explaining that I have been secretly battling an unknown inner ear disorder since 2014. Over the past years, I have seen countless specialist in which, I was finally diagnosed with Meniere’s disease in 2017. Unfortunately, this was a misdiagnosis and I have been truly living with vestibular neuritis/labyrinthitis with chronic vestibular migraine. Both can be coincided and very similar and it’s not surprising that it took so long to finally get a proper diagnosis. What lead me to get a proper diagnosis was ironically associated with a NEW condition that I acutely developed on 6/26/2019. This was the day that would change my life forever. It has taken countless doctors, multiple procedures, never ending tests, and so much time and energy to finally get a “somewhat” answer to what happened on 6/26/2019 and how it exacerbated my already occurring vestibular disorder. 

I suffer from Chronic Regional Pain Syndrome (CRPS)

Specifically Hypertonic Pelvic Floor Dysfunction and Vulvodynia Vestibulitis. 

 Going through this medical trauma as well as having to deal with other adversities going on in my life at the same time was too much for me to handle. Emotionally and physically, I started to become very ill quickly, and doctors were unable to give me an answer let alone control my pain. The emotional trauma and level of physical pain that was being caused by my pelvic pain disorder caused my vestibular syndrome to rebound and wreak havoc leaving me with more damage to my left vestibular nerve. This is unreversible damage that must be watched and cared for so that it does not continue to progress. When dealing with such high pain levels for long periods of time my body and central nervous system unfortunatley developed what is called CRPS ( chronic region pain syndrome) in which the nerves throughout my body are hyper sensitive and have formed a miscommunication with my brain. CRPS is extremely difficult to live with and hard to treat.

What is (CRPS) Chronic Regional Pain Syndrome?

The exact cause of CRPS isn't well understood but involves abnormal inflammation and nerve dysfunction.

CRPS is characterized by pain that is greater than would be expected from the injury that causes it, causing a severely disabling condition. The main symptoms are severe pain, swelling, loss of range of motion, temperature changes, and changes in the skin.

Although CRPS can occur anywhere in the body, it usually affects an arm, leg, hand, or foot.

No one knows the exact cause of CRPS, but it is heavily associated with the immune system (Autoimmune disorders) that affects the nervous system, producing inflammation of the nerves that control blood flow, sensation, and temperature. 

CRPS has no cure. Treatment is most effective when started early and focuses on relieving symptoms, slowing the progression of the disease, and helping sufferers cope with the pain and lead as healthy lives as possible. A team approach provides the best results.

KETAMINE is currently the #1 Treatment

What is Vestibular Neuritis and Pelvic Pain Dysfunction?

Vestibular neuritis and labyrinthitis are disorders resulting from an infection that causes inflammation in the inner ear or the nerves connecting the inner ear to the brain. This inflammation disrupts the transmission of sensory information from the ear to the brain. Vertigo, dizziness, and complications with balance, vision, or hearing can occur. WE ARE NOT JUST DIZZY!

While neuritis affects only the inner ear balance apparatus, labyrinthitis also affects the inner ear hearing apparatus and/or the cochlear nerve, which transmits hearing information. This means that labyrinthitis can cause hearing loss or ringing in the ears (tinnitus).

Vulvodynia is currently defined as "vulvar discomfort, most often described as burning pain, occurring in the absence of relevant visible findings or a specific, clinically identifiable disease". The cause of vulvodynia remains unknown, but it most likely occurs from a variety of sources and represents many different disease processes.  Possible causes include abnormalities of embryologic development, genetic and/or immunologic influences, hormones, peripheral and central neuropathy (nerve damage), allergic reactions, tightness of the muscles of the pelvic floor, and nerve entrapment.

Pelvic floor dysfunction (aka levator ani syndrome, pelvic floor hypertonicity, vaginismus). In this condition, the muscles that surround the vestibule are tight and tender. This can cause tenderness and redness of the vestibule, without there being a central problem of the tissue. 

My Symptoms:

My Vestibular symptoms are by far the hardest and most debilitating for me to live with. In the beginning when I was first experiencing symptoms back in 2014 my dizziness and tinnitus were mild, and episodes were short. However, after being diagnosed with a pelvic floor disorder in 2018 my vestibular symptoms have worsened.  

I suffer from daily nausea, vestibular migraine with aura, tinnitus, and hyperacusis. Some days are better than others. 

My pelvic floor suffers from extreme tightness and is constantly hypertonic. This is another daily battle that hinders my ability to do the things I love. Most of my pain is rectal and I suffer immensely from Levator Ani Syndrome. This requires me to constantly be on a heating pad, on-top of my physical therapy and manually evacuate myself from deification. Its constant pain with a feeling of a golf ball in the rectum. Hard to sit and stand for long periods of time and exercising/running has become almost a distant memory.

My continuation to understand why and what caused this?

I am very grateful for the team of doctors I have and the proper diagnosis with hopeful treatments, however I still have no concrete answer as to what caused either of my medical issues. The number of doctors, specialist, and treatment facilities I have been too is outrageous, each with their own opinion and theories on what they think may be the cause. I found that dealing with complex central nervous system disorders and pain syndromes, alternative medicine a holistic approach was the best fit for me in my healing process. 

Today I am still unable to work full time or carry out the career I left. There were a few times in which I tried to go back to work, but my body failed me. Having to turn down multiple career opportunities became too hard for me to handle emotionally, so I had to make the decision to stop focusing on it so much.  Managing my health has become my full-time job. Every day is devoted to learning how to live with my chronic conditions and gaining some balance into my life again.

 Acceptance

 It took 4 years to become what I say about 50% in acceptance of my conditions. 

I will admit, accepting my limitations and letting go of some of my big goals was extremely devastating for me and probably always will be. I am still not fully accepting of some of those losses; however, I have stopped fighting against myself and started that healing process. I cannot control what I cannot control no matter how hard I try, and I have to be okay with that. 

Before finding some peace with my conditions I was very scared and alone at times. Invisible illness truly sets you apart from those who are obviously disabled. I had a hard time finding people who truly understood what I was going through and could relate to my conditions. 

Luckily, I found them, they exist, and they are out there to help. Finding that community that I could relate to and learn from was a breakthrough for me. 

I no longer want to live in secrecy with my invisible illness and chronic pain. I want to be able to continue to learn from others, educate, and spread awareness. I am so grateful to have come this far in my healing journey, however I am not naive to realize that my life is now extremely challenged with an uncurable syndrome. And for that I am NOT grateful. 

I can’t say I am happy with the hand I was dealt when it comes to my health, however I have to make the best of the situation and continue to fight and learn to live with chronic pain. I really don’t have a choice.