My Journey Through Pelvic Pain
My Journey Through Pelvic Floor Dysfunction
I remember it like it was yesterday, it was around noon, and I was at work, and something just didn’t feel right.
The date was June 26th, 2019. I remember leaving work early that day to go straight to urgent care. I didn’t know really what to think of the pain at the time. It felt as if I had a bad UTI. After countless negative tests and normal bloodwork, the urgent care sent me home with a prescription of Antibiotics anyways.
As days went on, the pain got worse, and the symptoms started to change to. What felt like a bad UTI, turned into deep, shooting pain and constant burning. The area was so painful to touch I could hardly wear undies. Within a span of a few weeks, I had seen so many specialists and doctors whom all had no idea what was causing my issue. First, they thought it was an allergic reaction (all soaps, detergents, foods, clothing types), then we moved to it being a hormonal imbalance. This was when they had me on hormone therapy which not only was EXTREMELY EXPENSIVE, but also a HUGE waste of time. At this point I was on so many medications and supplements I was like a Pez Dispenser. I was so desperate for answers and solutions to my pain. This desperation led me to seek alternative methods that were “supposed to be” less invasive.
Unfortunately, my first encounter with alternative treatments led me to a facility that gave the impression that they knew what they were doing, however ended up causing more medical trauma then before I had walked in. I was told I was suffering from possible Lichen Sclerosis ( a rare dermatologic disorder) and was convinced to have PRP injections performed in my labia, hydrolyzation of my pudendal nerve (with lidocaine) and a caudal epidural (Ultrasound guided).
NONE OF THIS WAS UNDER ANESTHESIA- so yeah it fucking hurt. Not to mention they performed all three of these treatments with no pain control back to back within 30 minuets. So, I walked out of there with severe medical trauma and still have hypersensitive damage to my tailbone and coccyx area.
LEARN FROM YOUR MISTAKES THE HARD WAY !
I have had doctors rule out Allergies, Cauda Equina Syndrome, Hormonal Imbalance, Interstitial Cystitis, Endometeriosis, PCOS, Pudendal Entrapment, Pisiforms Syndrome, Desquamative Vaginitis (another rare dermatologic disease) and the list goes on and on….
It wasn’t until I sat down and had my fist appointment with my physical therapist who was able to crack the code on my pelvic floor pain.
GUESS WHAT DOCTORS, ITS CALLED HYPERTONIC PELVIC FLOOR and specifically LEVATOR ANI SYNDROME.
Took my physical therapist 30 minuets to pinpoint the cause of pain. Now, why it’s being caused and what started the pain cascade is still a mystery and continues to be for most chronic pelvic pain suffers. Most times the pain has no real known origin.
The current diagnoses I suffer from are Vulvodynia Vestibulitis, Hypertonic Pelvic Floor (vaginismus), Levator Ani Syndrome, Pudendal Neuralgia, and Coccyx Pain.
Most of my pain is rectal pain. And most of my internal pelvic floor therapy is rectal manipulation.
When I am at my worst, defecation is impossible without manual evacuation. Yes, people you heard that right, I have to manually go in and remove my feces little by little. It’s a whole production in the bathtub let me tell you.
Luckily, I have the access to some of the best pelvic floor specialists and can work with Sarton Physical Therapy here in California.
I have been under there care for two years now and have learned so much with amazing support.
Tools and methods used during PTF:
· Pelvic Floor Wand
· Dilators
· Manual Manipulation (tack and release)
· Trigger Point Release
· Rapid Release Hypervolt
· Inner Thigh And Stomach Rolling Fascia Technique
· Pelvic Floor Stretches And Breathing Techniques
· Exercise Modifications
· Foam Roller – all day everyday
· Cupping- yes, your actual bottom
· Heating Pads And Cold Packs Are Your Friend
Medications
· LOTS OF CANNABIS
· Baclofen suppositories
· Valium suppositories
· Flexeril
· Lidocaine Gel – Yes people I have to put lidocaine on my vagina for pain control.
With physical therapy, lifestyle changes and cannabis I have been able to maintain the pain at times, but have never gotten over the threshold that my pelvic floor needs to really relax.
THAT’S WHY I GOT BOTOX !!
I’ve waited too long to for this procedure and it was time to fight for a better quality of life.
My Botox procedure was rescheduled numerous times due to insurance not covering the treatment.
So I finally swallowed my pride and created a Go Fund Me to reach out for help in paying for Botox “out of pocket”.
I was lucky enough to have amazing support around me to reach my goal and raise enough for my first treatment.
On July 24th 2021, I made my trip to Arizona to the Arizona Center For Chronic Pelvic Pain to see Dr. Michael Hibner
The procedure went very well!
There was 200 units of Botox injected into my pelvic floor and obturator muscles as well as a Pudendal Nerve Block.
I couldn’t be happier with my experience at Arizona Center for Chronic Pelvic Pain.
I was extremely nervous the morning of the procedure and Dr. Hibner and is staff were very comforting and understanding.
I want to Thank Dr. Hibner and staff: Dr. Kush, Jenelle and Dru for being so supportive and working with me relentlessly to get this goal accomplished.
You guys are an amazing team!
I possibly may need further treatments in the future, but I will cross that bridge when I get there.
For now, the focus is on Pelvic floor Physical Therapy and waiting to see how well my muscles respond over the next few months.
List of Doctors that have helped me through my Pelvic Pain Journey:
https://www.pelvichealing.com
https://azccpp.com
https://www.theclarkcenter.com/?utm_source=gmb_auth
http://sandiegosexualmedicine.com
http://www.oceanpt.com
