Small but mighty.
This is the phrase that I officially coined to describe the uterine fibroid that sent me on a 3-year sojourn through medical gaslighting and chronic pelvic pain that I was completely unprepared to handle. It all began one fateful Tuesday evening in the middle of teaching an in-studio yoga class. I was in the middle of squatting down in front of a full studio of yogis to demonstrate their next posture when I felt a gush of blood rushing from between my legs, running down my yoga leggings and onto the floor.
To my horror on the last day of my period, which is always light, I had bled through a tampon with a violent amount of blood and clotting. Nothing of the like had I ever experienced in my 25 years of menstruating.
What I was about to endure for the next 3 years I could have never been prepared for. Prior to that traumatizing evening in the studio where I left a trail of blood from the studio to the bathroom before bravely (or stupidly) walking back in to finish teaching my class, I was blissfully uneducated and nearly unaware of many medical terms and conditions such as fibroids, pelvic floor, endometriosis, and perimenopause. I was also blissfully unaware of the many medical conditions that women face that can lead to pain, suffering, infertility, and mountains of debt.
Before we dive in, I want to back up for a moment to share my medical history prior to the fibroid yoga studio incident. I was 38 years old at the time my uterine fibroid officially announced itself, but since my very first menstrual period I have had painful periods and intense PMS symptoms. I shared this with many different gynecologists over the course of 20+ years and no one ever suggested preventative care or screening for certain conditions such as cysts, fibroids, or endometriosis. The only treatment I ever received was in the form of the birth control pill which is over prescribed as a solution to pelvic pain, fibroids, cysts, and endometriosis and is widely an ineffective treatment.
I am childless and never had any health issues or concerns prior to this incident, again I was living blissfully unaware of the suffering millions of women endure and the costly medical system I was about to navigate. According to the Society for Women’s Health Research up until the 1990’s “essentially all health research was conducted exclusively or predominately on men and by men.”
As I moved farther along in my journey, I kept coming back to the notion that if the medical community had more of an interest in funding, advocating, and researching women’s reproductive health that we would have access to effective and less painful diagnostic tests and treatments as well as to quality care. Eventually after 3 years of dogged determination I found a team of specialists and my official diagnosis is that I have 2 uterine fibroids, pelvic floor dysfunction, most likely caused by the diagnostic procedures and botched fibroid removal, as well as a possible diagnosis of endometriosis. We cannot truly diagnose endometriosis unless I have surgery to which we are not considering unless the chronic pelvic pain returns, and I pray it never does.
Let’s outline some facts about 2 reproductive disorders that are widely misunderstood and that have a debilitating effect on women’s health:
-Women with fibroids were reported to have endometriosis more often than those without fibroids.
-Endometriosis affects roughly 10% of reproductive age women and girls globally, that is 190 million people.
-Endometriosis is considered the primary cause of chronic pelvic pain in people who menstruate and are of childbearing age.
– It is a chronic disease associated with severe, life-impacting pain during periods, sexual intercourse, bowel movements and/or urination, chronic pelvic pain, abdominal bloating, nausea, fatigue, and sometimes depression, anxiety, and infertility.
-The average length of time for a person to receive a diagnosis of endometriosis is 8 years and the only definitive way to diagnose is through laparoscopic surgery.
-Endometriosis can cause infertility in about 30-50% of people.
-There is no current cure for endometriosis.
-Uterine fibroids affect up to 80% of people with uteruses before age 50 and affect up to 75% of women in the U.S. alone.
-Black women are more affected than other ethnic groups.
-The only permanent cure for fibroids is a hysterectomy, fibroids are the reason for more than 200,00 hysterectomies per year.
-Experts still are not sure what causes fibroids.
Phew that is a lot of facts and I want to note A LOT of women that are suffering with no known cure.
As a woman I never received proper education on my reproductive system and the signs and symptoms to look for that may indicate an underlying condition. I know from the countless conversations that I have had with acquaintances, friends, and family that they also have a very limited understanding of our hormones, potential reproductive health conditions and symptoms to look out for. In my opinion I believe that all girls should receive mandatory and comprehensive education on our reproductive system, hormones and potential illnesses and disorders so that we are armed with the facts as we age!
I want to pause here and say that today I have been pain-free for over 1 year and because of my ability to advocate for myself and resources I was able to find a team of specialists that understand my complicated situation. My health insurance covered none of the costs associated with receiving care from the specialists, I paid out of pocket and incurred a large amount of debt in my journey to become pain-free. In the darkest and most painful moments I vowed that once I was pain-free I would dedicate time to being an advocate to help lessen the suffering of other woman and to bring awareness to women’s health issues that have been silenced for way too long.
Ok back to my uterine journey!
Here we are February 3, 2021, the day that marked a turning point in my life. After arriving home from teaching that evening the bleeding and clotting worsened as I soaked through heavy pads, tampons, and towels that I had laid on the bed to protect the sheets and mattress. I woke up around 2am with blood pouring out of me at an alarming volume, and finally decided I needed to go to the ER.
The ER visit was demoralizing with 2 male doctors, an attending and resident, who both concluded after a negative pregnancy test (they were all very concerned about pregnancy to which I kept reiterating was nearly an impossibility and not a concern of mine at all!) and a mortifying pelvic exam that I was “having a normal period for a woman my age and there was nothing they could do for me.” The suggestion was offered that I could also be entering early menopause, and this is just a normal sign for this time in a women’s life. Both doctors stated that the levels of bleeding and clotting were not concerning, and I could bleed like this for weeks with no cause for real alarm.
They also suggested that I could have uterine fibroids and refused to perform an ultrasound on me since it was not an emergency scenario. The visit to the ER left me upset, confused, scared and with a $2,000 medical bill and no closer to an answer.
The following day I set off to receive an ultrasound and to secure an appointment with a new gynecologist, having changed insurance policies a few months prior since I started my own business and was now self-employed and didn’t have a gynecologist that was in-network that I had established care with. As a self-employed individual I have health insurance through the ACA marketplace and unfortunately access to specialized clinics and experienced medical professionals through this type of insurance is unavailable.
From February 3rd, 2021, my life was never the same, it was literally flipped upside down. I am greatly condensing details because I want to give you the big picture of the journey I have endured, and I know that my journey unfortunately is not unique. I quickly underwent a diagnostic procedure called a hysteroscopy which is a medical procedure used to diagnose and treat certain conditions that goes in through the cervix to reach the uterine cavity. Supposedly you should receive at the very least local anesthesia (in my opinion this procedure requires general anesthesia to avoid damage and pelvic floor dysfunction) however my doctor told me this was a standard procedure that required no medication, was painless and I could take 2 ibuprofens before the appointment.
I have no words for the amount of pain I felt during this standard diagnostic hysteroscopy, I mean shaking, sweating, biting my hand and screaming out in pain. My pelvic area has never been the same since this first hysteroscopy. This extremely painful procedure revealed what we already knew: That I had a submucosal uterine fibroid, and yes, she was small but mighty.
I vowed to never see this Gyno again since he broke my trust by performing an extremely painful procedure without proper numbing or warning. I quickly found a female OBGYN, and she assured me that she could “remove my fibroid in office with a simple procedure called Myosure” I was ignorant and desperately wanted a solution of profusely bleeding and releasing blood clots larger than a golf ball. I jumped at the opportunity and booked the removal! This I thought was going to be the key to returning to my pre-fibroid body, I had found the solution.
The day of the procedure to “remove” the fibroid the doctor gave me a pill to take for cervical dilation (taken the night prior), and a combination of Vicodin and valium to for relaxation and pain relief. But guess what I didn’t receive? I received no local, regional, or general anesthesia for my cervix. To make it worse this Myosure procedure is a hysteroscopic treatment (same procedure I underwent for diagnosis just a few weeks earlier). This removal was more painful than the first hysteroscopy and as I writhed in pain and squealed, I gritted my teeth as the doctor tried to get into my uterus. At one point she stopped and said, “I am giving you another valium to help you relax, if you can’t handle the pain in office, we will have to book a surgery center and it will be much more expensive.” Well money talks, and I dug in deep, told myself the story that I was strong and brave, and the pain was a temporary and the removal would be forever. Somehow, I made it through, and I have a feeling that a lot of women have been in the same position as me, in excruciating pain and gritting their teeth as metal rods are shoved into their wombs.
I left that doctor’s office that day thinking that I had made it through the worst and now I could put this chapter of my life behind me. I had never been more wrong in my entire life.
What ensued was a living nightmare. Following those back-to-back hysteroscopies, I was never the same. I had bloating and pelvic pain that grew increasingly worse over the next few months. The female OBGYN who performed the removal told me in my follow up visit that she was very pleased with the results because she was able to reduce the size of my fibroid. REDUCE?! I asked dumbfounded as I thought I had a removal. Little did I know, and she didn’t explain is that I have the rarest kind of fibroid that is submucosal so it grows beneath the surface of the lining (endometrium) and she could have never removed this type of fibroid in office. Again, small but mighty. I also explained to her that I didn’t feel right in my pelvic region, I listed off the pain I was feeling and the other symptoms. She dismissed this as part of the process and said I should feel normal in a few months.
As the symptoms worsened into excruciating pelvic pain, painful bloating, and UTI like symptoms she gave me a standard urine test for a UTI. Once that came back negative and the symptoms became unbearable, she stopped taking my calls, wouldn’t schedule another appointment with me and told me it sounded like a bladder disease, and I needed to see a urologist.
I bounced from urologist to urologist with conflicting opinions of it could be a bladder disease interstitial cystitis (which is a disease with no cure and can be debilitating), another said it sounded more like pelvic pain and another said “there could be no known cause of my pain since I looked good, I appeared healthy and I may have to live in chronic pain and just manage it, as you know a lot of people do with something like back pain.” Cue me sobbing uncontrollably in his office.
By way of my hairdresser, I was referred to a local gynecologist who specialized in women experiencing issues and this was the beginning of putting together my healing puzzle. Dr. Christina Pena listened, did comprehensive tests, and found that I had 2 infections, most likely from the botched removal. The infections were in my bladder and uterus and required very specific antibiotics to clear and left untreated for too long could lead to embedded infections and infertility. Dr. Pena also suggested that my pelvic floor muscles were most likely traumatized due to the painful procedures causing pelvic floor dysfunction and pain and to find full relief I needed to receive pelvic floor therapy (PFT).
At this point I had never heard of pelvic floor therapy, but I am always open to new methods of healing and non-invasive treatments. And I had a light bulb moment; if doctors recommend physical therapy when you injure your shoulder or have knee surgery then why wouldn’t you recommend physical therapy for your pelvic region after trauma, illness, or surgery?!
After my first PFT appointment and treatment I felt relief in my abdomen and in my pelvic region for the first time in 5 months. Is this too good to be true? I vividly remember calling my partner who was out of town and telling him the relief I felt and pondering out loud “is this the placebo effect because 2 medical professionals finally listened and validated what I have been saying all along.”
With the prescribed antibiotics to clear the infection and weekly visits to my PFT I started to feel nearly normal again. I felt relief and immense gratitude for both women. It is also important to note at this part of the journey that both my Gyno and PFT do not work with insurance companies. Every visit, treatment and test were 100% out of pocket. I moved deeper and deeper into debt to continue to fund my medical treatment. Pain is one hell of a motivator.
After my completion of antibiotics and the recommended PFT course of treatment I was cleared to resume normal life and was pain free, but not for long.
A few months later after a very stressful period of time in both my personal and professional life (I am a wellness professional and entrepreneur and was pushing myself very hard to launch new programs) all the symptoms returned with a vengeance. I was deflated and in disbelief that yet again the chronic pelvic pain was back.
My flare ups continued for 7 months, a chronic cycle of spiking pain, pelvic floor therapy, relief from pain and then back to pain again. When I experience a flare up there isn’t just 1 symptom it is as a group of symptoms that affect all areas of my life, making it hard to work, make social plans or even cook dinner: extreme bloating and inflammation, pain that radiates out from my pelvic region into my bladder, low back, upper legs and rib cage, frequency and urgency of urination, back pain, and all of this can also lead to stomach upset and GI pain.
When your body is in this type of chronic pain then your nervous system becomes dysregulated, and this makes your tolerance for pain decrease. It is as if your pain volume is stuck on the highest setting. It would seem after the past 2.5 years of the chronic pain roller coaster my volume control was super glued to high. I spent many days just getting through what was necessary for work so that I could return to my heating pad that provided me with at least a minimal amount of pain relief.
I never gave up hope, I leaned into my spiritual practices and asked for divine guidance and strength. I researched everything that I could via Google, from support groups to social media postings to medical articles. I was leaving no stone unturned. I was going to break free from this pain.
After many sleepless pain-filled nights of Googling, I found a clinic local to me that specializes only in pelvic pain rehabilitation. I couldn’t believe my eyes that such a clinic existed, and I hadn’t found it before. It was a true beacon of hope. I quickly booked an appointment at Pelvic Rehabilitation Medicine and anxiously awaited the day of my appointment hoping and praying that this would be the key to unlocking my mystery pain that was making me a shell of my former self.
This, my friends, is the turning point in my journey to understanding the root causes of my pelvic pain and to becoming pain-free. Their website best describes their specialized pelvic pain treatment protocol “We provide a unique, in-office, ultrasound-guided approach to pelvic pain through our PRM Protocol. Our specialized treatments target spastic pelvic floor muscles, pelvic inflammation, and nerve pain, with the objective of reversing the inflammatory cascade, resetting the pelvic environment, and optimizing pelvic floor functionality for a pain-free life.” After my initial visit and exam my doctor confirmed what I had been screaming from the rooftop for years and was told by traditional doctors was “not possible.” She confirmed that yes, it is possible for my pelvic floor to have trauma from the 2 back-to-back hysteroscopies (and that I should have received anesthesia), and that fibroids can press on nerves causing discomfort AND my symptoms could possibly be endometriosis. What a convergence of issues, but also, I had been telling doctors for years that this is what was causing the pain.
Deep relief washed over me as I knew I had finally found a specialist who understood my condition and had a treatment protocol in place with a high rate of success. We decided on my course of treatment: A set of 6-weekly external trigger point injections guided by ultrasound with a pudendal nerve block and two daily medications. The goal of this course of treatment is to release the tension around the nerve as well as reducing the neurogenic inflammation which continues to irritate the nerve. I was also prescribed an anti-depressant, amitriptyline, (for chronic pain signal disruption, not depression) and a compound nightly suppository of valium, baclofen, and gabapentin to help with nerve and muscle spasms.
I am happy to report that my pelvic pain journey has a good ending, I have been pain-free for over 1 year as of today. I gained valuable knowledge, tools, and a team of specialists to help me if I do every experience a flare up again, and in this, I find deep comfort. We are still unsure if I have endometriosis, but I do present with most of the symptoms for this disease. We do know that I have 2 uterine fibroids that are being monitored via ultrasound on a yearly basis.
Holding true to my vow of helping others that are suffering from pelvic floor pain or dysfunction, I am here to break the silence. There is no reason to continue this kind of suffering, no one should have to “just live in pain.” I am proudly stepping forward as an advocate and a voice for women who need support and community. Let’s break the silence and demand better diagnostic procedures, access to care and funding for research.
Access to quality care shouldn’t leave someone in tens of thousands of dollars in debt, let’s come together for change!
If you or someone you know is struggling with chronic pelvic pain, endometriosis, fibroids or cysts I have created a self-paced guided Pelvic Floor Wellness Package to support you in your journey towards alleviating your discomfort and pain.
You can learn more about my “Relax and Restore Your Pelvic Floor” package here!