From debilitating pain to empowering others through pelvic floor PT: My endometriosis healing journey
HI! I’m Dr. Jackie Roelofs, a pelvic floor physical therapist, holistic endometriosis and fertility coach, and endo warrior who overcame years of pelvic pain and fertility issues to becoming a mama of two. Now I help other women suffering from this disease heal their bodies from the inside out, get pregnant, and live their lives joyfully pain-free. For endometriosis month, I’m sharing my story here. Welcome!
Endometriosis impacts 1 in 10 women…
and I was one of those 1 in 10. But I did NOT fit the hallmark stereotype of someone with endometriosis (You can read my comprehensive blog post about the disease, surgery, fertility, and holistic treatment for endometriosis here).
But I knew intuitively that I had endo at least 2 years before I ever got a clear diagnosis. It was just a matter of finding someone who believed me (which is harder than it sounds).
Sure, my periods were horrible and abnormally heavy my entire menstrual life. 2 weeks before my period, I had bloating so bad my pants didn’t fit, my breasts hurt like someone had punched me. But I had been socialized to believe that was within the realm of normal.
My periods were so irregular, I assumed that was why my symptoms were so bad. (And was told by doctors it was fine not to have a period as long as it came a few times a year - and when I wanted to get pregnant “there is medicine for that”)
I had always been the kind of girl to tough it out and put on a happy face, rather than share my pain… so I went on with life and didn’t call my symptoms debilitating… because overall, they were not.
I got on and off birth control, so the symptoms I had were masked by the pill that doctors told me would regulate my cycles for years.
When I was 27 I decided to get off of hormonal birth control
It didn’t sit well that I didn’t know if my chronically irregular cycles would make getting pregnant difficult when the time came.
As soon as I got off birth control, my cycles returned- but 10 days before my period the back pain I’d been having got worse.
It got so bad, that I started also having sciatic nerve pain shooting down my leg.
My period came and went, and I was miserable. But my nerve pain started to reside, little by little.
A few weeks later, though, the back pain became debilitating. I had the symptoms of an acute herniated lumbar disk - I couldn’t cough or sneeze without sharp stabbing pain, nerve pain shot down my leg, and both sitting and standing were extremely painful.
“Nerve pain shot down my leg, and both sitting and standing were extremely painful”
I had been tracking my cycles and ovulation…
since that was my goal when I got off the pill - to understand my body better for future fertility- But what I noticed is that my flare up in back and leg symptoms were lining up with the 7-10 days before my period started.
There was clearly a musculoskeletal issue going on in my back- most likely a herniated disk - being a smart girl in PT school and surrounded by physical therapists, I knew this injury should resolve within 6-12 weeks.
But I also suspected something else going on. I had gotten off birth control right before this all happened- i knew that my hormones must be playing a role somehow.
I got my hormones tested and was told I had PCOS.
Though it made sense given my chronic cycle irregularities, PCOS would not explain the pain I was having. I asked about endo, showing my OBGYN my charts and when I had the most pain.
I was told “it’s hard to diagnose that” and “you’d have to have surgery for us to know.” And the conversation ended there.
But my pain didn’t stop, or even start to improve.
The pain never improved… it evolved.
Always there, but worsening before and during my periods. I even started to notice pain around ovulation.
A normal musculoskeletal low back injury would not present this way. I knew this- my professors in PT school emphasized the importance of differential diagnosis and central nervous system sensitization (that’s for another blog post!), but even as I was in PT school and seeing amazing orthopedic PTs, no one thought something else was going on but me.
Months went by and I was debilitated, fighting my way through each day- afraid to tell people how bad it really was.
I looked healthy, and the girl they knew ran races and worked out daily. But secretly I was afraid to say yes to simple outings, short hikes, even a Pilates class because I knew it might flare up my pain for several days or even weeks.
My clinicals for PT school were coming up and I was terrified of the physical demand- I knew I’d have to be on my feet all day and commute long distances, and be required to lift 50-200 lbs on a daily basis- but I HAD to pass my clinicals to finish my doctorate I had worked so hard toward for YEARS.
(on average, women with endometriosis lose at least 1 job due to the debility it causes. I almost never got to finish school and GET a job because of my pain)
My gut knew it was endometriosis, but every doctor and physical therapist just brushed it off when I asked.
Even the $500 visit I paid to see a functional medicine OBGYN didn’t give me answers besides that my Omega 6 levels were high (I get it, I have inflammation?)
I started to look up research articles about sciatic pain and endometriosis . I could barely find anything, but a few case reports confirmed this could be the case.
In school we learned that if your PT treatments aren’t “working” … there could be an underlying systemic issue causing the pain, not a musculoskeletal one.
But in my case, I now know that it WAS musculoskeletal- AND it was systemic. Most of all, it was a nervous system that had learned so well to be in pain and to disregard my own intuition because of the messages I’d been sent.
There wasn’t a category for that - in my textbooks, in my doctoral level classes, or in any of the “experts” offices I had frequented to get answers.
As time went on I started to lose trust in myself because every doctor I had made me feel crazy.
I was so alone, so isolated. I was starting to feel depressed. I lived with anxiety about what physical demands my body would be out under that day at my clinicals at the hospital . I was constantly fearful about the demands my day would bring - and how I would get through without a full-on flare up.
I was living my life in fear.
So I tried to hide my pain… meanwhile getting more hopeless as the months went by.
A year passed and my pain had not resolved- it evolved.
My back and leg pain still burned- and got so bad before my period it was unbearable.
But now- I also noticed that I would have excruciating inner thigh and pubic bone pain when I was approaching ovulation-
3 days of the month, my pain would be so bad I could barely walk up a flight of steps (seriously)
It was embarrassing- here I was getting 70 year old women with back pain better, helping athletes be able to run again after injuries, but my own pain couldn’t be healed- not even by the best PTs in my city.
I used to run half marathons, but at this point, I could barely walk 1/2 a mile without burning in my leg.
Every day I woke up and had to do a 45 min foam rolling routine JUST to minimize my symptoms - which lasted until about 10am when the burning started again. Then I just had to get through the rest of the day. Looking back, I have no idea how I did it.
Would I have to lift another 200 lb man who couldn’t move?
In March 2020 the world shut down. It turned out to be the biggest blessing for my body.
My nervous system needed that break to rest and make steps toward healing.
But at this point, I’d actually started to accept that I’d never live without pain. I really believed I’d never be able to be active again.
In May, I decided to make one last Hail Mary attempt at getting answers. I made a virtual appointment at the Center for Endometriosis Care with one of the top endometriosis specialists in the world (who happened to live in my city).
A friend had told me if I ever considered surgery (which is also the only way to get a diagnosis for Endo) to MAKE SURE I called them first.
Still, I second guessed myself. I thought about cancelling the appointment because I was afraid it would, once again, leave me feeling crazy. But in my head, I had decided if I didn’t get any clarity on a potential endometriosis diagnosis at this appointment, I would give up on it.
Just as I was second guessing myself, 2 weeks before my appointment, I had one of the most intensely painful periods of my life.
I was curled up, writhing in pain on my bed for hours. I considered going to the ER, but the pain finally responded to the high doses of Tylenol.
Validation and weeping
As miserable as it was, I was almost thankful for that horrible period because it reminded me I did have REAL symptoms, when all my experiences were increasingly confirming that there was no help for me - I’d just have to live like this.
When I got on my call with Dr. Sinervo from the Center for Endo Care, I had prepared about 20 pages of intake paperwork for him. He asked me to tell him my story.
I had barely told him my story when he said - “Jackie, I have seen thousands of cases of confirmed endometriosis, and they all look a little different. This sounds like endo.”
I paused, taken aback. Since he didn’t gaslight me I started gaslighting myself - “well, my symptoms are very musculoskeletal and I do think I had a true injury at some point.”
He replied “Why would your symptoms be lining up with your cycles like this if there weren’t something else going on?”
What he said there was what I had been saying to myself, to doctors, to friends, to PTs from the beginning - but I had stopped trusting my intuition because I had not found anyone to validate my experience in my own body (that was accompanied by doctoral level medical knowledge to be clear!)
Dr. Sinervo continued on to assure me me that when he THOUGHT he saw it based on subjective information, he statistically was right 97% of the time when he went in to do surgery. (Remember, surgery is currently the only way to confirm an endometriosis diagnosis- you can read more about it here)
Alas, My attempts at gaslighting myself failed. Dr. Sinervo was in front of me saying the words I hoped someone would say for SO long-
“Your pain is real, and I can help you.”
Dr. Sinervo is one of few experts in the country who perform endometriosis excision surgery - the gold standard for endo treatment.
He told me that he had surgery openings literally 2 weeks from then - due to COVID, patients that normally travelled to see him were not coming in. Usually the wait list was months-long, but because of current circumstances, there was actually availability. I had to decide quickly, though.
I got off the phone and wept.
Someone had validated my pain. And not just anyone - on of the THE most sought-after endometriosis experts in the world.
He validated that my symptoms were not normal - that they were debilitating.
He validated that my intuition about my body and the objective data I had collected through tracking my cycle and my symptoms all led him to the same conclusion - even though I undoubtedly had initially had a musculoskeletal injury, my endometriosis had grown while I was on birth control, and when I got off, the circumstances were just right for one inflammatory event to set off a cascade of endo’s systemic effects in my whole body.
Most importantly, Dr. Sinervo gave me hope that I could actually heal. That I would be able to run again, to move my body, to dance.
I called my mom and wept some more. Now it was tears of sadness because surgery seemed like it might be the answer - but how would I ever pay for it?
48 hours later, I called the Center for Endo Care to Schedule my endometriosis excision surgery.
Surgery day
I showed up at Northside Hospital in Atlanta on June 30, 2020 at about 5am for my endometriosis excision surgery. I had done a bowel prep the day before, gotten a good nights sleep, and was excited about the burger I planned to eat after my operation.
There was a part of me that was nervous - what if they didn’t find anything and I was left again to seek answers - WHILE ALSO recovering from a useless surgery? (This is, sadly, the story for many people who DO have endometriosis but do not get surgery with a trained excision specialist- if you are readiing this and considering surgery for endometriosis, PLEASE do your research first!!!)
But most of me was fiilled with hope. I trusted Dr. Sinervo, and I trusted myself. I was still filled with so much relief that my understanding of my own body was probably right - and we were about to find out for sure.
I came out of surgery. Dr. Sinervo explained to my dad (also a surgeon who could speak the language) what he found in the OR - definitely endometriosis, throughout different parts of my pelvis, including my appendix and my ovaries, behind my uterus, and on my bladder. What he explained is that some of these spots were so subtle that they most definitely would have been missed by a general gynecologic surgeon.
The pathology reports came back positive for endo too. While my case was not as severe as some (Dr. SInervo regularly has to do bowel resections due to endometriosis regularly being found on the colon) - my symptoms were horrible, and I was not able to live my life. The wild thing about endometriosis is that some people have mild to no symptoms, and only find out about endo when they have trouble conceiving. Severity of disease is not always correlated with severity of presentation upon operation.
Recovery…
Recovery was, honestly, quite difficult physically. Changing positions hurt miserably, it was hard to get my pain under control, and I had to sleep upright due to the gas and bloating in my belly (in these surgeries, they blow your tummy up with CO2 gas, and it takes a while to go away, on top of the swelling and fluid that comes after having abdominal surgery)
But it was also one of the best weeks of my life. My mom came to take care of me that week, so she and my husband waited on me hand and foot while I switched between napping and binging Gilmore Girls. Funny how as women, being forced to slow down and receive care and help is actually such a nice thing.
When I first went on a short walk to the stop sign and back, I noticed my hip didn’t burn. It felt free to move for the first time in years. I felt filled with hope.
I had a long way to go, but as good as it felt to walk NOW, I knew with more recovery time things were only going to get better.
In reality, it took over a year to REALLY feel good. I dealt with a lot of after math of surgery - including one ER visit after the most intense and traumatic pain I’d ever had in my life (I thought I had a bowel obstruction, but I think my body actually was having a crazy reaction to the first time ovulating post-surgery). In COVID times, my husband wasn’t allowed inside with me.
I also dealt with severe bloating, constipation, and dietary sensitivities.
While surgery was the ticket I needed to have access to long-term healing, I also needed:
Pelvic floor physical therapy to reduce scar tissue and abdominal adhesions, and also for the longterm impacts of the pain I’d had for years
A very specifically dosed return to exercise plan that honored my nervous system’s process in responding to movement - our brains are very good at learning to be in pain, so even after the removal of the “problem”, we have to rewire things to teach our brains we are safe as the next steps to becoming pain-free
Functional Medicine and nutritional support to figure out my hormone health and gut issues
Mental Health therapy
TIME!
Changing the game for others with endometriosis…
I am a pelvic floor physical therapist in New Orleans, treating women with endo worldwide both in person and virtually.
I am particularly passionate about helping women with endometriosis, because as one of the 1 in 10 who was missed by our medical system - even highly trained holistic providers, and now I know that everyone with endo doesn’t look the same.
If you have ever had:
severe periods (even if it’s not every time)
Low back or pelvic pain that doesn’t resolve
Gut health problems, IBS, and severe bloating
bad PMS
Abdominal pain (especially as a teen)
infertility
Hypermobility
You may have endometriosis. Even if it’s not - there is HELP out there for you. Please don’t stop until you find answers. I almost gave up, but I’m so glad that I’m here now, able to educate and empower women who have been gaslit so much that they start to gaslight themselves.
If you are looking for help with these symptoms, think you might have endometriosis, or have some other kind of unresolved pain or infertility, I’m going to tell you the words that made me weep:
You don’t have to live this way forever, and I can help.
Please send me a DM on Instagram, fill out a contact form, email me, or learn more about how getting pelvic floor physical therapy for endometriosis can help you. I am a pelvic floor physical therapist in New Orleans, and I offer virtual services and endometriosis coaching worldwide. I’m here to support you - and I know there is hope for you, even if you don’t (yet!).
Next on your reading list
Endometriosis: The complete guide to symptoms, fertility concerns, treatment options, and holistic management Learn more about endometriosis symptoms, surgery, fertility, and pelvic floor PT for endometriosis.
Endometriosis Coaching Programs: Get help for endometriosis and painful periods!
Fertility coaching and preconception care with endometriosis - It’s a myth that endometriosis means you will definitely be infertile. You can do SO much to prepare your body to TTC with endometriosis- and I’m here to guide you!
BTW - Hi!!!
I’m Dr. Jackie Joy, a New Orleans Pelvic Floor Therapist, holistic fertility coach, and endo warrior. Think of me as your pelvic health bestie for all things womens health, preconception, pregnancy, and postpartum . If you’re looking for more support on your endometriosis journey, I’m your girl!
