I started to draft this shortly after my 1st post. But life has been doing life things! Ya know? But I’m happy to be posting it, even if later than intended. 

Anyway, let’s dive in! 

If you read nothing else, please read this. This is up top for the TL/DR folks, since my ultimate wish is you save time, money, and suffering. Regardless of your genitalia, if you’re having any abdominal, bladder, anal, pelvic, gut, or reproductive tract pain—this is for you! Gynecologists, urologists, and gastroenterologists are not the end all be all specialists for these issues. It took me 20 years to shockingly discover how few doctors know, even when they should, that pelvic floor PT isn’t just for pregnant and postpartum parents or pelvic injuries. Pelvic floor PT can treat IBS, bladder and anal pain, weak or tight vaginal and anal muscles, vaginismus, and more! Don’t let anyone tell you otherwise. For soft tissue imaging, ultrasound isn’t King. Request a MRI because, from experience, it’s likely no one will order one! CT’s are mostly limited to imaging bones and masses. MRI won’t catch everything, either. An exploratory laparoscopy is important if you’re still having pain but “your labs and imaging look great”! 

Before I dig into the last 4-5 years of my life, you need some background info. I had excessively painful periods from mid high school to my mid 20s. Then, I randomly got a break. I also had pain during pelvic exams and intercourse. In Summer 2004, my gyn ordered an exploratory laparoscopy. He didn’t see any endometriosis. He also said that I could try “vaginal dilators” but didn’t provide any additional info. BRAVO to him for suspecting and testing for endometriosis and suggesting dilators, unprompted! He’s so close to being the most helpful doctor ever (in my last 22 years), and the last of his caliber for me until 2023. He should’ve referred me to pelvic PT, but he didn’t. At 21 years old, I knew next to nothing about anything, so I certainly wasn’t asking. 

I started birth control in 2003. Over the next 8 years I tried several kinds. I endured many side effects and thought it might be affecting my mental health. In Summer 2011, just shy of my 27 birthday, I had a tubal ligation. (The amount of begging and demanding to get there… Penis owners experience far fewer barriers. Yay sexism!) I was good with not having kids but planned to adopt if I changed my mind. Several things shifted a few months before and after that surgery. The combo of everything improved my mental health dramatically. My gut and body pain had steadily increased for a few years, resulting in a few urgent care and ER visits. But reproductively I was a really happy girl for a while. 

I started getting regular breakthrough bleeding between periods in Summer 2015. I just dealt with it. My PCP in 2016 said I was “too young” for perimenopause (not true, although rare). She wouldn’t test my hormones, didn’t suggest anything but birth control, and I definitely wasn’t doing that again. (No referrals were made. No other vital diagnostic testing was done.) In 2018, I stopped my acne pill because it made me pee a lot. My acne was vengeful! Reluctantly, I tried birth control again in Spring 2018. I didn’t immediately put it together, but it TANKED my mental health. Turns out I was right! After much Googling, I discovered that somehow every doctor and pharmacist I ever had magically missed that it halves the bioavailability of Lamictal. Seriously?! (Lamictal is usually prescribed for seizures or Bipolar Disorder. I take it for MDD and GAD. My body either doesn’t respond to or loathes all antidepressants. If anything is reliable about me, it’s that my body is rarely typical.) 

I marched into my PCP’s office 6-ish months later an absolute wreck! She did a quick search of her own and sure as shit found the same info. She apologized profusely, stopped the birth control, increased my Lamictal dosage to reverse my meltdown, and referred me to a dermatologist. But suddenly my periods, which were already irregular, went wild. I bled heavily for months, which made me crazy sick! 

First line options for heavy bleeding are continuous oral birth control (no inactive pills) or an IUD placed (read: jammed) inside the uterus. I tried the Mirena. My uterus never stopped hurting. After 6 days of disabling pain I got that sucker removed, gave my unempathetic gyn the boot, and talked with a new gyn about options. She said I had 2 last resort options: an endometrial ablation or a hysterectomy, both of which end your ability to carry children. No problem! I’d already had my tubes tied. I would’ve been thrilled to evict my uterus, but I wasn’t prepared to accept a 2-month hysterectomy recovery if I didn’t have to. (No other differential diagnostic testing was done prior to the ablation.) 

Let’s talk anatomy: the lining of the uterus is called the endometrium. It’s what sheds and causes periods for menstruating uterus owners. Most of the endometrium, although not all because it is protective, is supposed to slough off during periods. For some folks, the endometrium thickens, causing heavy bleeding. An endometrial ablation is done under general anesthesia. The endometrium is scrapped out and then cauterized. Depending on how close you are to menopause, menstruation will slow down or stop completely. My bleeding slowed significantly, but I was spotting 15-25 days per month. At least I wasn’t nearly passing out from blood loss! A naturopath started me on Vitex and that helped a lot! I took that for about 3 years after my ablation in May 2019. 

With the stage now set, the most important point to begin telling my pain saga is at the onset of the most regular and severe pain of my lifetime. The beginning of the pandemic was extremely stressful. I definitely wouldn’t want a repeat. What’s oddly “helpful” (retrospectively) was it coincided with me getting sicker. If a job could be done remotely, employers had to make it happen. I started working for a different clinic in February 2020, 1 month before the shutdown. What a wild ride as a brand new employee! But, I was massively blessed. They were INCREDIBLY supportive, offered a lenient hybrid work model, and flexed my hours whenever possible for the bajillion urgent care, ER, and office visits I started needing (costing roughly $5,000/year). 

Once the stay home mandate was lifted, at the drop of a dime, for the first time in my career, I could work from home when I couldn’t conceive of driving… if I could sit upright. That’s the rub!

This marks the beginning of the utterly devastating time in my life where the simple yet Herculean feat of sitting upright became a source of “celebration”… for the next 4 years. At some point (not sure when), I couldn’t eat at my kitchen table anymore without a memory foam bed pillow. Even then, this was tolerated infrequently, briefly, attempted only (sometimes unsuccessfully) when what I was eating was too precarious to be eaten on the couch (e.g. ramen), and literally impossible during a flare. 

My abdominal and pelvic pain in 2019 was intermittently extreme. But the time between flares dramatically shrunk in 2020. By my 37th birthday that year, I took a nosedive! I sometimes laid on the floor on a yoga mat I kept in my office, so I could have a makeshift “bed” as needed. So humbling! I worked a desk job for goodness’ sake, and just sitting in a chair was sometimes difficult or impossible! I had been married less than a year. This was supposed to be the time of my life! But here I was. I’d roll out my “bed” when the pain was so bad I was sweating and could barely breathe, curl into a ball, and lay as still as possible. I anxiously hoped, every time, that no one knocked on my door, forcing me to explain myself. The only gift the universe had in store for me then was exactly that – no one ever saw me laying on the floor. I’m still so grateful for that. 

Prior to this, my overall body pain was persistent but low grade. Occasionally it spiked to medium grade but for discrete periods of time. This was a longstanding issue which started intermittently in middle school, became nearly constant in high school, and was never properly investigated. It worsened in my 20s. I consulted a few doctors about it, resulting in small helpful interventions, although no diagnosis. But at this point, I was globally dysfunctional. My pain was moderately severe, constantly. By 2021, I couldn’t use the stairs at work. It took 10 minutes to walk 1 block to and from my car – double my usual time. I bought cork-bed slippers because just getting out of bed in the middle of the night to pee, due to the pain in my feet, made me want to collapse. 

In Summer 2021, sadly my employer’s benefits package no longer met the needs of my family. For years, I’ve continued to miss that spacious office, job role, and company culture that afforded me the ability and privilege of accommodating my medical needs, whatever they were on a given day. When I was switching jobs in July 2021, my levels of pain and disability were climbing, regularly and sharply. Then… my period just. stopped. for a few months…weird! And this pattern continued for years. I visited my PCP and a new gyn the 1st time it happened. Birth control wasn’t. an. option. Here begins my Groundhog’s Day where everyone pushed it as a panacea, with near Holy Grail fervor. My hackles went up at every visit. That probably contributed to the slightly elevated blood pressure readings I now had, in addition to medical gaslighting and chronic pain. I still wasn’t ready to accept a lengthy hysterectomy recovery. Current me is screaming, “Just do it! Please!” (Let’s continue this BS pattern, shall we?! Like a sarcastic jig – No referrals were made. Wee! No differential diagnostic testing. HOORAY! Finish with a kazoo honk.) 

I worked for a few months in an environment unique to me and didn’t like it. (It was worth a shot! I’m glad I tried it.) In November 2021, I returned to the work I was used, at a company with amazing medical benefits. Just what I needed! I wasn’t prepared to be blown away by working under the most abusive boss I’ve ever had. Plus, the company didn’t grant any flex time nor the ability to work from home. As a new hire I couldn’t access PTO for 90 days, so every minute I was away for a doctor’s appointment was unpaid. The timing couldn’t have been worse! It’s clear I’d risk torching my PTO in well under a year. I needed a solution, fast! 

Just before my 90 days, I scheduled a telehealth visit with my PCP. Tucked into a supportive co-worker’s office to avoid eavesdropping, I explained my situation and begged for a letter of accommodations. She wrote the letter and explained the likely options. I knew I didn’t qualify for FMLA since I’d been there less than 1 year. No accommodations of any kind were granted. 

But, I found out about PFML – a program that forever has my gratitude, even though it’s a small pain in the ass administratively. PFML itself (unless you’re also FMLA eligible) doesn’t protect your job. So I just crossed my fingers that the lack of empathy didn’t extend to firing me when I took a few days off per month for illness and doctors’ visits. Thankfully, that’s the one constant I’ve counted on; my job has never been threatened so long as I had PFML hours to cover the time off. The relief was cosmic at 12 months when I was granted FMLA. 

I started at a new job site in November 2022 within the same company. I took a 9-week medical leave between January and March 2023 to participate in a fibromyalgia treatment program–the running theory at the time to explain my disabling pain. Unfortunately, my pain wasn’t responsive to the treatment. The TMS series actually caused more chronic pain, which I’m still trying to treat (an exceedingly rare, and possibly unheard of, outcome). 

But this is my turning point, however slow! The treatment director referred me (a referral?! oh my!) to Lucas Briggs for PT, who has a subspecialty in fibromyalgia. Plus, while bedridden with a horrific flare in February 2023, an epiphany smacked me in the face. I pulled up Dr. Janelle Howell’s “Vagina Rehab Doctor” Instagram account. I followed her by (serendipitous) happenstance in December 2022, after a friend shared one of her reels. I followed her…frankly, just because it was interesting, and her humor is superb. Surely, it didn’t apply to me. But 2 months later I realized, “Wait…this does apply to me” and binged her content. 

Dr. Howell’s posts sparked a new, feverish wave of internet research. Pelvic floor PT could treat IBS and bladder pain! I made countless calls to providers I found online, trying to find a) someone who actually knew such treatments existed–they should have; it’s literally in their field! b) someone among the properly educated providers who was actually accepting new patients. 

I found Rachel Hofmann and started PT with her and Lucas in March 2023. Lucas, Rachel, and Rachel’s PTA Kate Johnson are phenomenal. They’ve literally saved my life. But I was extremely sick! It’s taken all of them, patiently and painstakingly, nearly a year to help me find the right combo of treatments! 

Meanwhile, 2023 kicked. my. butt. 

(To be continued)