By Joanne Bagshaw, PhD, LCPC and Sonya Worthy Okolo, PT
My day at our pelvic health clinic began as usual…scanning charts, prepping the room, grounding myself. But for Joanne, it was a day of life altering and affirming care. After years of unresolved and unexplainable symptoms, she arrived for a Pelvic Floor Therapy Evaluation stating “maybe this will help as I’ve tried everything else”. A brilliant, funny woman, Joanne is a sex therapist, professor of psychology, founder of Joanne Bagshaw & Associates, and author of “The Feminist Handbook”. At age 55, she was fighting a battle of years of chronic pain, and now menopause, with exhaustion and frustration at the impact of symptoms causing life disruption.
Our session began with listening to her womb story…a simple question I’ve asked many over the years: “when did you get your period and how did life change?”. The 90-minute comprehensive evaluation screened symptom patterns, lifestyle, trauma/fall history, spine-hip function, visceral mobility, and pelvic floor function. It was the beginning of putting puzzle pieces together…empowered and guided down a path where she was finally diagnosed with Adenomyosis and Endometriosis at age 55. Her experience and passion for women’s empowerment has pushed her to add a new, unexpected title to her bio: Endo Ambassador. Eleven months later from our first session and five months after surgery, Joanne is sharing her womb story in hopes of helping others.
How did life change after your period began?
I was never able to take hormonal birth control without experiencing difficult side effects like extreme bloating. Once I began menstruating, this was an issue for most of my adult life. I never found a birth control method that didn’t require me to compromise by accepting at least some uncomfortable side effects. I settled on an IUD that caused longer, heavier periods but did not increase the extreme bloating I was experiencing from what I now know was endometriosis*. The heavier and longer periods weren’t great, but I could manage it.
Looking back in your life, what can you now recognize as “red flags”?
The heavy periods with significant cramping, bloating, digestive issues and increasing pelvic pain after childbirth, I knew were indications that something was wrong. I had other symptoms too, like stomach cramps and leg pain, which, unless you are knowledgeable about endometriosis, aren’t obvious symptoms. I didn’t know where to turn for help. From my twenties through my forties, each doctor I saw just offered antidepressants or birth control. No one provided a diagnosis. Since I wasn’t depressed, I declined the antidepressant and couldn’t take hormonal birth control, so my doctors just suggested that I live with it, and for the most part, I did.
What have been your issues, self-care/treatment strategies, and how did symptoms impact you?
Throughout my adult life, I managed pain and inflammation through a healthy diet, regular exercise, and bodywork that helped manage stress and increase pleasure. What has worked best for my body is a combination of Rolfing, Pilates, daily walking and hot baths, and a Mediterranean diet.
But my self-care strategies became inadequate around eight years ago when my symptoms became debilitating. At that time, I had a uterine ablation to control my heavy periods. I now know that a uterine ablation is contraindicated for patients with pelvic pain, endometriosis, or adenomyosis (and I was not screened for these at the time of the procedure). Plus, I was perimenopausal, making my endo and adeno symptoms much worse AND I really needed to be on HRT but couldn’t take hormones due to the endo, so my muscular and joint pain became crippling at times. Plus, for a year before my surgeries, I had cyclical and sometimes daily labor-like contractions due to the ablation.
Over the last eight years I have missed so many events and opportunities both in my personal and professional life due to debilitating symptoms that, at the time, were unexplained. It was crazy-making. Sometimes, it was heartbreaking, and other times, it was enraging. Plus, the stress and fatigue of chronic pain is exhausting. And I can’t even get into how much money this cost me over the years in out-of-pocket medical expenses, just to barely function.
Thankfully, I have a very supportive family—my husband and daughter, who helped me through these difficult years.
How did providers respond to your symptoms over the years?
I have reported my symptoms to many many providers over the years. My symptoms progressively have gotten worse, and in the last eight years, I have seen:
- 7 Gynecologists
- 5 Physical Therapists
- 1 Orthopedic Doctor
- 3 Spine Doctors
- 4 Gastro doctors
- 1 Nutritionist
- 2 Pelvic Floor therapists
None of the providers that I have seen ever diagnosed me accurately. Finally, when I had a consult with Sonya, here at Oasis, she asked if anyone ever mentioned endometriosis, and that question sent me to find endometriosis specialists, and finally have a hysterectomy to treat the adenomyosis and failed uterine ablation, and excision surgery for endometriosis.
Over the years, I’ve been told that my pain is due to things like unresolved childhood trauma, repressed feelings, sitting too much, standing too much, exercising too much, exercising too little, eating gluten, corn, soy, or dairy, drinking coffee, not eating enough fruit, not stretching, stretching, etc. I have been offered interventions such as antidepressants, pain medications, steroid injections, PRP and Prolo injections, and referred around to different specialists for an evaluation. The nurse practitioner at the gynecologist’s office where I had the uterine ablation that caused scar tissue and trapped fluid, which significantly increased my pain, shrugged her shoulders and said she didn’t know what the cause of my pain was. These providers are well-trained, highly sought-after experts in their fields, and not one was able to diagnose me with endometriosis and adenomyosis or even complications from an ablation.
What has been your experience with informed consent? Feeling heard?
Finding providers who understand and are comfortable with consent-based practices is hard, but they do exist. In my experience, most practitioners who take a holistic view of their patient’s health and who are comfortable and knowledgeable about women’s bodies are more likely to be consent-based and validating. But when they are invalidating and/or the times that I have felt gaslighted, those experiences have just piled on the stress and anger. My experience is that it’s easier to find a validating provider than to find a provider knowledgeable about endometriosis, adenomyosis, and ablations. At least a consent-based provider who is validating but who doesn’t know about diseases like endo, won’t gaslight and make me feel crazy.
What prompted your call to Oasis PT & Pelvic Health – why that time?
Last spring a friend asked me if I had seen a pelvic floor therapist, and I remembered that about eight years ago, I was on the waitlist for another pelvic floor provider but got sidetracked by my gynecologist who insisted my issues were gastro-and ortho-related. I switched doctors and insurance, lost my spot on the waitlist, and spent many years targeting other symptoms instead of the cause.
After talking with my friend, I called Oasis because they were on my referral list for my sex therapy practice, and I liked Sonya’s trauma-informed approach. I highly recommend both Sonya and Michelle! Thanks to Sonya’s insight and experience, I was able to get on the right treatment path, which also includes ongoing pelvic floor therapy. Sonya and Michelle at Oasis are a key part of me getting my life back!
If you had a magic wand and could change anything about women’s health, what would that be?
If I could wave a magic wand, it would be to fund research on women’s health care and women’s bodies. I would also make sure that every provider, especially gynecologists, has the proper training to identify potential cases of endometriosis and adenomyosis and refer out to experts.
I would also encourage other women to speak up and out about their health experiences. My experience, which sounds crazy, is unfortunately not unique. Maybe the more we share our stories, it will help drive the need for funding for research on women’s bodies.
I want to thank Dr McHale and Dr Zirolli of Pelvic Rehabilitation Medicine, great sources for endometriosis management and pelvic pain treatment. Also, I’ve found amazing support and guidance with Dr Rachel Rubin’s team for menopause care.
The Endometriosis Foundation focuses on awareness, research, & education.