It’s not ‘all in your head’. Your pain is real.

The most common and unfortunate story I hear from my fellow endo warriors it is that they were dismissed by doctors when expressing the excruciating pain they were in. They were told that it’s ‘all in their head’, or ‘it’s just part of being a woman’. 

While, I am very lucky to have not had this exact experience, I still have absorbed this messaging through our culture.

Women with endometriosis historically been told that we have this disease because we are too ‘career driven’ and ‘need to stay home and have babies’. Well, having had a baby myself and not being able to be career-driven, because my pain made that impossible, I can attest to the falseness and insult of this statement. Sure, pregnancy can reduce symptoms temporarily, but they almost always return with a vengeance afterward. And, what about the 30-50% percent of us who have infertility? To say this to someone with infertility is a slap in the face.  

A Reader’s Digest article I was just reading about dismissal of women’s pain mentioned a woman with vulvodynia (a pain condition of the vulva causing painful sex) was told ‘You must be having marital problems. Have a glass of wine before sex- it’ll be better’. It also mentioned that women with migraines were routinely perceived as ‘Type A upper-middle class women who just can’t relax.’ A woman with endo with recurring ruptured cysts (talk about severe pain!) was told ‘not to worry, it’s normal’. 

Dismissal can lead to normalising pathology.  Many of us are walking around with serious ailments, and are dismissed as ‘drug seeking’ or ‘crazy’ if we reach out for relief. And this is not just limited to women. I found an interesting study which showed that this is a routine perception of people who possess ‘feminine personality traits’ across genders.  

There clearly exists a bias perceiving ‘feminine’ with being weak, moody, hysterical, and over-dramatic- which is another word that too many endo sufferers hear.

Despite being feminine-appearing and emotionally sensitive, I consider myself to have a high tolerance for physical pain. Having endo got me used to a certain level of pain, so when I went through drug-free childbirth with back labor, to an 8 lbs 8oz baby, I found that to be less painful than many of my periods. 

When breastfeeding, I had a yeast infection in my milk ducts which created hot stabbing knife-like pains through my heart every time I breastfed. I bit my lip, in tears every time, worried my daughter would absorb my emotional pain through the milk. But, I continued to breastfeed instead of bottle feed because of the prevalent ‘breast is best’ messaging of the time. I was suffering in order to do the ‘right thing’ for my child, but I was depressed and in misery. After 2 months of failed topical treatments by an ill-informed and rude male doctor, I finally got proper medication from an empathetic female OBGYN and decided to incorporate some bottle feeding. Despite the judge-y guilt-trips of parenting culture at that time, I knew I had to bottle feed in order to preserve my sanity and for my daughter’s benefit. I didn’t want her to associate eating with guilt or misery. I wanted our feeding time to be a positive, bonding time. I finally listened to my instincts, and was glad I did. I had to push for medication, deal with a doctor’s dismissal, ineptitude and rudeness, I had to face my self-doubt and shut out the naysayers. But thankfully, in the end, I got what I needed. 

As for period pain- what is ‘normal’ anyway?

If over-the-counter pain meds and heating pads do little to quell your pain- or you faint, vomit or find yourself unable to get out of bed and do your normal routine, you may have an underlying pelvic health issue and should bring it to your doctor. Other symptoms to watch out for can be: Painful intercourse, painful bowel movements or urination, infertility or very heavy periods. But, even if you don’t have these symptoms and feel something is ‘off’, it may be worth visiting your doctor- or more than one, as many women have to do before getting a diagnosis.

What it feels like…

I often had to take Advil for days before my periods began and through them, in order to still be somewhat functional. Even then, it sometimes barely took the edge off, and just getting to the bathroom was hard.  I would either be bed-ridden, pass out, vomit or shake from head to toe for hours. That is definitely not normal. But, I ‘sucked it up’ and dealt with it, incapacitated for several days a month because in my mind, this suffering was just ‘part of being a woman’ and seeking stronger pain meds would either be futile or proof of my inherent weakness.

I didn’t take my own pain seriously because I was encouraged not to. There is a cultural bias that keeps us from believing women- in medical settings just as much as in court rooms. So much so that sometimes we believe that perhaps, it is all in our head. We lose trust in ourselves, and put the power in others’ hands. What a convenient way for patriarchy to stay strong.

Endo is not considered a fatal disease, as it cannot usually kill someone on its own- but the chronic pain can become so severe that suicide is far too often seen as the way out. I know what that dark space feels like. This alone is a crucial reason for prioritising early diagnosis and proper care. 

We should not be normalising a state of being that leads to suicide.

If I could share one piece of advice, it would be- trust yourself. You know your body best. Keep seeking help and answers. Don’t give up. If your periods are debilitating, heavy, so painful that you are vomiting, fainting, or not able to get out of bed, seek out help! Demand a referral to an OBGYN. You are not alone. There are options. Even if you are dismissed by doctors, don’t dismiss yourself. You are the expert on your pain. 

Dancing with Issues in our Tissues- Embodiment, Pleasure & Pain

We all struggle living in our body- at least from time to time. I’d be willing to say that most of us, if not all of us find this ‘meat suit’ we carry around at odds with our human desires at many points throughout our day.

The topic of embodiment (consciousness & body as one) is endlessly interesting and personal to me. Living with chronic pain as a mover & dancer, having an uneasy relationship with my own sexuality due to sexual assault & harassment, societal messages, inter-generational trauma, being in a female body in this world- all ad up to a complex relationship with body. What am I embodying, exactly? If it is my soul, or the Sacred Feminine, and my body is flawed, my womb is flawed, how can I embody the vastness and beauty I feel inside?

Our minds are powerful. We can separate our consciousness from our body by placing it solely into our mind and imagination. We can choose to focus on one important task at the expense of all others. We can astral travel, we can meditate, we can focus all our will into actions that are at odds with our bodily needs to help us achieve specific goals through our day. It may be what distinguishes us from animals, but I am not sure where that line really is. Perhaps it is a uniquely human thing to dissociate from our body willfully?

We can slip into more serious forms of dissociation as a protective survival mechanism against trauma. It is a way to escape the full impact of our feelings, enabling us to survive. For example, we may develop addictions or other coping mechanisms to help us live life after trauma. Sometimes our coping mechanisms outlive their purpose and can be destructive.

Many of us are familiar with common manifestations of not being embodied: Repetitive strain, athletic injury, dissociation, addiction, bad dietary habits, lack of sleep, overwork, stress/burnout, etc. Some of us may also have experience with slightly less common manifestations such as eating disorders, body dysmorphia, gender dysphoria, cutting, suicide.

Living in a body is hard. Harder for some of us than others. Yet, we can distinguish an aspect of ourselves as separate from the body, an essence that inhabits it. We have a saying that we are ‘Spiritual beings having a human experience’ and all religions have some form of belief that we have a soul or spirit that is living in our body. When we refer to ‘embodiment’ in the holistic health community and the conscious dance community, we are speaking about the tangible body and intangible spirit harmonising into this deeply present, grounded and yet transcendent state of being. It can feel truly ecstatic, euphoric, natural and grounded, yet blissfully otherworldly all at the same time.

When it comes to these sort of what I’ll call ‘embodiment practices’, such as conscious dance, pagan rituals, tantra, hatha yoga- practices that bring us into our body, we may find they also tend to bring us into our pain, into our limitations, because when Spirit meets body, it goes through layers of complexity- emotional, mental, psychological.

If we are accessing Spirit through the body, we are going to have to go through the ‘muck’ of repressed emotions, desires and fears, possibly lifetimes of trauma, karmic imprints, inherited trauma through DNA, environmental toxins, coping mechanisms, societal pressures and expectations and more.

Amazing Yoga

Our issues live in our tissues, as they say. And, naturally we work to transcend them- by working through them, being in relationship with them. Sometimes it seems they don’t really go away- we just learn to live with them instead of fighting them. Sometimes they dissolve. It’s a bit mysterious sometimes. It is ongoing self-awareness, really. Those new levels of self-awareness sometimes lead to freedom, joy and self-acceptance.

Speaking from a chronic pain point of view, I find it extremely inspiring to watch professional dancers, as they move in ways I cannot. Dance is my favourite art form, and I think it is because they seem to have figured it out- how to transcend the limitations of the body while also accepting them. How to push beyond comfort zone after comfort zone, without breaking. How to create something beautiful, something that expresses the freedom of spirit while still in form. I strive to do the same. In my own body, in my own way.

I am one of those people who processes all my emotions (and often, those of others) physically. Its like everything must get funnelled through my tissues. I sometimes wonder if I am making up for lifetimes when I neglected my body. Or, it could just be that my healing path requires that I focus on this relationship with my body as the primary way to feel whole, to feel my Spirit.  It draws me in again and again, so that no matter how hard it feels sometimes, when my body just won’t do what I wish- I must come back into a patient, loving relationship with it, and must face the totality of my emotions.

Chronic pain gives us an opportunity to keep refreshing our relationship with ourselves. We don’t have the luxury of ‘checking out’ as much as others do, as our body screams for our attention like a newborn baby. We must tend to our wounds. Now. Our body often does not do what we ask, when we ask. Its like having a much more ‘spirited’ child who requires special attention. Others with well-behaved children look on, perhaps thinking it is us that is the problem. We need to pick our battles. Accept the wild child we were given and do our best to not compare ourselves to others.

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For 17 years, I have been practicing yoga and for 12 years now, I have been bellydancing. And I have gained perhaps a deeper insight into the healing impact of the ripples and sacred shapes we make in the dance that only someone with chronic pelvic pain can appreciate. I may also have more experience with dissociation while dancing than most, due the pleasure/pain combo that comes with it. For me, it is a healing art and mind-body practice, and that is how I teach it, combined with yoga and meditation.

For my path, as a dancer, a mover, ecstatic dancer, yogini- My most favourite feeling in the world is how I feel when I dance, move and stretch. The feeling of not being in pain is blissful. Movement releases endorphins and the circulation helps me feel better. It releases tension and emotions and layers of accumulated energetic gunk. But its more complex than that.

Sometimes, after a fun, vigourous dance class or practice, I’ve been in pain for days after. This is why I was not able to continue in one of my beloved dance troupes. This was the case before my excision surgery. I would feel fine during the dancing itself but afterwards would pay a hefty price. Eventually, I wasn’t able to dance at all. I was restricted to very basic gentle movements prescribed by my pelvic physio. It felt like starting from the bottom all over again, like all my years of mind-body practice went in the garbage. It was incredibly humbling and frustrating. But it was just a hurdle I had to work through. For me, my practice evolves in a circular fashion- one step forward, two steps back, around and around again. But I am moving forward, up a spiral of healing, in my own way.

I am inspired by people who do what they love against the odds. An example that having a physical disability or limitation is not always a red light on living their passion. However, I also understand that sometimes our limitations are a way of showing us new things to engage in and new ways of expressing ourselves. Either way, there are lessons and hard work that should be recognised.

Even though I don’t aspire to anything Hollywood, I am glad to know there are strong, successful women out there with endometriosis, including Whoopi Goldberg, Susan Sarandon, Hilary Clinton, Julianna Hough from Dancing with the Stars and more.

And there are amazing painters who are blind. 

And not just one but several  famous composers who were deaf. 

So, maybe a body with limitations is given to those with the strongest will & passion to accomplish their dreams. Maybe it is a lesson in refinement, patience and self-love.

Either way, embodiment keeps me endlessly inspired and motivated.