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.