My endometriosis diagnosis was not the first time I had been told that I would be sick for the rest of my life. I have a vivid memory of my first sex education lesson aged 11, where I was told that someday soon my periods would start and I would be sick and in pain every month until late in life.
I remember feeling very betrayed by everyone around me for keeping this secret hidden. I remember being furious and upset that this was dumped on me from no where. It felt like a really strange, secret burden that women took upon themselves to conceal from a younger generation until it was time.
It took many days until I felt able to face my fear about this impending illness and talk to someone about it.
I couldn’t understand why if it was so normal they felt it was appropriate to take only the girls in the school, hide us away in a small room and quietly break the news to us there.
It didn’t seem fair.
It still doesn’t. Because as soon as my periods did start aged 14, I realised something was wrong. That the pain I experienced wasn’t normal, and the same secret platitudes were used by every adult I spoke to about it (as in that classroom) to placate me for many years – when I knew something was wrong.
Funnily enough, getting a endometriosis diagnosis often means pushing back against this status quo, to find the root cause of pelvic pain.
For most women periods are a discomfort at best. An inconvenience. I just want to demystify the idea of any serious pain that is associated with that time of the month being at all normal. When you start to seriously consider periods as an affliction or illness (as I started to in my teens), then the “normality” of it comes under sharp focus.
I knew that something was wrong within my first two years – for two reasons. Firstly the severity of my symptoms, Pain that would leave me bedridden for around two to three days. Pain that was often worse than my endometriosis pain is now. Nausea that would eventually lead to me throwing up. Painfully heavy flows that spanned over a week or more.
Looking back, I endured this part of my periods without any help (but not without complaint) for around two years, because I was assured (repeatedly) that the first few years of your periods are the worst, and they would settle down.
Needless to say they didn’t. Years later, I didn’t even get the relief of knowing when my periods would arrive as other women could do. Planning around the dates, avoiding certain events or activities. None of this was an option for me. I lost count of the times I passed out in pain, as others chuckled at my “low pain threshold”. It was “just a period” after all.
I knew my experience wasn’t normal because I talked about it to other girls. I couldn’t understand how everyone else sailed through each month while I struggled. I was made to feel inhuman for complaining about something so natural, then brushed away by any doctor I saw with those same “normality” platitudes.
Severe pain is not normal
No pain is normal by its definition and pain is not something that should be endured. Pain is your body trying to tell you something is wrong, it’s how it tries to keep you safe and out of harm. Why was my body trying to tell me this so strongly, when no one wanted to listen?
Voicing dissent doesn’t make you a difficult patient – it makes you an empowered one. – Laurie Edwards
All anyone had to do when they explained all this to me aged 11 was to describe at what point I should seek help. At what point the pain should be considered abnormal. I could have saved myself a great deal of time. I firmly believe children being taught about sex and periods should be offered this lifeline then and there when I was not.
It was a real missed opportunity that a lot of us with endometriosis are still paying the price for.
At 16 I had had enough and started my long battle in what was to become my endometriosis diagnosis, seven years later aged 23 everything I went through finally made sense. But this was only after years of pleading and demanding – and lots of drugs. I weep for anyone who doesn’t have the persistence that I did. How many other women are still silenced by the same platitudes that I was?
Part of my endometriosis treatment completely stopped my periods. (Through the Mirena implant and back-to-back combined pills). I haven’t had a period for three years, and I fully intend to keep it that way.
Pain doesn’t have to be part of the female condition, and we do not have to accept this turn of events. I spent most of my childhood and teenage life hearing the same false assumptions about how pelvic pain was normal for a woman.
We have to collectively dismantle that idea, and make pelvic pain as a wider issue less of a taboo – by talking about it and equipping those that come after us with the tools to push back against the status quo. Then we’ll be more able to tackle the even bigger results of that pain, like endometriosis.
I completely understand your perspective! I started much later than my friends and i knew that was a warning sign that something was wrong. Yet, my drs didn’t think it was a problem. The pain as you said was horrible. I remember one Sunday when my family went to church and I stayed home. The cramps were so bad that I made it downstairs to the kitchen and found we were out of motrin. I grabbed my mom’s 600 mg ibuprophen which military drs prescribe like Sweet Tarts. I took 2 and collasped on the floor. At some point, I made myself hot tea. After an hour and there was still no relief, I took 2 more pills. I don’t recommend it, but that is how bad the pain was. Finally, the pain eased a bit. I dragged myself back up to bed. Mom came to check on me when they got home. I thought she would be upset with me for taking her meds. Instead she told me she understood and said it might continue to happen that way. For the rest of high school, I had to keep perscription strength motrin in my book bag and nearly a dozen pads just to get me through the first day of my period. That is no exaggeration. It was terrible sometimes. So glad I have gotten treatment for PCOS now!
I can relate to your point about taking rather strong painkillers and more than was recommended. I was often forced to do the same! I’m very glad to hear that those horrible days have passed for both of us.
I’m involved in a chronic pain alliance in Northern Ireland which brings together patients, healthcare professionals and policy makers. And STILL, even in this environment, any talk about pelvic pain makes everyone uncomfortable. Oh, they’ll happily natter away about arthritis and musco-skeletal pain (and don’t get me wrong, anyone in pain deserves to be heard) but the minute I raise a point about pelvic pain, they mumble and all the men immediately avoid making eye contact as if I’ll infect them with oestrogen if I mention anything to do with women parts.
Recently, at an academic conference, I wore my yellow endo ribbon and bracelet and was asked what charity they were for. I said “endometriosis awareness” and received a completely blank look. Ignoring my best friend (who is male and was throwing me looks that said “don’t you dare start talking about your ovaries”) I went on to tell this man that is was a gynaecological condition that affects one in ten women and causes chronic pain. As I later told my best friend, there is no longer any shame in talking about breast cancer or testicular cancer so why should there be a stigma about women’s internal bits? Why is talking about your uterus and ovaries any different than explaining a problem with say, your kidneys or gallbladder? We should not be ashamed of our condition, its not like its a shameful, dirty thing that we brought upon ourselves. It is only by talking about it that we can break this taboo. Who cares if we embarrass some people (and by people, I mean mainly men) along the way?
I used to teach 6 th grade at a private Christian school which did not have a sex education class or hygiene class. I went to public school all my life so this was a bit of a shock when a girl came to me doubled over in pain not knowing what to do. They gave her tylenol, paracetamol, at the school office which does nothing for cramps. I told her to talk to her mom about midol, pamprin, or motrin. Then she asked if was needed to go to the hospital?! She did not even know that was normal. I had to talk to her and explain if the pamprin controlled the pain then it is normal, but no need of the hospital. They other girls who had not started saw what she went through and became scared. Oh my soul! At the next elementary teachers meeting (there was only one teacher per grade), i brought this up and asked to teach a hygiene class. I didn’t call it a sex ed class, only a hygiene class. The boys were having issues too. I asked for the principal to speak to the boy or we could combine with the 5 th grade class and that teacher was willing to talk to the boys. The longer i talked, the quieter the room become. The other teachers shifted in their chairs, the men did not make eye contact, and i was confused. The principal replied, “parents wouldn’t like it.” I said, ” what part? Me explaining to their daughters they can take pamprin for the pain or they are not dying each month and need to go to the hospital?” Then he changed the subject.
That should read, ” and not in need of the hospital” in the next to last sentence.