Oh how I hate that saying, that cold, dismissive, ignorant statement. The minimising, the acceptance of suffering as though it is normal, a part of the road, par for the course, something we’re expected to not complain about. I rage at the idea women are supposed to suffer in silence because it is part of ‘being a woman’. I’m sick of the expectation that we need to ‘just get on with it’ because it’s ‘only while you have your period’. I’m over it, I’m here screaming from the mountaintops that it is not acceptable to expect women to not vocalise their pain, it is not acceptable to expect women to just get on with it, and it is sure as hell not acceptable to act like it is normal. Excessive period pain is not normal.
I’m writing about this now because I was inspired by Magaly’s posts to share something of myself, especially this part of myself because I know I am not alone in the suffering. Thankfully for the most part, in my life, it hasn’t had to be silent. I’ve had the luxury of being able to vocally rage against the pain, the agony without having some one treat me like I’m being unreasonable but I know this isn’t the case for all women. I was twelve when I got my first period. They were heavy and painful, and at twelve, even with family support, it can be very difficult to deal with. It’s not something, at that age I found, your peers can relate to, it seemed I got mine quite early compared to most of the other girls in my grade. I struggled with a cycle that was never regulated until I was 16 and the doctor put me on the pill. It regulated my periods but the pain was unending. Missing near on an entire week of school during that time of the month wasn’t unheard of for me, I would spend most of that week in bed taking various forms of painkillers, coupled with an exceptionally hot hot water bottle in order to try and manage the pain. The unfortunate thing is as I got older the pain got much much worse.
You see, I was born with a disease called Endometriosis. Now while the instant thought of some will be ‘that only causes pain when you have your period’, I can assure you that is not the case. I wasn’t officially diagnosed until I was 18 but my mother had it, so my disease is hereditary. My mother suffered for years until she had her hysterectomy, but the thing is that didn’t actually solve the problem of endometriosis growing outside of the reproductive organs. Yes, you heard me right, endometriosis isn’t strictly reproductive, it can and will spread outside of the uterus to other organs and areas of the body. And it is incurable, it can be managed, but there is no cure for endometriosis. It affects about one in ten women if it isn’t hereditary like mine. But what is endometriosis exactly? The Endometriosis Care Centre of Australia defines endometriosis as:
“Endometriosis is defined as the presence of normal tissue in an abnormal place. The endometrium (lining) of the uterus spreads to the pelvis through the tubes and settles most commonly in the pelvis. Like the lining of the uterus, the endometrium grows under the influence of the major female hormone oestrogen. The most common sites in the pelvis are on and below the ovaries, and deep in the pelvis behind the uterus, called the Pouch of Douglas. Here the endometriosis grows on the ligaments behind the uterus and on the vagina and rectum. It also may grow on the bladder, appendix, abdominal wall and even sometimes in the upper abdomen.”
It sounds unpleasant, and it is. It is something I wouldn’t wish on my worst enemy. Because I have a compromised immune system, it is just that much worse. It also puts into perspective the issues I had as a child with my immune system since those who have hereditary endometriosis are generally born with it. Endometriosis affects your entire life, not just the part of it when you menstruate. I suffer with lower back pain, migraines, chronic fatigue and even vertigo (although that could be unrelated). As Wikipedia states:
“Other symptoms include diarrhea or constipation, chronic fatigue, nausea and vomiting, headaches, low-grade fevers, heavy and/or irregular periods, and hypoglycemia. In addition to pain during menstruation, the pain of endometriosis can occur at other times of the month. There can be pain with ovulation, pain associated with adhesions, pain caused by inflammation in the pelvic cavity, pain during bowel movements and urination, during general bodily movement like exercise, pain from standing or walking, and pain with intercourse. Pain can also start a week before a menstrual period, during and even a week after a menstrual period, or it can be constant. The pain can be debilitating and the emotional stress can take a toll.”
And all of it true and a lot of it me, I remember times curled up in bed hugging my hot water bottle crying because nothing was helping the pain. The emotional toll is real because sometimes it just gets to be too much to deal with. Heavy duty medications like Codeine or Endone are used to manage it because of the intensity of the pain. Surgery is another option though not always successful. I had my first surgery at 18, then another at 19 and was told by the second surgeon that I had a lot of endo for some one of my age. I recently had my third surgery. I imagine I may end up having more. My mother had 11 in total and it never solved the problem. I’m sitting here right now in pain because I got sick of lying in bed. However, because the Universe just loves to torment me on occasion, over the past twelve months I have developed something that is called ‘Umbilical Endometriosis’, essentially the endometrial tissue pushes up through my belly button causing bleeding and pain – this usually the week after my period. Umbilical Endo is actually really rare; it affects maybe 1% of women that have endo, mine I suspect has occurred because it is near to the site of scar tissue. My gynecologist told her trainee during my consultation that she would be lucky if she saw this once in her career. She said to me ‘this makes you unique’. Personally I’d rather have something else that made me unique.
I wanted to share my story because there are a lot of women and young girls out there who suffer with excruciating pain during their periods, and probably have no idea why. There are those, like myself, who probably experience severe cramping, chronic fatigue, nausea and headaches outside of the time of their period and have no idea why. And there are those who are expected to suck it up and get on with life no matter how much pain they’re in because no one cares enough to truly understand what they’re going through. You can tell a person you have bad period pain and you get that condescending ‘we’ve all dealt with that love’ attitude, so women are left thinking it’s normal. If you find yourself coming to on the floor because you’ve passed out, if you find yourself vomiting or experiencing headaches when you have your period or find you have to medicate yourself to near catatonia in order to function then it really is not something that most women have ‘all dealt with’. If any of what I have written sounds like what you experience then go to your doctor and be checked over. I know in some countries, medical treatment isn’t free (like my surgeries have been) but if you can get correctly diagnosed, you will have a better chance of treating it or at least managing it.
Don’t ever let anyone tell you that what you’re experiencing is normal because it’s not. As I said earlier, excessive period pain is not normal, passing out, vomiting, migraines, severe cramping and heavy periods are not normal. It is not something every woman goes through, regardless of what people or religion say. Rage against the pain, scream from the mountaintops, but never let anyone minimize what you’re going through. Ask questions of your family and find out if any other women in your family have experienced this, and even if they act as though they dealt with it or it was normal you should still be examined and find out for sure. Endometriosis is a serious and debilitating disease, even if it is not widely recognized as such by the general public, and you shouldn’t have to suffer in silence. It affects your entire life, and for those who are keen on having children, it can affect your fertility.
So please anyone who thinks this could be them, suffer no longer, find a way to be heard and be treated. Even if ultimately it may not do any good in the long term (such as my case is proving so far) at least you will know and no longer question the whys of the pain.
Endometriosis Care Centre of Australia