To honour the end of endometriosis awareness week I got thinking about how and when endometriosis came into my life and how I managed with terrible periods for over a decade.
I remember one occasion many, many years ago when I had to leave work, and my (female) boss looked at me accusingly and said “You’re not going home because of your period are you?”.
Her tone said to me that she found that idea pathetic. I lied and said I had a tummy bug so I could get home without stress. I was young, and tired and not in the mood to start the debate about periods as I would now.
But that question stuck with me for many years, right up until my endometriosis diagnosis. It’s a burden that many of us live with right up until we’re diagnosed.
We should support one another, not judge
I’ve never experienced this sort of lack of empathy within the endometriosis community. Ours in a community that is for the most part respectful, helpful and supportive of each other. However I hear countless stories of women with situations similar to mine all those years ago, and how dreadfully unsupportive other women were at the time.
Most of the times I have encountered unsupportive women, it has been from those who do not share my experiences of difficult periods. Periods that were never regular, endometriosis pain that persisted even though I looked fine. Their “OK” experience became a benchmark for them to judge my own. That the pain really couldn’t be that bad, that I was overreacting.
You can get a great deal further along with your endometriosis story with other women to help you. I believe those of us who have had this the longest have a responsibility to help others up a shorter path than our journey. I want to make sure no one else went through what I did. Those accusing questions, those judging stares, the laughter and the scorn.
I’ve met a lot of women with endometriosis at this point and many of them remark on the moment when they too have tried to speak to another women about it, maybe it took them ages to pluck up the courage to do so.
It is because we trust the experience of others that it’s so easy for those of us who had bad periods to be comforted and reassured by another’s statement that “my periods aren’t that bad” and “they don’t hurt too much”. All it takes is one or two people to share this notion and we reflect that we must have things wrong, that our threshold of pain is low, that we need to be stronger.
Our sex education as well as our period and puberty education is lacking, as it teaches to the room as a group with idealised, identical circumstances rather than as individuals. When in fact we have different concerns, experiences, pain thresholds and medical history.
Female doctors and consultants
Most of my doctors have been women. Strangely I’ve had the most physical support for my condition from male doctors. This may be due to the fact there are more men than specialise in endometriosis in my area, but anecdotally I’ve heard this from others too.
It was male GP that spotted my symptoms and mentioned the word “endometriosis” to me for the first time. He said he would refer me to find out definitively, and he put my year of diagnostic limbo to an end.
I think this was because he was a good doctor – someone who listened to my story and experience rather than making assumptions. As such he wasn’t able to compare my situation to his, so he let me lead. If I hadn’t been reluctant to try other doctors I wouldn’t have met him, and who knows how much longer I’d have had to wait for.
Part of the reason it took me so long to see him was my overwhelming belief that another woman would be the best person to help me, to see my struggle through their own experiences and relate to me. There are female GPs who I am certain that do this, but I had little to no joy with the three or four I depended on first, and I think that’s a terrible shame.
A woman’s burden
I think there are some women out there (who without realising it) have ingrained themselves into a system of acceptance. For some women it was traditional to endure the pain and pass that advice on as was advised to them. The mantra “it worked for me, so it should do for them” comes into play here.
Historically, periods were deemed as dirty, unclean or part of the female experience, so if there was any pain that came from it, many people – both men and women – deemed it to be appropriate to keep the status quo, maintain the silence, and accept the pain.
There’s simply no need for these sort of ideas to persist anymore. None whatsoever, talk about your periods as much as you want to. If you wish to keep this info to yourself that is your choice, but we should try not to begrudge others who look to us for help.
Endometriosis as a women’s issue
I think other women’s health issues get more exposure and consideration then endometriosis. Women understand the importance of cervical smears, but they’re extremely painful for women with endometriosis and we receive no additional care or support with this intensely difficult issue, as well as many others.
Despite endometriosis being painfully common (up to one in eight women) you won’t see it receiving the financial, publicity or medical support that other gynaecological illnesses have.
Among the medical community endometriosis seems to have to reputation of being an incredibly painful condition that has ruined lives. Some women (without experience of it) consider it a byword for painful periods alone, and no more (when it’s so much more than that).
When my periods were stopped (due to my endometriosis treatment) I got rid of all of my tampons and pads. I should have kept them, and retained them for when another women asked me if I have any spare – so I can use the moment to talk about endometriosis, find out if anyone else needed the support I missed out on.
I’ve lost count of the number of times I’ve talked about my experience with pain, only to be told that’s nothing, “wait until you have kids”.
This is quite telling because I then know this person has no experience of chronic pain or they wouldn’t say anything so idiotic. People on the chronic pain path support each other on the whole – especially with a gender specific illness like endometriosis.
I found out this phenomenon is called mommyjacking. It’s nice to know there is a name for this sort of behaviour so that I can call people out on it. It’s another example of how some women don’t fully take the experiences of others on board. Not to mention that it’s terribly poor taste to talk to another women about children when they have a condition known to be a leading cause of fertility issues.
Reach out to others, be the support you wanted
Endometriosis teaches us humility and how to support others. We have broken the period myth and must therefore seek to educate others.
Especially with this world as it is with this current climate. We must help those with endometriosis (or any other type of life-altering illness) climb up out of difficulty and not raise the ladders as many of the older women in our lives did for us.
We owe it to those new to endometriosis and our old selves. Yes I once went home sick because of a extremely bad period, but I also endured it many years more than I should have, and I expect and hope that will continue to improve for other women.