‘I have to keep a pain diary’: What it’s like living with endometriosis at uni
Uni life’s a bit different when you have a chronic illness
Uni pretty much revolves around four things: sex, nightlife, socialising and a little bit of academia (in that order). Whether you love the idea or roll your eyes at this "stereotypical" vision of uni, chances are you are caught up in the same dynamic, like it or not.
The reality and consequences of this dynamic can be much different for certain women – women affected by endometriosis. During my first year at UCL, I've witnessed a growing amount of girls affected by this chronic illness. I have also grown to see how the very nature of endometriosis comes into contradiction with the uni lifestyle.
What is endometriosis ?
Endometriosis is a medical condition that occurs when the lining of your uterus grows in other places. Meaning that the scar tissue that normally bleeds during your period will attach itself to other parts of your uterus or other organs such as your fallopian tubes, ovaries, kidneys etc.
This results in atrocious pain, a lot of internal bleeding, mobility problems, infertility and loads of other physical and psychological consequences. As of 2020, endometriosis is a chronic illness that affects an estimated one in 10 women. Those numbers are based on the amount of official diagnoses. However, it takes years before a specialised doctor is able to reach this conclusion and this illness has only received adequate research funding since 2016.
There is no known cure to endometriosis. The only durable "solutions" recommended by surgeons and gynaecologists include: Laparoscopies (where they stick a camera in your vagina to see what's going on), getting pregnant (yes for real) and a hysterectomy (removing your uterus). Most women don’t go for these types of "solutions" before they are in their 30s due to the consequences on fertility and the risk of these operations. And also, they're a bit shit, as far as solutions go. So for most college students affected by endometriosis, the university experience becomes an everyday struggle.
Sex and endometriosis
For a lot of people university is the moment when they either discover sex or start to expand their sexual life. Sex is everywhere at uni. Everyone around you seems to be having one night stands or have crazy stories about their latest hookups. But, in a world where meaningless sex is king, your stomach is the enemy.
As you watch your friends flourish and discover sex life you often close yourself off from it. Regardless of your emotional preferences one night stands are almost impossible when you have endometriosis. Even with a long established partner sex is something you constantly have to work around, it’s never easy and finding someone you trust enough to discuss your condition and your sexual limitations is tough. Especially at an age when no one really settles down. This is why it is so important to find a partner that respects you (P.S: thank you to those that do).
Sex becomes increasingly harder because of the growing scar tissue. During penetration pressure is put on these scar tissues and it feels like you are getting stabbed. Often times, this numbs the nerves in your vagina or makes it act a little like vaginismus. Meaning your body literally rejects penetration. Several things help considerably, such as being relaxed, knowing what positions work and which ones don’t, muscle relaxers and time.
Going out out with endometriosis
Going out, whether to pubs, clubs or house parties can also be a hurdle to navigate, for three main reasons: alcohol, energy and bloating. For a lot of girls with endo, alcohol is the devil’s juice. Often times your pain killers are too strong to combine with alcohol (unless you want to meet God) and alcohol makes your stomach hurt and bloat like a pregnant lady.
But more importantly, most of the time we are too tired to go out. It's hard to capture the emotional and physical toll endometriosis can have. Endometriosis causes moderate to intense pain almost every single day and when going about a normal day feels like you just completed the 12 Labours of Hercules, going out is the last thing on your mind.
Clubbing often involves putting makeup on your stomach before going out to hide your scars or the inflammation. Finding clothes that make you look good despite the bloating and that don’t hold you too tight, is a considerably hard thing to do. It is so hard getting ready and watching your body in a mirror seeing it suffer.
Your self-confidence takes a huge toll too. No one feels sexy when their stomach is bloated, marked by inflammation scars, your legs are shaking from standing up, and your skin is always whiter than white because of the internal bleeding. Adding all of this up often tips the balance towards staying in no matter how much you wish you could party with your friends.
Studying at uni and coping with endo
The lack of recognition of endometriosis means that since middle school I was called out as dramatic. But passing out from the pain, tremors and not being able to walk is very common with endo. Yet you're still expected to handle school like everyone else. Because if you miss too much class, you start to fall behind and your teachers deem that you're lazy, or a bad student. You’re constantly uncertain as to whether your absences will be excused if there isn’t an explicit hospital stamp on the form.
For certain women this builds up a certain hate towards the educational system and the lack of empathy and respect they have for endometriosis. I have learned to accept they simply don’t know what it is. Everyone always talks about period cramps and how bad they are. Endometriosis is not period cramps! The pain is the same as giving birth. The scar tissue creates literal contractions from your lower back all the way down to your legs and it worsens with time. Doctors have established the pain level is the same as a heart attack for moderate endometriosis. Taking all these factors in. Would you push a women in labour to stick through a tutorial? Or would you pressure a men having a heart attack to complete a desk exam?
It would be quick to dismiss these arguments by saying that there are tons of extenuating circumstances forms at universities. That's true. However, endometriosis is a tricky illness. It only started gaining attention in 2015 and funding in 2016. Normal gynaecologists aren't equipped with the tools to properly detect and diagnose endometriosis. An MRI doesn't pick up scar tissue until it's at a very advanced stage. Additionally, an ultrasound will pick up on cysts, but it isn’t enough to determine endometriosis.
It will get better, so have hope
A considerable amount of these hardships will get better as endometriosis gains more recognition and funding. Universities will hopefully learn to work around this illness and doctors will have actual solutions to the pain. In the mean time, if you are dealing with all this yourself, just know you are doing great and rising above endometriosis everyday is accomplishment enough.