I think I might have endometriosis: what happens now?

Trying to deduce whether your period pain is as expected or if something sinister is lurking beneath the surface can feel like a near-impossible task, particularly when articulating yourself to your peers, your family, and your doctors. I have grown to understand and bear the brunt of this throughout my adolescence. Now, at the age of 20, even though my GP and hospital are taking me seriously and are trying to find the root of my problems, I’m still trying to make sense of it all.

Since the age of 11, I have worried a lot about my periods. My cycle was unpredictable and irregular, and it freaked me out. There was attempted reassurance from doctors that this was normal, and NHS guidelines state that irregular periods are common at the beginning of puberty. Still, it’s better to be safe than sorry. As I continued into my teenage years, I routinely approached doctors about my concerns as the periods gradually grew worse and more erratic. Nothing got done, because the chances of a paranoid young girl showing signs of a chronic menstrual condition were rather low. Nevertheless, each check-up was followed by my health concerning me even more than it did beforehand.

It is a painful and incurable disease that, according to the World Health Organisation, affects 10% of women and girls of reproductive age

I became very familiar with the workings of endometriosis during this time. My own mother suffered from it – I was increasingly demonstrating the same symptoms as she did 30 years ago, and sources such as Endometriosis UK suggest the condition involves a hereditary risk factor. This was not considered. It was only in April 2023 when a doctor confirmed my fears that she suspected this specific condition. The pivotal point had been when I went to the GP for a checkup on my journey with Evra, the hormonal contraceptive patch. What was supposed to be one of the more agreeable forms of contraception had instead exacerbated my symptoms and worsened my ovarian pain. The doctor promptly urged me to stop taking the patch, deeming it unsafe, and suggested the possibility of me having endometriosis.

For those unfamiliar with endometriosis, the NHS defines it as “a condition where tissue similar to the lining of the womb grows in other places, such as the ovaries and the fallopian tubes”. It is a painful and incurable disease that, according to the World Health Organisation, affects 10% of women and girls of reproductive age. Although treatment often entails using contraceptives, people can also have surgery, and sometimes older people with the condition in its most severe stage have a hysterectomy. It is important to acknowledge that the research done into endometriosis does not appear to factor in transgender men and non-binary people who are susceptible to the condition, which further suggests a lack of care and research going into how to understand and treat it.

Using contraception to ease the symptoms, particularly for teenagers and young adults, and when the problem’s cause is unknown, is a common step taken. For some people it works well to either treat or hide the problem – however, the body struggling to accommodate contraception is a major indicator that something is wrong. Upon my doctor’s concerns that I could have endometriosis, I was referred to the hospital, which marked my second gynaecology referral prompted by contraception-related complications.

Back in 2021, I was prescribed the mini-pill, also known as the progesterone-only pill. After the previously prescribed painkillers, mefenamic acid, having no impact, I was recommended desogestrel (mini pill) on the basis that it was less likely to cause complications from side effects; this was impertinent as I struggle with migraines. However, desogestrel did not agree with my body in the slightest. Apart from the relentless spotting that I had throughout my time with it, I know it was concerning enough to my doctor that she had me stop taking the pill and referred me to gynecology. Months later, I went off to university and tried to cope with my worsening pain on top of the stress of moving away from home, and by the time I got my initial consultation booked in spring of 2022, I had almost forgotten that I had been referred.

I was more frequently being left bedbound. I felt helpless

The nerve-wracking consultation, in which I had to desperately provide evidence of abnormal symptoms and to provide proof of being taken seriously, led to me having an ultrasound scan with results that I thought were optimistic, but I now understand to merely be inconclusive. The sonographer deemed my results to have ‘ruled out anything nasty’, a highly vague and subjective statement. It was a relief that no cysts or tumours were found, and that PCOS was ruled out, however I found out too late that endometriosis cannot be ruled out by an ultrasound. By that time, I had already been entirely dismissed by the hospital. No support for what the next steps entail. Not even a follow-up consultation. It felt like the end of the road.

The pursuit of treatment via the Evra hormone patch was instigated by the further worsening of my cycle. It felt like what previous rate of abnormal development was kicked into high gear. The periods were heavier and harder to predict, I had started to notice ovarian pain at random times throughout the cycle, and the pelvic pain was also throughout the cycle and then agonising at the time of my period. I was more frequently being left bedbound. I felt helpless. The patch was supposed to be my way of reclaiming control, of getting my life back. Instead, I was more confused than ever. At least this time the doctor I saw took me completely seriously.

Despite my previous awareness that there was a possibility of endometriosis, having it articulated by a doctor instilled as much dread as relief. While being relieved to be heard, I was crestfallen by the confirmation that there was a possibility of me suffering from it. The reality of the situation became that the end goal would become getting laparoscopic surgery, an invasive procedure which is the only way of definitively diagnosing or disproving endometriosis. Even though there was plenty of support available from my loved ones during this time, I had never felt more isolated. I had known not a single person in my age-range going through this.

knowing that each issue I struggle with is heavily tied to endometriosis, and I am amid a long and difficult road in search of clarity

That was until a conversation I had with a friend back in December 2023. We both knew the other one had health issues, but it was only then when I mentioned endometriosis and the possibility of me having it that I realised that they were going through that process too. In an emotional exchange, we vented our  frustrations with the lack of nuance when discussing menstrual pain, and the difficulty of being taken seriously as a result. We expressed deepest sympathies for the other, although there was a bittersweet relief in us knowing that neither of us is alone, and that our pain is understood.

I’ve appreciated seeing more media coverage around chronic menstrual conditions, and it helps me to take myself seriously at times of doubt. In March 2023, actor James Phelps announced he would be running the London Marathon for Endometriosis UK, in support of his wife who struggles with the condition. During this time, he lamented how his running a half marathon left him in the same exhaustion as his wife Annika getting out of bed during a flareup. I remember feeling overwhelmed by the empathy and the accuracy of grasping how debilitating chronic menstrual pain can be.

When writing this article, I was aware that when I eventually get surgery, it may not be endometriosis that is uncovered. It could be a condition that I am currently ignorant about. Me relating my story on endometriosis is rooted in knowing that each issue I struggle with is heavily tied to endometriosis, and I am amid a long and difficult road in search of clarity. It is essential to provide space for those trying their hardest to be listened to and to find an answer to their struggles. I don’t see the waiting period being talked about enough. I write this as I am approaching nine months into waiting for this second referral to be reviewed, and while I have spent a lot of those months in despair, I opt to be honest in the hopes that others can seek that bittersweet comfort and not feel alone.