“I Was Told My Period Pains Were ‘Normal’ – Here’s What Endometriosis Taught Me About Medical Misogyny”

“Period pains vary – we can’t you help with that.” That was the sentence with which I got dismissed by a doctor when I called 111 on Easter Sunday last year. It was the fourth day of my period, and I had an onset of such sharp pain in my abdomen that I started panting, as if trying to give birth. The pain was so intense that it brought tears to my eyes, and I was certain that something was seriously wrong. But to the doctor on the other end of the line, like to several other doctors and nurses before her, I was just a hysterical woman, unable to deal with her period pains. 

Prior to this episode, my request for an ultrasound scan has been rejected by my GP. All I had been given was a smear test, during which the GP examined my vagina and told me that “everything looked fine down there”. They also examined my belly and assured me that it was very unlikely I had any cysts. No need for any further tests. I was sent home with mefenamic acid, a stronger painkiller that left me feeling tired and drowsy (I only learned much later that Diclofenac offers much better pain relief). At this point, I’d been having very painful periods for many years. They gradually got worse after I stopped taking the contraceptive pill in my late twenties. I noticed that most of my friends seemed to have a very different experience with their periods; while they took one or two painkillers, I would always need the whole pack – and I’d still be in pain.

After my episode almost a year ago, I went back to my GP and I was finally given an appointment for a scan. The doctor couldn’t believe I hadn’t been seen before as he discovered an endometrioma of 10 centimetres growing on my right ovary: an indicator of a severe form of endometriosis; a disease in which tissue similar to the lining of the uterus grows outside the uterus, leading to severe pelvic pain. I was referred to a hospital trust and my GP told me that I would be seen within 12 to 16 weeks for the removal of the endometrioma. However, when I later queried why nobody had been in touch about my appointment, staff at the hospital shared that the real waiting time for this kind of “non-urgent procedure” was 18 to 24 months. This left me no other choice but to use some of my savings and seek private treatment.

A few weeks later, sitting opposite a specialist who patiently drew one uterus after another, explaining to me and my partner what endometriosis was and the damage it can cause, I had tears in my eyes again. Not because I realised the severity of my illness – during the appointment, infertility (up to 50% of women with endometriosis experience this), bowel surgery and a hysterectomy were suddenly mentioned -– but because I was finally being taken seriously. This was the first doctor who didn’t deny the reality of my pain; who didn’t make me doubt my symptoms. I had finally arrived at a place of care.

It was only after I started my treatment that I fully understood the impact this disease had had on my life. The anxiety that came with planning anything from holidays to work meetings, knowing that there would be those days every month when it would be difficult for me to leave the sofa because of the pain and the fatigue. The heat patches that burnt my skin; the heavy flow that made me bleed through trousers, coats, bedsheets. The fear of being struck down with pain while away from home. The not infrequent desire to get a hysterectomy, just to never be in this pain again. And I’m far from alone – according to the World Health Organization, 10% of people with wombs of reproductive age are affected by endometriosis, and still we don’t know what’s causing it.  

The laparoscopy to remove my endometrioma revealed that I had one of the worst forms of endometriosis. I have adenomyosis in my uterus, which has grown adherent to my left pelvic sidewall, and my right ovary is stuck to my bowel, which means I will require another surgery. I was even asked to release the images taken during my laparoscopy for scientific research, because my case contradicts a common assumption that a lot of endometriotic cells need to be present to cause endometrioma (I have a lot more endometriotic cells on the other side, where I don’t have any endometrioma). None of this would have been necessary if we treated severe period pains as we would any other severe pain: a cause for concern and not as something to be taken for granted because it only affects women. Numerous reports have shown the detrimental effect that the gender health gap has on the lives of women making endometriosis just one example of many illnesses where we receive poorer treatment because of a lack of research, as well as prejudice.

Since I got diagnosed, the Women and Equalities committee revealed in a recent report that ‘medical misogyny’, together with endless waiting lists, often condemn people to years of unnecessary pain. This report is a landmark step, which I’m hoping will give people the confidence to insist on the medical treatment they deserve.

Just this month, the NHS approved relugolix-estradiol-norethisterone (Ryeqo), a relatively new drug to treat endometriosis. It works by blocking those hormones that contribute to endometriosis, while also providing necessary hormone replacement in a single tablet, to be taken on a daily basis. It also means that patients no longer have their periods. Though it’s not widely available yet and not suitable for all patients – it puts you into early menopause and is therefore not suitable for patients who are trying to conceive – it’s a positive sign. (It’s important to mention that there are other hormonal treatments, such as Dienogest, that are widely available and will not give patients early menopause.) In addition, we will need research to find quicker ways to diagnose patients and eventually, to find a cure.

Period pain isn’t just a normal part of having a womb. It’s a serious health issue that needs to be addressed with the urgency and care it deserves. For years, I was dismissed by doctors and nurses, told to “take some paracetamol” and brushed off as just another hysterical woman wasting their time. The truth is, severe period pain is a signal that something is wrong – a message that too many of us are taught to ignore or downplay.

Endometriosis is not a condition that should be sidelined, and it’s about time that we stop accepting the dismissal of women’s pain as normal. Instead, we should start recognising it for what it is: a medical crisis that impacts millions. I wasn’t taught about endometriosis in school but I’m hoping that future generations will have heard about it before it can have such a detrimental impact on their lives.  

With this growing awareness and education, as well as the release of new drugs such as Ryeqo, we are slowly making progress – but there is still a lot of work to be done. We don’t just need to find a cure for this specific disease, we need to change the way we think about women’s health: ending the research inequality and creating environments where our pain is taken seriously.

Paying to see a specialist has been life-changing for me and I wish I had done it sooner. It has since given me a lot more confidence when dealing with the NHS and it has been a huge comfort to know that there are alternatives out there. For anyone who is also suffering from these symptoms, I can also recommend talking about it to other people: your friends, colleagues, partners. It will likely make you feel less alone and also help you to identify points and symptoms to discuss with medical practitioners.

Our bodies are not taboo. Sure, they are not always pretty, presentable and functioning, but if we can talk about migraines and back pain in public, why can’t we talk about our periods? I have four surgical scars to remind me that our bodies are battlefields – and that we will need each other to win this fight.

Calls May be Recorded for Training and Monitoring Purposes by Katharina Volckmer is out 1 April