Endometriosis often causes terrible pelvic pain. However, many women suffering from this disease are still told by the medical community that pain is normal for women. Caroline Louise Hamar of Femi.Listen wanted to find out how women with endometriosis experience pelvic pain. Interested in the medical respons, she also asked a GP what counts as normal period cramps and when there’s need for further investigation.

– BY CAROLINE LOUISE HAMAR –

Endometriosis is a chronic condition whereby cells, similar to the lining of the womb, start to grow in other parts of the body such as the bladder and bowels. This condition affects 1 in 10 women globally and there currently is no cure or treatment that works for everybody. The National Health Service (NHS) in England has recently listed it as 1 of the 20 most painful diseases. Symptoms can include intense period cramps and constant pelvic pain. Wanting to find out how the medical community responds to women complaining about these two things, UK women’s health magazine Femi.Listen asked 15 women from the UK (who all confirmed that pelvic pain was a symptom of their endometriosis) about their experiences by means of an online survey.

How endometriosis feels? ‘Pelvic pain like a burning hot poker’

Their responses aren’t for the faint-hearted. Justina (32) describes the pain as ‘a heavy bowling ball pulling down in my pelvis, a stabbing pain in my stomach and rectum, lightning pain, aching pain, crushing pressure like I’m bruised and sore and like my stomach is going to burst from the pressure.’ While Laura (33) said: ‘When I am on my period, sometimes it feels as though there is something inside scraping away, stretching and pulling, trying to get out. Other times it is a dull ache that just refuses to stop – even with a concoction of pain relief and heat. The only thing that gives me relief is when the pain eventually knocks me out.’

The descriptions vary, but all speak of intense pain:

‘Stabbing, sharp shooting pains, feels like fire tearing through your body, cramping, like toothache in your ovaries! – Sian (32).

‘It feels like a dull ache all the time. But also sometimes like there is something in my hip that won’t move. And get stabbing pains right in my hip.’ – Abi (30).

‘Burning hot poker.’ – Georgie (29).

‘Traumatising. Burning. Bruising. Sharp. Nauseating, like I’m being scalped, or as if I’ve been beaten up. Heavy… it’s traumatic and hard to explain.’ – Leah (37).

‘Absolute agony, unable to move or breathe properly or do anything at all!’ – Kirsty (19).

Reactions of the medical community: ‘Pain is normal’

However, when consulting her GP, each of the 15 surveyed women was told, in one way or another, that pain is normal for women. Some of the reactions medical professionals had to their pain:

‘You sound frustrated. You shouldn’t be. You’ve got nothing to be frustrated about. Go out with your friends and forget about it. Pull your big girl panties up. It’s nothing.’ – Beth (24)

‘It’s just a bad period, having a baby would solve the problem.’ – Dee (25).

In their many years of seeking referrals and diagnosis, the women have had varying experiences with pain prejudice from the medical community:

‘The prejudice seems to come more from other women. I guess they must assume we all get the same pain during our periods, so they have no idea how it feels for someone with Endometriosis. It’s not just period pain and it doesn’t feel the same – we can’t simply take some pain killers and get on with our day.’ – Laura (33).

‘I have been told it’s part of being a woman. I’ve always been treated by men having little to no understanding how symptoms can affect day to day life.’ – Daniela (26).

‘I’ve been told many times (in the UK, and France) that my pain was normal: period pain is painful. That it was probably related to my past with anorexia. That I’m just too sensitive to the pain. I’ve been left with no help while having heavy bleeding (blood going through my clothes), and extreme pain even when going to doctors and hospitals appointments. Too many times I’ve been told it’s all in my head.’ – Morgane (26).

‘I was told it’s perfectly normal to have severe pain and heavy bleeding during periods even though I tried to say numerous times it’s not just when I have a period! Male doctors have even told me my pain is not that bad and one time when I ended up in hospital a male doctor even said ‘well I don’t have periods so I don’t know what to say to you’.’ – Sian (32).

When Is pain normal for women?

Femi.Listen consulted UK GP Nikki Ramskill, who was saddened and shocked by these results. One thing she wasn’t, however, was surprised. Ramskill: ‘Women with pelvic pain will often tell me horrific things they’ve had to go through and are so relieved when a doctor listens and advocates for them. While it’s lovely to receive compliments, I feel like listening is just doing my job. A woman’s story can tell me so much about the impact the pain is having on her life and then I can take action.’ Women’s health has always been Ramskill’s passion, especially since her grandmother died of ovarian cancer when she was 6. She qualified from medical school in 2009 and qualified as a GP in 2020, with the goal of helping women on a local level in Milton Keynes.

‘To an extent, having period pain is part of the female experience’

When asked why pain is perceived as ‘normal’ for women, Ramskill explained: ‘To an extent, having period pain is part of the female experience – giving birth is painful. The textbooks would say that if someone is getting on with their period pain, isn’t needing time off work and the pain responds to over the counter pain relief/hot-water bottles and goes within a day or two, then it’s ‘normal’. That said, every person’s experience of pain is very different, so it’s hard to say what ‘normal’ is.’ Recognising pain in women has never been easy for the medical community. Ramskill herself remembers having a coil fitted without pain relief five years ago. ‘It was horrific! Yet in medical school we were told women can’t feel this pain as the cervix has no nerve endings. Is it any wonder that practices like this still go on?!’

The expert: ‘Seek help if it affects your day-to-day life’

So, when should women seek help due to their period experience? ‘Pain which causes fainting, loss of normal function and complete misery every month is definitely not normal. This needs to be managed. Not being able to study or work due to period pain needs something to be done about it,’ Ramskill states. ‘Equally, if it’s impacting on other bodily functions, including being able to conceive, then this definitely needs investigating too. Or if none of these things apply, but the pain is worrying that individual, then I’d still definitely recommend seeking help.’

She recommends to track your period symptoms, such as bloating, cramping, pain, bloos loss, mood changes, and sleep quality, for at least three months. This can be done by using a period tracking app. Pinpoint when in your cycle the symptoms occur and then present your GP with this data. Ramskill: ‘I think the medical community need to listen to women. The pain gap is yet another example of a gap between men and women. I believe it comes from being a paternalistic society that is still valuing men over women. I see pockets of change, but it will take time before there is true equality.’

About the author
Caroline Louise Hamar has a degree in Film/Media and has just completed a postgraduate diploma from The London school of Journalism. As a freelance journalist, Caroline has written many articles about women’s health. She set up female health magazine Femi.Listen so that these women’s stories could be heard. ‘I use the term ‘listen’ as in to pay attention, be aware, alert and engage with what women are telling us – from personal experience, expert knowledge and opinion.’

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