"Endometriosis isn't just a physical condition – it has huge mental health repercussions too"
'Drama queen'. The phrase, uttered by both doctors and her parents, looped on repeat in Blossom's head – leaving her doubting not only the debilitatingly painful periods she had come to dread each month, but also her sanity. It was only a decade later, following investigative surgery and countless GP visits, one dramatic collapse and a misdiagnosis of a food allergy, that the 26-year-old was told she has endometriosis (a condition that sees tissue, similar to the lining of the womb, grow elsewhere in the body causing a myriad of symptoms, from pelvic pain, to bowel issues, fatigue and nausea).
Endometriosis (often shortened to 'endo') has been steadily gaining more awareness thanks to hard-working campaigners and celebrities speaking out, yet while more are beginning to get a better grasp on the physical side effects, the mental health implications that can also accompany endo (much like any chronic condition) are yet to have their turn in the spotlight. Something that urgently needs to change.
"A lot of attention is given to the physical symptoms but we can't ignore the ramifications endometriosis can have on a patient's mental health either," agrees Dr Amit Shah, a senior gynaecologist and co-founder of Fertility Plus, through which he's supported patients with endometriosis on their fertility journeys. "Although symptoms exist on a spectrum, for many they are life-changing, which can also have a knock-on effect on their social and romantic relationships."
He points out that the eight years (on average) wait time for a diagnosis may also contribute to major stress, anxiety and depression. Many patients also claim their self-esteem and peace of mind has been whittled away thanks to medical gaslighting or neglect – the condition is still often misunderstood by those who aren't specialists – which then bleeds into other aspects of their lives too.
But what can be done to help? And how else does endometriosis have an impact on mental health?
Fighting to be heard
Surgery is known to be the most effective way of treating endometriosis (there are two different kinds of removal techniques: ablation and excision) but the wait times and expense can majorly contribute to patients feeling trapped, despondent and stressed. According to a recent survey conducted by the Royal College Of Gynaecology, 80% of women currently waiting for gynaecology care said their mental health has worsened due to the wait and more than three-quarters (77%) reported that their ability to work or take part in social activities had been negatively impacted.
"One thing with endo flare-ups is that they can be triggered by stress – but it's also stressful having it," Blossom says. "It's a vicious cycle." And even those who are able to ride out the wait lists for NHS treatment, or who can afford (or can borrow enough) to go private, don't always have a positive experience.
"I've been left with extreme anxiety," says Sarah Victoria, 30, working hard to keep her voice level as she recounts her story. At one point her bloating was so bad, she says, she had to wear maternity jeans, yet her GP still refused to send her for tests unless she agreed to taking the contraceptive pill for six months – which she didn't want to do. "It took me twelve years to be told I have endometriosis and the diagnosis only came after a laparoscopy [a procedure that sees a small telescope inserted into the abdomen to examine internal tissue and surgically remove endometriosis lesions, cysts or scar tissue], which was massively downplayed." So much so, she recalls, she'd even arranged to go camping and horse-riding the following day, after hearing from doctors that it'd be a quick, minimally invasive, outpatient procedure.
But heartbreakingly, after having fought so hard to be taken seriously, the laparoscopy needed to diagnose endometriosis, that should have provided Sarah with a sense of relief, instead left her with serious mental health struggles.
"The actual surgery went fine, but unfortunately my bladder failed following it and nobody noticed. Post-op, you're meant to urinate before being discharged – I couldn't pee at all, but they sent me home anyway," she explains. "I was later screaming in agony, so my mum called an ambulance, and on the way to the hospital I just remember looking at the bright lights and thinking 'this is it'."
Sarah goes on to explain that she now wishes she'd been better informed about the surgery, and what to expect after, as well as having the foresight to push back against being discharged so quickly. "Nurses also forced me to have an internal examination, even though I kept saying 'I've had surgery less than 24 hours ago'. They laughed at me and said I was making it up," she recalls. "My mum ended up driving me to another hospital, where thankfully they listened and my bladder could be saved, but afterwards I just couldn't function – in any sense. I was traumatised. Counselling has helped, but even now I can just be watching TV and I'll get a flashback, my heart will start racing. I now worry a lot about dying."
She adds that this fear of not being believed, after being medically gaslit, has also spilled into her personal relationships. "Even small things, like my partner saying 'Have you moved my jacket?' and I haven't, I'll go to the absolute ends of the earth to prove I haven't."
And as well as the very real mental health issues that have arisen from the back of her endometriosis and surgeries, Sarah explains that doctors have also incorrectly labelled her with anxiety and depression in the past. "At that point in time, I was travelling the world and having an incredible time. I couldn't understand it," she says. "After the appointment I went off and Googled 'depression' and 'anxiety' and none of the symptoms matched me at all, I was so confused."
The way a diagnosis is delivered can have a lasting impact too, says Blossom, as can concerns around your future fertility being impacted – something she says was entirely blindsided by via her own doctor. "The chat around my diagnosis was brief, without compassion or support, and happened as I was coming round from surgery," she shares. "The doctor was just like, 'yeah, we found endometriosis tissue. It's a life-long condition with no cure and it may affect your fertility' and then left. I was just sat there not knowing how to process it. I've always wanted to be a mum, so it was the hardest thing for me to try and grasp. I cried for hours after that 'conversation'." [Endometriosis UK notes that "even with severe endometriosis, natural conception is still possible" and estimates that 60 to 70% of those with the condition can get pregnant spontaneously.]
Staying social with endometriosis
As well as having to process the blunt diagnosis and gruelling surgeries, Blossom explains that regularly having to cancel plans plays havoc with her wellbeing. "I worry that people think 'it can’t be that bad' because I'm socialising and smiling, but inside I'm still struggling, and have to pack painkillers and a hot water bottle just to sit in a pub." But isolating yourself, she affirms, isn't an option either. "At points I become reclusive, spending most of my time with my partner at home to avoid the social anxiety around my illness, which is damaging in itself."
For Stef Williams, 31, a fitness content creator from London, endometriosis has also impacted on some of her personal relationships and initially brought about mental challenges, which she's hard worked to overcome. For her, she explains, one huge hurdle to navigate is pain during sex, along with changes to her appearance and energy levels. Having always been a "sporty, energetic person", when fatigue hit hard in her teenage years, Stef says she struggled with it.
"I've always been fortunate with my skin and I started breaking out with really bad spots too, and gained a lot of weight," she adds, sharing candidly that this is what prompted her to go to the GP, who – much like the doctors Blossom and Sarah saw – lacked empathy. "When I told her about the pain I was experiencing during sex, she kind of slut-shamed me a bit, asking how many people I was sleeping with. I understand they have to ask those questions but there are ways of phrasing things."
Stef also shares that in her late teens and early twenties, she experienced a period of very low mood (depression), albeit prior to her endometriosis (and Polycystic Ovary Syndrome) being officially diagnosed. "It was endo though," she says. "All the signs, everything that I was feeling, led towards it, I'd sometimes hunch over from pain when walking down the street. That along with the shame... I really think if I didn't have endometriosis, I wouldn't have gone through that dark period of time."
Like Sarah and Blossom, Stef also had an operation for her endometriosis, where tissue was lasered off – it went well and after, she says, she experienced a holistic wake-up call. "The experience made me have a frank conversation with myself about my health and the kind of exercise I do. Previously I'd been lifting really heavy weights, which causes fatigue and takes such a toll on your body. After my surgery, I scaled back and realised I wasn't letting endo 'win' if I lifted lighter weights, I'd actually just be helping myself. It's easy to blame everything on endometriosis, like oh 'this is the only reason I'm tired', without looking at what else you're doing in your routine that could be making you feel worse." Now, it's a delicate balance, she says, and changes to her diet have also contributed to an uplift in her mood and symptoms.
How to look after your mental health with endometriosis
In an ideal world, a diagnosis would come quickly, says Dr Shah, to both avoid further health complications down the line, and for the sake of one's mental health. "The sooner that happens, the sooner one can build a toolbox to help manage the condition; it could include counselling, therapy, or complementary alternative therapies, like acupuncture for pain management and stress," he suggests.
He adds that we need to talk about the condition more "to encourage further research, as we still don't know what causes – or cures – endometriosis, which can also exasperate the stress". Dr Shah also notes that "finding connections within support groups can be incredibly helpful when navigating symptoms" too – something that Blossom, Sarah and Stef all echo.
"I've joined endometriosis communities on social media, and if I'm going through something, 9 times out of 10, they have too," says Blossom, who advises searching #endowarrior and #endometriosisawareness as a good starting place. "My friends support me as much as they can, but it can be hard to be felt understood when they haven't experienced it. In the past, I've had friends be quite dismissive, assuming it isn't bad because I'm able to socialise for a bit or have rated it a '5 or 6 out of 10 on the pain scale', which has an effect on me mentally, as I feel I'm not taken as seriously due to it being an 'invisible illness'."
For others, in-person connections are best. "I found some endometriosis online spaces were – understandably – full of people in really negative headspaces and they actually made me feel worse," Stef shares. "Instead I arranged a café meet-up with a little group I'd met through Instagram, and it was incredible. I worried conversation might not flow, but it instantly did. It was so great, there was no pressure, and if anyone had to flake out last minute, we all completely understood why."
After her diagnosis and distressing hospital experience, Sarah also chose to channel her pain into building a community: she now runs The Fanny Diaries, an 11,000-strong Instagram resource, that she uses to share news and advice, minus the medical jargon. "I always say you have to be your own biggest advocate," she nods determinedly. "Or as I prefer to word it, you have to fight for your fanny."
Blossom shares that self-love is something she now prioritises too, "Endometriosis can make you hate your body," she says candidly. "I've tried therapy before but was told to seek treatment to manage symptoms, in the hopes that would positively impact my mood – but the pain always comes back, and then so do the low moods.
"Now, I've resorted to being my own therapist and find ways to manage my stress and low mood with self-soothing activities. It's a balance between being active and listening to my body when it needs a rest, journalling, breathing exercises and having a support network to vent to."
For Stef, self-care takes the form of her refined diet and exercise routine, as well as making a conscious effort to stop putting pressure on herself – in all ways. "I think sometimes you have to laugh, especially with sex stuff, like if I suddenly have to run to the toilet halfway through," she jokes. "Sex is an important part of a relationship but it's not the most important part, my husband Alex is my best friend and a partner should be there trying to support you. It shouldn't all be on the person with endometriosis to deal with, or take on as a personal burden."
However, Stef is conscious to add that it's important not to "burden your partner with it entirely either", she recommends talking to friends, family or a therapist, as "it shouldn't take over your relationship, or become a topic that's spoken about endlessly. That only makes endometriosis feel like a bigger, more negative, more powerful thing."
As for diet and exercise, Stef says how you eat and move can definitely contribute towards making you feel a hell of a lot better – or a hell of a lot worse – depending on how you want to play it. "After my operation, going on a walk was all I could do," she shares. "At first it made me feel like an old lady, but then I realised how transformative it was for my mental health too. I also started Pilates, which has helped me to build my core and my pelvic floor muscles in the right way, without a lot of impact." On the food front, she personally finds avoiding red meat helpful, along with limiting dairy, sugar or processed foods. "I was really strict for about ten months before gradually re-introducing here and there. I stopped having coffee, because it irritated my body, and switched to matcha," she notes. "These things sound minor, but they really did add up."
When it comes to endometriosis – or any chronic condition – as a society we're so much better now, compared to say five years ago, at acknowledging invisible illnesses (and that they can impact different people in different ways). But there's still a long way to go before they're truly as understood in the same way that a physically obvious condition, like a broken bone, is. The next part of the conversation that we urgently need to have is on how the brain can be influenced by what's going on in the body. With physical and mental health, there's often no separating the two – and compassion, awareness and grace can go an awfully long way in helping to manage both.
Connect with Stef on her fitness page here and Sarah's Fanny Diaries account here
For information, support and advice about mental health and where to get support, visit Mind’s website at www.mind.org.uk or call Mind’s Infoline on 0300 123 3393 (Monday to Friday, 9.00am to 6.00pm). This article is not intended to be a substitute for professional medical advice or diagnosis. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.
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