4 women share how they got diagnosed with endometriosis

It also impacted negatively on my fertility as I struggled to get pregnant. Being a Nigerian woman, there are a lot of cultural perceptions and expectations about having children. When this does not happen soon after marriage you are seen negatively. As a couple, we had to hide our decisions due to stigma and stereotypes from people around us. I also had feelings of guilt and disappointment as a woman for not being able to do what other women do naturally due to the condition.

It was a very isolating experience due to the low level of awareness, especially among black and minority women like me. I felt like I was the only black woman battling with the condition. Some women might say every woman experiences menstrual cramps, so what’s so special about yours? I couldn’t share my experience, except with my husband, but sometimes you can’t understand until you have experienced it yourself.”

What was your reaction to the diagnosis at the time. Did you have worries or concerns?

“Even though I felt bad, I also felt validated. In the African culture, we usually tend to spiritualise everything. When you are sick or infertile there is this perception that you are possessed or have a bad omen. However, after my diagnosis, I felt validated that I was sick and not possessed by evil spirits or whatever. My major concern was the inability to conceive after several fertility treatments due to the cultural stereotypes and stigma in our culture and society.”

How do you feel about your diagnosis now?

“At the moment I am on hormone injections that put my system into clinical menopause. I cannot afford to be on my period as the symptoms are so bad. At the moment I am thriving with the help of the hormonal injections.

I am passionate about creating awareness among black and minority ethnic women like me who are going through similar issues because endometriosis can be a very isolating and traumatising experience for someone to go through alone. This is even worse when you have no idea of what’s going on with your body. Having a network of support helps improve the well-being of women, enables them to share their experiences and support each other, and find ways that can work or relieve their conditions. Endometriosis is a complex disease being that what works for one person may not necessarily work for another and there is currently no cure for the condition. All I have to do is hope that my condition continues to improve.” 

Anya Meyerowitz, 33, London

What were your symptoms, how did you know something was up?

“I was diagnosed with endometriosis four years after my symptoms first began at university. By this point, I was struggling with intense abdominal and back pain that often prevented me from getting out of bed around the time of my period. It often brought me to tears. I also had swollen legs that made walking painful, a constant, low-level feeling of nausea, and I struggled to go to the loo whenever my endometriosis flared up, which made me constantly uncomfortable. Up until my second year of university, I’d barely noticed my periods, only ever having to wear light pads and experiencing little to no pain each month.”

What was the process to get a diagnosis and what help were you given to manage the symptoms?

“It was first suggested to me that I might have endometriosis when I went for acupuncture to try and help the pain. I’d never heard of it before, but was advised it would be useful to go and see my doctor. I found the first appointment, with a male doctor, pretty humiliating and felt my symptoms were belittled (“do you drink a lot at university?”, “do you normally have a low pain threshold?”), so I didn’t go back to the doctors about it for a good few years. When I did, the process was much smoother, and after several appointments and a colposcopy, I was diagnosed with endometriosis and prescribed medication.”

What was your reaction to the diagnosis at the time. Did you have worries or concerns?

“My reaction was one of relief. At university I could afford to take time off in bed when pain flared up, but now as a working adult, taking four or five days off each month was no longer feasible and had caused me issues at work, as well as heightened anxiety and stress. My main worry was that I was told it could impact my fertility later on (though I’m happy to say that I am now six months pregnant). At the time, the doctor advised that if I did struggle with getting pregnant or my symptoms continued to get worse, I could opt for keyhole surgery to remove some of the cysts around my ovaries in a bid to reduce symptoms and increase my chances of falling pregnant. I began taking mefanamic acid and found that, although it by no means relieved me of all pain, it allowed me respite, made it easier to sleep and certainly helped take the edge off the abdominal and lower body discomfort. I also bought a mini rechargeable hot water bottle so that it was easy to carry around and use constantly wherever I was.”

How do you feel about your diagnosis now?

“I wish the process hadn’t taken so long and that there had been more resources and research out there to help me manage symptoms, rather than it so greatly impacting my life. Eight years on though, I have managed to build a life – and a support network – that makes managing endometriosis much easier. Would I wish it upon anyone? No, and I’m desperately hoping that my symptoms are greatly reduced post-partum (which my doctor informed me does often happen) but, if they’re not, I’m mainly pleased that there is greater awareness now than there used to be, rather than my workplace or friends just shrugging it off as ‘bad period pains’.”

If you think you might have endometriosis, seek help from your GP and for more resources, check out endometriosis-uk.org.

For more from GLAMOUR’s Beauty Editor, Elle Turner, follow her on Instagram @elleturneruk