'My endometriosis was making me suicidal'

A woman has shared how chronic pain from endometriosis led to her having thoughts of suicide at one point. Saff, 26, is a PR executive from Manchester who has published extensively on social media about her experiences with the condition, which is thought to affect as many as one in ten women in the UK.

Saff posts under the name @browngirlendo on social media, where she uses her channel to draw attention to issues surrounding endometriosis and invisible disabilities. After being diagnosed with endometriosis aged 25, she now uses medical cannabis to help manage pain and anxiety around her medical appointments.

It comes as waiting lists for gynaecologist appointments have doubled, with the BBC reporting that at least 630,000 people are currently waiting for an appointment. This includes for conditions such as endometriosis.

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Endometriosis is where cells and tissues similar to those in the lining of the womb grow in other parts of the body. While associated with extremely painful period pain, it can affect any organ.

When she was 16 Saff began experiencing excruciating pain, which she described as feeling "like your abdomen is contorting and being pulled down inside your body." She told how over the years the pain has became so everyday that it's a new normal for her.

On one occasion, Saff said this meant she felt that her pain was not being acknowledged as she was not "crying out" because she was used to it. She told the Manchester Evening News: "It was the first time that I had to shout at a medical professional. I don't want to feel as though just because I wasn't crying out in pain I wasn't in pain."

She added: "You're used to being in such a high level of pain all the time, when you go to A and E you might appear calm and normal, because you're used to being in that state for so long."

Her experiences in hospital left Saff feeling intense anxiety whenever she went to A and E due to her chronic pain.

"I felt so frightened, this was the place you go to get help, this was where I was hoping that I wouldn't be turned away," she said. "I had this moment of explaining everything. I was in such a panicked state, I was shouting. I never felt so scared in a hospital before."

Now when her pain become more than she can tolerate, Saff says that she has to make a horrible decision in her head. This is whether the pain relief from going to hospital would be worth risking aggravating her mental health.

She said: "I can reach a baseline of pain, but that baseline can then be breached, and that's when you have the thought of do I go to hospital or not."

Saff added that while she becomes aware that "there's a physical need to go", she is left wondering "how's this experience going to affect my mental health?"

At one point things became so bad that the pain was affecting Saff's quality of life. Work became exhausting and she didn't have the time or energy to see her friends or spend time with her partner, instead feeling trapped at home.

"It was getting worse, every single day, every single period," she said. "I came to the conclusion that my endometriosis was making me suicidal, to the point that I had the thought in my head that I wish I died because the pain was so extreme."

She added: "I think that really got to the point, I had depression and anxiety, it takes your independence away from you. My job involves travelling to work, I would take a few days to recover.

"I didn't see my friends because I couldn't take public transport. Me and my partner were spending less time together because I was so tired."

Now, Saff takes medical cannabis to help manage her pain and her anxiety. She said: "Medical cannabis has been essential to managing my endometriosis, anxiety and migraines. It’s been a lifesaver.

"Through this I went through the temporary chemical menopause and recently have had to reduce painkillers and avoid them unless necessary because of migraines. I also struggle with fatigue due to all of this, and the cannabis is able to give me energy again. I have anxiety and depression too, and I have found it to be really helpful for anxiety around medical appointments.”

Saff also shared some advice for women who are worried that they might have endometriosis. She said: "Make sure that you track everything, that makes it so much easier when you're going to your appointments. Doctors are not always right, you can seek a second opinion. Make sure you see an endometriosis specialist.

"Find community online. There's lots of helpful guides for how to talk online, do talk about it, because it's not good to keep it all inside. Be gentle with yourself."

Alternaleaf provided the medical cannabis that Saff uses. Nabila Chaudhri, medical director at Alternaleaf said: “Millions of women in the UK are living with excruciating pain, so to hear that Gynaecology waiting lists have doubled in the past 4 years, and three-quarters of a million women are waiting for appointments, is incredibly alarming.

“As a result, we are seeing increasing numbers of women looking for alternative treatments such as medical cannabis, to manage their pain. Medical cannabis can help manage symptoms of gynecological conditions including chronic pain, migraines, depression and anxiety, by targeting the endocannabinoid system.

“The treatment can provide a safe and effective alternative treatment for Gynaecological conditions and with greater awareness, it has the potential to help millions of women live a more comfortable and happy life by minimising their symptoms.”