Endometriosis - Don't Suffer in Silence

One chronic illness is more than enough to handle, let alone four. But at just 29 years old, Hebe has been battling multiple women’s health issues for 17 years. In this series “When Our Worst Leads to Our Best”, we explore personal stories of challenge and adversity, like Hebe and her health battle.  We find out how sometimes our darkest moments can lead to remarkable awakenings and positive self-discovery.  Or, in the words of the second only female U.S Supreme Court Justice Rose Bader Ginsburg (aka RBG), “"So often in life, things that you regard as an impediment turn out to be great, good fortune."

Hebe is a musician. 

She loves to sing and used to do so professionally from the age of 16. Her passion is for electronic and heavy, but ultimately music in general is in her bloodstream. She began her adult career working in the industry and would go to gigs up to three times a week. But Hebe’s not heading out to nearly that many gigs anymore.  It’s not easy to get the wheelchair into a lot of them. Nor is she working anymore. A combination of several chronic illnesses that only strike women means that, some days, she can hardly get out of bed, let alone get out of the house. 

What is endometriosis? 

Also known as ‘endo’, this is a condition where tissue similar to the lining of a woman’s womb grows elsewhere in the body, including the fallopian tubes and ovaries. Although symptoms vary depending on the individual, it can be incredibly painful. It can only be diagnosed via a laparoscopy (keyhole surgery in the pelvic/ stomach area). 

Since the age of 12, Hebe suffered from classic endo symptoms but was only diagnosed two years ago. It came as no surprise. Hebe - and everyone around her who witnesses her suffering - always knew. However, whilst some women experience pain and discomfort only at certain stages of their menstrual cycle, Hebe is not so fortunate. Given the location of her growths, which are anchored at the base of her spine, she is afflicted by acute pain month-round, day in, day out. 

Endo isn’t the only illness on her plate. In  spite of this being more  than  enough for one woman to have to cope with, Hebe also suffers with Polycystic Ovarian Syndrome, Fibromyalgia and Premenstrual Dysphoric Disorder.

What is Polycystic Ovarian Syndrome, or PCOS? 

Women with PCOS often fail to ovulate, or they do so infrequently. Caused by numerous and large cysts on the outside of the ovaries, it is one of the more common causes of infertility and can lead to other illnesses and health issues such as Type 2 diabetes, sleep apnea, depression and high cholesterol. In some cases, such as Hebe’s, the cysts are linked to endometriosis. 

What is Fibromyalgia?

This is a long-term condition that causes pain all over the body. It can often heighten one’s sensitivity towards pain and lead to extreme fatigue, muscle stiffness, sleeping difficulty, headaches and irritable bowel syndrome. Hebe has been afflicted by it for four years. This and the endometriosis and PCOS mean she is mostly wheelchair bound. When she can walk, it is only with the assistance of a stick and only for a few metres. 

What is Premenstrual Dysphoric Disorder, or PMDD? 

It’s like premenstrual syndrome (PMS) on some kind of rocket fuel. Irritability, depression, anxiety or a combination of all three can overwhelm the sufferer and make things seem unbearable. Hebe’s emotional wellbeing has been hijacked by PMDD for the last ten years.

Individually, any one of these chronic health issues would be a struggle  to deal with. Together, however, they create a fearsome foursome that means Hebe can’t escape physically, emotionally or mentally. Before undergoing surgery on her spine to try and remove all the cysts, she would present at A&E an average of six times a year. One visit to A&E might be bearable  for most of us, but six…?

When it comes to health funding, a penis trumps a vagina 

Did you know that erectile dysfunction affects 19 percent of men, yet the issue receives five times more research than premenstrual syndrome, which affects 90 percent of women? Such figures form an overwhelming body of evidence that, by and large, society normalises health concerns and pain that only affect women. Unless the illness concerns men too, the attention and finances just aren’t as readily available. 

Hebe knows this because she lives it day in, day out. It’s only in the last three years that she has not come across a medical professional who believes it’s all a figment of her imagination and it’s only recently that  she feels the medical  industry is starting to understand and appreciate these conditions for what they are. But there is still much to be done. 

How collagen supplements have helped Hebe 

Within a month of starting to take Edible Health’s bovine collagen powder supplement, Hebe noticed an easing of her fibromyalgia symptoms. The pain in her feet and ankles has reduced, which in turn means it’s easier for her to do her physiotherapy. She’s also noticed an improvement in her circulation - her hands and feet don’t suffer the cold nearly as much as they would previously. Perhaps most enjoyable is the fact she has been able to put on much-needed weight. Previously she wasn’t properly digesting her food, and she had lost a significant amount of weight. Now she can literally stomach her meals. 

Interestingly, Hebe used to be vegan but, when she appointed her endocrinologist, she was told to immediately and urgently introduce cheese and fish into her diet. Her nerve damage and muscle degeneration were starving for more protein. So she made this sweeping change, and introduced collagen at the same time. Surprisingly she takes the bovine (in a daily afternoon matcha tea) because her endocrinologist suggested it would be better for her. She wasn’t going to argue - moral dietary choices have become far less important to Hebe than achieving good physical health. 

How has chronic illness helped Hebe? 

You wouldn’t think it’s  possible to find a silver lining in such a cocktail of serious illnesses. But Hebe has come through her experience and has seen the positives of her condition. 

People who suffer from chronic pain often become so good at internalising their constant agony that it works against them. It projects to the world that they’re actually doing fine, when in fact they’re in turmoil. Hebe perfected that internalisation a long time ago, so she’s had to work extra hard to convince the medical profession that she genuinely needs their attention and care.

She’s become a lot more valiant in standing up for herself and pushing the medical field for a response and reaction of substance. She won’t beat around the bush when communicating - she gets succinctly and confidently straight to the point. She thinks her conditions have  taught her to be more diplomatic - to better understand how she can handle a situation to get the outcome her health needs. She’s an articulate, confident and calming speaker - she isn’t prone to hyperbole but instead discusses the brutality of her condition with eloquence and a matter-of-factness. In Hebe’s words, she wasn’t a push-over before all this, but it’s certainly given her a tough skin and means she can handle a lot. Another positive that has taken her by surprise is that she’s not fussed about what people think of her. She’s not making an effort to always be the cool Hebe. She still loves experimenting with make-up, but she genuinely doesn’t care about projecting a certain look. 

It’s still early days to know if her surgery (which took place in June 2019) will deliver the long-term results she hopes, but her mind has started to shift towards other women in her position. Whilst she’s been fighting for years and the end of the battle isn’t in sight, it might now be time to take this further and more broadly, to put her experience, knowledge and skills to use so that she and her fellow female sufferers can take a stand against a system designed by men for men enabling these women’s health conditions to get the societal respect they deserve. 

The information we have provided herewith, and all linked materials, are not intended nor should they be construed as medical advice. Moreover, the information herewith should not be used as a substitute for professional medical expertise or treatment. Please refer to our Terms and Conditions and consult your General Practitioner for advice specific for you.