With the start of the new year we also begin a new collection of articles. This month, we are focusing on endometriosis. Endometriosis, such an enigmatic disease that affects up to 15% of women of reproductive age, yet there is no cure for it currently. Only a treatment to alleviate the existing symptoms. Endometriosis has significant effects on the social, occupational, psychological, and physiological life of women.
In the previous weeks we looked into what endometriosis exactly is, what the symptoms are, and how it can be diagnosed and treated.
But endometriosis is more than this. It has become an economical and societal problem that affects women on more levels than we would think.
Let’s dive in!
Endometriosis is still an under-diagnosed, under-reported and under-researched condition, even though it affects up to 15% of women of reproductive age. Therefore, the economic impact of this condition is significant and similar to other chronic conditions such as diabetes and rheumatoid arthritis.
Endometriosis affects the health-related quality of life (HRQoL) and work productivity across many countries and ethnicities. Several studies researched this impact of endometriosis on society.
One of these studies is the Global Study of Women’s Health (GSWH) (2011), which investigated the impact on life in women living with endometriosis on a global scale. The GSWH is the first study that demonstrates the impact that endometriosis has on health and society. The study was conducted across 10 countries in the period of 2008-2010 and researched the effect of endometriosis on HRQoL. Results showed that affected women had a lower work productivity, up to 10 h/week less. This work productivity results in an economic burden for countries ( around 250 dollars/week at that time in the US) and a lower income for patients. The loss of productivity was measured from two perspectives: presenteeism (reduced productivity while at work) and absenteeism (time of absence from work). The effect of endometriosis on physical HRQoL was considerable, reaching similar quality of life scores as patients with cancer. The pelvic pain and the severity of endometriosis were the main factors that influenced the productivity loss.
The WERF EndoCost Study, conducted in 2011, measured all costs from an economic and societal perspective that are related to endometriosis. The overall costs included direct health care costs (physicians visits, medication, monitoring tests, surgery, hospitalization), direct non-health care costs (transportation, support household activities), direct costs and indirect costs, leading up to an average of 9600 euros annual costs. The true cost of endometriosis is revealed with the additional negative impact on society. Regarding quality of life, women with endometriosis that participated in the study showed up to 19% reduced quality of life, when comparing with a person with the best possible health state.
Another survey (2012) conducted in 10 countries showed that the annual average costs of endometriosis can be as high as 9600 euros per woman. Health care costs make up one third and two thirds are on account of work reproductivity losses.
Many women with endometriosis end up having a lower quality of life due to pain, emotional impact of infertility, anger about disease recurrence and uncertainty about their health related future. From a patient's perspective, as endometriosis is still under-researched, it raises a lot of questions that are influenced by misinformation, myths, taboos, lack of diagnosis, ineffective treatments.
A qualitative research from 2014 explored women’s experiences of living with endometriosis and its impact on the quality of life. Most of the women participating in the research had a history of 2 to 40 years of living with endometriosis. Almost half of them reported that endometriosis interferes a lot with their life and that they had a moderate satisfaction regarding their treatment. The overall feeling of the participants was that endometriosis has a major impact on fertility, sexuality, ability to work and personal relationships. The study explored the experiences of living with endometriosis and the impact of endometriosis on women’s lives.
The following testimonials from the 2014 research show a glimpse of how it is to live with endometriosis.
The experience of living with endometriosis
Symptoms related to endometriosis
“I remember getting the first lot of symptoms like someone had heated a knife and was ripping it up through my stomach. That’s how it felt. I didn’t know how else to explain it”.
“I started to worry when my ex-partner and I got together and the pain during and after sex just got that bad that I would just lay in a fetal position for hours afterwards. It got progressively worse to the point where I would actually be crying during and after sex”.
“It’s the bleeding, the constant bleeding that is the most frustrating part because I have to be stocked up with pads, have a spare of everything because I just don’t know when it’s going to happen”.
Delayed diagnosis
“I know I suffered with the pain and it was bad. But my GP [family doctor] I’d been telling him since I was 13 years old something was wrong, and he was male and he just didn’t want to follow it up…he sort of just brushed it off – you’re OK. Put me on a tablet called Ponstan and I was on that. He just kept telling me to take that you’ll be fine, you’ll be fine and everyone pretty much thought I was just being a sook [sic] until I was diagnosed at 21”.
Treatment of endometriosis
“I’ve tried the treatments, surgeries, steroids …and the pill but I’m allergic to the pill now. I’ve just had 13 changes to the pill in one year and 13 pregnancy tests, all of which were negative. So the year before they discovered I was allergic to the pill. And also [tried] alternative medicines, naturopathies which [I found] the combined effect, was the most effective”.
Experience with health care providers
“I found it very hard to access my specialists. I was in so much pain that I called my specialist and I just wanted some guidance as to what I could do. The answer was, “Have some more Panadol”. My experience in Sydney wasn’t that great either. I went to a specialist in Sydney. I had a lot of questions and thought that because he is a specialist having to deal with hundreds and hundreds of people that he can give me the answers to my questions but he did not have time to talk”.
Lack of information
“Yeah, I should be aware but it was kept as a secret, I didn’t know that this exists. I’m quite a sort of [a] nosey person in terms of health and what you can catch and what you can’t. In school, we’ve never heard of endometriosis… even when I did biology and science. I just never heard anything especially when teenagers are so sexually active and you just want them to know what was going on”.
Impact of endometriosis on women’s life
“Living with it, it does affect me nearly every day I feel it”.
Physical impact
“Prior to having endometriosis, I used to run every day and was very active. For the last six months while I waited for surgery to remove the cyst and endometriosis, my level of exercise was severely reduced. I could only walk about once or twice a week and it was very painful. I gained weight and felt dissatisfied with my body. It also impacted my self-confidence. I began wearing more baggy clothes, also watched more TV and had general feelings of being lethargic and spaced out”.
Psychological impact
“It’s just unpredictable. It may recur at any time in your life. I just feel tired and shattered because you just don’t know how to deal with it and you don’t know when it’s coming back. I want to plan something like a holiday but I cannot plan it because you don’t know what’s going to happen. You just feel like you can’t really arrange your life, you are arranging your life around the disease. It controls you even if you don’t want it to”.
Marital/sexual relationship impact
“I have had dyspareunia my entire life. I have never, ever had sex that wasn’t painful. I’m nearly 30 years old. I want to have sex. I mean it affects my relationships; I’ve never had one that’s lasted longer than six months because guys - you go well - especially when I didn’t know what it was, no one wants to go near that”.
Social life impact
“I don’t tend to socialize and keep to myself because of pain and bleeding. As a result, I have missed out on travel, concerts, weekends away and school/university events etc”.
Impact on education
“I was missing a lot of time off school and they thought it’d be a good idea to have surgery. I waited about three months for the surgery and then it got to the point where it got really, really bad where I had three weeks straight off from school”.
Impact on employment
“I left my part time job because I was not able to work due to severe symptoms and undergoing two surgeries… Having two surgeries within a year it’s kind of hard to find a job if you think that that’s going to be ongoing, not many people are going to employ you to have time off”.
Financial impact
“Financially, it impacted [on] me quite a lot because when I was put on the pill the ones that were covered by the pharmaceutical benefits…The only one I found worked for me wasn’t covered and it was quite expensive”.
Impact on life opportunities
“I’ve been an elite athlete [Sport name] on [Name] team since I was 14 …. Pain, tiredness and fatigue due to endometriosis had a big impact on my sporting life….Obviously it’s a big impact on that particularly during competition season so I would be on the start line. I’ve been on the start line in a competition, you know silent tears running down my face and my mum rubbing my back and it’s [Name] championship or something and I have just got to start, so that’s had a huge impact on my life. Also in terms of obviously when I had surgery in [Year] that typically took a big chunk out of my competition season this year. So that was a big impact… So that’s definitely something that can disrupt that side of things”.
Impact on lifestyle
“I did find myself taking at times more painkillers than I should and when that wasn’t working; I did at one stage try marijuana. I reckon I had been told that did help with the pain and sleeping, because I had problems with sleeping because of the pain. But as far as drinking and stuff goes, no”.
As we can see, endometriosis has a substantial impact on women’s life and on society in general. An understanding that the actual impact of endometriosis is bigger than we currently think, would speed up the current research and would result in a more suitable solution for this condition. We hope for a day when endometriosis will no longer be an impediment in living your life the way you want it.
Be smart. Be (c)LIT. Fly with us!🌺🐝
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