What do women with endometriosis say about their experience of the disease?

In mid 2016, the Citizen Endo research group launched two anonymous online surveys to better understand how women with endo would like to track their experience of endometriosis.

In the following weeks, the endometriosis community responded enthusiastically, with a response rate much higher than we had originally hoped for. There were nearly 800 responses to our first survey and 500 to our second. Thank you. You helped us get the word out to women with endometriosis all over the English speaking world (and even Spanish speaking world) through Twitter, Instagram, Facebook, and emails.

Survey 1. Responses to “Do you have endometriosis?”, where 96.7% of women responded yes, they had endometriosis diagnosed by a medical professional. 87.2% reported being diagnosed as a result of surgery.

We asked you some specific questions about pain, emotions, medications, self management techniques, other diagnoses, and menstruation history, and you have given us lots of detailed, useful responses. We also prompted you with “Anything else about our endometriosis app (or endometriosis in general) you’d like to tell us?” You provided us with striking narratives and thoughts about your experience of the disease and what you would like to see in an app for tracking endo. We have read every single one of your responses. We’d like to focus on the themes we found across all of your answers. Below are just some of the anonymous quotes from these free text fields we feel it is important to share.

Women wrote about feeling unheard:

“I just wish doctors understood how bad I’m doing.”

“No doctors ever believed me that I had a very heavy flow, despite the fact I could measure the precise amount using a diva cup. If they had listened sooner maybe i wouldn’t be infertile due to the extensive scarring i’ve experienced.“

“Endo sucks. Although I’ve had the pains since I was 12 so severe sometimes I can’t function, I wasn’t officially diagnosed until 13 years ago. It’s been a very frustrating and long drawn out experience. Because of all the variables in symptoms from person to person as well as so little known about this it makes it very hard to manage and get someone to really listen.”

“I hope doctors listen to patients about their symptoms… delaying the diagnosis for about ten years… we feel like we are making up our symptoms rather than receiving the help we need.”

“I constantly doubt that my pain is real despite having it surgically diagnosed.”

“It took too long to get diagnosed. One doctor said, ‘What makes you think you are that special? You can’t handle the pain, just put up with it’.”

Women felt that the disease was poorly understood:

“I don’t know a lot about my disease because I don’t have a great doctor and I don’t think my family sees the severity of my condition. I feel alone and lost. I’m not sure where to even learn about the disease.”

“Please cover endo as a whole system illness. It can affect many other organs/areas then reproductive. These are the area doctors often miss.”

“It took 20 years to be diagnosed. It’s terrible. The emotional / social impacts are huge. And it’s so hard to get scientific information rather than myth, and to make sense of a complex disease.”

“A lot of doctors don’t know what it really is. I had surgery for ovarian cysts and the doctors saw that I had endometriosis, they didn’t give me any medication, nor do they keep up with me in case I have it again. One doctor after the surgery told me that the cure is to get pregnant! The doctors must be more informed about it.”

“I was diagnosed very early however treatment is ridiculously poor and I am currently at a complete loss of how to continue trying to get well.”

Women wrote about the impact the disease has had on their lives:

“It has ruled (and ruined) my life since I was 13. I’m 30 now and feel like I’ve had no life.”

“Endo has stolen years of my life. I just want to be the happy, positive, active woman that I used to be.”

“It’s a very long and emotional process living with an undiagnosed medical issue… The longer the symptoms, the more severe it becomes.”

“Endo is so frustrating, it has taken my life from me. Everything has worsened since the birth of my son…. I wish more doctors had the knowledge to successfully treat this disease, it’s so isolating.”

“I overloaded my body with pain killers of all kinds destroyed my stomach, my immunity, and finally arrived in the situation of not being able to eat.”

“At 32, I have exhausted the treatments available. Endo has taken my social life, sex life, and I have to struggle to work. Now it has taken my ability to have children… I feel like endo has taken my identity. I grieve for the woman I would have been without synthetic hormones and medication, would I have been a different person without endo? Unfortunately I’ll never get to know who the ‘real me’ ever was. That is my biggest loss.”

“I have been suffering since I was about 18 and I am going to be 48. I often wonder what I could have accomplished if I not had this monster disease. I still was able to [go to graduate school] and work but it is a daily struggle. I have never been able to devote enough time & energy to my career to be truly exceptional.”

“It’s left my body broken.”

This picture of endometriosis fits with what researchers have started to document about the disease.

So far, researchers have described distinct dimensions of the quality of life for women with endometriosis. Productivity loss and its associated cost, in particular, has been studied. For each women with endometriosis, she loses an average 10.8 hours of productivity a week, along with approximately US$250 per week[1,2]. Beyond one’s work life and bank account being affected, a woman with endometriosis experiences a greatly reduced quality of life when it comes to social interactions and sexual relationships. In particular, women with endo often have to miss out on social events because of their disease[3]. This difficulty with social connections extends to sexual relationships, as endo patients can often have pain during sex[4].

Decreased quality of life is worsened diagnosis delays averaging 7 years[1]. Part of the reason for this delay is that there is a often a disconnect between patients and the healthcare ecosystem. This disconnect has been documented through patients’ reporting a dismissal of their symptoms and stigmatization of their disease by the medical establishment[5, 6]. The dismissal of symptoms creates emotional backlash, and women can be denied important medical care[5].

The dismissal of symptoms by the healthcare ecosystem may stem, in part, from the gaps in research that currently exist in regards to endo. Despite endo being documented in the literature for hundreds of years, the disease is still poorly understood. In particular, what causes the disease and how this disease manifests in patient symptoms like pelvic pain and infertility remains unclear[7]. Moreover, researchers have begun to identify the importance of patient perspectives on important issues in endometriosis research. In particular, it is essential for researchers to understand how patients experience symptoms on a day-to-day basis[7]. Gaining this type of knowledge is necessary for developing new treatments and diagnostics, better care for patients, and a better fundamental understanding of the disease.

Although little precedent exists for the involvement of endo patients in research, there is growing and overwhelming evidence in other disease areas that patients have an exciting, unprecedented opportunity to participate in research. For example, online health communities are increasingly being used as a source of data for medical research, particularly among poorly understood diseases[8]. Self-experimentation among patients as a valid research approach is also becoming more widely accepted[9]. Patient participation in research, which was previously quite difficult and impractical, is an exciting new avenue for researchers, and technology is now playing an important role in facilitating such patient engagement in research.

In particular, mobile health, (also known as mHealth) is using mobile technology to improve the lives of patients and the wellbeing of the general population[10],[11]. While the idea of using mobile technology to deliver medical care and public health information has been around for some time, new initiatives are making it much easier for patients to engage in research. For example, Apple’s Researchkit, a framework that helps developers build research apps, is being used to study several disease including asthma and diabetes[12]. We’re excited to use this type of technology to engage endo patients in research to better understand the disease. We can see from our survey just how much endo affects your life, so it’s important more than ever for researchers and patients to work together to try to end this disease.

How do I Stay in Touch with Citizen Endo?

You can visit our website citizenendo.org, send us an email at citizenendo@columbia.edu, follow @citizen_endo on twitter, or join our Facebook group.

References

1. Nnoaham KE, Hummelshoj L, Webster P, et al. Impact of endometriosis on quality of life and work productivity: a multicenter study across ten countries. Fertil Steril 2011;96:366–73.e8. doi:10.1016/j.fertnstert.2011.05.090
2. Simoens S, Dunselman G, Dirksen C, et al. The burden of endometriosis: costs and quality of life of women with endometriosis and treated in referral centres. Hum Reprod 2012;27:1292–9. doi:10.1093/humrep/des073
3. Denny, Elaine. “Women’s Experience of Endometriosis.” Journal of Advanced Nursing 46, no. 6 (June 1, 2004): 641–48. doi:10.1111/j.1365–2648.2004.03055.x.
4. “Endometriosis-Associated Dyspareunia: The Impact on Women’s Lives — Denny and Mann 33 (3): 189 — Journal of Family Planning and Reproductive Health Care.” Accessed August 12, 2016. http://jfprhc.bmj.com/content/33/3/189.short.
5. Cox, Helen, Lorraine Henderson, Natalie Andersen, Glenda Cagliarini, and Chantal Ski. “Focus Group Study of Endometriosis: Struggle, Loss and the Medical Merry-Go-Round.” International Journal of Nursing Practice 9, no. 1 (February 1, 2003): 2–9. doi:10.1046/j.1440–172X.2003.00396.x.
6. Seear, Kate. The Makings of a Modern Epidemic: Endometriosis, Gender and Politics. Routledge, 2016.
7. Rogers, Peter A. W., Thomas M. D’Hooghe, Asgerally Fazleabas, Caroline E. Gargett, Linda C. Giudice, Grant W. Montgomery, Luk Rombauts, Lois A. Salamonsen, and Krina T. Zondervan. “Priorities for Endometriosis Research: Recommendations From an International Consensus Workshop.” Reproductive Sciences, February 5, 2009. doi:10.1177/1933719108330568.
8. Frydman, Gilles J. “Patient-Driven Research: Rich Opportunities and Real Risks.” Journal of Participatory Medicine 0, no. 0 (October 16, 2009). http://ojs.jopm.org/index.php/jpm/article/view/28.
9. Ahrens, Sean. “Opening (and Swallowing) A Can of Worms to Treat My Crohn’s Disease.” The American Journal of Gastroenterology 111, no. 7 (July 2016): 918–20. doi:10.1038/ajg.2016.193.
10. Heerden, Alastair van, Mark Tomlinson, and Leslie Swartz. “Point of Care in Your Pocket: A Research Agenda for the Field of M-Health.” Bulletin of the World Health Organization 90, no. 5 (May 2012): 393–94. doi:10.2471/BLT.11.099788.
11. Klasnja, Predrag, and Wanda Pratt. “Healthcare in the Pocket: Mapping the Space of Mobile-Phone Health Interventions.” Journal of Biomedical Informatics 45, no. 1 (February 2012): 184–98. doi:10.1016/j.jbi.2011.08.017.

12. ResearchKit and CareKit.” Apple. Accessed August 12, 2016. http://www.apple.com/researchkit/.