Keywords: Endometriosis, patient participation, online communities.
Citation: De Bronkart D, Anonymous. An e-patient awakening: endometriosis. J Participat Med. 2015 Jul 1; 7:e11.
Published: July 1, 2015.
Competing Interests: The authors have declared that no competing interests exist.
After my first laparoscopy, I was diagnosed with advanced (Stage III) endometriosis. Prior to surgery, I thought I was doing the right thing: I knew surgery was the only way to be diagnosed and I had suffered far too long to not know what was going on with my body. At the time, however, I was more concerned with what to expect as a patient during the surgery and postoperatively rather than the actual mechanics of how the surgery was being conducted. It didn’t occur to me that there might be different surgical approaches to the treatment of endometriosis, and I trusted that my gynecologist knew what he was doing.
But this all changed after my surgery when I made a number of discoveries online. Two of these discoveries were:
1) In my province, there is a center that specializes in the treatment of endometriosis.
2) Excision is considered the “gold standard” of treatment.
1) In my province, there is a center that specializes in the treatment of endometriosis
I only found out about this specialized center because it was mentioned in online communities. Since I believed I was getting the appropriate level of care from a specialist, it hadn’t occurred to me to investigate whether a center like this existed. I couldn’t believe that no one on my medical team mentioned this to me, especially since I had a suspected diagnosis of endometriosis.
2) Excision is considered the “gold standard” of treatment
I first heard of excision from a couple of sources including a YouTube video, Ending Endometriosis, and from several online communities.
In the video, excision was discussed, including an explanation about why it is more beneficial than simply burning off the endometriosis lesions. Upon hearing this information, I had an initial sense of panic. I felt sick to my stomach. Had I just gone through the terrifying process of surgery only to find out the treatment I received wasn’t the best option available? My heart almost stopped when I obtained a copy of my surgical report from my family doctor only to see the word, “cauterize” and not ‘excision’.
Furthermore, as I read about excision through online groups for endometriosis, I was becoming more convinced than ever that the treatment I received was not adequate.
With this new information, I returned to see my surgeon after experiencing concerning symptoms
During this meeting, I asked about excision. I was told excision wouldn’t really help me and the endometriosis would just come back; instead, the gynecologist recommended that I take a medication. He said that, if I didn’t take this medication, my endometriosis would continue to get worse. He also said my pain may never go away. When I mentioned the specialized treatment center, he told me the doctor would just prescribe the same treatment.
My interaction with the gynecologist didn’t feel right and didn’t sit well with me. Deep down I thought maybe he was wrong, but I wasn’t sure as I was just learning about endometriosis. Out of all of my health problems, I have felt the least informed about this condition. Having a person in authority tell me that excision wouldn’t help made me question myself. Was he right? Or was I right?
I dove further into the online communities, posting in ones I had previously joined, as well as new ones. The information I received from these communities reaffirmed my suspicions: he was wrong, I was right and my best shot at improvement was excision. I cancelled my next appointment with this gynecologist and have not been back since. I made an appointment at the specialist center and am now awaiting a date to undergo excision surgery.
Through participating in online communities, it has become very clear that my experiences are not unique and many women are given information from general gynecologists that may not be equipped with the appropriate knowledge or training to adequately treat the disease; unfortunately, this lack of training results in women being trapped in a revolving surgical door. If I could go back in time with the knowledge I have now, I would never have had the surgery that cauterized my endometriosis. In fact, over the past year, I have felt worse, not better, as a result of this experience. While the future is uncertain for my own endometriosis, I know I have a couple communities where I can find information.
Lessons from this experience:
- Use online communities as a source of education, but be aware not all communities are created equal in terms of the quality of information. Two communities I have found very helpful include EndoMetropolis and Nancy’s Nook.
- It’s OK to walk away. I’ll admit, I’m a people pleaser. This trait can be a hindrance in seeking appropriate medical care. After having the unfortunate interaction with my previous gynecologist, I was left wondering if I should have another follow up with him. When I raised this issue online, members pointed out there wouldn’t be any sense in following up with this gynecologist. This feedback helped me make the decision not to follow up. And I have to say, I’m glad I didn’t.
- The doctor isn’t always right. Sometimes patients may have more information about a condition than the doctor. Yes, it is possible you may have information the doctor doesn’t. If the doctor dismisses you, as did mine, that may be an indication it’s time to find someone else who is willing to work with you in partnership.
- Trust your gut. If something doesn’t feel right, it probably isn’t.
EndoMetropolis. Available at: https://www.facebook.com/groups/endometropolis/. Accessed June 17, 2015.
Nancy’s Nook Endometriosis Education and Discussion Group. Available at: https://www.facebook.com/groups/418136991574617/. Accessed June 17, 2015.
The Endometriosis Network Canada. Available at: https://www.facebook.com/groups/TheEndoNetwork/. Accessed June 17, 2015.
Redwine DB. Endopaedia. Available at: http://endopaedia.info/. Accessed June 17, 2015.
Hoyt R. Ending Endometriosis – A Documentary [Video]. Available at: https://www.youtube.com/watch?v=81dpitSGKNA. Accessed June 17, 2015.
Copyright: © 2015 Dave De Bronkart and Anonymous. Published here under license by The Journal of Participatory Medicine. Copyright for this article is retained by the author, with first publication rights granted to the Journal of Participatory Medicine. All journal content, except where otherwise noted, is licensed under a Creative Commons Attribution 3.0 License. By virtue of their appearance in this open-access journal, articles are free to use, with proper attribution, in educational and other non-commercial settings.