Remove Nancy Petersen From Endometriosis Documentary
Remove Nancy Petersen From Endometriosis Documentary
Why this petition matters
The creator of the film EndoWhat has made another documentary, directed by Hillary Clinton, about endometriosis and the social justice issues associated with it.
This would be a great way to gain awareness, however, EndoWhat’s social media page has shared that “so many people are collaborating on this project to ensure its accuracy, its honesty, its power” with an attached list of collaborators. On that list is Nancy Petersen, the creator of Nancy’s Nook Endometriosis Education.
Nancy’s Nook has proven to be a toxic, biased, and non-inclusive environment. In addition, Nancy is not well-educated about endometriosis; her information is outdated and/or incorrect.
We are asking that the creators of this movie redact any pieces of information provided by Nancy Petersen, as well as David Redwine.
Nancy bans and blocks members of her Facebook group who provide any negative feedback on the doctors she recommends. This creates a very biased environment; essentially an echo-chamber. Nancy is actively silencing the voices of people who struggle with endometriosis. In addition, she has accused members of her group of being “lazy” and not “taking [their] health seriously enough” for not being able to shell out tons of money to travel out of state or even country to see one of her recommended doctors, many of which don’t take insurance.
Nancy also posts a lot about endometriosis on her personal Twitter and Facebook pages, but her information is incorrect, outdated, and taken out of context. Her and David Redwine claim that his patients are 100% cured of endometriosis after receiving his “expert excision” surgery. There is no cure for endometriosis; excision is simply the gold standard in treating it. The reason Redwine’s “cure rates” are so high may be that he abandons his patients. Many former patients of David Redwine’s- and of other doctors endorsed by Nancy Petersen- have reported their doctor dropping them as patients and refusing to see them after their operations. In doing so, any possible post-op complications are not documented by that patient’s initial surgeon, so it is not reflected in their success rates.
Neither Redwine nor Petersen are currently practicing medical professionals, and they haven’t been for a very long time. They simply have no business offering medical advice online. They have some very strong opinions about treating endometriosis, based on very stark dichotomies… “black and white opinions”. In reality, there aren’t black and white issues in medicine and health care. All bodies are different, and treatment plans need to be tailored to each patient.
Nancy and David’s online presences are appalling. Nancy is actively silencing endo voices and excluding people who need help. These are not people who should be given this platform. They should not be included in shaping the voice of this documentary. We are asking the creators to re-release the film after removing Nancy and David and the information provided by them, for the sake of all people with endometriosis, and for sake of the people who will be diagnosed or seeking a diagnosis in the future and will watch this film with naïve eyes, looking for accurate and inclusive information on the disease.
In conclusion, the main issues with Nancy and her online presence are, as follows:
- Her Facebook group Nancy's Nook Endometriosis Education has become toxic and non-inclusive
- She deletes posts made by worried endo patients asking medical questions, because they "are not a support group". If this is the case, the group should be a page, not a group. She leaves patients in the with no other resources, when they are often also abandoned by the doctors referred to them from her list.
- She deletes any posts with negative feedback about a doctor from the list, and takes no corrective action. She ignores every complaint and allegation, so, in turn, there are many questionable doctors on her list with very serious allegations against them, but there is no way for group members to know this, since the negative posts are deleted.
- She often posts passive-aggressively about group members after they have "broken a rule"
- She shares outdated and incorrect information about endometriosis online
- She has claimed that the true recurrence rate of endometriosis is around 10%. This is wildly untrue and there is no evidence to support this. The true regrowth rate is around 40%. (Inconclusive data, limited research). She pushes this narrative in the Facebook group as well. This leaves endo warriors very confused and disappointed when their endo, as it often does, grows back.
- She claims that David Redwine cures his patients of endometriosis. First of all, it is dangerous to publicly spread the myth that there is a cure for endo. We are all fighting for awareness to eventually get better treatment options and a cure. Seeing a public figure within the endo world claim that there is a cure could be so hurtful to the cause. This claim is also proven to be untrue because previous patients of Redwine- as well as patients of multiple doctor’s from Nancy’s list of ‘vetted surgeons’- have shared their experiences of 'patient abandonment'; After the doctor performs surgery on a patient, if they complain of post-op complications, he often refuses to see them. This preserves his success rate, which Nancy refers to as "cure rates"
- She ignores, silences, and even gaslights endo warriors
- She has not been a practicing medical professional for over a decade, but continues to give medical advice online. This is contradictory to her response often given when she is asked why she deletes peoples' posts and blocks them from the group: "we don't give medical advice".
I have attached photos of (anonymous) posts outlining the mistreatment found in Nancy’s Nook, among other issues and altercations involving Nancy. They can be viewed at the following links:
https://ibb.co/SRz0Wgz
https://ibb.co/jWK70cH
https://ibb.co/WWkBvvr
https://ibb.co/PhhKRjZ
https://ibb.co/q0BVQ3Y
https://ibb.co/SRxChyf
https://pubmed.ncbi.nlm.nih.gov/12923150/
https://omb.oregon.gov/Clients/ORMB/Public/VerificationDetails.aspx?EntityID=1472072