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Endometriosis is a fairly common condition that affects about 1 in 10 women of reproductive age. However, it’s still not well understood by the medical community. There is no known cause and no cure for the condition, and not everyone will experience the same symptoms and levels of pain. A positive way to cope with endometriosis is via social support, including online support groups.
Support groups, whether in person or online, can offer a host of benefits for people living with chronic conditions like endometriosis. These groups provide a way for people dealing with the same condition to find emotional support, share their stories, ask questions, and feel less isolated.
“I feel blessed to have an online support group, which is better than no one at all. Friends and family can be good support, but if they’re not going through something, they don’t completely understand it,” wrote a member of MyEndometriosisTeam.
If you have endometriosis, you are not alone. People living with endometriosis have found benefits from online groups, resource sharing, and discussion forums. This article lists some of the pros and cons of online support, existing groups, and resources.
Online support for endometriosis can be found in groups on the internet or on social media platforms. Some groups are geared toward people who want to share their stories, read other peoples’ experiences, and offer mutual support. Others are led by medical professionals who provide health care resources and answer medical questions about life with endometriosis.
Online support for people living with chronic conditions has been gaining popularity as people spend more time on the internet and social media. Support online offers several advantages over in-person support. It may be more convenient, more accessible, and less costly compared to in-person support groups.
The onset of the COVID-19 pandemic has also contributed to the increase of online support, as many in-person support groups transitioned their forums and meetings to virtual gatherings while it wasn’t safe to meet face-to-face.
Online support for people with endometriosis offers many potential benefits. It presents the opportunity to learn more about endometriosis, understand other people’s experiences, and be part of a community of people who understand you and your daily life with endometriosis.
One member of MyEndometriosisTeam wrote, “I have learned so much from my online support groups. I am so thankful for them. Hindsight being what it is, I wish the online groups were available when I was first diagnosed with endo.”
Research into online support groups for people with endometriosis has found several possible benefits to using these groups. A study from the Journal of Medical Internet Research of 69 women who had been using online endometriosis support groups found the benefits included:
The study found that women who participated in online support groups felt reassured and validated in their experiences. It also found that women showed improved coping skills from engaging in support groups.
According to the Mayo Clinic, support groups offer benefits to members like feeling less isolated, gaining a sense of empowerment, and learning about more resources, tools, and treatment options for coping with a given condition.
One member of MyEndometriosisTeam commented how they had reduced feelings of isolation from being in the support group: “It is kind of comforting to know that we aren’t fighting this alone, even though I wouldn’t wish this on anyone. That at least there are others out there.”
Online support groups may be better suited for people with a diagnosis like endometriosis because the condition causes severe, sometimes chronic pain, which may limit mobility and the capability to travel to in-person support groups. Online communities offer more flexible participation from the comfort of your home.
The use of online support groups is largely positive — however, there are still some risks to consider.
First, remember that online support groups are not a replacement for medical advice. Do not try any suggested medications or treatments before consulting your health care providers or a medical professional. Medications or supplements that work for some people may not work for others, and they may pose risks depending on your health status and the medications you take.
With online support groups, for endometriosis or any health condition, there may also be concerns about the accuracy of shared information. The information presented may not be fact-checked or verified by medical experts, so the presence of disinformation on discussion forums is possible. As with any online group, you cannot control the behavior of other members. Some people may write inappropriate or disrespectful comments or use the group to promote a product.
Other risks include an overreliance on the online group, which could cause isolation from family and friends. There is also the possibility of becoming emotionally invested to the point of getting upset about other people’s negative experiences. As with any online experience, there may be concerns about the confidentiality of your private information.
If you’re interested in finding online support or joining an online support group for endometriosis, ask your doctor or specialist if they know of any resources. You can also consult endometriosis-focused nonprofit organizations like the Endometriosis Foundation of America.
If you want to learn more about resources and support groups for endometriosis, here are some suggestions:
Groups like the Endometriosis Partnership provide a list of online support groups, and Endometriosis.org provides a list of national endometriosis organizations by country.
Joining an online support group and sharing your experience with others can be intimidating. Online support groups are not for everyone, but if you are interested in joining one, focus on the potential benefits.
The Mayo Clinic suggests that when first joining an online support group, take some time to listen to and read other people’s stories. Over time, if you feel more comfortable, you may be inspired to share yours.
If you join a support group and don’t like it or don’t feel like you’re getting what you were looking for, take a break from it. Reevaluate what kind of support you are seeking, and maybe join a different type of group or a gathering on a different platform.
Most online support groups are free, and other members will understand if something is not the right fit for you. If you prefer to meet with other people face-to-face, certain endometriosis nonprofits offer local support groups.
On MyEndometriosisTeam, the social network for people with endometriosis and their loved ones, more than 126,000 members come together to ask questions, give advice, and share their stories with others who understand life with endometriosis.
Are you part of an online support group for endometriosis? What benefits do you get from it? Share your experience in the comments below, or start a conversation by posting on your Activities page.
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Dan Martin, M.D. is the scientific and medical director of the Endometriosis Foundation of America. Learn more about him here.
Elizabeth Wartella, M.P.H. is an Associate Editor at MyHealthTeam. She holds a Master's in Public Health from Columbia University and is passionate about spreading accurate, evidence-based health information. Learn more about her here.
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