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Caitlin McDonough (She/Her/Hers)

State: Massachusetts

Chronic Conditions: Endometriosis, Adenomyosis, Interstitial Cystitis, Cushing's Disease

I first learned that not every individual has extreme pain, fatigue and black outs during their periods when I was 16 years old. I was diagnosed surgically with Endometriosis at 17, and over the next few years was also diagnosed with Adenomyosis, Interstitial Cystitis and related conditions. I had to medically withdraw from college a few weeks in due to a severe pain flare. I didn’t feel prepared for what my life may look like, and how these conditions may impact my future. I quickly learned that I needed to be my own advocate. I found so much support and information through peer-led Facebook groups. I have also been diagnosed with Cyclical Cushing's Disease and Ovarian torsion, which even further empowered me to speak up about what I was going through after very traumatic experiences and missed diagnoses.

Living with pelvic pain has been an incredibly isolating and frustrating experience. My story is not unique; there are countless other individuals impacted by Adenomyosis and other pelvic pain conditions. I found a community through social media, where I also learned more about my disease than any prior doctor visit I attended. I was frustrated by my own experiences, and the lack of support available. I felt empowered to share my story to combat the stigma of pelvic pain and normalize how many deal with invisible illnesses. I have been writing in an online journal since I was in middle school, and it has been incredibly healing. I decided that I was tired of hiding my true identity and compromising my own needs to comfort others. There is no shame in talking about pelvic pain and invisible illness.

Stigma is one of the leading barriers to accessing healthcare. Stigma in the doctor’s office contributes to misdiagnosis, misinformation and suffering. I wanted to create a safe space online committed to sharing accurate information, dispelling myths and connecting with others.