Talking Adenomyosis with Caitlin from The Adeno Project
by Caitlin McDonough
As we come towards the end of Adenomyosis Awareness Month, it’s important we continue to use the awareness and momentum we have gathered during this month to continue advocating for those affected by this condition. Like QENDO, Caitlin McDonough is committed to adeno awareness and advocacy. Caitlin is founder of The Adeno Project, an online space committed to sharing accurate information on all things adenomyosis, as well as dispelling the many myths surrounding the illness. Through this work Caitlin aims to destigmatize pelvic pain and launch a toolkit for others to utilise for education and support. Though based in the USA, The Adeno Project has become a familiar online friend for many of us in the adenomyosis community worldwide, and at QENDO we’re so excited to bring you this blog from Caitlin for the end of April for Adeno.
I first learned that not every individual has extreme pain, fatigue and black outs during their periods when I was 16 years old. The Pediatrician that I saw mentioned that I likely had Endometriosis and there was a specialist that could help me. By age 17, I had my first laparoscopy and was officially diagnosed. The surgeon reassured me that as long as I stayed on continuous birth control, which suppressed my periods, I would be fine to move on with my life as originally planned. However, my pain did not improve post-operatively. It was then that my pelvic pain crept into all areas of my life. I had to medically withdraw from college just a few weeks in. The campus health center reassured me that I was making the best decision, as there were little supports available to people in my situation. I felt so isolated and shamed by what was happening to my body. These were supposed to be the best years of my life, but I was stuck in bed with no real plan for relief. It would take several more years and countless specialists before I learned of the word Adenomyosis. The first time that I read about Adenomyoiss was in an online support group after experiencing extreme pain from intercourse that I was told was not from my pelvis, as I was still suppressing my periods with birth control. After googling Adenomyosis, I quickly realized that this disease had little to no information at the time. It felt like a grim diagnosis.
My story is not unique; there are countless other individuals impacted by Adenomyosis and other pelvic pain conditions. Adenomyosis is not rare, just rarely spoken about. It’s clear how ignored Adenomyosis is when you realize that the online dictionary (Google, IOS etc.) does not recognize it as a real word and underlines red. One of the most difficult aspects of living with pelvic pain is the stigma that accompanies it. From a young age, we’re taught that those topics are not something you should share with anyone else. The impact that stigma has had on diagnoses such as Adenomyosis is clear through the lack of accurate information and support for folks impacted. The National Institute of Health (NIH) in the United States has allocated zero federal research dollars annually for Adenomyosis (NIH, 2021). This has directly impacted the delay in diagnosis, limited specialists, lack of FDA-approved treatment options and limited understanding surrounding this condition.
There are countless myths surrounding Adenomyosis; one being that this disease does not affect teenagers or young adults. In recent years it has been believed to be a disease that affects individuals in their late reproductive and premenopausal years. Due to improvements in tools such as imaging technology, researchers have learned that Adenomyosis affects younger individuals (Protopapas, A. et al, 2021). Yet still, there is so much unknown. It can be a difficult diagnosis due to the fact that it can co-exist with similar conditions such as Endometriosis. The diagnostic criteria also is not agreed upon universally and provider education varies, complicating the diagnosis even further (Chapron et al, 2020). There is a spectrum of how Adenomyosis may present; some may have symptoms while others may be asymptomatic. This adds to the challenges, especially given that this diagnosis may co-exist with Endometriosis for some (Struble et al., 2016)
The first time I brought up my concerns to my doctor, she shared that she was not at all familiar with Adenomyosis, and that I was too young to have it. Despite Adenomyosis being considered a “sibling disease” to Endometriosis; not all Endometriosis specialists are educated on or equipped to handle Adenomyosis (Protopapas, A. et al, 2021). My symptoms were quickly escalating and impacting all areas of my life. I was 21 years old and could not tolerate wearing any tight clothing due to how bloated and painful to the touch my pelvis was. Another specialist recommended that I become pregnant to ‘help my painful symptoms’ merely a minute after I had shared how painful intercourse was for me. I was not being heard. I turned to that original Endometriosis support group for help, and was met with endless support. The support that did not exist within those white walls of each specialist’s office. I was told that there were a few specialists in other states that were familiar with Adenomyosis. Access to care is a large barrier for many individuals. Often that will include traveling to another state, paying out of pocket for all expenses and taking a significant chunk of time off of work. Many cannot afford to access specialty care that is not within their local community.
Adenomyosis is incredibly isolating for many, especially with limited access to quality care. The impact of Adenomyosis The online community has been there for me every step of the way. As I had mentioned, a peer support group is how I learned of Adenomyosis. I felt heard, validated and supported for the first time since I was diagnosed. While many in my personal life could not understand, the online community provided me with so much information and support. I felt empowered to use my experiences to help normalize how common these conditions are, and support others. I was tired of the pressure of staying quiet about what I was going through. It impacted every aspect of my life, so why wasn’t I able to speak about this? I created The Adeno Project in 2020 to provide awareness, accurate information and support surrounding Adenomyosis. It was something I had wanted to do six years prior, when I received my MRI results showing Adenomyosis. I did not feel that I was ready at the time but one day I realized I will likely never feel ready. I was tired of seeing Adenomyosis excluded from this discussion and the lack of support for people like me. I wanted to help others like those support groups helped me.
Sources
Chapron C, Vannuccini S, Santulli P, Abrão MS, Carmona F, Fraser IS, Gordts S, Guo SW, Just PA, Noël JC, Pistofidis G, Van den Bosch T, Petraglia F. Diagnosing adenomyosis: an integrated clinical and imaging approach. Hum Reprod Update. 2020 Apr 15;26(3):392-411. doi: 10.1093/humupd/dmz049. PMID: 32097456.
National Institute of Health, 2021 https://report.nih.gov/funding/categorical-spending/rcdc
Protopapas, A., Grimbizis, G., Athanasiou, S., & Loutradis, D. (2020). Adenomyosis: Disease, uterine aging process leading to symptoms, or both?. Facts, views & vision in ObGyn, 12(2), 91–104.
Struble J, Reid S, Bedaiwy MA. Adenomyosis: A Clinical Review of a Challenging Gynecologic Condition. J Minim Invasive Gynecol. 2016 Feb 1;23(2):164-85. doi: 10.1016/j.jmig.2015.09.018. Epub 2015 Sep 30. PMID: 26427702.
Vannuccini S, Petraglia F. Recent advances in understanding and managing adenomyosis. F1000Res. 2019 Mar 13;8:F1000 Faculty Rev-283. doi: 10.12688/f1000research.17242.1. PMID: 30918629; PMCID: PMC6419978.
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