Dorcas Obayemi is a force to be reckoned with. The well-rounded entrepreneur has dipped her toes in a little bit of everything, from marketing to blogging to podcasting and content creation across social media channels. Her drive and passion truly had me in awe, but what’s most inspiring about Dorcas? Her vulnerability and willingness to share her story around her experience getting diagnosed with endometriosis.
Obayemi began experiencing severe symptoms because of her menstrual cycle in her mid-teens, but she didn’t get diagnosed with endometriosis for nearly 15 years, which is particularly shocking when you take into account that those symptoms include passing out in public, vomiting and even going to the ER because of period pain. “Unfortunately the more time that goes by, the more pain you’re in and the more your life is disrupted,” she tells me.
@slicedotca Thank you for sharing your story @dorcasola 💖 #endometriosis #endometriosisawareness #endobody ♬ Simplicity – Jon Steinmeier
Why does it take so long to get diagnosed with endometriosis?
“It’s long, and I think that it’s really important to note that – as I’ve learned – the process of diagnosing endometriosis is not linear. It took several years. I’ve learned that on average it takes some women 7-plus years. It took me almost 15 years to get a diagnosis, but my first instance where I was like ‘This seems to be something that needs to be handled with a doctor’ was in my mid-teens.”
“I had just been getting so much pain when I was on my period that it became unbearable. I was always told that you get cramps, you go through pain and you pop an Advil and sit down and you’ll be okay. I just started to feel like that wasn’t the same experience other people were having and that my experience seemed a bit more aggressive and painful than others.”
Part of that lengthy process of getting diagnosed was because she was bounced from doctor to doctor and tested out nearly every possible method of mitigating her symptoms before reaching a diagnosis.
I got my diagnosis in a little bit of an unconventional way, which I didn’t know was possible
“It began with a journey of talking to my family doctor, and he then pushed me to talk to some other physicians who were more specialized in the reproductive, gynecological space. Through that I was put on several different types of pain management systems. I had been put on hormonal birth control to really stop my period, in a sense, and help stop my symptoms. I then went the naturopathic route and decided to get off hormonal birth control, which took another several years.”
Getting her diagnosis
But – despite experiencing severe chronic pain for the better part of her life – Obayemi only got diagnosed this year.
“To officially diagnose endometriosis, doctors say they need to perform a laparoscopic surgery to view the pelvic cavity and to actually see those endometrium cells outside of the uterus … I got my diagnosis in a little bit of an unconventional way, which I didn’t know was possible, but I had gone in for an ultrasound leading up to another surgery I had, and they had actually seen that the endometriosis had entered my ovaries, so that is a sign that you likely have endometriosis once it’s impacted the ovaries.”
Seeking healthcare as a woman of colour
Navigating the medical system is difficult as it is, especially as a woman seeking reproductive help — and even more so as a woman of colour. When I asked Dorcas if she felt that her race and gender made the lengthy diagnosis even longer she said, “100 per cent.”
And that’s when I started mentally making the shift of ‘I’m going to get in the driver’s seat.’
“I think there is a common misconception that women of colour have a higher pain threshold, so I felt – not felt – I often, when having conversations with doctors, was told ‘It’s normal. Many people have bad periods. You just have a bad period. It’s okay.’ For many years I was just dismissed. I was told to take a Tylenol, lie down, have an Advil. The hard thing is, because these symptoms came when I was so young, I didn’t have the language or even the life experiences to realize I could push back. I often thought that, in this case, that the authority knew best and if they were telling me that I couldn’t handle the pain, then it simply was the fact that I needed to be tougher, not that there was something larger going on.”
Obayemi internalized this idea that she wasn’t strong enough and couldn’t keep up with her peers. She felt that, if doctors were saying she needed to be tougher, then it must have meant that she just couldn’t handle it.
“For several years I just kind of fought through and just knew that I worked my life around that specific week and if I couldn’t do something or had to miss school, I would. The more I started to grow older and gain life experiences and started to do research, I realized that there are other things that this could be. And that’s when I started mentally making the shift of ‘I’m going to get in the driver’s seat.’”
Dorcas takes the lead
And that’s exactly what she did. Dorcas took the reigns and did her own research, came to her own conclusions and brought those thoughts to doctors to ask if they agreed.
“I would do my research and I would go to the doctor with my thoughts and my questions and my opinions and say ‘I’ve seen this. Do you think this is a possibility for me? Are there any tests that we could do to rule out that this is a possibility for me? What are the other options?’”
As the owner of this body I had to really be like ‘What do I need and how can I make my life better?’
She even decided to switch physicians so that she could find someone who could listen to and understand her perspective.
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“My family doctor now is a Black woman, which was very intentional for me. I found a person that would listen to me, that understood my life experiences and was willing to be a partner in my health journey. Prior to that, that was not the case.”
In the face of adversity, another way that she was able to get her diagnosis was through community care and understanding.
“The referral that got me to where I am today is because I talked to other people in the community who were experiencing pain,” she adds. “They shared their references of doctors they have worked with who they found were wonderful and accepting and actually were listening and I took it to my family doctor and said ‘I need to see this specific doctor.’ … I had to go print out, get that referral and do that for myself. So I’ve learned that I have to be the biggest advocate for myself … As the owner of this body I had to really be like ‘What do I need and how can I make my life better?’ Because at that point, it was literally ruining my life.”
How to advocate for yourself to your doctors
On Obayemi’s podcast, Lessons She Learned, which is “all about the life lessons that [she’s] learned along the way,” she did an episode about doing her own research and teaching her listeners to advocate for themselves.
“In no way is everyone a doctor nor do I ever want to play a doctor,” she prefaced. “My team of physicians that I have right now is absolutely wonderful. I am so thankful for them that I always make sure to do research prior. If I’m feeling something I make sure that I am writing that down, so I became really diligent with tracking my cycle and tracking each day where I experience pain because with endometriosis, sometimes you’re feeling pain outside of your menstrual cycle … Every appointment I went in with ‘This is what happened over the course of X amount of months.’ [Be] diligent with tracking your symptoms, tracking your pain, tracking anything and coming to your appointments with your notes, with your questions, with your research and [don’t be] afraid to push. You have time with that person – with that doctor or physician – push for what you need.”
Obayemi wants to remind you that “it is okay to ask for a second opinion” and that you can always find solace in sharing your struggles with the people around you.
“Another thing that helped me greatly was finding people in this community who also had endo or other symptoms that could give me advice, give me pointers. I could then take that to my doctor and say ‘Is this a path that we could explore? Is this an option for me? Have you considered this?’”
The entire process had an impact on Dorcas’ mental health
The lengthy diagnosis took a toll on Obayemi, not only physically, but also mentally.
“I’m going to touch on the mental stuff first because that’s the stuff that I ignored for a long time. I didn’t realize how much my physical symptoms and also the experience moving through the medical system with trying to constantly fight was affecting me mentally. I started therapy for a totally different reason and as we started to talk about this I realized how much was there and how much baggage I had been picking up. “
There’s so many people that have a uterus on this planet. Why are we making this such a hush-hush thing?
Being told time and time again that she wasn’t strong enough to withstand her period pain started playing out in other facets of her life.
“When talking to my therapist, a lot that came up was around that feeling of not being strong enough, of not being adequate, of feeling like it was my fault. It was really, really huge, and started playing out in other areas of my life, because that was the messaging that I was told and I thought that maybe I just couldn’t hack it. So I started thinking, ‘Well, maybe I have to work harder. Maybe I have to be stronger.’ A lot of those negative thought patterns were building out in other areas of life, like, ‘You can’t change it so just grit down and deal with it.’ Sometimes that is not the right answer. So a large part of managing this was, mentally, making sure I had the right support system in place.”
Part of that mental toll came from being silenced. “There’s a lot of taboo around women’s bodies and women’s reproductive organs where I’m like — literally there’s so many people that have a uterus on this planet. Why are we making this such a hush-hush thing? And I realized that people feel shame. I felt shame.”
Obayemi experienced this taboo around her endometriosis on a much deeper level.
“So I am a childhood immigrant. I’m Nigerian and talking about health issues – let alone issues surrounding reproduction – is not something that is done or often wanted or encouraged. There’s definitely a lot of stigma, at least speaking from my upbringing and culture, around fertility and endo is tied to fertility as well.”
Dorcas decides to leave shame behind
One day, Obayemi decided that she was done with feeling ashamed over her struggle with endometriosis.
If this is my life and the life of many other people who have endometriosis, we’re going to make sure that it’s normal.
“I am not going to be ashamed of this,” she said. “I am not going to hide from this. I am going to talk about this on a platform and invite people to come and share their story. It was really important for my journey but I’ve also realized how important it’s been for others in the community to hear stories like this and to find people who can also be a part of their journey as well.”
“I think, for me, it just got to the point where I was like, ‘I’m sick of it.’ … I’m not pushing it and censoring it for others anymore, which is another reason why I talk about it so much across my social channels. If this is my life and the life of many other people who have endometriosis, we’re going to make sure that it’s normal. It’s not something that’s a dirty secret. You probably know somebody who’s dealing with this as well. The shift to being vulnerable, honestly, wasn’t even intentional. It was more so from the fact that I’m not living this way anymore. I’ve literally gone through so much already that if you don’t want to hear about it, I don’t care. You’re going to hear about it.”