Endometriosis and Instagram activism - with Krystal Rodriguez

By Nikki Michelsen

Oct 3, 2022

Endometriosis and Instagram activism - with Krystal Rodriguez
Krystal Rodriguez is an Instagram influencer (@iamtherodzilla) and activist using her platform to raise awareness about issues from climate change to social justice. She was recently diagnosed with Endometriosis and Adenomyosis, after a long battle with painful and irregular periods and not knowing what, if anything, was ‘wrong’. We had a chat about her illness, her difficulties in getting a diagnosis and how she, inspired by celebrities with even larger audiences, has decided to use her platform to spread awareness of an illness that is rarely talked about, despite affecting an estimated 1 in 10 women in the UK.
Firstly I’d just like to ask how you’re recovering post-surgery?
Thanks for asking! I feel good. A lot better than I expected. The hardest bit was staying put and recognising that even though the operation was keyhole, I needed to allow my body to rest and recover, because it was a big deal. It’s been two weeks and I went for my check up yesterday and my surgeon had to explain to me that I’ll still be having residual side effects from surgery, like being tired. One thing is for certain, it’s not been as painful as a normal period.
It was really brave to make a post like the pre-surgery selfie you took (banging btw – I reckon you win the hospital-gown-selfie game) knowing it would be reaching thousands of people. What inspired you to make the post?
Haha, I felt really excited when I took that picture. I am super squeamish and I was so nervous leading up to it I could barely speak to anyone that morning. Then I got to my room and felt pumped full of adrenalin. I think we are all aware of how often girls are baring it all for the gram, so I thought fuck it I’ll show some skin to get attention for a good cause.
I really debated whether or not to post. I didn’t want people to feel sorry for me or seem attention-seeking. The main reason I got checked was because my friend shared a story with me about her finding out she needed surgery and that pushed me to get myself checked. I never expected to need an operation myself, so I thought I’d see if anyone else needed a nudge.
What kind of responses did you get from it? Were you pleased to have the opportunity to engage with your followers about something so crucial?
Pleased is really an understatement. Instagram is a funny place these days, it’s filled with people trying to sell you things, or making you feel envious of their clothes, their body, holidays. I’ve been guilty of posting things I know will get likes, instead of the things I really want to post. I really wasn’t sure what the reaction would be, but the messages made me feel so comforted. Some people thanked me and told me I pushed them to book in scans, some people had some helpful tips, stories of their own, and some people really seemed just happy to have someone to relate to. I never realised how isolating the way I was feeling was, but it felt like I had the support of a really important community behind me for the rest of this journey and I want to support everyone back.
Had you previously used your platform to call attention to issues like this or is it something you’ve just decided to do recently? Do you feel any differently about how you use your platform since receiving such feedback from the post?
I have done a few things in the past. I was incredibly unhappy with Trump’s election so I sold a bunch of my things on depop and gave the money to charities most affected by his presidency. I used Instagram to let people know I was collecting donations for Grenfell and I also used it raise awareness of a charity night I organised for StreekLink. It can be such a handy tool, but I do see my numbers drop when I veer off the normal posts, which I guess defeats the purpose if you’re trying to get people to engage. It can be a bit deflating, especially when you are trying to do a good thing. There’s a blogger I follow @mommasgonecity, she gained loads of followers for posting cute pictures of her kids and her dogs, whenever she posts anything political she gets so much abuse. People say ‘we follow you for cute pictures not your political views’. It’s like they have reduced who she is as a human being to just “cute pictures”, I really admire her perseverance. No matter how small the impact I make is, as long as I have a voice I’ll always try to do what I can. If you’re not into it there’s plenty other accounts in the sea.
I’d like to chat to you about your experience getting diagnosed with Endometriosis – it’s got one of the worst diagnostic records, as you mentioned in your post caption, and, anecdotally speaking, women are gaslighted and disbelieved about the pain they’re experiencing at shocking rates when they’re actually suffering from debilitating pain. Was that your experience? How long did the diagnostic process take once you finally pushed yourself to seek help? Was it very frightening or was it a relief to be able to put a name to something?
I’ve not had a very straight forward journey. My periods have never been normal. I finally got diagnosed with PCOS when I was in my early 20s and was given numerous different pills (which never worked) to regulate it. A lot of the symptoms are interchangeable – pain, bloating, heavy periods probably contributing to why it’s so hard to diagnose. I went for a few scans over the years – it was once even speculated that I may have womb cancer. Around this time last year the pain became different to what I’d known from “normal” periods and would sometimes occur after my period had finished. It took me ages to act on it, but I finally booked another scan this August. This was such an unpleasant experience. I arrived for my scan at my local hospital, when the specialist told me to sit on the chair. We didn’t have stirrups so she pulled up a green garden chair and told me to put my legs on either arm – that lawn chair is forever ingrained in my brain.
We take our bodies for granted, we just expect things to be functioning.
Already feeling emotional, uncomfortable and vulnerable, I became panicked when she started to ask me if I have had kids, she said she needed to ask because my womb was “very irregular”. Everything she said from then on didn’t matter; I was in a flood of tears. I think back to that day, how upset I was, and don’t know if I overreacted. Some people say it didn’t sound like she had great bedside manner, some people say they would have been the same if they were told something was wrong with their body.
Even though I booked a scan in the first place because something was wrong, I didn’t ever consider the magnitude of what “wrong” could mean. She told me to wait for my GP to get back to me with the results. By that point I was fairly inconsolable. I obviously then spent hours on google looking up womb irregularities and jumping to every conclusion from cancer to infertility.
We take out bodies for granted – we just expect things to be functioning. I haven’t felt an urge to have children, but I expect it all just to be in working order when I need it. If you feel like that option may be taken away from you, you start to spiral. I realised that night that a lot of people have to have very harsh realities and truths and maybe I was going to be one of those people.
I needed to know what the deal was and to speed up the process I booked a private Gynecologist. I feel extremely grateful to be in a position to even have this as an option. I’d gone from green lawn chair to a Harley street palace. [The new doctor] sat with me, listened to my symptoms and warned me that it sounded like I had endometriosis before he had even performed the scan. He told me that, if this was the case, he sees a lot of women and it’s the most common thing he sees and we would be able to deal with it easily enough.
He diagnosed me there and then. I’ll never forget when he said “you must be in a lot of pain” , the floodgates opened again. This time because someone finally understood what I was going through. Confusing, as the person validating my suffering was someone who’d never even had a period let alone could know what the pain feels like. Nevertheless, I was so appreciative. He told me that I was likely stage 3 and I would need surgery, but everything else was fine, no signs of cancer or infertility. It was a walk in the park from there on out. He gave me some available dates, told me what to do to claim on insurance, and it was booked. I was relieved to be healthy all thing considering, not dying and most of all to be proactively taking steps in the right direction.
You mention in your post that Lena Dunham was a big factor in inspiring you to ‘go public about something so private’. I hope you realise your post will be having very similar effects on many of the thousands of women who follow you – inspiring them to feel less ashamed of their bodies and its fallabilities and scared of exposing their vulnerabilities to the world. Was it this post specifically that inspired you or her frank, open attitude towards sharing herself and her so-called ‘flaws’ more broadly? Are there any other people in the public eye that you’ve found raising awareness of Endometriosis, Adenomyosis, or similar issues who have inspired or helped you?
Yep, that’s the one. So a while ago, I remember reading about her hysterectomy and thinking ‘oh poor girl, she has endometriosis’. I’d heard how painful it was for some women and felt sorry she needed to have a hysterectomy. I had no idea I was suffering from the same thing. I just assumed her pain would be worse, and felt lucky I didn’t have anything ‘that’ bad. It’s so weird to not understand how bad is bad. When did I think it was appropriate to seek help? How bad did it need to be?
By the point this picture went up, I was booked in for my operation and I realised how naive I’d been and how we were actually suffering from the same thing. That’s probably my main motive in posting [the photo], because sometimes you need something to trigger you into being reactive.
Do you think raising awareness of the illness and fostering conversations around these typically ‘taboo’ topics is enough to change the terrible diagnostic rates and spark a change in the number of doctors believing women, or do you think more direct action is needed?
Absolutely, I think this part of a much larger issues. In the UK and other developed nations we have been privileged enough to have access to health care so I’m super aware about moaning about not getting care because I am a woman when some people don’t get care at all.
Yet, it’s real issue. I’ve started to read a lot about women’s pain. There are so many things to take into account, from race to even how attractive you are. Some statistics show that doctors are more likely to a believe someone they find unattractive is suffering than someone they think is attractive. Doctor’s also have different opinions or interpretations of your symptoms and don’t always agree. So basically, it’s all subjective and finding the doctor you’re compatible with is like dating until you find your soulmate.
Ultimately, I feel responsible for myself. I allowed myself to suffer when I knew something was wrong and I ignored it. My surgeon said it’s so common in women. We just try and manage – maybe it’s instinctive. So really I think we need to change something within ourselves to speak up, not be ashamed and to encourage others to do the same.
Even in being asked to do this interview I feel guilty, because I think my case isn’t as bad as some others and really that’s something I need to get over because that mentality got me nowhere.
If we think it’s taboo here imagine in places like Nepal where women are told stay in a shed when they are on their period. I can only imagine, if they’re needing to use newspaper and bits of rubbish instead of sanitary products, how far from being diagnosed or relieved of pain these women are. If given the opportunity, I would love to advocate for those women.
And, finally, is there one last thing you’d like people reading this to take away from your experience?
As I lay in my bed post-op my doc came to see me to debrief. He was telling me how happy he was he was that I did the surgery, and that I didn’t damage anything. That really resonated with me. He suspects the endometriosis had been building up for the last 3 years. What could have been if I left it longer? So if there’s one thing to take away its to listen to your body. Only you really know what you’re feeling and you have to trust your instincts and try to push for the care you need. The more open you are about this situation you’ll find you’re not alone and won’t have to suffer as much.
Thank you so much to Krystal for being such a delight to talk to and for drawing attention to such a serious, yet often overlooked, issue.
Ohne Team
Photo by Anna Shvets from Pexels