Thank you to Christina Hayse, Founder of Cosmic Lotus, for taking time out of her busy day to speak with our Health Reporter, Sofia Arrelano.
EndoMarch Headquarters (HQ): What were the first symptoms you experienced with Endo? How did your symptoms progress? Do you have classic endo symptoms or atypical? When did you first hear about endo and when did you think you may have it? How long did it take you to get diagnosed? What is the hardest part about your Endo?
Christina Hayse (CH): The first noticeable symptoms I experienced was pelvic pain. I had pelvic pain growing up, quite often. Usually when I was engaging in physical activity such as physical education or when I was practicing or in a game for one of the few sports teams I had decided to try out (basketball and volleyball).
I refused to run the ‘mile run’ in high school for fear of the pain. I hadn’t, at that point, connected the pain to an actual issue – I assumed I was just out of shape (mind you, I was about 110 lbs, ate pretty healthy, and walked everywhere. I wasn’t really as out of shape as I led myself to believe). It wasn’t until I was about 18 years old (I am 26 now) that I began to have irregular periods, it would be two weeks late and extremely heavy. It was alarming to me because I never had an issue with my period before. I started when I was 12, it was always light, no cramping, and right on schedule. When my periods first started becoming irregular, the cramping began – which like I said, I never experienced before.
Over the next about 6 months, it got worse and not just during my period, it would hit me out of seemingly nowhere. One day, I woke up with an extremely painful UTI – the kind where you can’t even walk. I tried to push passed it because I had work that morning. I got about an hour in, and I had to call my boyfriend to get me from work and taking me to urgent care because there was no way I was going to be able to continue trying to work. I was put on antibiotics and sent on my way. About a month later, it felt as if I was still having residual pain from the UTI, so I made a doctor’s appointment with my family doctor. They ran a bunch of ultrasounds, performed a pap smear, took blood and urine samples. They couldn’t find anything wrong.
Another month went by, and I was still having lingering pain and decided to go back to my doctor. Yet again, they ran a bunch of tests and sent me on my way. About a week later, my doctor called me after getting the results from my ultrasound. She told me that they couldn’t find the cause of pain, but that they did notice an abnormality on my ultrasound. The doctor continued to inform me that I had what is called a bicornuate uterus (meaning there is a division in the womb that makes conceiving or bearing children difficult). Since she was not a specialist in gynecology, she referred me to an OBGYN to discuss what this meant for me.
I met with the OBGYN a few weeks later, and not long into our conversation he asked me if I had ever heard of Endometriosis. I honestly don’t remember much from that day or that conversation, I was too freaked out over the words “possible surgery”. But the answer was no, I had definitely not heard of Endometriosis before that day. A little over a month later, I went in for surgery and came out with an official diagnosis of Endometriosis. The OBGYN deemed it “stage IV” because my right ovary was adhered to my colon, but other doctors have not agreed that it is as severe as stage IV (I don’t really believe in the staging system anyhow).
All in all, it only took a year from the moment that I thought something was really wrong, to when I got an official diagnosis. The hardest part about realizing and coming to terms with having Endo is knowing that it is going to be a lifelong battle. I didn’t realize that until after my second surgery. My symptoms now are definitely different from when I was first diagnosed with Endo. It started with the few classic symptoms of odd periods, and some pain. But I believe that after all of the procedures and hormonal treatments, I think I am just adding symptoms on top of symptoms now. Pain 24/7, ‘Endo Belly’ almost every day, weight gain, fevers, IBS symptoms, the list goes on…
HQ: What is your craziest doctors story? Either positive, negative, or neutral. Did you almost die from surgery or have you ever experienced severe adverse side effects from medications?
CH: I’ve had the typical experience with doctors. They don’t believe your pain unless you’re persistent enough to bug them into investigating it further. I’ve had doctors tell me that they don’t believe me because I don’t ‘look in enough pain’, or that it is probably some sort of an infection, or that I am just trying to get pain medication prescribed to me.
I’ve never had surgical complications, luckily. My last laparoscopic procedure could have gone worse than it did. I think I was just willing to do anything for the surgery to take place, I mean I waited two years for another doctor to be willing to perform another surgery. I am allergic to penicillin, which for those who aren’t aware, it is pretty much one of oldest and the strongest forms of antibiotics. During surgery they pump you full of antibiotics to protect you from infections. My surgeon decided (with my consent) he wanted to try this form of antibiotic that he described was a very distant relative to penicillin that he was hoping would not result in an allergic reaction (I wish I could remember the name of it). I had only tried plain old penicillin once in my life that I can remember, and it caused hives all over my body. And the others in the penicillin family usually had me unable to keep food or liquid down. I figured, that since it hadn’t put me in the ICU or proven to be anywhere near lethal for me that I would trust him and let him try it. After all, I was closely being monitored by doctors during the procedure anyway, it was probably the best time to do it. There weren’t any complications during the surgery, but I did wake up with rashes on my arms where the IV’s had been. Thinking back, I probably shouldn’t have been so okay with it and it should have been a giant red flag. But you do what you can to find relief, right?
HQ: The birth control pill or other synthetic hormone contraceptives are often prescribed as a first treatment for those with endometriosis. Have you had different hormonal treatments? If so what was your experience?
CH: Oh gosh, hormone treatments are not my friend. I wasn’t sexually active until 18, I didn’t take birth control before that because I didn’t feel the need for it. I also didn’t have acne or other skin issues that it is normally prescribed for. After I became sexually active I picked up birth control from my doctor, I was on it for a month and hated it. It made me so cranky and irritable, and I broke out with acne, so I stopped it. It wasn’t until after my first procedure and diagnosis that I tried any hormonal treatments again. My OBGYN, who had performed the surgery, recommended that I try luprolide acetate (Lupron) which puts your cycle on hold and pretty much puts you in a controlled menopause for 6 months. That was no picnic, the hot flashes, night sweats, and weight gain was almost unbearable – not to mention that it didn’t help one bit with the pain.
After luprolide acetate, I was put on the birth control shot, Depo-Provera. Which was a little more bearable, I was just as irritable as the pill had made me and it also did nothing for the pain. I have sworn off of hormonal treatments. Although, I did have to take 3 months of the birth control pill before a procedure when a polyp was found in my uterus about two years back, but it also gave me 3 months of a non-stop period. So that only increased my dislike for hormone drugs.
HQ: The opioid crisis is at an all time high and very prevalent in the news. As a chronic pain sufferer, what is your opinion on the use and reported abuse of opioids? Do you think the crackdown on opioids should pertain to those with Endometriosis, why or why not? If you had chance to speak on Capitol Hill to lawmakers about this issue, what would you say? If not opioids, what alternative therapies do you think women with endo need to be informed about and that need more attention?
CH: The opioid crisis really hits home for me. Addiction runs in my family, whether it is prescription pills, alcohol, or non-prescription drugs. I can see why there is a worry for abuse, it is so easy to fall into it and it is even easier to underestimate your tolerance. I personally choose not to take pain medication unless I absolutely need it. I have Tramadol or Tylenol #3 for those days. I prefer cannabis, sometimes ibuprofen and/or over the counter Tylenol, and other natural remedies for everyday use.
Even though, it honestly would not be an affect on me if opioids were no longer prescribed, I know that there are a lot of people with chronic illnesses that rely on opioids to be able to do their jobs that support their families. I do not believe it is fair to punish those who are trying to live a normal life by taking a drug away that is effective, and one they are taking responsibly. There is a big problem with pill shaming in our society right now, and it is being caused by this movement to end opioid use. It is hard for those who do not live in constant pain to understand the need for these medications. They don’t understand how over the counter Tylenol or Advil doesn’t help the pain. I mean, I was just pill shamed the other day for having to take over the recommended dosage amount of extra-strength Tylenol, and that was just generic Tylenol!
Cannabis and CBD oil have been lifesavers for me. I had tried cannabis a couple times before using it for chronic pain. I was about 22 or 23. I wasn’t a fan in the beginning, I was never a smoker, and did not like smoking cannabis. Then I found edibles. It was the only thing that completely took my pain away. The only problem is finding a good dosage as a beginner, one where you can still function as a human being and aren’t stuck on a couch all day. Eventually I decided to move on to vaping. The edibles, while are amazing for taking away pain, are easy to over-do and take awhile to kick in. Vaping gets to the pain quicker and I can control the “high” better. Once I started learning more about cannabis, I found CBD oil. THC is the part of cannabis that gives the “high”, but CBD is the pain reliever, has virtually no side effects, and does not give a “high”. It is also great for inflammation, anxiety, and it has been known to help with seizures (I use it for my epileptic dog). CBD oil is actually legal in the United States, and you can usually find it at smoke or vape shops, as well as online. I highly recommend it if you haven’t given it a try.
HQ: What do you want people to know about Endo and being an Endo Sister?
CH: Endometriosis can be very isolating while at the same time you are on display. By that I mean, most of your family, friends, and co-workers do not understand the pain you are in, why you can’t commit to family gatherings, make plans, or show up to work every day. Yet when you are able to make an appearance, it feels like you are being watched by everyone in the room. Everyone trying to see how ‘sick’ you are, because it is not enough to believe your words, they need to see it. And if you don’t look sick to them, you’re pegged as lazy and the one who always has excuses. As if it isn’t bad enough to be in constant pain, you tend to lose family, friends, and jobs over the years. But we put on our brave faces and do what we can anyway.
That is why being an Endo Sister (or Person, for my trans Endo Family out there) is so amazing. The Endo community is filled with others who are going through the same things you are. The same pain, the same family issues, the same friend issues, dealing with doctors, etc. I have been lucky enough to chat with my fair share of the Endo community, and it is so encouraging to see how open and honest everyone is. Everyone is so supportive, caring, and will bend over backwards for another Endo Family member. While having this disease feels like it is the worst thing in the world at times, I would have never had the opportunity to connect with the people I have connected with and Cosmic Lotus would not exist. I wouldn’t trade that for anything.
HQ: Your brand, Cosmic Lotus fills up a space in the endometriosis community that was unprecedented before your creation of it. Can you tell us about the journey that inspired the creation of Cosmic Lotus and what your mission is for it?
CH: I am beyond flattered! Cosmic Lotus is definitely the thing I am most proud of in my life. Cosmic Lotus didn’t start as an awareness brand. I had been working for the County of Sacramento for the last 5 years, and honestly was not happy with it, but like most 25-year-olds, I had no idea what else I would be doing with my life. I quit school at 19 because I wanted more hours at work, and I wasn’t sure what I wanted to major in anyway. So with no degree, and my only work experience being in fast food or an entry level office position, I thought I was stuck.
After 2 laparoscopic ablation procedures that had only given me relief for short periods of time after each, I decided to try to learn more about Endometriosis. My husband found a few books online he thought I would like and ordered them for me. Two of which ended up being by the same author, who you may have heard of, Dr. Andrew Cook. I finished both books in a matter of days. For the first time, I finally felt like there was a doctor out there that understood what Endometriosis is, not just medically, but what it is physically and mentally for the patient. I also learned the difference between the procedures I had undergone, and the procedure Dr. Cook and few other doctors perform (that is really the gold -standard) which is excision. Ablation burns the Endometriosis lesions, which excision completely cuts out the lesions.
After discussing what I had learned with my husband, we decided to look up Dr. Cook online to see where he is located. We live in Elk Grove, CA (which is just outside of Sacramento), Dr. Cook works out of a private office in Los Gatos, CA. Which for those unfamiliar with Northern California, that is only a couple of hours away. I was so excited. I filled out his online form for a free record review. Within a day or two I received a call from his office. They had me give a brief overview of my history and told me that the next step would be an in-person consultation with Dr. Cook.
But then the bad news came, they did not accept my insurance provider and the cost of the consultation was a little over $700. My husband set-up a GoFundMe account to raise the money, and thanks to some very generous donations in just under two weeks, I was able to schedule my appointment with Dr. Cook. I was in his office a week and a half later. It was like meeting a celebrity, I was so excited! The consultation went amazing.
But again, bad news. The surgery would cost an upwards of $26,000. The next day at work, I was explaining my situation with a friend/co-worker who owned his own clothing brand along with working for the County of Sacramento. He gave me the idea of creating fundraiser shirts to help me save up the funds. I took it one step further. It was as if a lightbulb finally switched-on. What if I created my own brand, an Endometriosis Awareness Brand? I took the idea and ran with it, I spent that entire afternoon running back and forth to his desk brainstorming. It needed to be more than just about me, I am not the only one struggling to scrounge up the money for this procedure. I quit my job and put my full focus and energy into Cosmic Lotus.
My ultimate-goal would be to fund surgeries for others who are struggling to afford it. I decided 10% (for now) would go towards Endometriosis research. Hopefully, someday I can get that number higher. The research of Endometriosis is so key to helping our future Endo Family, so that they don’t have to jump over as many hurdles and so that doctors have better knowledge of the disease. At the end of each year, I will conduct a survey of the Endo community to decide which research group the funds should go to. With Cosmic Lotus, I want to give a voice and include as many as I can in the Endo community in everything I do.
HQ: Where would you like to see your brand in 5 years?
CH: It would be awesome if Cosmic Lotus could get as big as the Keep A Breast Foundation within the next 5 years. That is aiming pretty high, but I believe we can do it!
HQ: What is an insight or a piece of advice you wish someone would have told you when you first got diagnosed? Is there anything else you wish to say about endo, advocacy, awareness, or life in general?
CH: A piece of advice I wish I would have gotten would be to do your research before any procedure or treatment! Get a second opinion and reach out to others in the Endo community. If I had known about excision, I probably would have chosen to wait it out for the right doctor to do the right procedure (I also wouldn’t have gone through Lupron if I understood the side effects).
Awareness begins with a single person, that is all it takes. Someone willing to stand-up and say, “enough is enough, we need to be heard”, and others will follow. I am proud and so thankful for everyone who has taken this journey with me so far, I hope we can continue to take Cosmic Lotus and Endo Awareness even further.
