On living with Endometriosis
"Just keep on going. I know I'm going to have to live with it, so I can't just end life here and be like, no, you know? I have to keep on going."
You can learn about what exactly endometriosis is here.
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Symptoms
Marian: What are the symptoms of endometriosis that you've experienced?
Celia: A lot of pain, pain during menstruation, pelvic pain, back pain. My pain always consisted of being on the right side. Bloating, cramps, I felt really weak, I had a lot of fatigue. Even now if I feel the pain coming, my immune system tends to feel down. I just feel kind of sick, extremely tired.
My periods have been off the charts since being diagnosed with endometriosis. There have been times where it lasted 3 weeks, sometimes even going on 4 where I had to go to the doctor so they can give me other medication to stop it. They put me on birth control and it's been helping, but other than that I still have a little bit of pain. I sometimes get pain on my right shoulder. What I've also noticed having endometriosis is that I have a lot of joint pain, a loooot. But it's different for everyone.
Endometriosis hurts the most when I'm on my period. That's the point where it's like unbearable. And having your period for three weeks, plus the pain is like... it is just suffering.
Diagnosis
Marian: How was your experience being diagnosed?
Celia: When I first had my period around the eighth grade—I started it pretty late—it was a week-long, very heavy, painful, but I thought that was normal. Just like, okay, some people have it heavy, others light. And it just continued on like that throughout high school until 2016, around October.
I had a really bad pain on my right side that kept coming and coming, and it just got worse. They did a CT scan that showed a 4.7 cm cyst that had caused an immense amount of pain. Once it burst, I still had a lot of pain, and that's when I knew it was still a problem. I had to go seek out different doctors to find a solution.
Marian: What did they do to diagnose you?
Celia: The first thing that they did was the ultrasound to check if they were my kidneys because I had pain on my right located where the kidneys are, but they didn't find anything. So, they moved on to the CT scan to check if it was a cyst. And that's where it showed up: the little wall, 4.7 cm cyst. From there, they just sent me home and gave me pain medication and I just had to wait 'til it burst.
Marian: They couldn't do anything else about it?
Celia: No... I think the only way they surgically remove it is if it's bigger, but I guess since it was 4.7 cm they didn't want to. They just wanted me to wait until it burst.
Treatments
"Well, the first one he recommended was birth control"
Marian: Can you tell us about the different treatments you had to undergo?
Celia: Yeah... Well, the first one he recommended was birth control, or changing birth control, but once I started the birth control, my period lasted for like three weeks... and that was alarming and I went back.
So that's when they did the surgery to make sure; that's the way they diagnose it, through surgery. It's called a laparoscopy. They do little incisions, put a camera, take pictures.
So afterwards, he said [endometriosis was] what I had.
After that, he recommended this treatment called Lupron Depot which basically is a drug that puts you on temporary menopause. So you get hot flashes, feel dizzy, have night sweats. And I didn't really know that it's considered a chemotherapy drug which really make your bones weak. I had that injection for six months, once every month, that would cause a lot of pain in my bones. I couldn't even get up and walk because it just hurt so bad...
Marian and Lauren: *looks at one another in shock* ...oh my god.
Celia: *chuckles* yeah.
While I was on that six month treatment, my bones were hurting a lot. I started taking vitamins. Calcium. But it was just horrific pain.
The treatments for endometriosis are not the best, [they have side effects to them]. There's no cure. The other treatment that I'm on is called Femara which has been helping me cope with the pain. It's not as intense as the Lupron. I did notice that the Lupron Depot, even though I had to go through all the side effects and the bone pain, [helped with the] endometriosis pain. But it can always come back. That's why you have to keep trying different treatments and see what lasts. But the Lupron was definitely something that was horrible for me to try out. It's not really recommended to girls that are 18, 17, because to have to be going through that at a young age is really hard.
"They prescribed Norco all the time."
Marian: How was your experience with pain meds?
Celia: Um, it was... another roller coaster.
They prescribed Norco all the time. That's a really strong pain medication. I would take it because I had so much pain, but the medication would only last for a certain time. So it would be like the next night, having to take it. It got me really sick also. I got really nauseous, was throwing up, I couldn't eat very well. I lost, I wanna say... 15 pounds from just like, medication. So that was another roller coaster, I felt really low about my body and just, everything.
Marian: How old were you?
Celia: I was 17.
Medical Insurance
"If I had issues about my bladder or something, which can be related to endometriosis, he'd be like, no I can't help you with that or else they're going to charge."
Marian: Can you tell us about your experience with medical insurance?
Celia: The first doctor that I had gone to was a lot more private and it was really strict. I could only go in if it was related to endometriosis.
Marian: What kind of insurance did you have?
Celia: Medi-Cal.
If I had issues about my bladder or something, which can be related to endometriosis, he'd be like, no I can't help you with that or else they're going to charge. That's why I had to go to a different doctor, an OBGYN, so I can get the attention that I needed.
On many instances they would cut it off and they wouldn't even tell us. So I would show up to an appointment without even having insurance and I would need to get a study done... That's happened to me many times... they wouldn't even tell us that we had to pay and that's why they cut it off. And having to get the insurance back was like, fighting with the insurance people because they wouldn't even tell us. It would take a while to get it back and get the appointments and then get any treatments.
Body and Mind
Marian: What were your experiences with your body?
Celia: Around the time that I was barely getting diagnosed and had pain medications, my body image was really low because I looked sick. People tell me, YOU LOOK SICK. You know? So I felt really bad about myself, but um... after that I started gaining the weight a little bit more so I felt better. They put me on different treatments that did help but still had side effects to them. But I think the time that I was barely getting diagnosed was probably the worst time I could have gone through because seeing my body changing was kind of like, alarming... it was like a battle, basically.
Marian: How would your body affect your mental state?
Celia: I kept thinking that I was sick... I kept feeling sad, I felt weak, I felt like I wasn't the same anymore. It was just eating me up inside... I think that was probably the time I cried about it the most. I was trying to feel better, but I had a weak mind. A weak, feeble mind because of how I looked and how I felt.
The Self
Marian: How has your experience with endo shaped your personhood?
Celia: I think it's made me become more mature. [I started] listening to my body, definitely, and not taking no for an answer. Getting check ups regularly has also made me stronger. And fighting to have that awareness out there has made me grow up as a person, cause it's important to let people know that it's out there, to educate people, and to speak out about it, to not be ashamed. Let them know. Even doctors, talk to them about your period, and endometriosis as well.
Marian: How has having endo enriched your life and your character, your growth?
"It's important to let people know it's out there... to not be ashamed. Let them know."
Celia: I started off really low... I am religious, but I never asked, "why me?", you know? I just asked for strength, and I think that's something I got out of it. Just being strong, just keep on going. I know I'm gonna have to live with it, so I can't just end life here and be like, no, you know? I have to keep on going. It's definitely made me stronger. It's made me more determined. It's opened up a lot of opportunities like here, now, being able to talk about it and raising awareness. So I think that's how it's enriched my life. Like yeah it hurts. The endometriosis pain hurts. But being able to educate people about it and let them be aware so they can be diagnosed earlier is what's important to me.
Lifestyle
Marian: How does having endo affect your relationships, if it does?
Celia: My mom did not understand at all what was going on, but she tried to help me out as much as she could. She supported me, but she didn't understand what exactly it was.
Marian: And your academic or work life?
Celia: My senior year of high school [consisted of] absence most of the time. I had so much pain that I could not withstand being at school, sitting down, so that did affect my grades but I was able to catch up. I did miss a lot of school. It was really hard to just be there. I just wanted to be in bed all the time to kind of alleviate the pain. But I really tried hard to just keep up.
Even coming to Davis, having to be on the Lupron Depot shot, I had to miss class because of the pain... I just couldn't walk that much. So it has been affecting my life school-wise. But so far it has been getting a little better. It has shown me to be stronger, to just keep focusing on what's important to me because life keeps going on after it. You can't just stop and like, end everything... Just keep going, I just have to because school is what's gonna get me further in life. This is an obstacle right now, but I just try to keep going.
Advice
"Don't take no for an answer... Keep insisting... until you feel better."
Marian: What is a piece of advice you would give someone who may be experiencing endo?
Celia: Definitely to talk about it. Venting and talking about it, finding a close person to you and being able to talk about it, is something I would recommend. And to seek medical attention as well. If you feel like something's wrong, something's not right, talk about it, keep on going asking different doctors, don't take no for an answer. Keep insisting 'til you get diagnosed, until you feel better.
Also, try to find different coping mechanisms other than pain medication. Other than that, I think, really, to try as much to keep going on in life cause it does go on. Having endometriosis does not stop your life. It's an obstacle but, you know, get over it and just keep persevering.
Marian: What are some coping mechanisms you've developed for yourself?
Celia: Most of it has been trying to rest. I try to get away from pain medication. Just resting, doing a lot of stretching. When I can, I go to the gym but not do intense workouts. It's something that might help me feel better or even better about myself, better about my body... and going out with family as well. I try to distract myself and not focus on the pain. I just try to find more opportunities out in life. Even with school, it has been one of my focuses—it distracts me from the pain sometimes.
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