Endometriosis is a female reproductive disorder that affects nearly 10% of women worldwide. There is not a cure for it, and the only treatment options available are different types of birth control. Many women do not receive a formal endometriosis diagnosis until they find themselves struggling with infertility. Even in this modern world we live in, women still face a stigma surrounding their periods and sexual health– even when their reproductive health is perfectly fine. This stigma makes it hard for women with debilitating periods and pelvic pain to go to their doctors and advocate for their health. Fortunately, organizations like SpeakENDO provide resources for women who have or suspect they have endometriosis.
I have talked in the past about my own experiences regarding my health, my debilitating periods, and my struggle with birth control, but this time I interviewed two of my fellow Her Campus KSU collegiates who battle female reproductive pain. I’m very fortunate to have had the opportunity to interview these girls; this was one of my first ways to break the stigma surrounding female pain and advocate for girls who have endometriosis.
First, I interviewed Brynna, a member of the Her Campus social media team at Kent State to learn more about her story. We met in person and had a conversation about endometriosis and what SpeakENDO means to her.
Her Campus: To start off, can you say your name and a little bit about you?
Brynna Sexton: My name is Brynna Sexton. I am a fashion merchandising major with a double minor in fashion media and business, and I am from Southern Ohio.
HC: Can you describe what endometriosis is?
BS: It is a disease where every time you get a period, your uterus attaches to another part of your body. It’s very painful and it causes a lot of problems, like extreme cramping. My main thing is that I do not stop my period without medication; without it, I would never stop. It affects every woman differently, it just depends.
HC: How were you diagnosed?
BS: First, I started [my period] in fourth grade, which is very early to start and abnormal. Then in sixth grade, I had to go to the emergency room for my period not stopping, then I was then put on birth control. It went on from there. I showed different symptoms: severe cramping and not stopping the bleeding. There was also a weird symptom about your legs hurting on your period, and just other various problems I’ve had down the line. I’ve been on pretty much every form of birth control besides the ring and the implant in your arm. Mainly my problem is that the birth control would work for a while and then my body would adapt to it, and it would quit working, so I’d have to change.
HC: What were your symptoms?
BS: Intense bleeding and cramping. I had an MRI done because of my headaches. My endometriosis is genetic, it’s passed down through my mother’s side. My mother, at my age, had a pituitary tumor which causes your hormones to be regulated incorrectly. The doctors thought I might have one, so I had an MRI, but I turned out to be okay. I have had extreme bleeding, and I have bled through various products and left school countless times because I bled through my clothes, I even once bled onto a school chair. I really just outgrow birth control and never stop bleeding.
HC: So you’ve been on birth control since sixth grade, right?
BS: Yes, I’ve never been off of it.
HC: Do you worry about what would happen if you decide to go off it?
BS: I do. My mother took seven years to have me, which is already alarming. For her to do that and not be on birth control for as long as I have been, where does that put me?
HC: Do you worry about your hormones and what would happen if you were off of it?
BS: Very much. My OB-GYN and I have talked about going cold turkey for a while, but it is still so bad while on birth control that it’s really unreasonable.
HC: Does it stop you from doing things you like to do?
BS: Yes. A lot of the time I cannot go out because I will have pain. I can be walking to class, and I will get a severe, sharp pain, and I’ll have to sit down; it could literally be in the middle of nowhere, and I’ll have to sit down on the ground. It’s very debilitating. As strong as they are, you can’t move.
HC: Was there any question about how you were diagnosed? Did they look at you right away and say that you probably have endometriosis or did it take a while?
BS: I had been going to the doctor since about fourth grade, but I hadn’t been examined at that age. But with my symptoms and my family history, I was diagnosed in sixth grade.
HC: Have your emotions been affected by it, or is it just physical?
BS: It has definitely affected my emotions. My mother says I am crazy! And right now, I have a hormonal IUD. The goal for me right now is to stop having a period altogether, because that’s how [endometriosis] spreads, and we’re trying to cut that off. Well, the IUD has been successful at staying in my body, but it hasn’t been successful with stopping my period. Due to that, my emotions have been everywhere, crazy, and not predictable. [The birth control] is unpredictable, it all depends on how my body reacts to it. And clearly, my body is starting to reject it.
HC: Is every month different?
BS: Yes, very.
HC: Do you use a period tracking app? And that doesn’t work?
BS: Yes and no.
HC: Do you have advice for other girls who are going through this?
BS: Honestly, just talk to your doctor. I think it’s more about figuring out what’s best for you. The reason I love SpeakENDO so much is because there’s really not an actual treatment besides birth control for it right now, and I know they’re doing studies to find a medication to help this and to maybe even eventually cure it. Right now, on the track we are, it still leads to infertility and various other problems.
HC: It is very common; it affects 1 in every 10 women.
BS: Most people don’t know. I think that’s why SpeakENDO is so important.
HC: Do you think SpeakENDO brings awareness?
BS: Yes, definitely.
HC: So right now, you’re treating it with an IUD. Have you tried different pills?
BS: Yes, various. 95% of them made me throw up which is a bad side effect. I had the patch which was okay, it was more about just trying to keep it on–it’s just not the best. I had the shot, and I had horrible side effects– I had joint pain and severe bloating. Don’t do the shot!
HC: Did your doctors believe your pain right away?
BS: No. My mother’s OB-GYN is the head of the office there, and [my mother] has had various problems since she was 19: she had various surgeries, she had one ovary taken out after my birth, and she had a full hysterectomy even though she’s only 48. But [my mother’s OBGYN] knows that her body is crazy. I go to a different OB-GYN specializing in young women, and it’s still taking a while to get [my OBGYN] to understand that it’s not normal.
HC: Did you go through any surgeries?
BS: No, I have not. If my IUD does not work this time–and it’s starting to not work– I will have to have surgery and go through the burning process.
HC: You know about how the endometrial tissue tends to grow back and everything. Would you still commit to going to get surgeries?
BS: Yes. Since this is my last option to help control it and suppress it, I really have no other option.
HC: Would you consider getting a full hysterectomy?
BS: At this age, no. Later on, definitely. I honestly see it in my future. Probably if I have one or two kids, right after that I would get a hysterectomy.
HC: So it took you 2 years to get a diagnosis?
BS: Yes.
HC: Do you want to be an advocate?
BS: Yes, I feel like everyone telling their story is important because they’re all different. Endometriosis affects everyone differently. I think that sharing and caring is important.
HC: What upsets you the most about endometriosis?
BS: How debilitating it is, but also how you can’t see it unless they physically cut open your body. I’m still trying to convince my doctor to listen to me. She isn’t the original one who diagnosed me.
HC: Have you had any lifestyle changes you’ve had to implement?
BS: I have to take a specific pain prescription pretty regularly, which isn’t necessarily good for you. And like I said, I miss out on stuff.
HC: Have you met other people who have had experiences like yours?
BS: Surprisingly no. I haven’t met anyone who had my problems– a lot of the people I went to high school with was like “why are you in pain?” and “why are you complaining?”
HC: Since most women don’t get diagnosed until they’ve reached the infertility phase, do you think you’ll meet more women who have it over time? Does it scare you that some people go through life without knowing they have endometriosis?
BS: Definitely. I know that the treatments I receive help me so much more, and if these women don’t know they have endometriosis then I can’t imagine their pain.
HC: Is there anything else you want to discuss?
BS: There’s a new product called My Livia, it works with electrodes to help reduce pain. I haven’t tried it, but I want to, and I think it’s amazing that they came up with something like that. I think that by the time we’re 50 we’ll have more figured out because a lot of it is still unknown. I think the future looks bright.
After my interview with Brynna, I interviewed a writer for the Her Campus Kent State editorial team via email to anonymously discuss her experiences regarding female health.
Her Campus: Can you start off by telling me a little bit about yourself?
Anonymous: I am a sophomore at KSU studying public relations with minors in early intervention and Spanish. I absolutely love writing and hearing other people’s stories, which is why I am studying abroad in Spain this summer. My career goal is to perform public relations for a non-profit organization that is dedicated to advocating for disabled students and populations. In my free time, I dog-sit service dogs in training with 4 Paws for Ability and volunteer with special needs children.
HC: What is your condition?
AN: I am in the stages of being diagnosed, which, I think, puts me in a strange place with the whole diagnosis. So while it isn’t an official diagnosis, it’s been extremely challenging to gather multiple doctors’ point of views and understand what’s actually happening with my body. I’ve heard doctors say that I am just experiencing regular cramping pains and that I may have ovarian cysts; however, endometriosis aligns perfectly with all of the symptoms I have experienced.
HC: What are your symptoms?
AN: The symptoms of endometriosis that I’ve experienced include excessive bleeding and extremely painful periods, lower back and pelvic pain, extreme pain with intercourse, as well as excessive fatigue, bloating and nausea during periods. These symptoms are something that I can no longer ignore, and the pain is at a point where, in the past, I have been screaming in pain before.
HC: When did it start, and how did you get diagnosed?
AN: I started to notice symptoms when I was about sixteen. I had my first period when I was sixteen, which doctors already noted was strange. My primary doctor, at the time, told me that I had a hormonal imbalance and did a lot of blood work to analyze my hormone levels. Once my periods began, the bleeding was so excessive that I would end up bleeding through about 7 barriers that were made for the regular girl on her period (tampon, pad, underwear, pajamas, two mattress sheets, mattress). At this point, my doctor put me on the birth control pill in efforts to reduce the severe bleeding, but my experience with cramping had just begun. I would go to school in the morning on Midol and sometimes have to rush to the bathroom because I was afraid of throwing up, to which point I had to leave school early many days. I was hoping that this was only a problem that I would experience with periods, and not with other parts of my life as well, but when I was 17 I started to notice more symptoms.
When I was 17, I was in my first real long-term relationship and eventually my (now ex) boyfriend, and I tried to have sex. At this point, I had changed birth control methods to an implant form of birth control.
Without any exaggeration, the pain during sex was the worst pain that I have experienced to this day. It was a burning pain that would last a very long time and basically caused my whole body to stop moving because I was afraid of doing the wrong thing and getting more hurt. My boyfriend at the time was extremely worried and all I could do was cry and close my eyes while it was happening. I was torn between wanting things to get better and being so embarrassed of my own body. We continued to try to have sex and each time I just began to get filled with more fear. I would tell my friends what I was going through and they often said “Well don’t worry that just happens the first few times,” but I had begun to notice that that was simply not the case for me.
I was very in love at the time in this relationship, and to hear all my friends talk about their stories and hear how amazing it was for them basically made me feel like I wasn’t good enough, and made me worried for the future.
HC: What treatments have you tried?
AN: I was so embarrassed about my whole situation that I waited to seek help from a doctor for about six months after it had all occurred. By that time, my boyfriend and I had broken up, but I was very nervous about if something could’ve been wrong with me, considering all the pain I had experienced with regular periods as well. I went to a gynecologist by myself, which was scary considering I knew I couldn’t tell my mom about what I was experiencing since I didn’t want her to look at me differently.
The doctor had to make sure that my uterus wasn’t tipped (it wasn’t) and told me that “maybe it was just my brain making me scared.” She continued to ask how my relationship was like, how many times I tried, and explained the importance of foreplay. I described the burning pain I had to her and rated it on a scale of 1 to 10.
She sent me off with a few pelvic exercises to do, which I still try to do to this day, but she never fully addressed if my birth control implant was affecting me, or what my extreme period pain meant.
HC: How are you currently treating it?
AN: At this point, my implant has made my periods completely stop altogether. I haven’t experienced the excessive bleeding in a while because I haven’t had a period to experience that. With that being said, I still have extreme cramping around the normal time of the month that I would’ve had my period. I use Midol to treat them, but if I’m being honest, I try not to think about the pain I’ve experienced. I am often reminded of the symptoms I have had when my friends bring up sex and how great it is for them, but it hurts a lot to think about.
HC: What advice do you have for other girls who are having similar symptoms?
AN: My advice for girls who are experiencing the symptoms of endometriosis and are unsure about what to do would be to seek guidance from whoever it may be that they trust the most. I think a lot of girls actually have experienced endometriosis and they, like me at times, are afraid to say anything about it at all. Going to your best friend who will not judge you or simply tell you it will “get better with time” is probably your best bet. If they truly care about you, I am sure they would suggest you seek professional medical help.
HC: What do organizations like SpeakENDO mean to you?
AN: To me, organizations like SpeakENDO mean that girls don’t have to be alone in this. I’ve felt alone with my own experience for so long, but to know that there’s an organization and campaign out there that seeks to educate girls about their symptoms is a huge step in the right direction. I think what girls really need is to feel supported and heard, which unfortunately is something that is very hard to feel when you have endometriosis because doctors and friends would easily like to say that it is something else that is affecting you (usually something less serious than endometriosis), but the only person who knows their own body is the person who is living in it every day.
Check out SpeakENDO.com to find more resources on endometriosis and how to get involved with the organization.