Living with PCOS and Endometriosis: Aimee’s Inspiring Story

This is not intended to provide medical advice. The interview has been edited for clarity and length. Please consult your doctor for any health-related concerns..

Aimee Esther has faced a unique journey living with multiple chronic illnesses, including polycystic ovary syndrome (PCOS) and endometriosis. Her experiences navigating painful symptoms, fertility challenges, miscarriage, and chronic illness, all while maintaining hope and joy, offer insight into the resilience required to manage these conditions. In her own words, Aimee shares how she has persevered through the ups and downs of living with these chronic illnesses.

Aimee’s PCOS and Endometriosis Journey Begins

Aimee’s health challenges began early, though it took some time before she understood what was happening to her body. She recalls, “I didn't know anything about PCOS until I was probably 22 or 23, but I started having symptoms of both since I started puberty. I think I was around 15 years old, and from the beginning, I had very painful periods.”

"I didn’t know that you could get out of bed if you were in that much pain."

Despite the pain, Aimee initially assumed that her experience was normal. “I didn't understand that it wasn't normal at first because everybody talked about having cramps and how awful periods were,” she explains. “I remember being in school once in high school, and a friend of mine said, 'I just started my period today and I'm just having cramps.' I was shocked that she was at school. That blew my mind because I didn’t know that you could get out of bed if you were in that much pain.”

Aimee’s periods were much more severe than what her peers seemed to experience. “I would typically be curled up in a ball, crying. I would go through a pad and a tampon in an hour. It was super heavy, super painful, and it was impossible to do anything. I couldn’t work, I couldn’t go to school when I was on my period, especially the first three days.”

Seeking Answers: Initial Diagnosis and Treatment

As her symptoms became more difficult to manage, Aimee sought help. “That’s when I told my parents, ‘I think I need to go to the doctor for this.’ So I went to see an OB-GYN, and of course, the first thing they did was put me on birth control.”

Unfortunately, birth control didn’t help Aimee’s symptoms. “It actually made my periods worse. At the time, I didn’t realize that they weren’t normal length. I thought they were longer than they should have been, but they were so awful when they would come. I didn’t realize that they weren’t coming as often as they should, which is more of a symptom of the PCOS.”

"I just dealt with it. I knew that when my period started, I was out."

After trying different birth control options without success, Aimee was left feeling defeated. “They didn’t work for me. They made it worse, they made me depressed, so I decided to just live with it. They told me it’s probably endometriosis, and I could get surgery for it, but we may as well wait till I’m ready to have kids because it will just come back.”

Coping with Pain: Life Before Surgery

For years, Aimee lived with the pain of her undiagnosed endometriosis. “I just dealt with it. I knew that when my period started, I was out. They did give me muscle relaxers, which did help, but I would burn my skin with heating pads. It was a really horrible experience.”

As time passed, Aimee began to experience more symptoms related to other chronic illnesses, including Ehlers-Danlos syndrome (EDS) and Postural Orthostatic Tachycardia Syndrome (POTS). "I started to get other symptoms of my other chronic illnesses… fatigue and aches. So I thought, maybe it’s the endometriosis."

Endometriosis Excision Surgery: Searching for Relief

After getting married and considering starting a family, Aimee decided to undergo excision surgery to address her endometriosis. "We did decide, ‘Let’s just get the surgery and see what happens.’ So I did end up getting the endometriosis surgery. I did have endometriosis, and they said they cleaned it up. It would probably come back."

“He said that I had ruptured an ovarian cyst, and what we guessed is that I was probably rupturing cysts nearly every time I had a period.”

However, the surgery didn’t provide the relief Aimee had hoped for. “I thought, ‘Maybe I’ll start having kids now,’ but after I had that surgery, I thought, ‘Okay, my next period, I’m not going to have pain like I have been.’ I was so excited, and then my period came, and I was in just as much pain. But instead of it being everywhere, it was in one spot.”

At her follow-up appointment, her doctor gave Aimee harrowing news. “He said that I had ruptured an ovarian cyst, and what we guessed is that I was probably rupturing cysts nearly every time I had a period.”

Ovarian Cysts Experience

The discovery of the ovarian cysts led Aimee’s doctors to explore the possibility of PCOS. “After I got the endometriosis surgery, I had a cyst rupture every single month until I was on Clomid to get pregnant with my baby.”

Her doctor explained that her body was likely trying to ovulate but instead created cysts that would rupture. “He guessed that my body was trying to ovulate, and instead, it would create a cyst and then it would rupture. So this is a long story. I'm very good at keeping it short,” Aimee says.

Fertility Challenges and Clomid for PCOS

Getting pregnant with PCOS was another challenge for Aimee. After her initial surgery, she hoped to conceive, but her body had other plans. “We started looking at PCOS as well. That first ultrasound when I ruptured the first cyst, he saw that I had polycystic ovaries.”

In addition to ovarian cysts, Aimee experienced other common PCOS symptoms, including difficulty losing weight. “I had struggled to lose weight my whole life. I was very active, I would eat super healthy, and I wouldn’t change my weight.”

Aimee’s doctor prescribed Clomid, a fertility drug commonly used for women with PCOS to help with ovulation. "He helped me with fertility drugs, and I’m really grateful because I think it makes a huge difference to have a doctor who not only understands these conditions but listens to what you're saying."

Miscarriage and Heartbreak

Aimee’s first pregnancy ended in a miscarriage, an experience that deeply affected her. "I was so mentally and physically exhausted. When I got pregnant the first time, I thought, ‘This is the light at the end of the tunnel.’ But when that ended, my whole world crashed down.”

“I knew something was wrong. I was bleeding, and at the same time as miscarrying, I ruptured two ovarian cysts. It was extremely painful.”

Miscarriage is a known risk for women with PCOS due to hormonal imbalances, and Aimee struggled with the emotional toll it took on her. “I knew something was wrong. I was bleeding, and at the same time as miscarrying, I ruptured two ovarian cysts. It was extremely painful.”

Her second miscarriage, which occurred a year after her first daughter was born, brought a different perspective. “The second miscarriage, I was more grateful for the moments I had with that baby. I was so sad and had to do a lot of healing."

Managing Chronic Illness and Daily Life

Living with multiple chronic illnesses has shaped Aimee’s daily life in many ways. “I wear compression socks every day to help with circulation. If I don’t wear them, I can’t get out of bed.”

Aimee also deals with fatigue, dizziness, and migraines regularly due to her POTS and EDS. "I get dizzy if I stand too long. I have to sit in the shower, and even doing simple things like taking my kids to the park wipes me out for days.”

Despite these challenges, Aimee has found ways to manage her symptoms and has built a supportive community online. "I share my journey through my YouTube channel," says Aimee.

Living with PCOS and Endometriosis

Through her health struggles, Aimee has learned that healing comes not just from medical treatments but from emotional support and self-advocacy. "After my hysterectomy, I didn’t have to deal with endometriosis pain anymore. That was a huge blessing, and I’ve been able to focus on managing my other conditions."

"If something doesn’t feel right, push for answers.”

Her experiences with doctors have also taught her the importance of advocating for herself. "You need to stand up for yourself, even when doctors tell you otherwise. If something doesn’t feel right, push for answers.”

Aimee’s journey is a testament to perseverance, hope, and the strength of the human spirit. While chronic illness continues to be a part of her life, she has learned to find meaning and purpose through the pain. “It’s a rollercoaster, but you’re always trending upward, even when you’re in a low point. You just have to keep climbing out of those low points, and you’ll come out stronger.”