Did you know that March is Endometriosis Awareness Month? Do you even know what Endometriosis is? Well lucky for you this blog is here to tell you just that!
At Kitty With A Cupcake we are passionate about using our platform to spread awareness about topics important to us and ones we even have personal experience with. Emily, Kitty With A Cupcake’s founder and artist, has lived with Endometriosis for 20 years. She has recently helped Aubrielle, Kitty With A Cupcake’s Shipping Specialist, investigate their symptoms and self-diagnose. Read more about each of their experiences below!
Another way Kitty With A Cupcake helps spread awareness on topics like Endometriosis is through the Pride Pal Collection. The Accessibility Plaques serve as a nonverbal way of communicating what you’re dealing with. For instance, people can read the Endometriosis Plaque and easily know that this person has Endometriosis. Now let’s learn more about what Endometriosis actually is!
What is Endometriosis?
Endometriosis is a chronic condition where tissues similar to those found in the uterus grow outside of the uterine cavity often causing inflammation and other related symptoms.
Who is affected by Endometriosis?
Endometriosis mainly affects women and people assigned female at birth. Most people affected by Endo are in their reproductive years (12-52) but it can affect those in their youth as well.
What are the symptoms?
Symptoms include but are not limited to…
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Painful periods
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Long periods
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Heavy bleeding
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Bowel and urinary disorders
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Nausea and/or vomiting
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Pain during sexual activities
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Infertility
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Chronic fatigue.
I’ve never heard of Endometriosis, so it must be rare. Right?
Wrong! Endo affects 1 in 10 women and people assigned female at birth. That is only including people who have received a diagnosis. Which can take 7-10 years due to symptoms being dismissed or misunderstood. It does not always show up on ultrasounds or MRIs, leaving laparoscopic surgery the only definitive way to diagnose it currently.
What causes Endometriosis?
There is still research to be done to find out what causes Endo. Some studies suggest there is a genetic link.
Is there a cure?
No. Unfortunately, at this time there is no cure for Endo. However, there are treatment and management options available.
Personal Stories from the Cupcake Crew
Emily (She/They): When I first got my period at the age of 13 I immediately had a terrible cycle of monthly pain. I went on the mini pill within a year of starting my period because I had such painful periods and heavy bleeding.
Then in high school I started to have some GI symptoms as well as total intolerance to heat. I fainted several times at summer marching band practice and eventually quit all together because walking around in the heat blowing into an instrument just wasn’t going to work for me. I started to get extremely nauseous and vomit when I was on my period. This was when we began a journey of seeing many doctors to figure out what was wrong with me when I was around 15. First I was diagnosed with “abdominal migraines” (Spoiler Alert, this was not correct). Then after struggling for a couple more years. I eventually went to Mayo Clinic and had a million tests done on me. Nothing was conclusive. Finally Mayo got me into an OB GYN that specialized in adolescents and she suggested it might be endometriosis. The only way to diagnose it was via laparoscopic surgery. We decided that was the best course of action since we wanted answers. I had the laparoscopy at 17 and it was determined that I did in fact have endometriosis. They didn’t do excision at the time because I was so young. Getting an answer for my pain and issues was an amazing feeling.
After the diagnosis I went on Depo-Provera which is a hormonal injection that puts you into menopause. I did that for I think 6 months. I also went on an anti inflammatory diet. After that I went back on the mini pill but specifically was prescribed to take it through my periods to prevent them from happening. This worked for a time but I always seemed to get used to the pill and my period would come back and we would have to try a new one. I felt like this was really messing with my mood so I explored other options. I found Nexplanon which is a implant that goes in your arm. It worked pretty well for me for about 7 years, then I started to get pretty bad cramps and GI issues again. I saw a gastroenterologist who told me I had stress induced IBS, told me to eat fiber, and wrote a specific brand of cereal on a prescription pad and gave it to me. My gyno at the time suggested I try an IUD and I HATED IT. It made my cramp pain a million times worse. After I got it removed I decided to try not being on hormones since I had been on them consistently since 17 and I was 30. My blood pressure was instantly fixed, but I was no longer treating my endo.
Over the course of the next 5 years my symptoms gradually got worse and worse. I started to get pain and GI symptoms during ovulation as well as during my period (so half the month) I would bring it up at annual Gyno appointments and they were pretty much like “yeah Endo lol” or “well, the only thing you could try is surgery and you don’t want that.” This past summer I decided I did in fact want that and found a Endo excision specialist.
I met with my doctor for the first time and after describing all my symptoms he agreed that my GI symptoms were very likely Endo. He also asked if I wanted a hysterectomy, which was shocking to me, I figured that would be harder to accomplish especially living in Kentucky. I did decide to go with the hysterectomy because my doctor said told me the hysterectomy would improve my chances of the endo not growing back. On December 11th of 2025 I had a hysterectomy. My doctor said there was endometriosis “all over the place.” It was on my bladder, colon, rectum, thigh wall, and had grown so much in my left ovary that they removed the whole thing. So I ejected uterus, cervix, tubes, ovary and a whole bunch of endo tissue.
Surgery pain and recovery honestly was not any worse than the pain I was dealing with on a regular basis. The worst part was operating on my bladder made me feel like I had a bladder infection. I’m doing much better now than I was pre surgery but excision and hysterectomy is not a cure, I still have endo. And I still do have symptoms. The next steps are pelvic floor physical therapy and seeing a dietician to potentially go back on an anti inflammatory diet. I’m happy that I finally found a doctor who was willing to do something about my situation but I am still enraged that there is so little research and study into this disease that effects so many people.
Aubrielle (They/Them): Before knowing Emily I had only vaguely heard of Endometriosis. Thinking back to all of my symptoms, when they started, and how much they have progressed, it amazes me that no one I talked to ever mentioned it. I guess I’m on par with the “7-10 years to get a diagnosis” statistic. Anyways… When I was 18 (now 28) I went on the pill and came off of it when I was 25. Coming off the pill was miserable for me. My first cycle off of it I had nausea, vomiting, and bowel symptoms. It was the first time I’d ever had to call into work because of my period. The first time it happened, I assumed I just might have had a bug or something. Then it happened the next two cycles. Before this I had also gone to the doctor for pelvic pain occurring both on and off my period. They did a pelvic exam (which has always been painful for me) and an ultrasound. All they found on the ultrasound was extra fluid around my left ovary. I now know that’s likely Endometriosis tissue. My symptoms were written off as anxiety and IBS, so I sort of put it out of my mind. My gastrointestinal symptoms had mostly subsided once my body adjusted to coming off of the pill and I didn’t know of anything to look into further. Fast forward 3 years to present day, 28 year old me. I began having debilitating cramps and back pain on my periods. I hadn’t noticed the progression of my symptoms until I started having to miss work once or twice a month because all I could do was lay on the couch with a heating pad. I started calling doctors to try to address this issue again. It took several phone calls and waiting 6 months to get in, but I’m grateful to say that I found a doctor who listened to me. Who knew about Endometriosis, affirmed that it’s likely what I’m dealing with, and referred me to pelvic floor physical therapy and a pelvic pain specialist. I’m now a little less than a month back on hormonal birth control, I went with the Nexplanon implant, and will begin pelvic floor PT in April. I plan to have laparoscopic surgery in the future as well, but am cautiously optimistic about my current treatment plan. It’s unfortunate that it took multiple years of dealing with and tracking my symptoms, and multiple doctors to get here, but I’m grateful to have finally been believed.
In conclusion…
Endometriosis is a chronic condition where tissues similar to those found in the uterus grow outside of the uterine cavity. It is an inflammatory disease that can cause pain at any point in the menstrual cycle, not just when someone is bleeding. Along with other symptoms like bowel and urinary disorders, pain during sexual activities, infertility, chronic fatigue, and more. Endo affects 1 in 10 women and people assigned female at birth. Based on those with a diagnosis, which can take 7-10 years to obtain. It typically occurs in people between the ages of 12-52, but can affect those who are younger. Today we do not know the cause of Endometriosis, but some studies suggest there is a genetic link. Unfortunately, also due to lack of research, there is no known cure for Endo. There are however treatment and management options like pelvic floor PT, hormonal birth control, and laparoscopic surgery.
Spreading awareness about Endometriosis is one way we can advocate for those suffering and push for more research to be done. Painful periods are not normal, no matter what your doctor says. That is medical gaslighting. I know there are legitimate barriers to medical access, but if you are suffering with pelvic pain do not settle for a doctor that doesn’t listen to you. Bring a trusted friend to your appointment to help advocate for you, document your symptoms to make the appointment easier, and if you get written off, get another opinion!