1999- 12 years old
I started my period and I didn’t understand why I was in so much pain. Everyone kept telling me it was “normal” and that every woman deals with this. Basically just suck it up because you aren’t special and “it’s just part of being a woman”. Some welcome to womanhood, huh?
2001-2002- 14-15 years old
During this time, I learned what Endometriosis was through a close friend who was newly diagnosed. Since this was the time of “Ask Jeeves”, I asked and started researching. This was my first time going to a gynecologist. Of course, insurance wouldn’t approve the laparoscopic surgery to confirm a diagnosis. So we decided to skip to what the doctor’s “treatment” would be if we did the surgery and it was confirmed just to see if that would improve symptoms. The doctor wanted to put me on Depo Lupron shots but I didn’t feel comfortable with that. I’m so grateful I listened to my gut on that one. The Lupron shot was originally created as a treatment for men with prostate cancer. The side effects are HORRIBLE and some even last a lifetime. Not saying that birth control was much better but here we are.
This is when my long journey of birth control pills began. Eventually the decision was made to forgo having monthly periods and instead have 2 planned periods a year. Basically, a chemically induced menopause. I had all the symptoms of menopause at 15. It was scary and none of my friends could understand or relate. I remember having hot flashes so bad I would lay on the linoleum floor in my bathroom with a spray bottle of water fanning myself. All while I was crying because I truly didn’t understand what was happening to my body. Despite those 2 periods a year being “planned” and “controlled”, they were still too painful, and I was too sick to function. This led to the decision to take birth control pills constantly without any periods at all.
I remember when I was 15, my parents took me to my gynecologist appointment. After the exam, he brought us all into his office to talk about the next steps. The only thing I remember from that conversation was the doctor saying that if I didn’t have a child now (at 15 years old), then I would never have the chance. I never really saw myself having kids when I pictured my future as a child. But this really solidified that for me. Having children was just one of those things that wasn’t going to be part of my plans and for me that was the least of my worries.
2003- 16 years old
This was one of the hardest years of my journey. I remember only making it to school 19 days in my first semester. I still did all of the work and managed to make the high honor roll, but my teachers and counselors were so angry. It truly felt like I was deathly ill. I wouldn’t have wished that upon my worst enemy. I was able to get my school to agree to home teaching with input from my doctor. Having access to home teaching my junior year was such a relief. One less thing I had to worry about or so I thought.
2004-2005- 17-18 years old
I was still sick constantly from the pain. Until this point in my life, I never knew pain could make you physically ill. I felt like no one believed me. I just kept hearing things like: “You’re crazy”, “You’re being dramatic, every woman deals with this, it’s normal”, “You just have anxiety”, and best for last “Get over it”! This was my senior year of high school. My school administration took away my home teaching services because the pregnant girls needed it more than I did. Gotta love supporting teen pregnancy. I was so upset that after all this time and all my hard work, my school couldn’t even support me. It felt like my entire community was failing me from school to friends to family. I was devastated. Just 3 months before [what should have been] my graduation, I dropped out of high school. I just didn’t know what other options I had at the time. If only online school was a thing at that point, things would have been far different for me. Instead I ended up doing a homeschool program that I paid for myself. I still graduated in 2005 but I missed out on all of the things my friends and my classmates got to do that year.
2005-2008- 18-21 years old
This was the period of my life where I genuinely tried to gaslight myself into thinking all this pain was in my head and it never actually existed. That’s all I kept hearing from everyone around me that I was supposed to trust, respect and hold in high regard. Needless to say, the pain continued and I had no support so I just kept quiet and internalized the struggle.
2009- 22 years old
In February 2009, I joined the Army National Guard. This was also the year I had my first “endometriosis surgery”. This was supposed to be a diagnostic laparoscopy. I was told it would be an easy procedure and recovery would be quick. Nothing could be further from the truth. This surgery was done by an OBGYN who had ZERO business even pretending like he knew even the slightest thing about Endometriosis. But at this point, I just assumed doctors knew best. Boy was I wrong. This surgeon did the normal 4-5 incisions about an inch or less and in all the right spots. But under the skin, he cut through muscles and created an even worse situation. He did however confirm that I had endometriosis. So I guess that was the positive out of a bad situation. I had no idea why I went from being in the best shape of my life to suddenly not being able to sit up in bed on my own without pulling myself up using my sheets. Later in 2011, I found out that he cut through the muscles and really messed up my insides.
2010- 23 years old
This is the year things were out of control. The pain and the bleeding with my cycles was so bad. I had been married for a year at this point, and we wanted to try to have a baby when he came home from deployment. I was trying to get my cycle back to “normal” if that’s what you want to call that process. At one point I was sleeping on trash bags because the bleeding was so bad. This was the point in my journey where I started to realize that this had to be more than just endometriosis. Luckily, I had an AMAZING nurse practitioner at the naval hospital and she was very helpful and supportive in trying to get me to the right people who could help me.
2011- 24 years old
This year was HUGE for me. I was able to get a referral to see Dr. Sinervo at the Center for Endometriosis Care in Atlanta, GA. We were living at Camp Lejeune at the time but Atlanta was only a few hours from my parent’s house in SC. So this was definitely something that I knew I could make work. In June of this year, I had endometriosis excision surgery. Dr. Sinervo diagnosed me with Stage 4 endometriosis. He did as much excision as he could, and repaired what he could from my surgery in 2009. He also diagnosed me with Interstitial Cystitis and Adenomyosis.
Interstitial cystitis (IC), or bladder pain syndrome, is a chronic condition causing intense bladder pressure, pelvic pain, and urgent/frequent urination without infection.
Adenomyosis is a condition where endometrial tissue grows into the muscular wall of the uterus, causing it to enlarge and bleed during menstruation. Common symptoms include heavy, painful, and long-lasting periods, pelvic pressure, and bloating.
These diagnoses explained so much of what I had been going through all of those years. I don’t want to say it was nice to have a diagnosis. But it was such a relief to know that it never was all in my head and this was a battle I had been going through for so many years. I wasn’t crazy, I was truly hurting. I wanted to run around to every person that told me to get over it or that I was being dramatic and just scream “I TOLD YOU SO”! But of course I couldn’t do that. But you bet it was something I pictured in my mind. And ANYTIME anyone questioned me or my pain I finally had evidence from one of the top surgeons in the world to back it up. Sadly, I still needed to prove I had a reason for the pain to so many people and doctors that after a while it didn’t feel like much of a win because people would still doubt it.
2012- 25 years old
I had relief for almost a year from the pain. It was nice to feel a little bit normal. At least that was until the pain came back tenfold. I was blaming myself for the pain coming back so soon and trying to act like it was fine. It wasn’t. In September I finally reached back out to Dr. Sinervo and he agreed to do another surgery that November. This time he did more excision, and a presacral neurectomy.
A presacral neurectomy (PSN) is a specialized, often laparoscopic, surgical procedure that cuts the nerve fibers of the superior hypogastric plexus to treat chronic midline pelvic pain, particularly severe dysmenorrhea and endometriosis. It effectively blocks pain signals from the uterus to the brain, offering relief in approximately 75-83% of cases.
This procedure was a last ditch effort to preserve my uterus because I was “too young” to have a hysterectomy. I can’t explain the relief I felt after this procedure. It was like I was walking around in a dull gray world because I was in constant extreme pain. And after the PSN, I was able to see colors and truly enjoy life again. This is when we realized that my pain was not just endometriosis but also adenomyosis. Again more validation for all the tears I had cried and countless hours spent in ERs or doctor’s appointments crying out for help with no relief.
2013-2015- 26-28 years old
The pain was SO much better after my surgery in 2012. It was almost like I had my life back. Until about 2014, when I started to realize there was something very wrong. I was having gastrointestinal symptoms, horrible pain in my upper stomach, and the pain once again was making me ill on top of everything. At this point in my life pelvic pain was just a normal thing, but this pain was nothing like the pelvic pain. I was able to convince my doctor to check on my gallbladder with my symptoms. Sure enough, it was only functioning at like 13%. But there was also a much bigger issue.
2016- 29 years old
The much bigger issue was my liver. I knew way back when I started birth control pills that I had a lesion on my liver and over the years people would point it out. Now it was showing up as a tumor. This liver tumor was wrapped around my pulmonary artery. I remember sitting with my general surgeon at Womack Army Hospital at Fort Bragg and he was drawing me pictures of how serious this was. He stayed with me and explained the procedure, all of the risks, and just how serious this was. By the time I left the hospital that day, everyone was basically gone and the offices had closed up for the night. Doctor Vreeland was truly an angel. He didn’t back down from this but he also didn’t make any promises. He flat out told me that there was a chance this surgery might not solve the pain I was having. But I knew in my heart I needed to have this done.
I was truly petrified as I prepared for the surgery and what could also be the end of my life. I was being told to get my affairs in order, make a will, talk with family and friends, and truly try to come to peace with the fact that this might be the end for me. I remember going into that procedure having my parents and my husband at the time by my side. I was truly trying to be strong but it was terrifying and I knew my parents were terrified but trying not to show it. After surgery, I remember starting to come out of anesthesia and asking the nurse if I was alive. I spent the next 4 days in the ICU. Once I was on the mend and they discharged me, I remember being wheeled out of the hospital and going outside and just crying because I could hear the birds and I was just happy to be alive. I knew it would be a rough road ahead but none of that mattered in that moment.
Of course, they did pathology and all kinds of tests on the tumor. When I went for a post op appointment, my surgeon confirmed this tumor was likely caused by birth control pills. So much for that “cure” for my endometriosis that so many doctors pushed over the years. He also told me that it was good we were able to remove it because it would have become malignant.
2020- 33 years old
My pain had started to return over the years. I’m sure you can see the pattern by now. I knew that I would need maintenance surgeries to clean up the endometriosis every few years or so. But this time I wanted to have a hysterectomy. After two divorces and years of health issues, I was done dealing with my uterus. I knew I couldn’t go back on birth control pills because of the issues it had already caused. Plus, fun fact, your liver doesn’t always grow back even though they tell you it will regenerate. So I was trying to be very cautious not to cause any damage to what I had left of my liver. Keep in mind this was all during the peak of Covid and the world shutting down. It took me seeing 16 different doctors to get someone in SC to agree to do a hysterectomy on someone without kids and no husband to make the decision for me. I ended up right back where my journey started in 2009. The surgeon that had botched my first surgery. The trauma and anxiety that came with even going and seeing him in the office was indescribable. He was the only person I knew that would help me. I went into this knowing that a hysterectomy DOES NOT CURE ENDOMETRIOSIS. So please don’t get that misconstrued. I just knew I wasn’t going to be having children and I needed a way to control some of the pain I was having without doing more damage to what I had left of my insides. The hysterectomy did in fact cure my adenomyosis. So I had one less thing to deal with on my “Pokémon list” of health conditions. (Anyone with autoimmune issues knows that once you have one condition your body seems to collect others like they are Pokemon you never asked to collect). Thankfully, the hysterectomy did help my pain a TON! I don’t regret that decision for one minute. However, I do regret not advocating for myself sooner and pushing for the hysterectomy years prior.
2022- 35 years old
I knew I needed to have another “excision” to clean things up and maybe diminish some pain. I put excision in quotes because this was another situation where I learned not every “specialist” is as specialized as you would hope. I found another “specialist”. I did some research on him and his practice “Advanced GYN Solutions”. This at the time was a green flag but I know now it should have been a red flag. If it’s too good to be true it probably is.
After almost a dozen office visits with Dr. Robison, I was able to convince him that surgery was necessary. I had a horrible kidney/bladder infection that put me in the hospital for 4 days. I knew what I felt and my gut feeling was that it was all due to endometriosis. This “specialist” kept telling me that having endometriosis impact my bladder and kidneys was so rare that it was “IMPOSSIBLE”. But I knew I had to stand up for myself and push for what I knew was right. During one of my office appointments, they did an ultrasound on my right ovary since that was all I had left. Turns out she decided that she wanted to show off and I was diagnosed with Polycystic Ovarian Syndrome or PCOS.
Polycystic Ovary Syndrome (PCOS) is a common hormonal disorder in reproductive-aged women, characterized by elevated androgens, irregular periods, and/or small, fluid-filled follicles on the ovaries. It causes symptoms like excess hair growth, acne, and weight gain, often resulting in infertility. While there is no cure, management includes lifestyle changes, hormonal birth control, and fertility treatments.
Since I needed a hydrodistension for my interstitial cystitis and there was NO WAY I was going to have that done in the office I was able to convince him to do excision all in one surgery so that I would be put under for everything.
I remember waking up from surgery with the nurse by my side and Dr. Robison came over to talk to me about the surgery. You could tell by the way he walked over to me that he was angry. All he said was “YOU WERE RIGHT” with the most childish attitude ever. Turns out that despite his words of endometriosis impacting your bladder, ureters, and kidneys as being “IMPOSSIBLE” it was exactly what was happening. My endometriosis was feasting on my bladder, ureters, and my kidneys. But it was also at this point, that I knew there was nothing more this doctor could do for me because he was not in fact the “specialist” or “expert” that he claimed to be. So I chalked this up as more of an informational surgery since he didn’t really do anything to remedy the situation. The only thing he did was hydrodistension of my bladder.
2024-2025- 37-38 years old
I had moved to Clearwater FL and knew that I needed to begin to look for actual endometriosis specialists nearby. My primary dr helped me find out that there is an Endometriosis Clinic at USF in Tampa. So I made an appointment there and started the rigorous process of once again trying to prove I needed surgery for my endometriosis. I was having the “endo belly” again BAD and my pain was becoming more frequent. I knew that my PCOS was also likely to blame for some of my symptoms but that endometriosis was at the root of it all. I spent months doing all of the requested tests and jumping through all the hoops because once again the surgeon didn’t think that excision would help me at all. But I knew that I needed someone to get in there and help figure out what was going on with the bladder/kidney stuff.
The surgeon also suggested I see a UroGyn to address my interstitial cystitis and the need for another hydrodistension. Thankfully the UroGyn agreed to join the team for my surgery. In January 2005, I was able to have the surgery. They took photos of everything and sure enough my endometriosis was attacking my bladder, ureters, and kidneys. So even though the surgeon said I only had stage 2 endometriosis, it was now deep infiltrating. Yeah that is as bad as it sounds.
Deep infiltrating endometriosis (DIE) is an aggressive form of endometriosis where tissue similar to the uterine lining invades pelvic structures (bowel, bladder, ligaments) to a depth of > 5mm. It often represents stage III or IV disease, causing severe chronic pelvic pain, infertility, and organ dysfunction. Treatment involves hormonal therapies or specialized, often multidisciplinary, surgery to remove deeply rooted nodules.
This definitely explained my symptoms and why I couldn’t find relief no matter what. Everything made sense again. But once again I left that surgery knowing I will eventually need another. That’s the nature of the beast with endometriosis unfortunately.
All of this to say “TRUST YOUR INTUITION”! You know your body better than anyone. Find confidence in that and no matter what your situation, know that you are the expert of your body. Fight for the care you need and don’t give up. If you don’t know where to start, reach out, ask questions, and create a support system that will help you fight. And remember, everyone is fighting battles that we may not see but it doesn’t mean it makes it any easier, be kind always, especially to yourself!
Sara R., Co-founder of 3HotgirlsHealing and Owner of Rewear Reserve Co.