Doctors Said My Pain Was ‘Normal’—I Was Really Suffering Endometriosis Symptoms for 34 Years
After decades of health issues, one woman finally uncovers the real cause—and finds relief
Key Takeaways
- Endometriosis symptoms are often dismissed, which can delay a diagnosis for years
- Severe cramps, heavy bleeding and pelvic pain are not 'normal' parts of a period
- Proper diagnosis and treatment can dramatically reduce pain and improve quality of life
The MRI report stated, “most likely has deep pelvic endometriosis.” It caught me off guard. My doctor had ordered a test for my coccyx, or tailbone. The pain in that area was so intense that I couldn’t sit up straight; I had to lean to one side or another. Now, this was one more doctor I had to schedule an appointment with. For 34 years, on and off, I had been dealing with issues like extremely painful menstrual cramps (to the point I felt like I might pass out) and heavy bleeding. And though I didn’t know it at the time, I would later learn these were symptoms of endometriosis—and it would be a long road full of gynecologists telling me there was nothing wrong before I finally received the diagnosis and treatment that changed my life.
I had been struggling with my health
The past two years have been a medical rollercoaster ride. First was my lipedema diagnosis, followed by May Thurner Syndrome, a condition where the right vein in my left leg was crushing the left vein because they crisscrossed instead of lying straight. If the cardiologist hadn’t found it, a fatal blood clot could have dislodged. I’d been to gynecological specialists and pelvic PT for my vulva pain, and rectal surgeons for the coccyx pain. And now I was adding an endometriosis specialist to the list.
Kelsey Kossl, M.D., a gynecological surgeon at NYU, stared at the MRI images for a minute. She explained that a few things were occurring. I had a uterine fibroid that wasn’t too big, but its location was pushing the uterine lining backwards, which can cause very heavy bleeding. The only fix was surgery.
Woman's World Answers
The next topic of conversation centered on possible endometriosis—a chronic, often painful disease where tissue similar to the lining of the uterus grows outside the uterus, commonly on pelvic organs like ovaries and fallopian tubes. The MRI image showed a thick white line towards the back of my pelvic floor, and Dr. Kossl asked me multiple questions about my cycle.
My periods were heavy and painful
Initially, my menstrual cycle caused me to bleed through every pad, painful to the point of curling up in a fetal position. And up until about 10 years ago, they were irregular. However, the cramps and irregularity subsided in my mid-thirties. But over the past two years, the cramping intensified again. And the flow, which lasted seven to eight days, had become increasingly heavy. I also experienced severe stomach pain two weeks before every cycle. I could eat something the size of a walnut and it felt like I’d eaten a seven-course meal.
For as long as I can remember, my lower back has been painful around my cycle. In my 20s, it escalated. I spoke to my male gynecologist, who, at the time, told me to start seeing a chiropractor. When that didn’t work, I switched doctors. The new physician explained that it was a “normal” symptom. At that point, online medical information wasn’t as readily available as it is today.
I was medically gaslit about my endometriosis symptoms
About eight years ago, I started spotting in between cycles and became extremely bloated. I Googled possible symptoms, which all pointed to PCOS or ovarian cancer. I remember my doctor’s remarks when I mentioned I wanted testing done, “Are you a doctor? How did you come to that conclusion? I am not concerned about this. You just need to lose some weight.”
The spotting lasted three months. Fast forward to 2024. I had just been diagnosed with May Thurner Syndrome, and my vulva area began hurting on and off. My new gynecologist specialist tried traditional treatment methods to help, including pelvic floor physical therapy. But nothing worked.
After reading the MRI report and taking stock of all my symptoms, I began researching endometriosis. My gut screamed at me that this could be the answer we have been searching for. Now, I realize that my pelvic floor isn’t tight—it has been endometriosis this whole time.
Why so many women dismiss endometriosis symptoms
The National Library of Medicine reported a median delay of eight years from symptom onset to endometriosis diagnosis. Factors such as menstrual cramps in adolescence, normalization of pain and the attitudes of health professionals all contributed to a delayed diagnosis. For me, it boiled down to finding the right doctor to actually listen to me, Dr. Kossl, even though it took decades. One who wasn’t afraid to have me undergo tests or procedures to have definitive answers.
“Unfortunately, women may normalize their symptoms and suffer in silence, or their providers may dismiss or diminish their symptoms,” shares Dr. Kossl. “Historically, we’ve said that the definitive diagnosis of endometriosis is via surgery, but we can also give women a clinical diagnosis based on signs and symptoms. This clinical diagnosis requires taking a careful history and really listening to our patients, which unfortunately many women do not experience in their interactions with providers.”
By the end of the visit, I had scheduled a myomectomy—surgery to remove the fibroid—which would help with the heavy periods. I also asked about the unexpected news that I might have endometriosis.
My symptoms weren’t the classic signs of endometriosis
The most accurate way to fully diagnose the disease is to undergo a diagnostic procedure where the surgeon makes three to four small laparoscopic incisions on the abdomen. The doctor can see whether any uterine lining tissue is growing on the outside.
Dr. Kossl warned me that she wouldn’t be surprised if she didn’t find any endometriosis, since I was also experiencing vulva pain; it was unclear if endometriosis was the cause. The cramping wasn’t consistent. My cycles were irregular, then became regular, not the other way around. I don’t have pain urinating during my period. There hadn’t been spotting in between cycles for the last three years. More importantly, my symptoms didn’t gradually surface; they were present on and off for decades.
“Endometriosis is an inflammatory condition, so it should be considered if a patient has inflammatory symptoms of the bladder or gastrointestinal systems like bladder pain, urinary frequency or urgency and bloating, especially if these are not improving with interventions in these other areas,” Dr. Kossl explains.
She notes that mild cramps or inflammatory symptoms during a period should be well-managed with measures such as taking an NSAID or taking a brief rest with a heating pad. But if your periods are non-responsive or minimally responsive to these measures, and the pain is impacting your ability to participate in daily life, that is not normal.
How my endometriosis was diagnosed
Waking up after the two-and-a-half-hour procedure, Dr. Kossl explained to me that I have stage I endometriosis. She removed tissue from seven areas, including the right and left sides of my pelvic floor. Dr. Kossl sent samples to the lab to confirm the diagnosis and make sure what she removed wasn’t cancerous. Everything was benign, and my fallopian tubes were healthy. She also told me there was a polyp in front of the fibroid that had to be removed. As she extracted it, the assistants and nurses watched on the monitor as my uterus floated back into its normal position.
She showed me the images she took during surgery. The inflammation was across my pelvic floor; I could clearly see how red all the areas were. But removing the endometriosis was only the first step. I had to wait at least two cycles to feel any changes.
My symptoms finally subsided
I noticed right away that my tailbone pain had subsided. Before surgery, I couldn’t sit for more than five minutes without shifting or standing up. Now, there’s zero discomfort. My theory is that my backward-bent uterus caused pressure to my coccyx region; that’s why nothing else relieved the symptoms.
Dr. Kossl explained that, in my case, the most likely source of pain was a combination of factors—the fibroid’s location intensifying uterine pain, along with pelvic endometriosis contributing to it.
My first menstrual cycle after surgery presented no signs of relief. I wasn’t upset; I knew this was part of the process. The second cycle, though, was what I think a period should be like. Instead of lasting a week, it stopped by day four. I experienced zero cramping, and instead of using three pads at once, I only needed one.
For 34 years, I suffered in silence, thinking that every woman’s period was the same—that it’s just part of life. Having now experienced what it should be like, I’m happy I finally figured it out for whatever time I have left before menopause.
Dr. Kossl sympathizes, “I wish women were given more information to understand menstruation and reproductive health. Basic, accurate information is so helpful for demystifying what is happening in our bodies. Being informed also helps you advocate for yourself when you do have concerns about pain, abnormal bleeding, hormonal conditions and fertility.”
What to do if you’re experiencing endometriosis symptoms
If you are experiencing the following symptoms, which could be a sign of endometriosis, schedule an appointment with a specialist:
- Severe menstrual cramps (dysmenorrhea): Pain can be intense, lasting before, during and after your menstrual period
- Chronic pelvic pain or pain in the lower abdomen
- Pain during or after sex (dyspareunia): A common symptom that can affect intimacy
- Heavy or irregular periods: Bleeding for more than seven days or having cycles shorter than 27 days
- Painful bowel movements or urination: Typically occurring during a menstrual period
- Infertility: Difficulty conceiving occurs in up to 50 percent of people with endometriosis
Why we need to advocate for ourselves
“Pain is not normal,” Dr. Kossl emphasizes. “I see women who are taken out of work and life, and whether it is for one to two days or weeks every month, that is not normal; I see women who can’t have sexual activity due to pain and are told to ‘just relax,’ that is not normal. I also want women to know there are solutions. Please see a specialist, and know that we can start working on interventions to restore your quality of life.”
Advocating for yourself is the only way you’re going to find answers. Doctors know the fundamentals of the medical conditions; they don’t know your body better than you do. If something doesn’t feel right, it probably isn’t.
My health journey has taught me that I have a voice, and I’m no longer afraid to use it. I encourage you to be bold in your medical advocacy.
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