22 Years Without a Diagnosis: My Endometriosis Story

Where do I even begin? How does one go through the most debilitating pain for so many years and doesn’t get help?

From the moment I hit puberty and started my period at 10 or 11 years old, I remember having painful periods. I have memories of being in my room all day during my period or feeling absolutely miserable in school. As long as I remember I never looked forward to my period, I would plan my life around it whether that was hanging with friends, vacations or going on dates. My period ran the show. But I took until I had a lot of trouble walking that I couldn’t ignore what I was experiencing. This can’t be normal. Something is wrong.

For decades I experienced severe pain but simultaneously I dismissed it as normal because that’s what I was told by gynos. From what I briefly heard about endometriosis, I never took it seriously as something I might have because I didn’t have the classic symptoms. Plus, in the early 2000s, I never heard anyone talking about endometriosis ever. Painful periods was something we all had, it’s a normal part of being a woman. How can something that makes me almost pass out from pain be normal?

A lot of you may have known my blog, Traveling Jersey Girl before I changed my branding. If you’ve followed me a long time, you’d know that I’ve done a lot, I’ve traveled and did really cool adventurous activities. But I’ve always had an underlying anxiety or social anxiety because I wasn’t sure how I would feel that particular day. Most women usually feel a little crampy before their period and then have regular period cramps during their cycle. For someone like me, I was in pain everyday of the month. Some months I’d get lucky and have a less painful month but that was few and far in between. But a majority of the time, I maybe had a few or a couple days pain free.

Again, I thought this was normal and just something I would have to deal with for the rest of my days until I hit menopause. From my late 20s to 32, my periods were getting significantly worse. I used to work in mental health as a case manager, which was a very stressful job with a lot of responsibility. I was really struggling at work to even get through the days leading up to my period and during my cycle, I was barely able to work. I would sit at my desk in severe pain where I’d get lightheaded and have to take deep breaths to try and get through the day. Lots of the times, I would be fighting tears because all I wanted to do was to go home. I lost a lot of jobs, I quit a lot of jobs, which put stress on my relationships with my family and my husband. What was I supposed to say to a job? “Oh, I’m in pain a majority of the month and when my period comes it’s even worse and it deeply impacts my ability to do my job.” The moment I said I have really bad periods, I would be instantly dismissed or scoffed at. I wouldn’t even bring it up a lot of the time but when I did my male bosses didn’t understand and female bosses were even worse in dismissing my pain.

I had a gyno that I was seeing for the past 7-8 years and I wasn’t given much help other than birth control options. I was always sensitive to birth control back in my 20s, and it made my period pain so much worse. In my mid 20s, I stopped taking birth control and tried my best to detox my body to only using natural products from shampoo, toothpaste to deodorant. Looking back, I think it did help but it obviously wasn’t a cure all.

Recently, I requested my entire medical record to see my gyno’s notes to see if he ever suggested endometriosis. There were times where his notes said I didn’t have painful periods, which was never true. And then other times he said I did. But it took 6 years before I saw anything about endometriosis in his notes as something he suspected. 6 YEARS. I was on the copper IUD for many years and eventually I couldn’t take the pain anymore. I wanted to see what my periods were like without it. I had some relief probably because I didn’t have a foreign thing in my body. I was desperate for answers. I was not given any education other than him telling me to look up the symptoms of endometriosis on my own.

The typical symptoms like irregular periods, long heavy periods weren’t something I struggled with so I figured I didn’t have it. I gaslit myself. I remember asking if there was something else I could do, like refer me to someone else and he said there wasn’t anyone he can refer me to. He convinced me to try a hormonal IUD, which I was strongly against. I knew hormones were not good for me and made things worse but he was certain that the hormones can help. I told him I’ve tried this before with other hormonal options and it usually didn’t work well. I decided to do this one last time and then I was going to get a hysterectomy (I didn’t know at the time that this wouldn’t cure anything).

Getting on the hormonal IUD was the absolutely the worst decision I made. I was in worse pain than ever before. I was either on the bed or the couch, it was affecting my social life, work life and sex life. I’m young in my early 30s and I feel like I’m dying. So within 7 months, I told them take it out. I can’t do it anymore.

So what choices did I have? I had to push through as much as I could until I couldn’t. At the end of December 2022, I was having trouble walking. At that point in the year, I was barely working out, which is something I deeply love. I couldn’t do my HIT exercises or Zumba anymore, and only form of exercise I was doing was walking because I do not do well with not being active, but that was even causing me pain. When I was walking I began to notice that my left hip would give out, I would have a severe sharp shooting pain that stop me in my tracks.

In 2021-2022, I was seeing any and every specialist I could think of that this pain may be related to. I did a deep dive into research and began looking at medical anatomical charts to look at the bones and nerves and see what was connected to what, and then try to figure out what doctor specializes in it to help me. My biggest pain that never went away was chronic SI joint pain. It’s the lower left part of your back and the pain would shoot down my left leg, which was causing my hip to give out. It was also causing numbness and tingling in my left foot. I thought something was wrong with my hip. By the time I was seeing my hip doctor, I was so exhausted by medical appointments. I remember going to this appointment feeling so anxious that I was going to hear bad news. So much so that I felt lightheaded and had to lay down in the chair while he told me what he saw on my MRI. He said, “You have a mild labrum tear.” He said sometimes it requires surgery and other times not. We can go in and use a PRP injection, which is that they take your own blood plasma to inject it into the area that needs healing. The plasma helps things heal.

I was relieved because I thought okay, this is what it is. And once I heal, I’ll be fine. Not true. I still had that same excruciating SI pain and everything else I’ve struggled with. When I came back for my follow up, he said “we did what we could and it could still need time to heal but I think you have two things going on.”

Him saying, I had two things going on lit a lightbulb in my head. I went further into my research and endometriosis. There was SO much misinformation and conflicting theories. I read through it all or at least the best I could. By the start of the new year 2023, I was pretty convinced I had endometriosis. Due to my excessive research, the algorithm actually helped me and I stumbled upon Pelvic Rehabilitation Medicine on Instagram. Everything I read on their website spoke to me, the symptoms and all. From my research, I knew how important it was to find the right surgeon. Not life or death decision but pretty close. The wrong surgeon can make things that much worse. I found Dr. Lora Liu. I researched her heavy, from where she studied, how long she studied, why she does excision surgery etc. and she checked out. I also tried to find negative things about her and couldn’t find anything. The other surgeons I found were either too expensive and or had too many negative reviews that didn’t make me comfortable.

From my research, reddit threads, FB groups and clinical studies, I formulated a list of questions that I would ask any surgeon I came across to weed out if they were educated enough in Endometriosis excision surgery. I had other surgeons that were on my list but I honestly didn’t want to travel far with such a complicated surgery so I was praying Dr. Liu was the one.

When I first went to Pelvic Rehab, they suggested I use their nerve block protocol, which are a series of injections to calm down the nerves and there are a lot of women who benefit from them, which decreases their pain. But when I went in, I already had my mind set on surgery. I was beyond desperate for answers and didn’t care about anything else but knowing whether I had Endo or not. The pelvic pain specialist was the first person who genuinely listened to me. Ever. She didn’t cut me off when I was telling her my symptoms, she didn’t chalk them up to be anxiety or anything else. She was also pretty convinced I had endo from what I was telling her.

The main symptoms I had on a monthly/daily basis:
-Painful sex, especially after, which at times could last for days.
-Bowel issues, constipation and “period poops”.
-GI issues: my stomach hurt after every meal.
-Severe SI joint pain (Left side).
-Radiating left leg pain.
-Numbness and tingling in left foot.
-Left hip would give out when I’d walk.
-Painful cramps during ovulation.
-Painful cramps before period.
-Painful cramps during period where sometimes I’d almost pass out.
-Fatigue: always needing to take a nap.
-Bleeding during sex and ovulation.
-Bloated all the time.
-Butt pain aka “Butt Lightning”


Update: Leading up to December 25th, 2025

I’d say a 1 .5yr+ after my first excision surgery, I started noticing my periods were getting bad again. I didn’t think Endometriosis was back but I didn’t know I was thrown into early perimenopause at 34, I do have a family history of early menopause (42 yrs old with my mom and her identical twin sister).

My periods were good, with minimal pain the first year. My periods were once 100% debilitating prior to any surgery, now I had a 50/50 chance of it being debilitating. I was devastated and frustrated. My hormones had crashed and I desperately needed to get HRT. I went back to my old gyno who ignored my endometriosis because I couldn’t get an appointment at the time I needed one. I told him I wanted to get my hormones tested, I knew they were off, I think I’m in perimenopause. Again, I was met with disbelief because I was so young.

The immediate response, “You must have PMDD.” I was never diagnosed with PMDD. With my background in mental health and patient advocacy for over a decade, I knew it was a blanket slap on diagnosis. It’s a lazy and misogynistic response (in the world of women’s health history). Hormones make women highly emotional, so we must be crazy. I couldn’t eye roll big enough.

They refused to test my testosterone levels which I felt was my issue. Women don’t need testosterone. Despite it being one of the main important hormones in our bodies to keep our energy, libido, mood etc.

I knew a hysterectomy would be in my future but I was terrified to get the surgery done without having had fixed my hormonal issue. I knew hysterectomies could throw off hormones further even with the ovaries kept. I was desperate and scared. I was also going through a very traumatic time in my life 2023-early 2025 after I was attacked in my home. Severe trauma plus my hormones being in the depths of hell, it was the most terrified I’ve ever felt in my life. I thought I was either going crazy or going to die, or both.

Desperate again trying to find answers because when you have endometriosis you have no choice but to be your own doctor, researcher and advocate. Back to the research to find a doctor who would listen to me, I found a gyno in another state that to my luck did telehealth. I told him my symptoms, I could not get out of bed, I had no motivation, no sex drive, anxiety and panic attacks, and simply didn’t feel like myself. I said I wanted my hormones tested, the difference? He didn’t question me, he didn’t blow me off to say I had PMDD or there’s no way I could be in perimenopause at this age.

When my blood results came back, my testosterone was basically next to nothing. I went immediately on testosterone cream from my compound pharmacy and within a few weeks, I felt like I was brought back to life. Like a light switch was turned on. I was me again.

Going into 2025, I was getting beyond tired of my periods stopping me from doing things I love. I was tired of cancelling plans on people because I didn’t know how I would feel. And I didn’t want to wait until menopause to see if things would get better, and who knows how long that could be. My uterus was slowly killing me. I knew the hysterectomy was needed.

I called my original surgical team back and let her know I was ready to go. I couldn’t take this anymore. It's quality of life at this point and I don’t want to suffer anymore.

I decided to remove my uterus, cervix and my fallopian tubes. The cervix was a hard one to let go because of sexual pleasure but since it was diseased prior with Endo, it wasn’t a great idea to keep it. Plus, knowing I could still spot even with the uterus removed, I was sold on removing it.

With any Endometriosis surgery, at least in my severe case. It’s never simple and easy. There’s always seems to be twists, turns and surprises. What was supposed to be about 2hrs turned into 4-5 hours. I had unbelievable amounts of scar tissue from the previous surgery.

I had 24 biopsies worth of scar tissue removed including my uterus, cervix, and tubes. My hypogastric nerve was destroyed from previous endo from the first surgery and now with the scar tissue. That had to be regrafted. They did find Endo in two places, rectovaginal and my bladder wall. My surgeon isn’t certain that this is “new disease” but potentially disease left behind from our previous surgery. She mentioned she couldn’t have gotten that plus all the scar tissue I had out without having done the hysterectomy.

When my pathology came back for adenomyosis, it came back negative. To myself and my surgeon’s shock, she asked to have it be ran again with another piece of specimen. It came back negative again. That felt like a gut punch because I know I have it. My surgeon also believes I had it too. But the pathology screening for adenomyosis isn’t always clear cut. Those particular pieces of tissue may not have had adenomyosis and it would take millions of slices to find where the adenomyosis is, which they won’t do. But I had all the classic signs and debilitating pain. That result was a hard pill to swallow. I wanted to hear that I had adenomyosis because if it “wasn’t” that, then what is it? But I do know and understand a negative result doesn't always necessarily mean you didn’t have it.

The recovery for this hasn’t been easy. I’m 10 months post op and I’m still recovering with bowel and bladder issues that I’m trying to resolve. Nothing about endometriosis surgery or recovery is easy or simple.

There are times when I think about the gyno I saw for 8 years who claimed to be an Endo specialist and sat on an Endo advisory board, and how he did nothing for me but put me on birth control. I think about how much sooner I could have gotten help if he knew what to do or at least refer me out. I think about if I had had help 8 years sooner, would the damage be as bad as it was. I wrestle with that sadness and anger from time to time, but it only fuels me to be a patient advocate even stronger. And help other women to get the help they need faster. If I could remotely be somewhat be a road map to point them in the right direction, it makes me feel good that I’m helping others.

My hope is that my story can bring more awareness to this devastating disease and give people hope that they can find help and feel good again. Because despite a really rough recovery from both of these surgeries, this is the best I’ve ever felt in decades. I can do so much more than I ever could. I don’t need to nap anymore which was weekly ritual. I can say yes to plans without having to think about how I might feel because of my period.

My period is no longer ruling my life. I took the reins and now I’m fully in the driver’s seat of my life. Maybe for the first time ever. And I’m going to make up for all the lost time. I’m going to live the hell out of my life.


Listen to more of my story:
Episode #17: 22 Years Without a Diagnosis: My Endometriosis Story with Dr. Kelly Sadauckas @TheRealPelvicFloored