Over the course of the day, I took 13 Tylenol. That wrecked my stomach. Looking back, I deserved to go to the hospital, but I was worried about what people would think, and I just couldn’t handle cramps. That I was weak. That is one thing I look back on my life and regret: I never once dared to go to an emergency room because I was convinced I was weak, and I was ashamed of that.

My parents were not in the picture, so within about a year, my fiancé and I drove to Atlanta (from South Carolina)  to see an Endo specialist. This was and is a very well-respected expert in the field who went on to found a large center and help many women. But to me,  I’ll never forget what he said. He said, “I mean, I doubt you have it, but I guess I’m willing to do an exploratory surgery for you.” His disbelief in me crushed me and kept me from having surgery. Now I like to look back on that and see it as God’s protection, because back then, if he had seen inside, he probably would have recommended a hysterectomy, and I wouldn’t have been able to have my daughters.

I got pregnant at 26 and 30 with my 2 daughters. All the while, suspecting I had endo but never getting any care or treatment. We moved to Birmingham, AL, and there was a pelvic pain specialist in tow,n but it took years to get in with him, and I still didn’t have the courage to try to see him since that expert had doubted that I had it. I confided in a Nurse practitioner that I was seeing for CRPS, how much I was suffering. She suggested a doctor to me who was in the same practice as the pelvic pain specialist because he believed women’s pain was real. I saw him, and he immediately told me I wasn’t crazy! He believed me! He had trained under the original pelvic pain specialist at their clinic, but decided he didn’t want to give up delivering babies, so he had pelvic pain experience. I was about 32 and he asked me if I was finished having children. I said I wasn’t sure. He asked me, “ What about your husband?” I answered, he is done. Then he said, “ I think you should listen to your husband.”  He finally talked me into a hysterectomy at 35 to get rid of the constant pain. You couldn’t even touch my stomach lightly without excruciating pain. As kind and wonderful as he was, he also doubted I had bad endo. He said he didn’t think the surgery would take more than 20 minutes, so I was scheduled to do a breast reduction at the same time, and he would leave my left ovary. Well, it took 3.5 hours. I have stage 4. They canceled the breast reduction because of the extent of the hysterectomy. My right fallopian tube was completely blocked with ruptured cysts. He left my cervix adhered to my rectum, my right ureter was so smashed up with endo that they didn’t think it was working, so they gently pulled it apart and made sure it was working. He later said to me, “How in the world did you ever get pregnant?” He called my husband during the surgery and asked if he could take my left ovary, but my husband said no, please honor her wishes to keep it. He convinced me a year later to remove it. I still don’t understand the logic behind removing my ovaries and then filling me with HRT. HRT is another extremely imperfect science. I have struggled greatly to manage it. I have finally found someone doing it in a way I agree with, but it took 10 years of trial and error. As imperfect as this process has been, I will forever be grateful for this doctor because he always believes me when I say something hurts, and he always tries to help me.

 I am proud to say I found my voice once I was finally diagnosed with a severe case of stage 4 endometriosis after 20 years of no one believing me and no one helping me. I do my own research now, I learn about my conditions, and I speak directly and assertively to doctors now. If they don’t believe me or don’t listen to me, I fire them and do my research to find another doctor who has more knowledge on the subject. The first surgery helped immensely with pain. I had a boggy uterus full of adenomyosis, and that pain that was constant and affected sex and just everyday living was immediately fixed by the hysterectomy, but I continued to have severe bladder pain. I went back and forth between the pelvic pain specialist and the OBGYN who performed my surgery. I preferred the OBGYN who did the surgery; he started giving me bladder instillations, which is just a cocktail of medications that he inserts directly into my bladder via catheter. I do believe it helps some, but I was having, what I have now learned are bladder spasms. I was desperate for pain relief. I lived on a heating pad, and occasionally I would have pain pills to dull the pain a little. You can spot a chronic pain patient because we don’t abuse our pain pills; we hoard them for when something happens, and no one will help us. That’s a whole other topic that I am very passionate about.

I am now 45 years old, 2 years ago, I was at the end of my rope. I was asking my OBGYN to send me to pain management. But I’m also a fighter, like all of us on this journey. I took one last chance to consult a doctor in NYC (I live in Birmingham, AL).  So at age 43, 8 years after my hysterectomy, I consulted a doctor who recommended a urologist to me who would put in a neuromodulator on my sacral nerve to help combat the bladder spasms. Now my pelvic pain specialist in Alabama can also do this procedure, but had never recommended it, and for several reasons, I chose the doctor in NYC to do the procedure. So two years ago I had that neuromodulator placed on my sacral nerve and ya’ll it works!!!! I would estimate 95% less bladder pain.

 At that first appt in NYC, the doctor, who is a real endometriosis surgeon, did an ultrasound and discovered an endometrioma on my bowels and the fact that I still have part of my uterus left inside me. I had never been told that.

Now, over these years, I have developed quite an endo belly. When I asked my OBGYN in Alabama about it, he dismissed me and said to go back and look at how my grandmothers carried their weight as they aged.

So I had an MRI of my pelvis for a different reason this year, and I sent a copy of the report to the doctor in NYC and made an appt b/c I wanted to know if and how much endo he saw left inside of me. I already knew that my cervix was adhered to my rectum, which the doctor who performed my hysterectomy deemed it too dangerous to mess with during my hysterectomy.  I am thankful that he didn’t; if he didn’t know what he was doing, I’m glad he left it alone. The surgeon in NYC could clearly see a large endometrioma that was left on my bowels, and the thing about an endometrioma is that it produces its own estrogen and proliferates on its own.

So now, 10 years post-first operation, I knew it was time to have another surgery. I don’t have an answer as to why other than “I just knew it was time.” I was constantly consulting a local GI doctor about very severe constipation, taking prescription meds for it, and still having to use strong laxatives every few weeks. I decided to do the surgery with a surgeon in NYC. He ordered multiple GI tests prior to. There was a spot on my stomach that I showed to the GI doctor and my OBGYN, and said, “It hurts here.” Neither even attempted to acknowledge or answer me.

On January 6, 2026, I had another surgery, this time with an excision endo-specialist and his team in NYC.  I knew my bowels were covered, I knew I had an endometrioma that was proliferating, I knew I had pain in a specific spot. I knew I suffered from extremely severe constipation.  Post op, they told me the exact spot I pointed to and reported pain was the location of my bowels twisted like a towel being wrung out. My bowels were partially obstructed, and they worked carefully to untwist them and remove the endo on them.  As they got all the endo off of my bowels, he found my bowels to be in poor health and had to stitch them up to reinforce their stability. Once again, they found far more than they bargained for. I would like to point out that not much showed up on an MRI, CT scan, or ultrasound. So I desperately want to educate obgyns and women that negative imaging doesn’t mean you don’t have it. Exploratory laparoscopy by a highly trained endo specialist is STILL the only way to get an accurate diagnosis. I had 2 huge surgeries that shocked the surgeons both times.

So I’m only 10 days post op and I feel great! My massive endo belly is shrinking by the day! I am in zero pain. I am able to have painless bowel movements. I’m really just beginning my new life. I would like to point out, meaning no offense to any of the doctors that I have seen, that if I had not had the courage to seek help from an endo specialist, I would be sitting here with a growing endo belly, increasing pain and inability to have a bowel movement and I just don’t know how, when or if they would have ever discovered the twist in my bowels or what that could have led to. It certainly wasn’t a lack of me asking for help.

I have 2 teenage daughters whom I consider miracles. I’ve been told statistically, they have a 75% chance of getting it because I have it. One shows no signs, but the younger 14-year-old one showed very severe symptoms. I am so thankful to have found endo specialists who we found to help her. She had her own surgery on October 10, 2025, where they found 13 lesions and adenomyosis. But I’ll let her tell you her own journey in her own words. One of my greatest gifts to her was never once doubting the depth of her pain and suffering and never allowing a single doctor to gaslight her. She is the beginning of a generation that I hope will not suffer as long as many of us have.