Have you had an endometrial ablation within the last few years?
If so, you may have or have had some strange and seemingly unrelated symptoms.
My goal in writing this is my desire to share what I only wish I knew earlier. About 2 years after my body’s blissful response to the Endometrial Ablation (EA), I woke up one morning to crippling back pain and a massive menstrual cycle. What scared me was the fact that I had not had a single period since the procedure 2 years prior. What was happening?
My GYN did a hysteroscopy which provided an inconclusive biopsy due to the scarring. Her next move was to schedule a hysterectomy, calling it post-menopausal bleeding.
Here is where things got sticky. By the time the procedure was scheduled, I had had 3 recurring, normally timed small periods (they would never be what they were before pre ablation), and I had never had a single hot flash. I wasn’t buying the concept of post-menopausal bleeding. I pushed for blood work for FSH and estradiol levels (bloodwork to test the menstrual phases), which clearly indicated that I had more than enough estrogen in my body to continue to get periods, and that I was indeed not post-menopausal “on paper”. I was only 47, and even though the average age of menopause is 51 years, which was close enough, still none of it was adding up.
I sought a second opinion from a world class hospital. The doctor there suggested that the return of menses is totally normal after an ablation; the endometrium can grow back, and periods can resume. He was very clear that I did NOT need a hysterectomy and suggested that he track me if I did not want to go forward with the hysterectomy.
What does a person do with 2 diametrically opposed medical viewpoints? A wise medical acquaintance of mine said I needed to get a tie-breaker opinion so that I could feel comfortable making this big decision. Sadly, the third opinion doctor was non-committal and said that she could see it either way. Clearly, she was no help whatsoever, and it did not provide the guidance that I was hoping for.
As the months rolled on, I continued to have a mostly normal pattern of menstrual cycles for a woman my age. I felt like I had made a right choice. By 3 years post ablation, I ended up having 2 severe episodes of bloating and pain in my abdomen so bad that I landed in the ER. I had called my GYN first to try to be seen, as I remember describing to her, “it feels like my body needs to have a period but nothing will come out”. She dismissed me quickly, told me I had gas, (which had then been for 5 days straight), and told me to get a gastro consult, and assured me that my symptoms had nothing to do with gynecology. She advised me to go to the ER.
To share some insight, I had to sit with my legs apart to be comfortable, like when a woman is 8 months pregnant! The pain was intense from the top of my abdomen all the way to my pelvis. I literally looked 6–8 months pregnant. I could not bend over without terrible pain. ER found nothing and sent me on my way citing I should do a gastro follow up soon. Remarkably, by day 7 of symptoms, I was perfectly fine again, as if I was crazy and imagined the whole thing. My “ghost” period without the bleeding had ended. I just didn’t know it. This happened 2 other times as well over the course of 18 months.
Fast forward to my journey to date. My GYN has warned me to get the hysterectomy that I probably have cancer and don’t know it. My Yale doctor still says if you were my wife, I would tell you not to have it. What do I with that??
After countless unnecessary gastro related medical tests, I am lucky enough to have connected some dots here while doing research. I have Post Endometrial Ablation Syndrome. My GYN casually mentioned as she was walking me out the door during my recent visit that there is thing called PEAS. It took her four years to say something???
Incensed from her casual approach, I decided to dive into research and find answers. I found a PEAS support group online, and have learned there is a pending class action lawsuit against the manufacturer of the device used in my procedure. The stories these women have shared are horrifying, and some doctors and patients themselves don’t even know that this condition exists. It has been discussed in medical journals that it is an often-missed diagnosis because the ablation occurred so far away from the onset of these related ablation failure symptoms. In fact, it has been reported that a standard MRI or abdominal ultrasound does not show the trapped blood within the uterine cavity, making it all the more difficult to resolve and satisfy the reason behind the pain and bloating.
For some context about PEAS, some women experience cyclical pelvic pain during the time of their periods that is debilitating and crippling. I have learned that the very scary bloating that I have experienced is a very common symptom and often women are wearing clothes 2 sizes larger to accommodate their waistlines. Women can’t sit down or bend over; the stories go on and on. Most women end up having hysterectomies, and many have had bowel and other organ adhesions due to the procedure itself. It is overall a messy picture.
What I have learned, (and I AM NOT A DOCTOR, and am not making any medical claims here), in very simple terms, is that the blood from your cycle gets trapped behind the scarred tissue and it can’t escape. I have read that it takes less than a teaspoon of blood to cause terrible pains. Why my GYN, who administered the ablation, never mentioned this syndrome when I presented with massive abdominal pain and bloating and an explanation of “It feels like my body needs to have a period but nothing will come out”, is shameful to me. I have been on a 4-year wild goose chase of trying to learn that is wrong with me, and to prove to myself that I am not a crazy person with a bad case of gas!!
I hope this article helps at least one person, if not more, who may be suffering without the knowledge and understanding that this syndrome exists. Please seek help as needed.
