Self-Advocacy & Endometriosis
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Women’s health issues are not given as much consideration, time, or funding as our male counterparts. We can point fingers and get angry or we can unite forces and create a movement of change. I choose the latter, I choose to be a voice, I choose to be a difference maker so that, perhaps, another woman won’t have to go through what I went through before she receives the proper medical care she needs.
Endometriosis. An estimated 8 out of 10 women are affected by this disease that I knew absolutely nothing about until I was in my mid-twenties. I heard it in passing on a walk with a friend of mine who was having difficulty getting pregnant and said it was due to endometriosis. That was the extent of the conversation and I still didn’t really know what it was.
Fast forward to my early thirties, I had three children in three years and no difficulty getting or staying pregnant. My periods started to get increasingly heavy after my second child and the contractions of post labor pains were much more intense then after my first. I was told this was normal and that with each subsequent pregnancy the periods and post labor pains would get worse. Five months after the birth of my third child I bled through a super plus tampon every 45 minutes for 24 hours straight. The cramps felt like severe contractions, I was having hot flashes, and I felt extremely nauseous and light headed. I excused myself from a meeting early, trying not to panic, and called my OB-GYN. She had me come in the next morning to test for every sort of thing she could think of. I feel extremely blessed that I had an open minded and incredibly caring OB. Many women do not have this experience.
I went home from my meeting and Googled all my symptoms and Endometriosis popped up. At first, I dismissed the thought because I had had no fertility issues and I believed that was the major symptom of endo. The truth is that is when most women are diagnosed – when they try to become pregnant to no avail and go in for further testing. All of the tests run by my OB came back negative but there was something “concerning” in my pap so they called me back to do a colposcopy. The procedure itself was relatively painless and then the contraction type pain hit again. I was curled up in the fetal position on the floor of her office for 45 minutes. The nurses and OB were wonderful and I told them that the pain would pass if I could get my body temperature down and just lay there for a while. Once the pain subsided I drove myself home.
After that incident I went back to having heavy periods but I thought it was because I was no longer exercising as regularly as I had when I was younger and before I had children. We moved to a different state in the Fall and things seemed normal-ish. I still had terrible hot flashes all month long and my periods were heavy during which I was often nauseous and sometimes vomited and I was constipated. My symptoms became worse over the course of the Fall and I was having difficulty eating due to constant nausea. Sugar and alcohol would cause incredible bloating in my lower abdomen and I would feel ill shortly after consuming them. I went to my primary care doctor who ran all the tests and one came back positive – Lyme.
I had late stage Lyme disease and was immediately put on antibiotics. After recovering from Lyme, I assumed that most of my symptoms would go away. I began running again and could feel myself starting to reclaim my health. Over the summer I still noticed that many of the symptoms were not going away which meant that they were not caused by Lyme. I went back to my primary care who ran more tests, all of which came back normal. She referred me to a GI specialist who did an endoscopy which came back clear but there were the beginnings of an ulcer.
By this time there was much tension in my marriage, my anxiety and stress levels were through the roof, and my relationships with my family were suffering. My primary care believed that many of my symptoms could be explained by simple anxiety and that I probably had a mental disorder that was being left untreated and they recommended therapy.
I was devastated that the people around me thought that I was making up my symptoms and I cried, ugly cried, in the shower for a long time. Then I began to think that maybe they were right. Maybe I had given myself an ulcer, persistent nausea, hot flashes, inability to eat, bloating, constipation, and cramps. Maybe it was all stress and I made it up in my head. Then I got angry. I was angry that no one knew what was wrong with me, I was angry at my doctor for not believing me, and I was angry that I felt alone and in charge of my own health care.
So, I did what any angry normal sick person would do, I asked Google. And you know what? Google listened. Google told me that every symptom I was having was Endometriosis. I went on two of the mom groups I was a part of on Facebook and posted my story and asked, plead, begged for help.
A savior came.
She private messaged me and told me all about the new research being done and the new treatments being performed on patients with Endometriosis. She introduced me to the Facebook group, Nancy’s NOOK. It is the PREMIERE information site for Endometriosis research. When I found Nancy’s NOOK I immediately spent hours pouring over all of the files of information about Endometriosis and realized that I had had these symptoms my whole life but never realized they weren’t “normal” because NO ONE TALKS ABOUT THEIR PERIOD.
I had difficulty breathing when I ran, I had a tingling sensation in my foot, when I gave birth to my third child I thought my ass was ripping in half even with an epidural.
ALL OF IT.
I am extremely blessed and fortunate that there are three doctors who perform excision surgery in the Boston area and that is where I met Dr. Chatburn. I was so anxious and nervous for my appointment, fearing that he too would run all the tests and it would all come back clear. That he too would tell me I was imagining symptoms due to the stress of being a working mother with young children. He did none of those things. He let me tell my story, he listened, he handed me a box of tissues, and he told me that he believed, without a doubt, that I had Endometriosis. He scheduled me for laparoscopic surgery for January 12, 2018.
I didn’t believe him, I didn’t believe that he would find it, I had doubted myself for so long that it was hard to have hope. I also did not experience the debilitating pain that many women experience who suffer from Endometriosis. I felt like a fraud when I visited the support group forums and hesitated to post anything in case they found me out! I ran a lot leading up to surgery. I ran because I think my mental health depended on it. I ran to prove to myself that I was strong, beautiful, and not crazy. I ran five miles the day before surgery and then I went in terrified of what he would or wouldn’t find.
He found endo. Everywhere. He found endo on my diaphragm, on my sciatic nerve, on my ribcage, on my bladder, my intestines were glued to my pelvis from endo and my vagina and anus were glued together from endo. My pelvis was riddled with it. The only place I didn’t have endo was on my ovaries and fallopian tubes, which is why I was able to have children. When I woke up from surgery the first thing I asked was, did he find it? My husband held my hand and said, “He found it babe and he got it all out.” I cried and passed back out. I’m crying now typing this story. I’m crying happy tears, frustrated tears, and hopeful tears.
Ladies – if you have irregular periods, infertility issues, pain when you pee, IBS
symptoms, cramps that cannot be tamed with Midol, heavy bleeding, constipation or diarrhea, nausea, hot flashes, and more around your period/ovulation then you need to go to Nancy’s NOOK and find yourself a proper doctor.
I won’t go too much into the treatment here because I am not a doctor. What I will say is that ablation might not work. Pills might not work. Hysterectomies might not work. Excision is the ONLY proven way to rid the body of endometriosis which is now believed to start in utero. It does not show up on an ultrasound and can be difficult to see even laparoscopically unless the doctor is properly trained. It takes the average woman affected by endo over eight years
to be diagnosed correctly. Medical schools and nursing programs still teach pregnancy, hysterectomy, or ablation as the only three options for treatment.
In my opinion none of these have proven as effective as excision.
There are only a handful of doctors who are trained in excision surgery and that needs to change. Do not stop fighting until you have the answers. You are worth it; your life is worth it. YOU know your body better than ANYONE else and you need to listen and advocate for it. You are beautiful, strong, and powerful. Don’t take no for an answer. You didn’t make this up. It is real.
Written by Sarah Segesdy @strengthnhersole
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