If I had a dollar for every time someone with a medical degree told me that the pain and other symptoms I was experiencing were “all in my head” or “not serious” or “just tight muscles,” I could retire today. But sadly, it’s never been “in my head” or “not serious” or “tight muscles,” it’s been endometriosis. What’s even sadder is that I know I’m not alone. Millions of women out there are regularly being dismissed and not taken seriously by their medical professionals and are, instead, left to suffer in pain.
My endo journey began in my teens, but it wasn’t until my early 20s that I started to seek out help for it. What began as heavy periods and severe pain during my period slowly morphed into pelvic pain throughout the month, cold and flu symptoms, coughing, shoulder pain, bladder and bowel problems, headaches, extreme fatigue, bloating and a multitude of other symptoms that would leave me bedridden for days at a time. They say it takes, on average, about 10 years for a woman to get diagnosed with endometriosis and in my case that’s about right. I went to doctor after doctor and while the increasing symptoms should have prompted more action from them, they actually prompted less. With every new symptom came a doctor who, upon hearing about a symptom that wasn’t painful or heavy periods or pelvic pain, would wash their hands of me claiming that my issue wasn’t gynecological. After years of searching, I finally found a doctor knowledgeable enough to recognize that it could be endometriosis. She performed a laparoscopy and sure enough, there was the endo I had known I had for years. Unfortunately, this doctor wasn’t quite as knowledgeable as I thought and in attempting to remove the endometriosis performed a procedure that made me unable to have children. She didn’t bother to tell me this or to alert me to the fact that if I had fallen pregnant in the years that followed, I would have likely experienced life-threatening complications.
Thankfully this is not something that became an issue, and the surgery bought me a couple of years of reduced symptoms. However, like most people with endo, my symptoms soon returned. By now I had figured out that I needed to seek out an endometriosis specialist instead of just an OBGYN who said they dealt with endo, so I tracked one down and began the 11 months wait to see him. He ended up performing a hysterectomy and, at the same time, also diagnosed me with Interstitial Cystitis. At the time the hysterectomy was a god send. He was the first doctor willing to do it – all the rest kept trying to “preserve my fertility just in case,” despite me wanting the hysterectomy. But what I didn’t realize at the time was that having a hysterectomy would make it next to impossible to get any future treatment.
See hysterectomies aren’t curative. Do they cure endo for some – probably, but they aren’t an actual cure. But it seems like very few doctors understand this. I went about 4 years endo free before those familiar symptoms started to reappear again. Like most (I assume) who suffer from chronic pelvic pain conditions, I had become an expert at differentiating between the pain of endo, the pain of IC and the pain of pelvic floor dysfunction. So, when that pain popped back up, and was quickly followed by the cold and flu symptoms, the fatigue and everything else, I knew it was back. Naively, I assumed it would just be a matter of seeing an endo specialist, who obviously would know a hysterectomy wasn’t curative, and having another laparoscopy. Boy was I wrong.
My old endo specialist had left the practice by this point but the guy who replaced him was someone he had trained, and the staff very enthusiastically informed me that he was a “world renowned endometriosis specialist.” (I am still searching for confirmation of this claim). After another 8 months of waiting, I finally got in to see him and started describing all my symptoms. Initially he seemed ok and scheduled me for a pelvic ultrasound. For those who don’t know – endometriosis doesn’t always show up on scans and so a negative scan means absolutely nothing when it comes to whether you have endo or not. Sure enough, other than a mass on my right ovary which he immediately dismissed as a “simple cyst,” my ultrasound was clean. The minute he got the results it was over. He arrogantly explained to me how the hysterectomy should’ve gotten all the endo out and I “probably just had tense muscles.” With every symptom I referred to, he patronizingly explained to me that “if I had those symptoms” (as if I was lying for what… fun?) they would indicate a rare form of endo and so I couldn’t possibly have that. He never actually explained why I couldn’t have a rare form of endo, but the impression that I got was that because of the hysterectomy, the possibility of endo, let alone rare endo, just seemed unfathomable to him. In the end he refused to offer any treatment other than physical therapy, despite me explaining that I had done PT for two years with no relief. I left that appointment feeling about 3 inches tall and completely deflated. But I knew my body, I knew something was wrong, so I tracked down another endo specialist and began the waiting process again.
I went to the appointment with the next specialist with a friend in tow, just in case, but she spent two hours poring over my medical history with me and I left feeling hopeful. However, the follow up was a disaster. Somehow, between the time I saw her the first time and this second appointment she had made up her mind that all my problems were related to my pelvic floor muscles and nothing and no one was going to talk her out of that. When I pointed out that muscle issues wouldn’t cause cold and flu symptoms, she dismissed me saying that “even if there was endo in there, it wasn’t the problem.” I left that appointment even more deflated than the last. My friend followed, still picking her jaw up off the floor, shocked the way the doctor had treated me. She was new to this; I couldn’t blame her. I however, had unfortunately been dealing with dismissive, arrogant doctors like her for years. This was nothing new.
I’m not going to lie. After this appointment the hopelessness and helplessness set in. I knew the endo was back. I knew my body and I knew something wasn’t right, but no one was listening and their gaslighting was starting to get to me. So, in an act of pure desperation, I booked a consult with a very well-known endometriosis clinic in New York, figuring that if they told me that nothing was wrong then I would believe them because they were actually world renowned.
That appointment wasn’t cheap, and I knew I wouldn’t be able to afford to have surgery with them even if they were willing to operate, but I just desperately needed someone qualified to tell me I wasn’t crazy. Sure enough, they were amazing. The doctor didn’t brush off a single symptom, didn’t for one second give me the impression that she didn’t think I had endo and even floated the option of taking my ovaries to try and calm the endo. She was willing to operate. She believed me. As devastating as it was to know that I could not afford to have surgery with her, I also got the strength and confidence I needed from that one conversation to continue fighting. So, soon after, I booked with another doctor.
I believed that this doctor was an endo specialist but upon arriving at the appointment she immediately informed me that her online bio was wrong and that she didn’t specialize in endo. I though the appointment would be over before it even started but instead, she sat down and asked me to tell her what I was going through. And she believed me. This non-endo specialist doctor believed that I had endo. So, she offered to go in and take my ovaries and while she couldn’t excise any endo she found, she said she would take pictures of it to help me get a specialist to listen to me. I jumped at the chance. Before the surgery she scheduled another pelvic ultrasound which again revealed the mass on my ovary. She also said it was probably a cyst, except this time she also said it could be an endometrioma.
Ultimately, I decided that, since the pain was worse on my right side, I would only have my right ovary removed as the serious health problems that can result from surgical menopause weren’t something I wanted to add to my plate. Three weeks ago, I underwent surgery with this doctor and what she found shocked even me. Firstly, she discovered that the mass on my ovary that the first “specialist” had dismissed as a simple cyst, was actually a benign tumor that, if left, would’ve probably turned malignant. Secondly, she found deep infiltrating endometriosis on my right ureter. This was big because not only was I right and the endo was back, but endo on the ureter can cause an obstruction that can kill your kidney. Had I listened to the first or second “specialist” I would likely have wound up with one kidney and ovarian cancer. Now I am staring down the barrel of yet another surgery, not only to excise any endometriosis but also to resect and reimplant my ureter. Rather a complex surgery for someone who “couldn’t possibly have endometriosis” or who’s “endometriosis wasn’t the problem” wouldn’t you say?
I feel so much relief knowing now that I was right, but I am also so angry. It is absolutely ludicrous that it took a non-endometriosis specialist to diagnose these problems that the endo specialists should’ve been all over. It is absolutely ludicrous that, even armed with photos, I am still scared that I will be dismissed and patronized when I see the next endometriosis specialist next week. And it is absolutely ludicrous that my story is not unique. I am not an exception, this is common. Women all over the world have similar stories to mine. Sure, no one is probably going to match my story identically but that’s the entire point. Endometriosis is so much more than just painful periods. Its symptoms are vast and present differently in everyone. Yet very few doctors understand this. If you don’t match their “textbook” version of endo, then you can’t possibly have endo.
My story illustrates how important it is to advocate for yourself. You know your body best. You know when something is not right. If I had stopped advocating for myself, I may have lost a kidney and developed cancer. But my story also illustrates how exhausting and demoralizing and lonely it can be trying to make doctors hear and believe you and just trying to cope with this disease. This is where I come in. You don’t have to do this alone. Whether you are trying to advocate for yourself or make a tough treatment decision or just trying to cope with the disease and its vast range of symptoms, I am here and I already believe you. I will listen, I will help and I will make sure you are not alone in this fight.