The symptoms of endometriosis that almost no one is talking about.
I have had endometriosis since, I believe, my first period. I don’t think my periods were ever normal, however the endometriosis got worse and worse over time. For those who don’t know, endometriosis is a disease in which the uterine lining, the part that is shed during menstruation, grows outside of the uterus.[1] It can be an extremely painful, debilitating condition that affects roughly 190 million women throughout the world.[2]
In recent years, education and awareness around endometriosis has been growing. Yet, in my opinion there is still a long way to go before medical professionals and others are as informed about it as I would like them to be. For a disease that affects roughly 10% of the world’s population, it often takes women years to be diagnosed or even taken seriously.[3] In fact, it takes women an average of 7.5 years from the onset of their symptoms to be diagnosed with endometriosis.[4] While this may seem like a long time to you, honestly to me it feels short. I wish I had been diagnosed within 7 years. I wasn’t diagnosed until well into my 20’s and I am guessing many other women can relate. There are many reasons for this, from ignorant doctors, to this being a disease that only affects women, to the fact that surgery is the only thing that can provide a definitive diagnosis, yet that is a topic for another blog.[5] While I have encountered all of these hurdles, I’ve also encountered something else that I believe played a major role in doctors taking so long to diagnose me: unusual symptoms.
Most often you will hear about endometriosis symptoms such as painful periods, pelvic pain outside of menstruation, heavy periods, pain during sex, pain in the lower back and legs, fatigue and bowel/bladder pain during periods.[6] I experienced all of these. But I also had other symptoms. Symptoms that doctors told me couldn’t possibly be related. Symptoms that caused doctors to tell me I couldn’t possibly have endometriosis because I had these symptoms.
I’ve had a hysterectomy now, which by the way is not curative – I need more surgery. But before my hysterectomy I could tell exactly when I was going to get my period and when I was ovulating, so precisely that I could cancel plans ahead of time or take an ovulation test and have it be positive. It wasn’t that the pain had started – it hadn’t. Actually, the first symptom that I had was sore gums. They were followed the next day by a sore throat that came and went, a cough that came and went, body aches, a headache, congestion, nose bleeds and fatigue so bad I couldn’t stay awake and even sometimes a low-grade fever. I felt like I had the flu, except these symptoms would come predictably in order and come and go, sometimes lasting only a few hours, sometimes a couple of days. Even as I sit here now, writing this, I have a sore throat and some minor congestion. I know by Saturday (it is Thursday) I will be in a full-blown flare. Even though I don’t have a uterus anymore and only one ovary, I unfortunately still have everything but the actual period. In fact, these mini “flu’s” that I get, are sometimes more disruptive than the pain. Sometimes I am literally unable to move off the couch for a couple of days because I am so sick and so fatigued that I can’t keep my eyes open, let alone get up and do anything. I realize that you might be thinking that I am just a sickly person that has the flu a lot but here’s the thing, I get these mini “flu’s” twice a month, two days before the ovulation stick shows positive and two days before my period begins and this has been happening for over 10 years now. No one is that scheduled as to when they get sick.
Although I knew that my symptoms were clearly linked to my endometriosis, doctors did not agree. Over and over again I would tell them about these symptoms, the regularity of these symptoms, the strange order they appeared and the coming and going nature of them, and doctors would dismiss me. They would tell me that these were not symptoms of endometriosis and that I must have just had a virus. “Yes doctor, I’ve had a 2-day virus, every two weeks, for 10 years now that just happens to coincide with ovulation and my period.” When I say it like that it sounds ridiculous – of course these symptoms are linked, yet doctors would not listen to me.
So, I began to research myself. But all I could find were forums where other women with endometriosis were discussing similar symptoms and similar dismissals by their doctors. In fact, even now, a quick google search has only turned up one article about these symptoms that is not a discussion board.[7] That is not to say there aren’t other articles out there. But it does seem likely that big names such as Mayo or Cleveland Clinic aren’t talking about these symptoms in relation to endometriosis. In fact, the only “big name” person I could find that does recognize these symptoms as signs of endometriosis is Dr. Tamer Seckin, who is well known as one of the world’s leading experts on endometriosis.[8] However, to find this I had to type in “cold and flu, endometriosis, Seckin.” In other words, what I am saying is that not enough “experts” on endometriosis are recognizing these types of symptoms as linked to endometriosis.
Dr. Seckin explains that these symptoms are likely symptoms that result from inflammation in your body caused by the endometriosis bleeding outside of the uterus.[9] That makes complete sense to me. So why are other experts not talking about this? Why are so many women being dismissed or sent elsewhere when they talk about these symptoms?
Honestly, I don’t have an answer for you. I wish I did. It’s infuriating. If doctors had not dismissed me, if they had not sent me to other specialists, telling me that because of these symptoms I probably had chronic fatigue or a virus or even depression, then I may have got a diagnosis earlier. I may not have spent years and years suffering alone and feeling like I was the crazy one. So, I am writing this blog to firstly shine some light on these symptoms but secondly, so that anyone else out there that is experiencing these types of symptoms and being dismissed knows that you are not crazy, and you are not alone. Cold and flu-like symptoms can absolutely be symptoms of endometriosis. I’m living proof. If you need someone to talk to or someone to help you find a doctor who will listen or help managing your symptoms, please reach out. I get it and I can help.
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