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The Most Awful Moment in My Journey With Endometriosis

I have had endometriosis for about 10 years now. And in that time, I can honestly say I have received less than quality care and much judgment, with a topping of lack of understanding. Because of course there isn’t a huge pool of people who are well trained on women’s health, and that pool gets smaller when it comes to complex women’s health issues. And when we have flare ups, we pray we get doctors who understand and who will treat us fairly. However, that doesn’t always happen.

There is a specific moment in my journey with endometriosis that was absolutely awful. I had been having extreme pelvic pain, nausea, vomiting and a slight fever. I went to one emergency room and the doctor on call did a botched pelvic exam and said I needed antibiotics. He totally neglected my health history and blood work, which showed no signs of an infection. Didn’t even do any imaging.

The next day my pain intensified to where I was immobilized on the floor in pain. I called a friend to meet me at the ER. I called 911 to come get me. I get to the ER and the they do their intake and initial exam. They give me some pain meds and then this doctor comes in and wants to do a pelvic exam. I tell him that I’m still in excruciating pain and would need to either be sedated or have more pain meds for him to do this. I also try to tell him about my history with endometriosis and adenomyosis and he stops me. He did not care. He continued to neglect my history and accuse me of being a sex worker and being very promiscuous, none of which was true, and he said I probably have chlamydia. This doctor would not listen and wanted to yell at me, while I’m in pain and feeling nauseous, to where the nurse stepped in. At that point he threatened to have us both arrested. If my friend had not stepped in, I don’t think he would have stopped.

I had never been so humiliated as 1) a woman and 2) a patient. This showed just how much that women are not taken seriously and mistreated when it comes to our illnesses, especially endometriosis. I have been told all sorts of things: it’s in my head, the pain isn’t that bad (I subsequently passed out after that), there is nothing wrong with you (and had a cyst rupturing) and the list goes on.

In this instance I, would not let this doctor touch me. I gathered my belongings and went home and just cried. The next day I went to my doctor’s office and waited to be seen. I found out I was having not only a bad endo flare, but I had developed bad fibroid, which were causing my pain. I also had a small cyst that had ruptured. So, this was not all in my head, I didn’t have an infection and this was not because he claimed I was a sex worker (even though I’m not, there is no shade to anyone who is, but it is not my chosen profession).

As for the doctor, I not only filed a complaint with the hospital but with the board of medicine. I got a letter from the hospital a few weeks later saying he was terminated. This made me feel very validated as a woman. I know this was not my fault! And I know if he treated me this way he had to have treated others like this as well.

Endometriosis is a hard disease to live with because it’s not easily seen or diagnosed. We have to fight to be heard and understood. So when we have experiences like this, it pushes us back to square one. I pray no woman ever has to go through this in their journey. I pray no woman has to fight as hard as I have to be heard and have their symptoms validated. And I hope this piece raises awareness to practitioners on how they treat us and makes them change their approach.

Getty image by Olli Turho

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