To the doctors who didn’t believe me
I first went to you in the summer of 2018.
I wanted to try a different method of birth control because my cycles were irregular and painful. I thought this would have been a simple request.
You spent five minutes with me, rushed through my pap smear, and didn’t explain anything to me. When you reached inside me, you were not gentle, which would cause me to have vaginismus. This was my first real gynecological appointment. You knew about my bipolar diagnosis. I was treated like a child, typical of someone with a disability.
The pain did not stop. In fall of 2019, my left ovary felt like it was exploding. The pain got drastically worse from the year before. I went back to you for help. I wrote down a whole list of my symptoms, tracked my cycles (and lack thereof) in my phone, and made arrangements with my primary care doctor for you to help me. Again, you spent five minutes with me. You didn’t even bother to do a pelvic exam. I told you that birth control pills were not helping me, and you were upset with me about that. At the end of my appointment, you told me that my primary care doctor “should try to figure it out.”
My PCP ordered an ultrasound and bloodwork for me, because you didn’t, even though you are a gynecologist. My ultrasound (my second) was rough and painful, and would also contribute to my vaginismus. The tech didn’t ask if I would like to put the imaging wand in myself or not, or tell me she was putting it inside me, so I don’t know if that counts as sexual assault or not.
I felt so unwell because of the pain that I missed the final two weeks of the fall semester, the first year of my PhD. You called me during finals week only to tell me that my ultrasound was normal and that there was nothing you could do for me. You tell me that my pain was probably from stress from my bipolar disorder, and to go to a gastroenterologist because the pain was on my left side.
I know my body; I’ve lived in it for 26 years. I can tell digestive pain from menstrual pain. I’ve been menstruating for 17 years. I know that there is something wrong.
My gastroenterologist was helpful for me — at least she believed the amount of pain I was in. She ordered a colonoscopy and, as I expected, it was normal.
The pandemic started in mid-March, and so did the six month-long period that I was about to have. You first told me to stop my pills for a week, which didn’t work. You then gave me a week of estradiol, which probably caused more harm than good in the end.
I called your office several times a week, because you weren’t listening to me. I almost failed my spring semester because of the pain. I had to be excused from two of my term papers because I had to lie in my bathtub with a towel between my legs. I was immobile for about six months because of this.
You made me get another ultrasound done, which I was uncomfortable doing, but I agreed. That ultrasound was much more painful than the first. You called me a day later to tell me that I probably have PCOS, but you didn’t want to officially diagnose me because that should be the job of my primary doctor. You do not mention if you are going to follow up with me on this, if you are going to change my birth control pills, or if there was anything I could do. I had to go to Nurx and ask their doctors if there was a pill that was best for PCOS, which should have been your job.
This new pill didn’t help my pain, and you told me to go to the emergency room, knowing full well that women are treated like shit by emergency room doctors. I agreed to go on the condition that I would be able to finally get an appointment with you.
When I went to the ER, I was in so much pain that I was throwing up, which continued until September. The ER doctor told me that since it wasn’t appendicitis or a fecal impaction, there was nothing she could do for me. She said that there was no way I could have endometriosis because my uterine lining looked normal. She told me, “I don’t know why you are in pain.”
And what else was I expecting?
When I finally see you (five days later no less), you tell me that my pain might possibly be a hernia (although I have never had abdominal surgery, or have been pregnant). I was confused by this, because it did not explain the absurd amount of bleeding that I was experiencing. You finally agree to order a cat scan for me.
After I completed the scan (and I even explained to the tech that endo isn’t caught by imaging devices), you call me and tell me that my scan was normal and you didn’t understand why I was in pain. I begged you to send me to an endo surgeon. At this point, I had lost all faith in you. I don’t trust your PCOS diagnosis, or anything else you mentioned previously. I don’t know why I kept trying.
You finally agree to send me to a surgeon, and I had my laparoscopy in July, where they found stage IV endometriosis and a cyst on my left ovary. Stage IV endo is the worst possible scenario. I had a frozen pelvis, meaning that my bladder, uterus, and colon were fused together.
My surgery was six hours because there was so much endometrium in my abdominal cavity.
I could have lived without so much pain, had you believed me in the beginning. You went for simple, lazy answers to my questions because you didn’t take the time to actually listen to me. You gaslighted me and made me think I wasn’t in true pain. You blamed my pain on my bipolar disorder and PMDD, thinking that I was a psychotic bitch when I got my period. You treated me like I was just some ignorant girl who didn’t know anything about my body. I don’t know how you have a five-star rating on Google, because you obviously don’t listen to women who are in pain. You spent a total of twenty minutes with me and thought that you knew what you were doing, even though I have lived in my body for 26 years and knew something was wrong. At the end of it all, you made me think I was crazy.
You tell me that I should recover from my surgery in two weeks. I count the days down, trying to get the gas out of my abdomen and the liquid out of my belly button. Still, I do not feel better.
I read Facebook and Reddit posts by other women who have had laparoscopies, proclaiming that they felt their pain totally dissipate a few days after surgery. I ask a few times why I am still in pain. These posts go unanswered.
I had a follow up with you in late July. You put me on Orilissa because I was still in pain twenty days later. I am agreeable to this because I was still bleeding uncontrollably on birth control. You spent not even three minutes with me. Our only exchange during that visit was to use condoms while on Orilissa. You didn’t look into why I was still in pain.
Later that afternoon I would try to kill myself because you made me feel so hopeless. My pain was unexplainable. I would receive several calls from my therapist that day, begging me to go to the ER, because suicidality and bipolar disorder go hand in hand. The exact statistic is that one out of every five people with bipolar disorder will successfully kill themselves. I turn off my phone and scream at everyone to stop calling me, to please just leave me alone.
That night while taking a bath, I cut my wrists with a razor, the first time since I was 19. I am no longer “sober” from self-harm. My scars from this, to this day, are still on my wrists.
That Thursday I called your office with my mother on the other line. I begged you to please investigate why I am still in pain three weeks after my surgery. You tell me that for some women, there is no known cause of their pelvic pain. I do not know whether this is a true fact, or if this is something the patriarchy wants me to believe.
The fall semester begins and I start teaching, knowing that there is not enough time in the day to actively investigate what is going on. I message a few physical therapy clinics about endo pain, never responding to their voicemails. I researched acupuncture, learning that four sessions of that would cost me $700. I looked into medical marijuana, which I cannot get because of my bipolar disorder, as it can cause mania and psychosis.
I started to lose hair and weight from Orilissa. Orilissa is a chemo drug and has extremely serious side effects. I no longer have a menstrual period because this drug shuts down your ovaries; it is considered a chemical menopause. I only eat about 1,000 calories a day because of the pain. My bones and joints start to hurt. I don’t care that my body is reacting this way, even though I can only be on Orilissa for two years. I want it to suffer.
On a whim I look into other endo specialists, primarily because my therapist told me to research any endo support groups in my area. When I met with them on October 1st, my new surgeon spent an hour with me, meticulously going over my menstrual history, as well as the ridiculousness of my last year.
She did a pelvic exam, knowing that my last few were traumatic, and told me that I had pelvic floor dysfunction as well as vaginismus. She said that these things are caused by my endo, but also by trauma to the pelvic floor, such as through extreme cramping, invasive medical procedures, or sexual abuse. I do not know which of my pains are categorized as what. So many doctors have touched my vagina that it has become unfamiliar to me.
I am waiting on her to give me gabapentin, muscle relaxers, and Botox shots into my uterus to stop it from spasming. It has been ten days since this appointment, and I cannot get her help yet because your office conveniently received my records request slip when I called to remind them on Friday. Your office probably won’t send it out until Wednesday or Thursday of next week. I am waiting on paperwork to feel better.
It is simply inexcusable that I, and so many other women, are treated this way by medical professionals. I was robbed of my bodily autonomy and sanity by gynecologists who only cared if I was trying to get pregnant or not. I simply do not understand how your office is considered the best in my area. There are no reviews of your office by women who live with endo, even though you are listed online as an endo specialist.
You made me want to kill myself because of the pain, even though pelvic floor dysfunction is treatable. You thought I was the stereotypical bipolar girl who can’t handle herself. Endo, however, is not treatable. There is no cure for this disease. I will have it for the rest of my life. I know the pain will return once I run out of Orilissa.
Many years ago, I accepted the fact that I was bipolar, and that no matter what I did I would always have severe mood swings. I now must accept the fact that I have endo and will be in pain for the rest of my life, even though there will be periods of lesser pain. Although I am glad that I received an endo diagnosis, I am still not comfortable with the idea that I am physically disabled.
I do not comprehend what happened to my body. I feel as if it’s been through a war. There are scars all over me now, whether they are self-inflicted or surgical, mental or emotional. My belly is covered with sutures. I think of my uterus now as a feral child, trying to calm it down every day through various means. Still, I know it’ll do what it wants inside me.
I look at the purple scars on my belly and feel sad. I look at the massive hairballs I leave in my shower drain and feel even worse.
I now must try to reconcile with my body. I am not sure how to do this. There are fleeting moments when I feel beautiful and desirable because of my body. There are also moments when I feel like a freak because I am considered “abnormal” by the medical profession. There are moments still when I feel like my body is betraying me.
I am now at odds with my body because of what you did to me.