My appointment started out like every other appointment: fill out paperwork, bring it with you, wait, wait, wait until the nurse checks you in, gets your vitals, etc. My mom took me to the appointment so I could take my higher dose Xanax and not have to worry about driving. When we got to the appointment, my husband showed up! Surprise! Super Spouse is here! Except I could only choose one in the exam room and he said mom should go with me.
Okay so now that I have two rescuers with me, I’m feeling better about my appointment. Also, the Xanax is kicking in at this point. This nurse actually took the time to read my medical history form and pay attention to it and she was great until the blood pressure moment. The machine she used to take my readings wouldn’t stop squeezing. It got to the point where I audibly whimpered and said “this is really starting to hurt. I can’t feel my hand at all” but she said “it will be over soon” and then a minute later it finally stopped only to leave my arm steamed lobster red with red track lines and a dark purple bruise already forming. No real concern from her on that, but she did pay attention to me noting “white coat syndrome” on my chart and didn’t read too much into my readings, so I do give her credit for that. She was very nice and quite funny and she and my mom were having quite a conversation while I kind of checked out mentally to calm down from the blood pressure.
Then the nurse told me to disrobe from the waist down. Oh goodie, a pelvic exam is in my immediate future! So I did that and then waited for the doctor. She started out with a joke about “what, you mean you don’t like bleeding for 3 months?” and then it went downhill from there.
Looking back on this appointment, I truly do not think she believed that I had been bleeding for 89 days (91 at the time of this blog post) and now I honestly don’t think her brain could grasp that this was not an enjoyable thing for me. She seemed to disregard that I’ve been clinically diagnosed with PCOS more than once and asked me what tests were done to determine this. I ran through the list and said exactly which doctors had done what. Oh right, and that whole FERTILITY CLINIC thing. You know, the people who specialize in this and know the endocrine system inside and out? Yeah, those people clearly have no idea how to diagnose PCOS.
This was not looking good.
She seemed to be in complete disbelief that birth control could possibly cause the reactions it had in me. It’s as though she refused to believe anyone could experience hallucinations, blackout rage, suicidal depression, and total numbness on a pill. Oh, and there’s no way I could have gained 30 pounds on one pill, 15 on another, 20 on another. No way is that possible! When I told her my marriage had suffered as a result of the medications, she just looked at me like I had five heads and said nothing. I told her that I thought I’d had issues with metformin in the past, but I’ve since discovered I have a skin condition and some mild food allergies so I may not have actually reacted to Metformin like I thought I did. It could have been coincidental and I was willing to try that again if it would help. She just said “well those reactions are from Metformin” Um, did you hear me say I also have the reactions from certain foods? Apparently not! So my mom chimed in “well I’ve heard of a sustained released version as well” and Dr. Doom said “that’s only for diabetics”. Thanks, for the help!
Then it was time for the pelvic exam from hell. I had just told her how pap smears really hurt me and she didn’t give me any sort of warning – she just shoved the speculum in me and spread it wide and then what felt like a tiny machete was scraped around. She told me I needed to relax and spread my legs wider so she could “pull a few clots out” and then pretty roughly pulled the speculum back out when she was done. All the while I’m squeezing my mom’s hand to the point of causing her pain. Then the manual exam with fingers inside and hand on the outside. I felt like I was being punched right in the uterus. I know my body is infinitely more sensitive when I have my period so I know some of this was a bit more painful to me than it normally level of pain it would have been, but when a patient tells you they have pain with a normal exam, you should maybe be a little more gentle and maybe, just maybe, be kind to them as well. Of course I immediately started cramping and by the time I got home I was bleeding heavily again.
She said something about getting a CBC, but never drew any blood… maybe that’s what the clot extractions were for??? No idea though. She didn’t bother to explain herself, say what she was doing, or tell me why she took my clots.
A few minutes later she was pushing birth control back on me. I had just spent several minutes explaining the effects and here she is saying that’s one of my only options. So fine, I humored her and said “okay, let’s say I decide to abandon my objections to going through hell and take you up on a new birth control. How would this new one compare the previous ones? How would it be better or different?” She said “I really don’t know” and then when I pressed her for a better answer, she sighed and turned to the computer and googled one of them (that I had to spell the name of 4 times, mind you, because she had never heard of it) right in front of me. Way to be educated!
At this point, my anger was rising. So far I’ve clearly been ignored and not believed about my symptoms, had birth control pushed on me, been questioned about my disease, and a rough exam. We still haven’t discussed the issue at hand: how to stop the bleeding!!!
There was a clear moment to me when she just mentally checked out and stopped listening to my concerns – I could literally see her face change. I felt like I was burdening her with my decision to refuse birth control and how dare I make her seek an alternative option for me?!
Then she decided that since I was refusing birth control that my option was to go back on metformin and progesterone, but then she added that the progesterone was just temporary to slow the bleeding down long enough for me to have an ultrasound (that they apparently can’t do in the office?) and that the minute I stopped taking it, I’d just start bleeding heavily again. Oh joy.
And then, she crossed the last possible line she could cross: she said “the progesterone is going to make you hungry, but you’re just going to have to adjust to it and deal with it. You’re going to have to have some self-control.” What my brain said: Self-control? SELF-CONTROL? Bitch, do you have any idea how much self-control I’ve exhibited over the last 3 months of bleeding and fighting hormones and staying on a meal plan? Do you have ANY idea how hard I’ve worked to not give in to my cravings? Do you have any idea how much self-control I’m exhibiting right now by not stabbing you, especially after that violating pelvic exam?
Instead I was silent and squeezing my hands into fists so tight I had white knuckles. She continued on to say I needed to make major lifestyle changes and that I needed to immediately get back to working out 1.5 to 2 hours a day… but she didn’t actually bother to ask what I’ve been doing for physical activity or what my diet was. No actual information, just took a look at my body and judged me. I remained quiet. I was truly afraid of what I would say at that point.
Listen, I understand that my weight is a problem. I understand that I’m in a vicious cycle with PCOS, birth control, stress, and weight. I really do get that! My fertility clinic doctor has explained exactly what the problem is, why I gain weight the way I do, and the best methods for me to lose it. I’ve worked on this for years. I’ve made numerous changes and done a lot of really great things to change my lifestyle so I keep these habits for life, not just for a fad diet. I want to be healthy, regardless of what the number on the scale says, and a lifestyle change was required for that.
And then, when I finally spoke again, I said “I’ve been bleeding so heavily that I cannot even stand up to cook dinner. I can’t be away from a toilet for more than a few minutes. I literally soak through tampons and pads at a rate that I almost checked myself into a hospital the other night, but didn’t out of a fear of a D&C possibly happening. Going to the gym right now is not an option until this is controlled. That’s why I’m here. I need help controlling my PCOS so this doesn’t happen again.” My mom then added “even I’ve had rough ones. I almost died from one. It required 5 blood transfusions and a D&C to save me.” And Just when I thought Dr. Doom could not cross any more lines or insult me any further, she interrupted my mother (oh hell to the fuck NO!) and said “I know what heavy periods are like! I had them when I was an adolescent! Now I have a Mirena insert and don’t have that problem” Oh, well just excuse the shit out of me! Clearly you get it. Clearly your adolescent uterus is the exact same as my nearly 34 year old uterus and CLEARLY you’ve been through this even though you were in shock over this lasting as long as it has. Clearly your choice to keep in a dangerous IUD that has a class action lawsuit against it trumps my family history of emergency hysterectomies and nearly bleeding to death from heavy periods. You’re right, you know it all. Please tell me again how I can be just like you!
Once again, I went silent. I tried to channel my rage into something calmer. Somewhere in here a discussion about D&C’s ensued and Dr. Doom went from saying “we really only do them for miscarriages” to “depending on your ultrasound, we may be going forward with a D&C, but it will scar you and they’re really not done for heavy periods”. Umm, okay, what? First of all, I’ve done my research on D&Cs and while they’re not the ideal situation, the risk of scarring is lower than you’d think and they do them for heavy periods quite frequently. That being said, I really don’t want to have one.
My mom, having been there through this whole appointment, was in complete shock. She finally asked what the plan was and what was next and the doctor begrudgingly agreed to metformin and progesterone with an ultrasound, but made one more jab about my refusal to take birth control. Oh and the best part? She didn’t even tell me she called in prescriptions, just assumed that when I told her which pharmacy to send to that I should know she’d done it, so I waited for a nurse to draw my blood for the CBC and tell me when to expect my prescriptions to be called in, but then found out from the pharmacy app on my phone that it was in progress and no nurse showed up so I left the room. I made an ultrasound follow up appointment and then walked out with steam pouring out of my ears.
I was furious by the time we reached the parking lot and my husband was equally furious. My mom was still in shock. (Later she told me she felt like she’d watched a slow burn happen and hadn’t caught on to the signals until afterwards. She felt terrible she didn’t see it sooner, but it’s not her fault and I refused to let her take the blame!) I tried to be calm on the ride home, but the more I thought about it, the worse I felt and eventually the anger had turned to complete sadness.
I felt like I had been fat shamed and labeled as a fat lazy slob. She treated me like I was below her because I didn’t fit her criteria of an ideal body. As the cramps worsened and the blood started to flow again, I realized how physically violated I had been and how what felt exaggerated wasn’t actually exaggerated. I really was HURT by this doctor. The history of my past doctors came flooding back and I started to feel like I’d never have a good doctor again. Having fully immersed myself in shame and sadness, I went to bed early while the spouse took care of some things around the house.
When I woke up, my sadness was still looming but I ended up calling Dr. Doom’s office to cancel my follow up appointment. I decided I could not, in good faith, put myself through her treatment again. It would dishonor myself to further subject myself to a discriminatory and abusive doctor. They politely asked me why I was cancelling and I started of saying just a few words and then ultimately unloaded the entire story. The receptionist was horrified and immediately booked me with the head of the practice for a follow up appointment. I felt massive relief when this woman jumped in to tell me how unacceptable it was and she was sorry I was so upset I was crying. She did what she could to right the wrong and I’m going back in a few hours to talk to the new doctor.
I will say my expectations cannot possibly be lower than they already are at this point, but I am seriously fucking proud of myself for expressing my feelings and standing up for myself. Now we will see what happens with the new doctor and go from there.