A Letter To The Doctor Who Didn’t Believe Me

To whom it may concern:

I’ve been thinking about you a lot lately. I wish I could say you never crossed my mind. But you do. Recently, when I start to feel that familiar twinge of pain, I am forced to remember. It takes me back to that year — the first time I started to realize that something was wrong with my body. I’m reminded of the fear I felt at what it could be. You see, I know my body better than anyone, as I’m living in it. So when I started to feel the now all-too-familiar pain every single day, I knew it wasn’t normal. I called your office to schedule an appointment. Back then calling a doctor’s office to make an appointment didn’t fill me with dread and make my armpits sweat profusely. Back then, I still believed you had my best interest in mind.

I talked to the receptionist and let her know that I hadn’t been feeling well and wanted to make sure I had ample 1:1 time with you. She assured me that I would and I hung up the phone. A week later, as I sat in the waiting room, I remember feeling hopeful. I genuinely believed that I would leave your office that day with answers and medicine to make my pain go away. How naive.

When the nurse called my name I followed her through the door. She took my height and weight and asked me all the predictable questions. Had I been smoking? Did I drink? Was I sexually active? No, no, and no again.

I told her about the symptoms I had been experiencing over the past several months; constant abdominal pain, extreme bloating of my abdomen, horrible periods, vaginal pain, extreme abdominal pain while trying to exercise, and an overall feeling of helplessness. She wrote things down on a paper and left. I waited for you, still feeling hopeful.

You came in and began to ask me questions. I told you everything, and as I was talking, I began to cry. It felt so nice to finally talk to someone who I assumed would understand. I was ashamed of my pain back then. I didn’t know how to talk to anyone about it because I wasn’t sure what was even happening. You were one of the first people I told.

I told you about the days I was forced to stay in bed because my stomach hurt me too badly to move. I told you about the periods I had experienced since high school — the ones that caused me to faint and vomit in front of my classmates — and the pain I felt when trying to exercise. I then told you about the very few sexual encounters I had attempted to have, and about how they all ended in horrible pain and embarrassment. I told you all of this because I thought you would believe me. I thought you would help me.

When I finished telling you about the physical symptoms, I told you about the emotional ones. I tried to explain to you what it had been like to live in pain over the last several months not knowing what was wrong with me or how to fix it. I told you that it had become harder to smile and laugh with my friends. I told you what it felt like to feel betrayed by your own body. I poured my heart out to you. I trusted you.

When I was finally done talking, I grabbed one of your Kleenexes to wipe my tears. You never offered me one.  It was stiff and scratchy and made my nose red. You began to talk. You told me that my period sounded “relatively normal” and that I should “take Advil” the day before my next cycle as a preventative. You then said that I appeared “very stressed” and seemed convinced that my stress was the culprit behind most of my abdominal pain. You also told me to add MiraLax into my diet every morning with a glass of water to reduce the abdominal bloat. As far as the painful sexual experiences? You had an answer for that too: use lube. You then prescribed me an anti-depressant and left the room.

I wish I had known then what I know now.  I wish I had known about the millions of people who live with my conditions. But I didn’t know. So I went home that day, feeling helpless and confused. I still wanted to trust and believe you at that point, so I began to doubt myself. After all, you were the expert, weren’t you? As the weeks went on, the pain continued, and so did my denial. I had successfully begun to convince myself that I was going insane…that this pain I was feeling wasn’t real. Maybe I was just really stressed. Maybe I did need to be on an anti-depressant.  I did everything you suggested. I took the Advil. It may as well have been a sugar pill. I did the MiraLax. The bloating only got worse. I did everything I could to convince myself that what I was feeling was “normal” like you said. But nothing worked.

I went back to you again and again and begged and pleaded for answers. You never gave me any. I wish I had stopped seeing you. I wish I had possessed the courage to fight for myself. But I wanted to trust my doctor. Doctors are supposed to help people.

It took me almost five years to be told that I have a disease that affects nearly 180 million people in this world. FIVE. YEARS. And it might have taken longer, had I not searched my symptoms endlessly on the internet.

I will never get those years of my life back. The ones I spent curled up in a ball in my single dorm room in college pleading with a higher power to lessen my pain while simultaneously begging for answers. The ones I spent convincing myself that I belonged in a mental institution because you told me that my pain wasn’t real. 

It’s now been a couple of years since my official diagnosis and I’ve tried to forgive you. I’ve told myself that you didn’t know any better. That maybe you really did think you were helping me. That maybe I overreacted. But the truth of the matter is, I was in pain. Physical pain and mental pain. I was suffering.  And you were my only way out. But you didn’t believe me.

I now know that my pain — everything I was feeling — was real. I know that it’s not a figment of my imagination or a side effect of stress.

I’m not sure I’ll ever truly forgive you for what you put me through. I’m also not sure you’ll ever realize what you did or admit to any wrongdoing. But that’s OK. I no longer need your validation. I don’t even want your remorse. I just want you to do better.

signature

 

 

 

Advertisements

19 responses to “A Letter To The Doctor Who Didn’t Believe Me

  1. The nurse practitioner in college told me I had Vaginismus when I was 19. She told me to buy dilators and try them out. They’re awful and I was completely unmotivated to put myself through that at that time. Since then, I had 5 doctors tell me that vaginismus is difficult to diagnose and there was nothing they could do. The first doctor asked me if I was using the right hole and the 3rd thought going super fast through the exam would make it better. Even though I cried through every appointment and couldn’t control my body. 5. I found a doctor who heard me. Did 2 rounds of physical therapy, dilators nightly, lidocaine topically and injected. 2 months ago, a new doctor (I’ve been to 2 more since) told me my vaginismus is a symptom of Vestibular Vulvodyna. She doesn’t think I have Vaginismus after all. That diagnosis has been my identity for nearly 10 years. I’m married and have been with my partner for 13 years but we can’t enjoy sex. I’ll be 29 in 2 months- by then my newest treatment of topical hormones should help. Trying not to get too excited, because I know that let down hurts too much. SHOULD help. 🤞I know your pain all too well.

  2. Hi Brigid,
    Make sure you are seeing a pelvic floor physical therapist who has specialty in womens health. The process takes some time, usually 3 to 4 months to get things right, you may take even longer. You can have intercourse without pain, I’m proof of that. It will take dedication and the right p.t. Theres a great read on scribd I suggest you read, “get the pelvic floor back in action” and “freeing yourself from pelvic pain” and remember this is for education purposes, you will need a p.t. to evalulate your particular issues to create a individualized plan.

      • Im so sorry they havent resolved this. Could this be endo? My pelvic floor was invaded with endo after 5 months of p.t. I could only get so far until the endo was excised (not ablated.). Another two things that help me is vaginal valium suppositories and therawand. Try those reads just to see if theres something the p.t.s had missed. Freeing yourself from pelvic pain has helped me alot. A big name in pelvic p.t. is Amy Stein, you could look up her literature as well. Dont give up hope! My case isnt the same but I know the struggle, and I know theres hope with the right treatment plan for you. Hugs my dear.

      • It doesn’t seem like endo- it’s very targeted pain. I’m hoping this new diagnosis (from a Urologist Gyno actually) is the right one- it seems like it is but we won’t know for about a month or so if the new treatment works. Valium didn’t do anything and I have a therawand- that gives a good stretch but doesn’t alleviate the pain in the trigger point. I feel like I could be a PT at this point! We’ll get there someday. I’m grateful that now I have the strength to be an advocate for myself instead of just relying on the doctors- all those bad ones empowered me to be a better patient and a better fighter for what I need. Thanks for your support.

  3. Thank you for writing this wonderful letter. While many of us with chronic illnesses, especially endometriosis, have been in this same or similar position, it’s not right and shouldn’t be acceptable as part of modern medical care. We deserve better care from our doctors and I hope someday, with all of us stepping forward to raise awareness, that will be true. 🎗💛

  4. Twenty years. TWENTY YEARS from my first symptoms to diagnosis. Twenty years and at least twelve different doctors (some general practitioners, some OB-GYNs, some UrgentCare or ER doctors). The last one I saw before my endo specialist told me – and I quote, “Stop using Google to diagnose yourself.” She wanted to put me on antidepressants for the severe abdominal pain and exhaustion. I can’t wait to bring her the photos from my lap showing stage 2 endo and severe adenomyosis. Because it was all in my head.

    You’re absolutely right. These doctors need to do better!!

  5. Thank you for putting into words what so many of us have experienced in some form. I am sorry for you and all others who have opened up, gathered it together to explain and had it all minimized to Advil and stress. My best to you in your journey as you find what works best for you and your physical and emotional endo matters. Horrible disease which has stolen the quality of life from each of us. Trial and error have been key for me. I so hope that everyone finds the relief they are seeking.

  6. Thank you for this peice that i expressed my heart out…i wish i have the guts to write that to my doctor as well.

  7. This, sadly, is a very common story when it comes to the women specific pain disorders (bit of an umbrella term, there might also be a better way of describing it?) why is it that the professionals who should know about these disorders know so little? Is it not taught? Is it not a priority? I’ve had terrible advice from gynaecologists, it turns out that if they just asked me some simple questions and looked properly, they might have found the septate hymen and treated it quickly, instead I had to go through 15 years of embarrassment, Shame, useless appointments, pain. All because of a little bit of tissue in my vagina, only took 5 minutes to remove! I pretty much had to wait for the internet to be able to figure it out! And through my sex therapist was able to find a gynaecologist who knew about this! It’s easy to blame those doctors, but I keep asking myself why they know so little? Why aren’t we listened to?

  8. Thank you for this article, I can relate to so much of this, it was only by changing doctors practices after years of pain and problems did I get my endometriosis diagnosis.

    For years they told me I was normal and I now have reached an age where having children might not be an option.

    To my doctors who weren’t listening and didn’t care, I want you to do better too.

  9. Oh my goodness. I had tears in my eyes reading this. I could have written most every word. I wish I could hug you, Lara! Thank you for writing this. It was important for me to read. Hearing my thoughts and reading my struggles from an outsider’s perspective was just what I needed. I never doubted that YOU had all those symptoms, but for some reason, I, too, doubted myself because some idiot told me I was “emotional” and needed anti-depressants, not medication for an actual disease. I need to trust myself like I was 100% trusting you. It all came clear to me how I am not my best support system, like I absolutely should. Thank you for this article!

  10. It took 10 years from my first appointment (aged 46) with a male doctor until my operation this January for a pro-lapsed bladder. Now thankfully I no longer have to use Tena pads. Misogyny and disregard for Womrns abdominal/vaginal/uterthal/menstrual/menopausal health has been long documented. 150-200 years ago we would have been discharged into mental asylums by ignorant lazy male doctors. Dismissed as hysterics. Thank goodness for the Internet. I self-diagnosed myself. Even had to deal with girlfriends dismissing me as hbrinv misguided as surely the doctors were the experts. There is a great fear of women’s gynaecological health. Time for this imbalance to be redressed.

  11. It took 7 years from onset of symptoms for me to finally be diagnosed with Endometriosis. 7 years until a male General Surgeon finally uttered the words I had been equally hoping and dreading to hear.

    I don’t want to place all the blame on Doctors, as it’s about education and more of an effort needs to be made to help them realise this is a big issue that they need to think about when they see young women with debilitating pain.

    Where is the education? Where is the awareness? My Mum says Endometriosis care hasn’t progressed any further than when she was going through it 20 years ago!

    Women’s health is important, and we need to talk about it more so that it becomes normalised. Doctors also need more education for sure, that would go a long way to reducing the diagnostic delay.

  12. Wow. Just wow. I’ve recently been writing about my health and diagnosis story (Celiac) and it has dredged up such similar feelings. Thanks so much for your vulnerability in writing this! We are not alone!

  13. THANK YOU! Lara, your buzzfeed video and blog posts are the only thing that are helping me to realize that I am not the only one with my chronic pain. I read this post and have not been able to stop crying because of how perfectly it summarizes my shitty experience with every single doctor I have been to. I am in college and still have no answers to my chronic pain so I relate so much to every single thing you discussed. I am so inspired by how open you are with your chronic pain and I am so glad I found your blog!

I would love your feedback.

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s