A Second Opinion, A Third, A Fourth...5,6,7,8,9,10
- Lorraine Hohl
- May 3, 2021
- 8 min read
& 3 years later
I'm really not joking. It took 10 different healthcare professional opinions, thousands of highway miles and a suggestion from my therapist's mentor in a zoom call, spanning over a three year period, before my current doctor at the Center for Vulvovaginal Disorders validated my pain.
I've been a patient of :
3 gynecologists
2 endocrinologists
2 physical therapists
1 fertility specialist
1 Naturopathic Health Professional
1 sex therapist
I've driven as far as:
Hagerstown
Waynesboro
Carlisle
Hershey
Frederick
Lancaster
Shippensburg
Washington, DC.
Year One: An Emotional Roller Coaster
I called my mom as soon as I got in the car. "She literally suggested for me to practice yoga. That's it." Her entire demeanor, the way she shrugged her shoulders, moved about the room, her tone and lack of poise and ponder displayed her annoyance in my presence. She's the type of doctor I expected to get along with, matter of fact, give it to you straight, no hesitation type. We had a fine relationship until the moment I questioned, in an inquisitive state, if the birth control she prescribed a few months back could be a reason for my mood swings, dryness and sexual discomfort. It was a stern "no" from her and a sheepish "oh" from me, considering I didn't think it was normal for me to not have periods any more. Before birth control, my periods were extremely irregular but they existed in some capacity. When on birth control, which is typically used as a regulator in addition to a form of contraceptive, they disappeared. How's that for chemical manipulation?!
She didn't bat an eye telling me how many women do not have periods on birth control, especially Lo Loestrin, and that my concern was completely out of line. How dare I question science.
Needless to say, I sought a second opinion. When a doctor, nurse, nurse practitioner, etc. cannot accept a patient asking questions regarding the validity of science and its effects on the human anatomy against their medical ideology, they no longer serve at the pleasure of the patient.
Explaining everything over again, my new gynecologist completely disagreed with the concept of a non-existent period while on birth control. She recommended to stop taking it, which I had done and for me to see an endocrinologist because she felt my symptoms were related to an imbalance of hormones. She also gave suggestions to mitigate painful sex such as, various kinds of lube and condoms, but this discussion came secondary and non-helpful. It's almost as if she was uncomfortable with the discussion and didn't know or have the resources to help me...as a gynecologist!!
Third time's a charm, I thought! At this point, the pain was unbearable. Joshua had caught on to my act and the emotional trauma began to soak in. "The endocrinologist is going to figure this out and we are going to have a plan to tackle the issue at hand," I believed. My mom went with me to this appointment, because by now she knew what was going on and to the extent. Explaining myself (again), she completed her small exam, ordered an extensive round of blood work and said she would call me with the results. Pause - what about the pain during sex? Would she - could she even help? I began to cry, like really cry. My first time crying publicly to some random stranger about pain during sex. I was embarrassed, felt helpless, needed answers, completely desperate and dependent on someone's help.
She quickly grabbed the tissue box, which BTW someone needs to raise cane to the hire-ups about tissues in medical buildings because those things are like sand paper. Seriously, not consoling to the nose at all. She gave me the entire box and I just cried and cried. I couldn't stop. Finally, in between my hiccups of trying to calm down, she said, "oh honey, I don't really treat that sort of thing - maybe try coconut oil." I walked out of her office defeated.
At my next appointment, we discussed the results of my blood work which showed low amounts of estrogen in my body. Given my athletic history, hormone levels and no return of my menstrual cycle, she diagnosed me with Hypothalamic Ammenohria. In a nutshell, she suggested I unintentionally "starved" my hypothalamus (located in the brain) due to lack of nutrients and fat, resulting in low hormone secretion, causing my periods to vanish. The goal was for the return of my period, which could take up to a year if I adhered to the following: 1. ate more healthy fats such as, avocados, almond butter, nuts. 2. reduced stress 3. gained weight 4. avoided cardio exercises. In turn, I would experience more pleasurable sex because my hormones would be regulating and the vaginal dryness would cease.
It was going to be just as much as a mental battle as it was physical battle for me to complete her instructions. I did not want to gain weight at all and I just took a new position at the Borough, which was as far away as "reducing stress" could get at the time. So I asked her if I could maintain my weight since my lifestyle had become more sedentary than in college and further explained my recent promotion.
Although I had no plan of action for the immediate pain, Joshua and I both felt relief knowing it would subside within the relative future. Joshua would tell me, "Lorraine, we have the rest of our lives together. One year is a drop in the bucket." It's like when you're in a plank position, sweat pouring from you forehead, shaking so bad you want to just fall to ground but a voice inside says, "you can do anything for one minute." Same concept only apply it to penetrative sex and one year.
Year Two: A Physical Roller Coaster
My periods came back within six months after maintaining my weight, eating more fats and limiting cardio. Great, right? For sure, yes but the pain worsened and the night sweating more frequent. So at my yearly appointment, I unleashed my frustration. She ordered more blood work, which showed low testosterone and low estrogen. Three months later, low testosterone and normal estrogen. Three months later... another round of blood work, another round of highs and lows. What.the.heck.
At this point, I was less emotionally distraught than the previous year but was more angry and frustrated. The year of "following the plan" was for nothing other than eating all the guac. At this point, my Momma began to help me research various doctors ranging from fertility specialists to endocrinologists to pelvic floor therapists in hopes for someone to actually find out the root cause of what was happening.
In this year, I was tested for pre-menopause, PCOS, endometriosis and ovarian cysts. In addition to the MRI on my pituitary gland and ultrasounds, I was picked and prodded more times than I can count, completed cortisol testing and more. Each test presented its own risky results and corrective coarse of action. Each doctor a difference of opinion; each causing me to crash and burn on a high of healing only to end up with an inconclusive diagnosis and lingering pain.
Year Three: A Mental Roller Coaster
A thick cloud of hopelessness weighed down my love life and I began to doubt not only the medical field but my body's ability to heal. I truly believed sex would hurt the rest of my life, something I would need to muster through for the sake of saving my marriage. Other than a few close friends, family and my small prayer journal, I kept everything pent up inside. No one within my inner circle could relate to my experiences and other than listening, they really couldn't help me. Sure I could babble, cry, yell, ask questions but they couldn't remove the built up trauma my body kept stacking on itself. Therefore, I turned to the internet. I searched for blogs, medical websites, Instagram pages - you name it and I came up empty handed. Nothing came up I hadn't already been tested for.
Towards the end of year two and into year three, right before the "ultimate shut down" of our world, I began to see a sex therapist. I had to swallow my pride, let go of the stigma and ask for help mentally. My thoughts were taken captive, in a holding cell of darkness and I couldn't release them.
She would tell me that my case was unique, stumped in the moment but determined to find all the pieces to my puzzle in order to foster good health emotionally, mentally, physically and spiritually. In each session, she provided a resource for me to read, a new idea to try and a prayer for sex to return as something associated as pleasure. We talked about healthy communication with our spouses, understanding the importance of sexual connection, relaxation, managing stress, control and honor of our bodies and mindfulness, along with physical anatomy, sexual desire, arousal and all the gushy gritty details of sexual play yet it all hindered on one missing piece.
My therapist would sometimes report back to her mentor regarding my case and in one particular session, when the mindfulness, relaxation, stress managing mechanisms, foreplay and positional techniques weren't working, she suggested I travel to Washington, DC to the Center for Vulvovaginal Disorders - a group of doctors specializing in vaginal pain but who also do not take insurance.
I reluctantly called and booked an appointment the next day. During my appointment, the doctor was able to take one look and knew something greater was happening throughout my body. She also was able to recreate the same pain I experienced during sex - something no other doctor was able to do, which is probably why they all treated me like I was taking something out of proportion or going crazy. She ordered specific blood work to happen at a specific time in my cycle and dependent on the results, she was sure I was going to need to be on hormone therapy, complete physical therapy for a hypertonic pelvic floor and reduce stress. She also recommended counseling, explaining how sex is more than physical touch and suggested yoga as a calming practice. She sat with me in her office, explaining in every detail how my body was responding to the lack of hormone and reassured me the pain would cease. We were in lock sync with each other and guess what...I cried. I cried for hope, for answered prayer, for feeling satisfied and content with the journey ahead of me. In the moment, I felt relief. She told me it was going to get better, I wasn't alone and I believed her.
Reflecting on the last three years, there is a common theme within the medical profession surrounding women's health and its quite alarming. Due to the complexity of our bodies and the similarities of symptoms, doctors do not take the time to research the multitude of root causes of pain in the vagina. They stick to their textbook answers and when a patient doesn't fit the model, they just keep throwing darts without a plan. It's dangerous and completely out of line. It causes misdiagnosis, lost time, set backs and depression. It's invigorating chaos.
Wake up insurance companies. Wake up universities, colleges, medical schools. Wake up textbook writers and researchers. Wake up pharma. Wake up and start pushing beyond the norm because there are a number of us out there, experiencing pain with doctors unable to properly provide care because they simply don't know where to look, where to touch, how the symptoms overlap, how to treat without specialized focus and can't submit to insurance companies.
We're more than a number or a model number on a page. We're more than insurance coverage. We are a human being needing your help.
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