NOTE: This post contains potentially upsetting and graphic descriptions of menstruation and medical procedures. Also, some names have been changed. If you have not already, please read part one first!
Two weeks after discontinuing estrogen birth control, I experienced a continuous and excessive bleeding episode that lasted for a staggering seven weeks. To put it bluntly, it was more than just heavy bleeding – it was a damn blood bath. The amount of blood I passed was comparable to what one might experience after giving birth. In fact, it exceeded that volume. I found myself going through five to six super maxi pads every day, and I was passing blood clots as large as my fist. The intensity of the bleeding was so severe that I would feel lightheaded and on the verge of fainting whenever I took a shower, necessitating my husband's assistance. The situation was absolutely absurd, and when I reached out to schedule an appointment with my gynecologist, I was informed that I needed to bleed a longer duration before seeking further medical attention. However, they did agree to move up my appointment to three months from the initial six months. After hanging up the phone, I was left feeling defeated, realizing that there was no way I could endure another six weeks of continuous bleeding.
This endo episode had a significant impact on my daily life, causing me to cancel plans and struggle at my workplace. I was unable to engage in physical activities with my children or spend quality time with my husband. Additionally, my hormones were greatly disrupted. I found myself slipping into a state of depression. Despite trying to attribute these symptoms to my long-term use of continuous estrogen birth control, I couldn't ignore the underlying truth. This was endometriosis; this was my reality. I had a brief break from the bleeding for 9 days.
Once the bleeding started back up again, I reached out to my gynecologist, pleading for an immediate appointment. After a series of phone calls and undergoing two internal pelvic exams, my doctor decided to reinstate my continuous estrogen birth control immediately, emphasizing that this was my only viable option. I expressed my desire to explore the possibility of a partial hysterectomy instead, considering I was 100% done having kids, not to mention the higher risks associated with pregnancies at my age anyway. I also told him that uterine cancer runs in my family, expressing my reluctance to rely on estrogen forever. Unfortunately, my doctor dismissed this suggestion before I could even finish my sentence. “I apologize as I can tell you are struggling right now but you are just too young for such an extreme step,” he said. I just shook my head and kept the tears in. Following my appointment, the nurse checked my blood pressure one more time, which was within the normal range. Consequently, my doctor did not resume my blood pressure medication. Feeling utterly disheartened, I left the office without questioning this decision. Honestly, my blood pressure was the furthest thing from my mind. But hey, guess I at least convinced him I had endometriosis.
The next few weeks were a bit of a blur. It took my body a minute switching from the progesterone birth control back to the estrogen. But things didn’t seem to go back to normal. I began to notice that I wasn't feeling quite right. I was experiencing frequent migraines, almost on a daily basis at one point. I felt constantly fatigued and groggy. I was also freezing cold at all times. But hey, at least I wasn’t bleeding!
During a conversation with a mom friend at Bunco, where I shared my struggles with endometriosis, she mentioned Dr. Larry, an OBGYN at the Cleveland Clinic. Surprisingly, he had been my OBGYN during both of my pregnancies. My friend informed me that when she faced similar challenges with heavy periods and a lack of understanding or alternative options besides birth control, Dr. Larry had been recommended to her. He was one of the few doctors who truly listened to her concerns and eventually performed a partial hysterectomy, transforming her life. She offered to send him a message through MyChart to inquire about the possibility of getting me an earlier appointment, knowing how busy he usually was. Fortunately, I was able to secure an appointment just a week later.
On a Tuesday, I had my big appointment. Initially, everything seemed fine until the nurse practitioner checked my vitals and noticed a significantly high blood pressure reading. She double-checked, expressing her disbelief at the numbers. The same high reading persisted. In response, she called for Dr. Larry, who was equally surprised. Dr. Larry reviewed my medication list and asked me to discuss the problems I had been experiencing. He quickly identified that my birth control was causing my blood pressure to spike. I KNEW IT! After listening to my complete situation, he displayed an incredible level of compassion and kindness. I distinctly remember him holding my hand and stating that this treatment was unacceptable. He promptly discontinued my use of estrogen and switched me back to a progesterone-only pill. Additionally, he suggested a partial hysterectomy, but only if I was certain that I did not want any more children. SIGN ME UP!
Now this is where I initially thought this story would end. You see, I started writing about this whole ordeal months ago. In my optimistic mind, I was confident. A doctor recommended a hysterectomy, so what could go wrong?
Dr. Larry’s nurse contacted me the following Monday to schedule a pre-op appointment and surgery date. I was beyond thrilled. I was jumping up and down in my kitchen, sharing the news with all my family and friends. I was practically shouting it from the rooftops. That is, until I received a letter from our health insurance company stating that they do not consider this procedure medically necessary. According to them, there wasn’t enough evidence that I had severe endometriosis and I was too young. I cried my naive little eyes out as I continued reading about all the requirements I would need to meet. Thankfully I reached out to one of my very best friends who works in insurance, and she advised me not to panic just yet. She provided me with a list of numbers to call and instructions on who to ask for and what to say. I wasted no time and got to work right away.
Step 1: Contact doctor
I immediately contacted Dr. Larry and informed him about the insurance denial, if he wasn't already aware. Feeling nervous but determined, I decided to go to the office in person. When I arrived, I had the opportunity to speak with Dr. Larry's kind-hearted nurse. She empathized with my situation and reassured me that insurance denials are not uncommon, and we would work together to resolve it. However, there was one major hurdle. My insurance company required the original documents, tests, scans, and procedure records from my diagnosis that took place fifteen years ago. Dr. Larry’s nurse told me that they would work on an appeal letter and I needed to start working on getting all my medical records.
Step 2: Obtaining records
When I contacted the medical office to request my medical and surgery records from 2008, the not so friendly woman on the other end of the line couldn't help but let out a small laugh. This unexpected reaction caused me to become emotional and break down during the phone call. Confrontation is something I already dislike, so this situation was particularly difficult for me. The receptionist informed me that in order to obtain my archived medical records, I would need to visit the office and sign some paperwork. Unfortunately, this process could take up to a year and there were no guarantees. I was taken aback by the long wait time as I didn't have a whole year to spare. Despite the frustration, I followed the necessary steps and hoped for the best. Thankfully, retrieving my medical records and scans from my previous gynecologist turned out to be a much easier process.
Step 3: Send the appeal
Dr. Larry shared the official appeal letter he sent to my insurance company. He advised me to wait for a week before making follow-up calls to ensure it arrived. He emphasized the importance of persistently contacting them and making my concerns known. He also told me to let them know we have put in a request for my archived medical records. I found this process incredibly difficult, similar to extracting teeth. I felt myself reverting back to my people-pleasing ways. Every time I called, I felt timid. I made an effort to remain polite and calm. I spent countless hours on hold, making multiple calls throughout the day. It was truly an agonizing experience.
As my surgery date approached, which was just two weeks away at this point, I started to feel a sense of panic because I was still encountering obstacles. Despite my doubts, I attended my pre-op appointment as advised by Dr. Larry, hoping for a positive outcome. However, six days before the scheduled surgery, I received yet another letter from my insurance company. Another denial. This led to the cancellation of the surgery, throwing us right back to the beginning with no progress made. I was devastated and ready to throw the towel in.
STEP 4: Ablation
Dr. Larry determined that the next best step while we wait for my medical records would be to perform an Endometrial Ablation, which aims to permanently stop excessive bleeding by destroying the entire uterine lining. A heated liquid is placed into the uterus through a catheter. This liquid circulates around with a computer-controlled pump until the endometrial tissues are destroyed by the heat. I chose to have this procedure done with a local anesthetic to expedite the process. I was experiencing more days of bleeding than not at this point and my iron levels were extremely low, despite taking supplements. The procedure lasted approximately an hour and was more intense than anticipated, as my body did not respond well to the medication.
I.
FELT.
EVERYTHING.
Dr. Larry's nurse provided comforting support by holding my hand as my body uncontrollably shook. Though I didn't cry, my lower lip quivered as I tightly gripped her hand. Unfortunately, during the burning process, I began to bleed profusely, adding to the overall unpleasant experience. Dr. Larry informed me that the success of the ablation would be determined in a few weeks, and a follow-up appointment was scheduled.
Unfortunately, I never made it to the follow-up appointment. 4 weeks later I received the disheartening news that the ablation procedure had not been successful. In fact, my bleeding had intensified, and the pain had reached an unbearable level. This turn of events plunged me into an even deeper state of depression, as I struggled to come to terms with the reality of the situation. It felt surreal, as if I was trapped in a never-ending bloody nightmare (literally). When I reached out to Dr. Larry through MyChart to discuss my worsening symptoms, he promptly called me to express his apologies and provide an explanation. He informed me that this type of failure only occurs in 10% of cases. Unfortunately if an ablation completely fails, there is risk of even MORE frequent bleeding. I remember begging him on the phone to please put me back on estrogen alongside a BP med because I could not physically handle this anymore. His response was: “Love, we are not done fighting yet. Give this just a little longer. We are putting in a new order, citing the failed ablation. If they still deny we will do a peer to peer but I have a good feeling.”
I couldn't help but feel skeptical. I was rapidly losing hope in finding a solution. I was completely overwhelmed and on the verge of giving up. I reached out to my family, sobbing uncontrollably, seeking their support. I texted my friends, expressing my frustration and declaring that the whole process was too much of a hassle, and it seemed like I wouldn't be able to get the surgery after all. Above all, I felt deeply embarrassed for having placed so much trust in our medical system. I felt foolish and naive. I had no idea how difficult it would be to navigate the insurance process. It baffled me that the people reviewing the appeals were not all doctors. Resigned to my fate, I told my husband that I would probably have to endure these episodes for another 12-15 years. There was only one thing left to do and that was to pray. PRAY FOR A MIRACLE!
As summer break approached, the weather grew warmer and the days became longer. My children were filled with excitement for our upcoming Disney vacation, but I couldn't share in their joy. I was tired of dealing with constant bleeding, endless doctor appointments, unsuccessful medical procedures, and frustrating calls to the insurance company. I reluctantly confess that I found myself in a state of intense anger and negativity. I distinctly recall praying one evening before bed, expressing my deep disappointment in myself. I felt incapable of being a good mother or wife, and I struggled to exhibit empathy and be a supportive friend. I had no interest in engaging in enjoyable or social activities; I was simply immersed in my struggles and growing more exhausted with each passing day. I even went as far as to plea, "God, if you truly exist, please provide me with a sign here. I am finding it difficult to hear your voice, or even feel your presence.”
The next few days I prayed morning and night. I was mainly praying to have a “blood free” Disney trip if I’m honest. I could not fathom walking down Main Street USA in 95 degrees heat while bleeding out. We were also spending a few days at the beach and I was hoping I could actually enjoy it. At this point it had been weeks of non stop bleeding so of course it was wishful thinking I’d have a whole 12 day break during my summer vacation. I kept telling myself to be realistic. The bleeding persisted right up until the morning we embarked on our much-anticipated Florida road trip.
And then something truly incredible occurred. Despite occasional and unexpected period cramps, I miraculously didn't experience any bleeding throughout the entire vacation. I was in an absolute state of bliss, and let me tell you, I savored and cherished every moment of that trip. I had an abundance of energy, my complexion regained its vibrancy, and I genuinely relished every second. Skipping down the Disney streets right along side Mikey was definitely a highlight. However, as we began our journey back home, a sense of melancholy started to creep in. I knew that once we returned, I would likely resume bleeding and have to confront all the issues I had temporarily left behind. Or so I thought...
The day was June 11. We had just entered into West Virginia on our drive home from vacation when I listened to a missed voicemail from Dr. Larry:
“Hi love. I have great news. Insurance is going to cover your procedure. Please call the office ASAP. All you need to do is come in tomorrow morning for a pap.”
Just a few days later I received the official letter in the mail stating that my surgery would be covered! IT WAS A MIRACLE!
Xoxo,
Caitlin
The final chapter, part 3 will be out soon!
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