“My entire health journey has been quite private over the past 6 and a half, nearly 7, years. I have cried in private, I have grieved in private, and I have had dark and debilitating thoughts in private. On the other hand, I have rejoiced in private, I have laughed in private, and I have cried tears of joy in private. To be honest, most people may think my husband knows everything I have faced but, despite him being my whole support system, there are more nights I have spent in complete emotional isolation than comforted. This is no fault of his. I have pushed him away in many ways, but why have I done that… you might be asking? It all began in January of 2015.
I was 19 years old. I had no health insurance. My period started and it did not stop. In June of 2015, I was still bleeding. It had been 6 long and draining months. I finished up the spring semester and looked forward to my 20th birthday that would soon approach that month. Somehow, I obtained health insurance from my parents… Medicaid that is. My medical options were limited, but I knew I needed to address the bleeding and it could not go on any further. I went to Primary Care in Murray, KY. There, I saw a midwife OBGYN, thinking her approach may be kind and attentive. I had been to this location twice before, seeing other doctors in the past. She stated the bleeding was likely due to stress… ‘You’re in school, you work two jobs… it must be stress.’ …the same old song. No tests were ordered. She suggested birth control would do the trick and make the bleeding stop. This marks the time I began taking Aviane.
I began to notice a weight increase, an acne increase, and a hair growth increase. I have never been skinny, no not at all, but my breakouts were never severe. I was typically in a jean size of 12… but that turned into a 16. I made the joke I never gained a freshman 15, so I might as well gain the sophomore 30. Although I was gaining weight, the bleeding had stopped. Just like they said… they must know what they are talking about!
In August 2015, the fall semester was commencing and I walked into Wilson Hall ready to climb the three flights of stairs that I climbed every day. When I got to the third floor, I lost my vision. My ears had a whooshing sound. I caught my breath, my vision returned, and I walked to class. I sent a message to my mom and asked what that may be caused by. She said, ‘Well sis, you have gained a little weight, maybe it’s taking your heart a moment to pump the blood through.’ I knew that wasn’t the case, but I didn’t know what else to do. I am only 20 years old. I have no knowledge of what is happening in my own body, and doctors were no help.
From September 2015 to December 2015, the problems grew worse each day. I could not lay my head down at night without sobbing because the noise in my ears was so loud. I sat inside in the dark so often. The only time I left my apartment was to go to class, go to work, and go to a mandatory sorority event. I became depressed. I gained more weight. I had a migraine every day for over 3 months. I felt incredibly alone.
On December 7, 2015, my 20/15 vision had grown so weak I went to the eye doctor to ask about getting glasses. On the way there, I sh*t you not, I told myself there will not be any random brain tumors or weird issues, this will be a quick visit. Nearly 3 hours later, I found out I may, in fact, have a brain tumor. My. Whole. World. Stopped. I received the diagnosis of IICH and Papilledema. I had no peripheral vision, and they discussed the possibility of blindness in the future. He said this could’ve been brought on from my weight gain, but the timeline correlated too closely to my birth control timeline, so I immediately stopped Aviane that day. I cried from complete fear. I left feeling confused, angered, and truly alone. I had to head back to school for my last final of the semester. The next day I would start my first internship.
My optometrist scheduled an MRI for January 2016 in Paducah, KY. I went into that MRI afraid of contrast, what the machine would be like, and what they might find. They said nothing was discovered. This prompted me to look for care elsewhere. I took the Spring 2016 semester off of my sorority. Thankfully, I was able to use my internship as the excuse, but ultimately I needed time to dedicate to traveling for medical care. I was set up with a neurologist at Vanderbilt in Nashville, TN.
In April 2016, I finally had my first appointment with the neurologist. My husband, he was my boyfriend at the time, came with me to my appointment. Dr. S suggested we do an MRV. He said it may be a better option than the MRI. So, that is what we did. From this, he discovered my sinus vein appeared to have collapsed, likely from a blood clot. He said stopping my birth control was the best idea and my stopping it so quickly is probably what helped in the long run. At this time, I was still menstruating normally. I had not had prolonged, abnormal bleeding since that summer of 2015.
In the fall of 2016, Halloween weekend to be exact, my boyfriend proposed. Shortly after, in November of 2016, the bleeding started again. I was broken. I was confused. I knew that doctors were not going to be helpful, and birth control was not an option. I just dealt with it.
In May 2017, I graduated with my Bachelor’s Degree! My fiance and I packed our bags and we were moving to Nashville the very next day. He had received a job offer and we were looking forward to a change. I did not obtain a job right away, but when I did I was able to finally get my hands on decent insurance!
On September 8, 2017, I had an OBGYN appointment with Dr. E at Vanderbilt. From this appointment, I had blood work, ultrasounds, and a pap smear completed. My wedding would soon approach on September 23rd, and all I wanted was to stop bleeding before our wedding. They said that may not happen. Instead… on my honeymoon, they gave me the PCOS diagnosis! Right when I returned from my honeymoon in October, I had a follow-up appointment with Dr. E. Yes, I was still bleeding. It turned out I had a polyp that would need to be removed because it had its own blood source and they were quite concerned. We scheduled surgery at her next and only available date for the rest of the year… the Monday before Thanksgiving.
The hysteroscopy and the D&C had a 48-hour recovery. This means, I would have surgery on Monday, recover for 2 days, and then the bank I worked at would be closed Wednesday-Friday. My boss said, ‘Oh so you would be gone an entire week?’ When I said yes, she told me, ‘We will have to see if that works for everyone else.’ I. Was. LIVID. I felt so helpless and infuriated by her carelessness and cold approach. I still had my surgery and quit the job shortly after.
Once the polyp was removed, and another was found and also removed, I had NORMAL and HEALTHY periods for 15 beautiful months! I had lost 30 pounds because of the popular pushed diabetic-based ‘PCOS’ medication, metformin, and lifestyle changes. Then, I quickly gained 40 pounds back, because of PCOS. We tried to conceive… no such luck.
In March of 2019, my husband, Evan, and I were in Philadelphia with our best guy friend, D. We had a great trip, except for the fact I started my period. A period that would soon turn into a question mark. Why am I still bleeding? What should I do? How did I cause this? Surely the polyps are not back? The polyps have to be back, right? I tried everything to get the bleeding to stop… I was spiraling. I waited until my annual check-up in September because, although I had insurance, random hospital visits were out of the question! In August of 2019, I started my Master’s Degree.
In September of 2019, Dr. E told me my ultrasounds were normal and ‘I really should be on birth control.’ I told her I knew the polyps were back, but no hysteroscopy was ordered. I did not want to cover the bleeding up, I knew it had to be more. I refused birth control. Despite bleeding, at this point, for 7 months, I still had a year full of adventure. A true ‘anything you can do, I can do bleeding’ mantra. That I did. I went to a million concerts, I visited DC, Baltimore, Philadelphia, Hanover, Pensacola, St. Louis, Pittsburgh, Gulf Shores, Napa, Sonoma, Bodega Bay, San Francisco, Asheville, Denver… I went all over the place. I looked normal, happy even, but on the inside, I wanted to die.
In November 2019, I wanted a change, so I bought a new car. I also asked my husband to apply for jobs away from Nashville. I wanted to get away. I NEEDED to get away. So that is what he did. We moved to Texas in March 2020. COVID shook our world, and so did my 12-month bleeding anniversary.
In June 2020, I finally got established with Dr. J in our new Texas town. She ran blood disorder panels and diagnosed me with Antiphospholipid Syndrome, Von Willebrand Disease, and a Folic Acid breakdown issue. My body was fighting itself. My ultrasound was ‘normal.’ Dr. E was right. My polyps did not return, but why did she never run blood disorder testing? I was angry all over again. I started taking new supplements prescribed by Dr. J and she set me up with a hematologist in Texas. My supplements were kicking in, but so were depressive episodes.
In July 2020, our world changed again. Next up, we were moving to Indianapolis. Here, I was set up with a hematologist. She said, ‘I am sorry you are going through this, but they read all of your blood tests incorrectly… you do not have any bleeding disorders.’ CUE THERAPY. I started seeing a counselor right away because I was scared of what I may do if I did not start talking to a professional. In November of 2020, I graduated with my Master’s Degree. I kept bleeding. No changes… no guidance. In January of 2021, we moved again. Chicago would be amazing, so many wonderful medical facilities! I decided to change pace and take my private journey VERY public.
In February 2021, I made my first TikTok. A video about my ‘700 day period’ went viral and my little community of people I never knew I would find, has grown to over 33,000 people. Their stories and shared experiences pushed me and inspired me to ask more questions and advocate harder for myself, so I DID! Especially since my medical care in Chicago was the worst experience yet at that point!
In April of 2021, I visited the Mayo Clinic in Rochester, MN with so much hope for what they would discover! I saw a nurse practitioner in the OBGYN department. We will call her, Nurse W. She was kind, I felt seen. I had blood work done, an ultrasound, and she scheduled an appointment with an endocrinologist for my PCOS. I felt on top of the world at only 9:00 in the morning. At 5:00 p.m., my world crashed again. I received a message from her stating, ‘Everything came back normal. At this point, we suggest birth control.’ I asked very intelligent and intriguing questions, to which she responded, ‘I realize you are frustrated.’ NOW. Now I am frustrated. I told her I did not go to arguably the most accredited hospital in America to be told ‘just take birth control.’ I told her my polyps were back, but I was ignored.
Then, I met Dr. Todd Nipoldt. He changed my life. He is the first endocrinologist I have ever seen and I did not know what to expect. He knew I had success with my PCOS in the past and my biggest issue was to get the bleeding under control. He said I am APPROPRIATELY RELUCTANT to avoid birth control. He said the bleeding IS NOT DUE TO MY PCOS. He validated me and he changed my life. He said, ‘The NP you saw said everything is normal, everything is not normal and I am ordering a surgery consult.’ Thank you, Dr. Nipoldt. He has since retired and I only hope there are other doctors like him.
In June 2021, I saw the chair of the OBGYN department for a hysteroscopy. I had to go alone, for many reasons. My husband offered a million times to come with me. Two friends offered. I just couldn’t justify everyone’s life stopping to be there with me if nothing comes of the visit. Well, I wish I wouldn’t have been alone. My uterus ended up being full of polyps. They did an endometrial biopsy with no anesthetic, local anesthetic, or numbing of any sort. I was sobbing and inconsolable from seeing the polyps on the TV and learning I was right all along. While in emotional distress, they did the endo biopsy and I was completely broken all over again.
The doctor said, ‘You will go on birth control, pick the pill or IUD.’ After much consideration, I have decided to not return to Mayo OBGYN. It was their department that was prepared to turn me away. I am confident my new doctor in Texas will be able to perform my surgery and come up with my new treatment plan. I have received my current answers. I do not know what the future holds for me, the polyps could return. I may never have a baby. There is uncertainty of what my life and my husband’s life will look like. He is my biggest supporter. We have made it this far. I HAVE MADE IT THIS FAR.
No matter what happens to me, I plan to continue advocating for my online community of bleeders who still do not have answers. I have partnered with REVOL undies to share information on period undies (which absolutely changed my life), I have spoken on podcasts, and I may even have a few avenues in the works to tell more behind-the-scenes stories about my personal journey.”
This story was submitted to Love What Matters by Cierra Laird from Dallas, TX. You can follow their journey on Instagram here and here, and on TikTok. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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