My fibroid story
Updated: Aug 7, 2022
It's amazing how fibroids are so common and yet symptoms and experiences can vary so vastly from woman to woman. It's also very unfortunate that fibroid symptoms are often minimized and underestimated due to the fact that the tumours are (for the most part) non cancerous.
If you're reading this, you most likely already know what a fibroid is; a non-cancerous tumour located in and around a woman's uterus. They can vary in dimensions from the size of a pea to the size of a watermelon. If you want to know more about them in general, I strongly encourage you to do some web surfing and you would find countless articles, papers and videos on the topic. For today, I shall be discussing my own personal experience.
I got officially diagnosed with fibroids around 2014. I had started getting really heavy periods, I was anaemic and had been getting terrible cramps some months prior - I had even passed out from pain on the bathroom floor. My doctor at the time sent me for an ultrasound and it revealed I had a few fibroids. He put me on Tranexamic acid to help with the heavy bleeding and recommended I take Ibuprofen extra strength for the pain.
Within the next couple of years, my periods kept getting worse and worse. I would absolutely dread my period's arrival each month. I would get anxious, wondering how many pyjamas I would stain. Would I stain my mattress again? Would I be able to make it to work the next day? Or arrive late because I had to wash some stained clothing. Or would I be too tired from getting only 2 hours of sleep the night before because I had to keep going to the bathroom and severe cramps had me bawling my eyes out? Or did my pad got too soaked while I was getting ready and right before work, I had to run back to the bathroom, change again, before dashing out to the door to catch the next bus?
I would cancel plans with friends if my period came. Sometimes it would show up 3 days early and whatever plans I had had originally would be postponed - I was not about to end up on someone's Twitter feed because of a big red stain on my backside! My symptoms while on my period included: headaches, extreme lower back pain and soreness, extreme abdominal cramps, very heavy bleeding, nausea, frequent urination and bowel movement, severe bloating and fatigue. (I did not add irritability because I feel like that's every woman's symptom while on her period).
When I would take the tranexamic acid, I would clot even more and boy did I hate the clots. I could go for an hour with barely any blood, stand up to go to the kitchen and WHOOSH, a blood clot would make its way out of my uterus and smack itself right into the pad. The biggest mistake you can make after passing a large clot is to sit down. Do not ever try to sit down until you have gone to the bathroom to clean yourself up first because if you shatter that clot while sitting, say good bye to your couch. The blood that would ooze out was alarming. On my heaviest days, I would go through an Overnight maxi pad within an hour. I was losing so much blood during my 5-7 days of bleeding that I was severely anaemic. I kept wondering where in my body all this blood was coming from. I was put on iron tablets, which I hated so much. The tablets would make me so constipated and uncomfortable that I would skip taking them for days, just to feel normal here and there.
Within these same few years, I started experiencing pelvic and lower abdominal pain even when I was not PMS-ing and not on my period. My lower abdomen also started protruding more, but I blamed this on weight gain. This was when I went to see my doctor again. He referred me to a (white) male gynaecologist who did an ultrasound, blood test etc. He said one of my fibroids was on top of my uterus, having thus increased its surface area and changed its form while another was lodged in a cavity and was responsible for the heavy bleeding. He confirmed with me at that time that I wanted to have children and we opted for a less invasive approach. There was a promising new drug on the market called Fibristal which had apparently been successful in temporarily shrinking fibroids and also served as a form of birth control whereby I would not get my period while I was on it. Say less doc! I signed up for it. The deal with Fibristal though was: 1) You could only take it 3 months at a time and then have to be off it for 3 months because it was such a powerful drug and 2) it was expensive. When I started taking the drug, I had work insurance covering 80% of the costs but when I was let go from my job back then, shelling out $400/month became impossible and so I stopped taking it. Not long after that, Fibristal actually got recalled and pulled off all pharmacy shelves about a year or 2 later. Apparently there was sufficient concern and evidence that it could cause liver failure in some women.
Fast forward to 2018/2019 and I was still experiencing all of my initial fibroid symptoms and more. I had been the lowest weight I had ever been in a long time and yet my lower belly was protruding, no matter how much weight I loss and how many exercises I did. I had a mini six pack...and then a pooch. I thought it just came with getting older. I read about Fupa's and concluded I had one. It wasn't too bad when I was at my smallest in terms of size but as months went by and I packed on about 10 pounds or so, it just seemed more pronounced. High-waist jeans did not look the same on me. Why was I always bloated? Why were things fitting a little tighter around my abdomen? Why was it so hard?
I had a new family doctor at this point and he referred me to my (white) male gynaecologist once more and he in turn prescribed more tranexamic acid for the heavy bleeding and Mefenamic acid for the pain. He said surgery would be the next step if I wanted but did not recommend it because I had not had kids yet. Every time I went to see him, I felt as though he thought I was exaggerating my symptoms. Did he think I wanted a narcotic score? He was so relaxed and chill about everything. As though this was normal. Sir, I feel as though my uterus is about to drop out of my vagina on any random day. At other times, I can't squat and pee because there's a sharp pain going through my pelvis. I would get weird muscle spasms in my pelvis that would have me hunched over and frozen in pain until it subsided. I was wearing adult diapers for Christ sakes! I would wear them on my period to help prevent accidents (yes, even to work, I would be out here rocking my diapers) and I would wear them at times when I was not on my period but was in so much pain that I could not squat and urinate. My doctor put me on birth control (which I knew was a temporary fix) to at least give me some relief. I would get my period for exactly 3-4 days and the pain was less but the fibroids were still thriving and were the same size. Fibristal over the years had not shrunk them.
The one incident that had me booking an emergency appointment with my doctor and convinced me to get a myomectomy was in March 2019. I went to NYC for a friend's birthday and my period showed up 4 days early 4! I was devastated. I had not travelled with a pack of pads because I assumed I would at least be back home before this mess started. I bought a pack of pads at a nearby corner store, put two on and headed to visit another friend. I placed 2 extra pads in my bag for 'just in case.' The subway was about a 10 min walk from my starting point. By the time I got to the subway station, I could feel that my pad was completely soaked. I was wearing a dress with boy shorts underneath (for an extra layer of protection) and could feel that getting soaked away. As I stood on the subway train, what I feared the most started happening. As I was holding the railing in my train cart, I felt period blood trickle down my leg. Yes, I was bleeding right onto a New York Subway train! I held back tears. I still had quite a ways to go before getting to my friend's place. Should I turn and head back or keep going? I decided to keep going. It was almost nightfall and so the train wasn't packed. I stood in a corner until my stop. I avoided eye contact with everyone. I prayed no one looked at my legs! I could not get into an Uber or I would destroy the poor driver's seats. I power-walked the rest of the way to my friend's place and as soon as she let me into her door, I asked for her bathroom. I was shaking, I was embarrassed and I was dripping on her floor. My period blood. On her floor. I was in her bathroom for almost an hour: hand-washing what I could and trying to clean myself up as much as possible. It was as though I had not doubled my pad before coming. My friend provided a towel for me to sit on before sitting on her couch, made some peppermint tea (it was that night I discovered that peppermint tea helps with the cramps) and proceeded to share her fibroid story with me. She had had surgery, a less invasive one, to remove her fibroids and was doing much better. Wow. A light bulb turned on for me. I had only ever heard of word-of-mouth horror stories about women who had had surgery to remove their fibroids - none of them had been able to have children after the procedure due to the scarring of the uterus. I had reached the point however where my current quality of life was worth more than any children I may or may not have in the future. Technology had come very far as well and there were other ways to have kids. A part of me had been holding out this long because I was hoping to fall in love with my soul mate, get married and have babies before things got worse. I would just get a hysterectomy after I was done having kids and I would live happily ever after fibroid-free! Not anymore. I was going to get a myomectomy.
I made an appointment with my doctor upon my return. I ignored all his anti-surgery talk and requested he refer me to an OB/GYN. I let him know I wanted a black female OB/GYN. Living in Ottawa, that's like finding a unicorn so I reasonably told him I would settle for a woman, regardless of race. Seeing a specialist can take time...and Covid happened not long after so I had to deal with my fibroid symptoms much longer than I had hoped.
I started following more fibroid groups run by black women. I was so happy to see I was not alone and to also see that there was a beautiful life that could be lived post-myomectomy.
In the meantime, my doctor had me go for an ultrasound to see what had become of the fibroids and although at one point I thought they had shrunk thanks to some herbal medicine from back home, unfortunately, the scans showed they had not. My sister had suggested I ask my doctor to request a hormone test be done and I'm glad I did because the results of that test changed everything.
About a week before my birthday last year, I got a hormone test done. My doctor called me and the first thing he asks was, 'since our last appointment, have you given birth?' I responded no, with 100% certainty. He explained to me that my prolactin levels were very high, indicating that I was lactating/breastfeeding. He asked if I had noticed any discharge from my nipples to which I respond negatively, just some itching around my areolas. He requested that I re-do the test, which I did some days later and lo and behold, I got the same results. He told me that I needed to go for a brain MRI because normally if the prolactin levels are that high and there is no baby, then there is usually a tumour in the brain. Of course I started to get just a little concerned but the whole time, a part of me thought that this was somehow related to the fibroids.
I go for a brain MRI in the new year and there is no tumour. My OB/GYN however has a different theory from my doctor, and one more similar to mine - she believes my fibroids might be causing the high prolactin. It is not common but possible, according to her and the only way we would know is post surgery, after blood work is done at that time. I was just happy I did not have to worry about a brain tumour in addition to all of this.
I was able to see my OB/GYN way ahead of schedule thanks to a last minute cancellation. I was looking at 6-12 month wait when I got a call one afternoon advising me that someone had cancelled their appointment the following day and the doctor could see me! Best believe I showed up the next day on time. The appointment was supposed to take 30-45 minutes and ended up taking closer to 1.5 hours. For the 1st time in a long time, I felt seen, heard and understood. My doctor had a med student-in-training ask me so many detailed questions no one had ever asked me before and I found myself weeping in her office when I recalled all the embarrassing moments I had experienced at the hands of my fibroids.
That very day, a pap smear, cervical biopsy and blood work were done. I was also prescribed Lupron, a menopause-inducing injection which was supposed to help shrink the fibroids.
By this time, my lower abdomen is protruding heavily and is hard to the point where I avoid lying on my stomach because it hurts too much. I legit look 5 months pregnant upon all my exercising and healthy eating. My gynaecologist used her hands to do an abdominal exam and told me she could feel some of the fibroids. Later on, an ultrasound reveals the large one has even enlarged the surface area of my uterus and changed its shape.
At her office, I was also informed that there was a huge backlog for surgery due to Covid and nurse shortages and so I could be waiting 6-9 months for my myomectomy but the Lupron (and Norethindrone) were supposed to make it more bearable because I would not be getting my period. That made me more hopeful. I would be going to the office every month for the injection (in my behind) and I was also placed on iron tablets. The Lupron gave me some serious menopause side effects such as the hot flashes, dryness, cold sweats, low libido, irritability etc. I think I have an idea of what menopause would look like for me, haha.
I experienced one of my happiest and saddest moments of 2022 within weeks of each other when my doctor called me one day to say she had a surgery date for me in June - YAY! I had only been waiting about 3 months! I was elated. I started seeing an end to my suffering. A light at the end of the tunnel...and it all came to a screeching halt when my doctor called me some weeks later to tell me that the surgery had been cancelled due to a Nursing staff shortage. This was about six weeks before the scheduled date. Oh how I remember crying like a little baby that day. A very ugly cry. It's like being told you're headed to an all-expense paid vacation in 2 weeks...and then being told there are no pilots available to take you there. My doctor was unsure when the surgery could be done. I asked her if she knew of any private clinics that could do the surgery and I would pay out of pocket. I asked if I could get it done in Montreal but she said the nursing staff shortage was national and not just regional. I was devastated.
My body and these darn fibroids are very stubborn because unfortunately the iron pills did not work and I was forced to get iron transfusion to bring my iron levels up prior to surgery. It was so weird walking into a hospital during the day and sitting with the chemo patients getting their treatments while I'm there, lying in a bed getting my iron transfusions.
Even with my higher iron levels, my body was telling me something was up with these fibroids. I remember complaining to my sister that I felt heavy and would not be surprised if I had more and larger fibroids than my doctor thinks. I had read articles about this happening to many women.
Not long after I had begun having these thoughts of mine and was still continuously bleeding, my doctor requested I get an MRI done of my uterus instead of my regular ultrasound. Lo and behold, after about 4 months, the Lupron had not helped to shrink my fibroids; on the contrary, my doctor called me with the results, to tell me that the largest fibroid had tripled in volume! Holy! It was growing...and quickly. With concern in her voice, she told me she would refer me to an Oncologist because normally that type of expeditious growth was linked to cancerous fibroids and she wanted to be sure that was not the case with me. In addition to all of this, I was also bleeding non-stop. It began mid April. I got my period and it just , well, never left. I would get some debilitating sharp pelvic and groin spasms which would leave me in a pool of tears and in a position I would not budge from for an hour or more. Naproxen has become my go-to drug for whenever this occurs, which seems to be more right after I get a Lupron injection. Sometimes I would call my mom in the heat of it and she would tell me to call 911 and hopefully that would make them give me an emergency myomectomy. However, I had a feeling that would not be the case. ER wait times are on average 10+ hours if you're not literally dying. I could not imagine being curled in a ball in a crowded ER waiting area...only to see a doctor by the time my symptoms had already subsided.
Towards the end of May, my doctor had called me to let me know she had a new surgery date! Yes! Hope was mine! The light was back on. Again, I went into prep mode. I had already been seeing a doctor or nurse on average every week at this point; be it for blood work, an ultrasound, an MRI, a transfusion, an injection or anything in between. More tests had to be done now that a date was set.
When the word 'Cancer' is thrown out there, everything happens so quickly. I was able to see an Oncologist within a week of my gynaecologist's referral. He had requested another ultrasound and MRI prior to my appointment with him. He told me the tumours seemed to be pretty homogenous (a good thing) but he would only know for sure after a biopsy was done post -surgery. He suggested we wait until then to know our next steps.
Here I am now, a couple of days to surgery, writing this post to share my journey with the world. No two fibroid stories are the same. Some women go their whole lives with no symptoms and then some of us just get it all. Mark my words though, I will not be surprised if they go in and find more/larger fibroids. I can feel something is up. This past week, I have felt them moving. It's almost like they know their time is soon up and they're out to make my life as miserable as possible before they're set free.
I had my last pre-op appointment today (had to get a Covid test done) and have been avoiding crowded spaces. With Covid numbers drastically increasing, I do not want to risk postponing my surgery so close to the date! I can see the finish line!
I have watched dozens of myomectomy vlogs and YouTube videos by black women. I have been following fibroid pages. Everyone seems much more energetic after the surgery. Those of us with the protruding abdomens see a significant shrinkage of the pouch. I am ready for the uphill recovery. I understand how tough it could get and I am ready. With my mom by my side, I am ready to conquer this! This is my 1st major surgery. 1st time being placed under general anaesthesia. Lots of firsts that I am ready for post-surgery though; like having a normal period!
Thanks to the several videos I have watched, I have also prepared a myomectomy wishlist and am happy to say most of my purchases have already arrived, including my C-Section panties! I'll be creating a post dedicated to just helping women with myomectomies know what to get to prepare and have a more comfortable recovery. There are so many things no one tells you, even pre-surgery; such as, you cannot have nail polish! What?! I'll be sharing more information after I go through the process.
I can't wait to come back with my post-myomectomy report!
Do say a prayer for me.