My Journey with FIBROIDS

As with everything now-a-days, you can find loads of information on the internet about most topics; fibroids included. In my posts, I’m trying to avoid giving you a copy and paste of what you can find from a Google search. What I do want to offer is my story. I think that there is great benefit to hearing things from the perspective of an actual patient versus what you can find from medical resources or even the physicians themselves. I’ve been moved to write because I know that I would have loved to hear someone else’s story and experience with so many things that I’ve muscled through; especially over the past 4 years.

So what the heck are fibroids? In a nut-shell, they are muscular tumors that can grow in any part of the uterus and almost always benign. I don’t know exactly when my fibroids were large enough to be detectable in any sort of imaging, but I know I was 28 years old when they were first diagnosed.

Being Diagnosed

I struggled with very difficult menstrual cycles ever since my first period. When I was about 13 or 14, my mom took me to her gynecologist for my symptoms. That doctor pretty much told me that this is just how it goes for some girls and women. If I was older, she said she would put me on birth control which sometimes can help lessen the severity of symptoms. To cope with my absolute worst days of pain, she prescribed codeine. So early on, if I was at a breaking-point for pain, my mom would leave work to pick me up from school so I could go home and get through it with some codeine. As I got older, I just trained myself to muscle through those days without any drugs. If I chose to take “sick days” for every period, well then I would have missed out on a lot of school and sports. Sometimes we work to adapt, both mentally and physically, to crappy situations. I’m guessing that’s the case with a lot of painful conditions. My physical symptoms did not lessen. I made the choice to grin and bear it.

The first time I had a gynecologist do more than just tell me, “that’s just the way it goes for some women”, I was 28 years old. I described to her the pain not just during my period, but by then, I was coping with pain several days leading up to my periods. I also had a history of migraines and very heavy bleeding for the full length of my period. I wish I had a picture to capture the look of shock on my face when her response was, “Ok, let’s do an ultrasound right now to take a look and see what’s going on”. Wow, for the first time, I had someone sitting across from me who was not dismissive of my symptoms. Cool. So that’s the day I learned I had 3 small fibroids. I was happy to finally get a reason for my worsening symptoms. Unfortunately, there wasn’t much in terms of treatment options for fibroids at that time. She told me this was the type of condition that we would monitor every year, and it would have to be up to me to let her know when the pain and/or my quality of life was bad enough that I’d be willing to have a partial or full hysterectomy. Since I was still on the younger side, she didn’t recommend I consider that option if I could still cope with the pain and other symptoms. She also mentioned that fibroids typically shrink to the point of not being detectable once you hit menopause since what feeds them is blood and hormones. Yikes!

Moving Forward

The symptoms I coped with were just a part of my life. As time went on, I’d modify routines or activities as needed to deal with the pain and discomfort of heavy bleeding. There was even a period of time when one of my grandmother’s would mail me some of her prescription strength naproxen sodium for days when the pain was relentless. That was actually the only drug for pain that proved effective for me, and best of all, I could still go about my day. Eventually, I learned to search for that as the active ingredient in OTC drugs, but the recommended dosage wasn’t effective. I’m not suggesting anyone do what I did, but I would eventually take 2-3 times the recommended dose so that I could get some amount of relief. My logic was that I had been able to tolerate a high prescription strength of it, so maybe it was okay, but mostly I was just in a lot of pain.

Why did I continue to endure the pain? Again, the option that had been given to me when first diagnosed was to sign up for a hysterectomy. I wanted to keep my uterus. Not only because I was still of child-bearing age, but something just didn’t feel right in my gut about losing a part of me. Maybe I just felt like I was too young to lose such a major part of my anatomy and deal with all the potential side effects that come with that procedure. I felt that if I just had to deal with the worst of it a portion of every month, then I would try to move forward until menopause.

Moving into my late thirties, symptoms slowly started to become more intense. It was mostly severe cramping that would start several days before I would actually get my period and not let up until the last 1 or 2 days of a 7 day period. The bleeding got heavier, my mood more mercurial, and I had more intense bouts of fatigue. Unfortunately, the Dr. who originally diagnosed my fibroid condition stopped accepting my insurance just 2 years after I first met her. I moved on to find other doctors and would repeat my story every year hoping that I would find someone else who would not be so dismissive of my symptoms. Through my 30’s, no other doctor thought it necessary to repeat the ultrasound to see if the tumors were growing or if something else could be going on as well. It was the same response every time, “are you ready for a hysterectomy?”.

Looking back and knowing what I know now, I wish I had given myself more time to rest during those years. That’s not really the culture we live in is it? I know I’m not alone. Especially for women, like myself, who have chosen careers that are male-dominated: “Never let them see you sweat”, right? So I kept going. I didn’t just keep pushing through the pain at work, I made a strong effort to maintain a regular exercise routine. By my 30’s, part of my exercise routine included long distance cycling with my husband. I haven’t quit many things in my life, but by my early 40’s, I put a pause on my road cycling days. Honestly, I really thought a lot of the discomfort and frequent pee breaks that I had to take were a sign of me being a shitty cyclist. Knowing what I know now, I still think I’m a crappy cyclist, but I also know a lot of the discomfort and those frequent pee breaks were a result of what was growing inside of me.

By my early 40’s, the symptoms were affecting every aspect of my life. I’ll never forget the business trip I was on where upon returning to my hotel room after dinner one night, I discovered I had bled through my jeans. I felt like my insides dropped to the floor in humiliation at that moment. FML is all I was thinking. Suffice it to say, the bleeding was getting out of control.

Enough is Enough

My annual gynecologist visit was shortly after this humiliating business trip. This doctor had been seeing me for a few years now, so my fibroid situation wasn’t new to him, but he had never written me a prescription for an ultrasound despite my repeated requests. He would always ask the same question, “are you ready for a hysterectomy?”. February of 2016 he changed his tune; at least in terms of agreeing that I should get that ultrasound. In the physical exam, he said he could actually now feel one of my fibroids in my pelvic area. He told me it started just below my navel and seemed to span my entire pelvic region. My husband accompanied me for the visit when I got the results of the ultrasound. The report stated that due to the size of one of the fibroids, the radiologist was unable to discriminate everything that needed to be viewed. An MRI of my pelvis was recommended to properly evaluate the situation. After reading me these results, the Dr. proceeded to let me know what dates he was available to schedule me for a hysterectomy. Hold your horses cowboy! I asked about getting the MRI that was suggested by the radiologist, and he responded that it’s really not necessary since he would be taking everything out of me anyway. In that moment, all I knew is I needed to get this fucking doctor to give me a fucking prescription for that MRI. Why? Even if ultimately I was going to just have everything taken out of me as he stated, this was not the doctor who I wanted to go into surgery with. By then, I knew I could also take my MRI to my brother-in-law and his wife who are both radiologists to get their honest opinions. I made it clear that I was not ready to have him pencil me into his calendar for the hysterectomy. He reluctantly gave me the script. However, he couldn’t resist insisting that he would see me in surgery. Moreover, he planted the “C” word by suggesting that “heaven forbid that you’ve got a cancer growing in there as well in which case you’ll have to get a full hysterectomy not just a partial”. It took everything in me not to shed a tear in that moment, and I begged of myself not to let this asshole see me break. I made it to the elevator just in time.

MRI Results

Final impression written for my MRI, “Massive fibroid with 2 additional small fibroids identified in the uterus”. When my brother-in-law popped the CD of my MRI into his computer he immediately looked at me and asked “how do you feel?” He was in awe of how humongous this thing was that I had inside of me. In a nut-shell, it had taken over my entire pelvic region and was squishing all the organs in its vicinity (i.e. my bladder, which explained the constant urge to pee). He put me in touch with the gynecologist who he considered the best doctor to see at this point because there were actually a couple other options for me to consider.

Find a Doctor Who Cares Enough to Listen

From my first visit with the gynecologist my brother-in-law referred me to, I felt like I was in the right hands. When I was speaking, he maintained full eye contact and LISTENED! If I asked a question, he again maintained full eye contact and could respond without hesitation or doubt. He gave me a thorough explanation of what my situation really was and the options that existed for me to consider. OPTIONS! We went through each procedure in terms of what it is, and the pros/cons of each. He identified which of them probably made most sense for me to consider given how severe my symptoms were and size of the tumors. Before making a final decision, I talked things over with my brother-in-law who is actually trained to perform one of the least invasive procedures that exist for fibroids (fibroid embolization). Ultimately, I decided that the best option for me would be to undergo an abdominal myomectomy.

They Wanted Out

Four months passed from when I got the ultrasound results suggesting I needed an MRI to when I went into surgery. During those 4 months, every symptom worsened; especially the bleeding. One month before going into surgery, my doctor put me on hormone therapy to eliminate the heavy bleeding which by then was daily. If we could not stop the bleeding, there was no way he could take me into surgery. For that reason alone, I endured the side effects of the hormones; severe migraines every week and nausea with or without the migraine. Fortunately, as I got closer to the day of surgery (June 6, 2017), the side effects lessened. 

Surgery day couldn’t have gone any better! Seriously, my doctor and everyone involved with my pre-op stuff had a fantastic bedside manner with me. I was so surprised. Why? Well, my mom has been through several surgeries in her life, and I don’t remember any of them being as pleasant as my experience. After some initial prep, they even allowed my husband, mom and brother to all be in my little pre-op room simultaneously. They stayed through seeing multiple doctors and nurses come in for exams, bloodwork and questioning. They were with me all the way up until I was ready to receive the first drug that would make me woozy enough to cart me into the OR. At best, for all of my mom’s surgeries, they would allow one person to go in for a very quick hello/see ya after surgery visit after all the prep work was done. I kinda felt like it was a gift from the universe for all the crappy surgery experiences my mom went through, and for all the years of fibroid trauma I had endured. For the super curious who do not get queasy looking at blood and guts, click here to see what was taken out of me.

Recovery

From the moment I opened my eyes in the post-op room, recovery was brutal. My surgeon had told me he would want me standing and walking the same day of the surgery. He came to see me several hours after my surgery equipped with pictures and ready to give me a full play-by-play of the procedure. Normally, I’m all for getting every bit of detail about my health, but I had to politely ask him to put the brakes on his story. My mind was spinning and the post-op nausea was starting to set in. He smiled and let me know to forget about the walking he has asked me to do in the evening. “I did a lot of work in there”, he told me, “your uterus has been reconstructed in 4 layers and there’s a lot of healing that has to happen, not just the incision”. Getting up to walk would wait until the following morning. After under-going an abdominal myomectomy, the typical hospital stay is 3-4 days. My doctor wanted me out the next day. He believed the risk of catching a hospital infection was too high, and he would prefer I recover at home if I could tolerate it. I was absolutely on-board to getting home as soon as possible. Actually, I recovered at my mother’s home so that I would not be alone all day while my husband was at work.

Searching for how to summarize the initial 5 weeks of recovery is a challenge. It wasn’t pretty. After just a couple of days, I had to stop the prescription pain pills because the persistent nausea was more debilitating than the pain. Once I stopped the pain prescription and started a prescription for nausea, it took several more days for the nausea to subside enough that I could start eating a bland diet. After realizing how much pain and nausea I was dealing with after a couple of days, my doctor gave me the option of being admitted back into the hospital. I refused. I felt like I had already made it through the worst days, and I wanted the TLC I was getting from my mama. No drug, no matter how strong, can do for me what being in the presence of my mama does for me. She heals my soul and makes me feel like everything is going to be okay. And so it was, okay I mean. My doctor gave me 2 goals until the nausea subsided, walk and hydrate. He let me know, I could actually go many days without eating as long as I stayed hydrated and was getting electrolytes (Gatorade, Pedialyte and stuff like that). Walking several times throughout the day was also really important for restoring me physically. Having surgery in the month of June in the sunshine state meant I would just take really slow laps inside my moms house a countless number of times throughout the day. When my husband would leave work, he would visit and take me outside for what was the slowest paced walking you could ever imagine. Initially, I was clocking a 31 min/mile. After 5 weeks, I had sped up to 16 min/mile. Progress.

As for the pain, well, I can’t think of the words to describe it. Had I been able to tolerate the pain prescription, I guess it wouldn’t be so memorable, but that wasn’t the case. My entire torso felt so banged up, I started preparing myself mentally for the possibility that I may never get back to some of my more strenuous workouts. I felt like things were so broken internally that there’s no way I could get back to running, cycling, gym workouts. Lying down in bed wasn’t even an option for the first couple of weeks. I felt too much pain from the extension created by lying down. Trying to lay on my side is a pain and discomfort I will never forget. I immediately felt like every organ inside of me crashed hard toward the side I was trying to lay on. I made it through all those weeks by sitting and even sleeping in my mom’s Relax-the-Back electric recliner. Setting a game plan one day at a time is how you get through this surgery’s recovery. Every few days, I’d try a new movement and see what my body was ready to handle. For the first time ever, I made the wise choice to listen to what my body was asking for; patience. It was a really good time in my life to turn toward the less physical aspects of my yoga practice. That provided a level of mental healing that I continue to work on to this day.

Life After Recovery

There were multiple stages to recovery. I refer to the first 5 weeks as the initial phase because that’s how much time I took off from work. Once I went back to work, my doctor still didn’t want me lifting anything more than my purse and a lunch bag. Heavy lifting and bending is a big no-no after this surgery. I’m foggy on if it was 2 or 3 months before results from an ultrasound gave me the green light to start experimenting with introducing more exercise and safely lifting items heavier than a purse. It was just a bit of trial and error. I definitely treaded more cautiously than I ever had with anything else I had been through. After enduring the surgery and especially the initial weeks of recovery, there was no way I wanted to risk inadequate healing. For 3 months after the surgery, my doctor also kept me on the same hormone therapy I started prior to surgery. He wanted my uterus to be fully healed before I started menstruating again. Somewhere between 3 - 6 months post-op, I got the green light to try for a pregnancy if that was my desire. I think my memory gets kinda foggy at the 3 month mark because by then I was feeling so much better. I knew that I was on the road to getting back to everything I had put on hold for this surgery. It seems like I have a great memory for my most painful moments in life, but once the clouds start to break, things get kinda hazy. Don’t know if nature intended things to be this way, or if that’s just me. Don’t get me wrong. I have plenty of good memories. I have very vivid images of some of my best times in life. I just sometimes wonder why phases like my 3-6 month mark after surgery start to go hazy after enduring so much pain. I do know that by the 6 month mark, I had no restrictions to my activity. I never knew how bad I felt for so many years until I felt better. Fortunately, I haven’t dwelled on that since recovering. Of course, I wish I had been able to feel as good as I do now when I was younger, but I can’t change the past. “Every second I waste thinking about the past, is a second I’m not focused on the present.” Don’t recall exactly who was quoted as saying that, but it’s a quote that has stuck with me ever since I heard it. I’m so very grateful that I was able to get through my abdominal myomectomy. I’m also very grateful that I had at least 2 ½ years of feeling fabulous on all counts before some other changes in my body started to take place. In terms of recovering from the abdominal myomectomy, I’m happy to report that I made a full recovery and have no limitations on what physical activity I can now do.

NEVER EVER STOP ADVOCATING FOR YOURSELF!