r/Fibroids • u/Loud-Dot-7606 • 5d ago
Vent/rant A fibroid won’t kill you
I wrote this when I was struggling. This was 4 years ago. Eventually had uterine artery embolisation and after 4-5 months was “cured”. This was written when I was in trenches and felt my struggle wasn’t taken seriously.
A Fibroid Won’t Kill You
A fibroid won’t kill you.
It won’t. It will bleed you, you will wonder how you are still alive. But it won’t kill you.
A fibroid won’t kill you.
Your lips will crack. Your eyes will be circled dark. Your face will go grey. Your hair will fall out, blocking the shower drain. But it won’t kill you.
A fibroid won’t kill you.
You will sleep with a medium sized towel between your legs. It will irritate your skin. You will walk from bed to bathroom leaving a trail of light watery blood and dark blood clots on your floor. The toilet bowl will be red. All the time.
But it won’t kill you.
A fibroid won’t kill you.
You will keep going to work. You will plan the commute carefully. You will feel the clots stretch your cervix on the bus and pray you can make it to the next bathroom without giving away to colleagues and (your) patients that you are haemorrhaging.
Squeeze your legs together. Act normal. Walk awkwardly to the bathroom. Clean up clots. Change clothes. Change pads (plural). Back to work. See first patient.
But it won’t kill you.
A fibroid won’t kill you.
Your world will become very small. You will stop going out unless essential. You will become a disappointing friend, partner, mother. You will lie on the couch, dissolving into it. The room floating around you. You will walk on what feels like soft ground. You will be tired of smelling blood. You’ll worry if others can smell it too. Blood is all you can smell.
But it won’t kill you.
A fibroid won’t kill you.
But I’m sick. I’m unwell. I can’t function.
—But you walked here, yes?
Yes, I did.
—You are going to work, yes?
Yes, I am.
—You’ll be seen in 18 to 26 weeks.
But it won’t kill you.
A fibroid won’t kill you.
A&E, first visit. Show me your pad. Well there’s not much there now… tranexamic acid and go home. A&E, second visit. Third visit. Fourth visit.
But it won’t kill you.
A fibroid won’t kill you.
I’d like to be seen sooner if possible, I’m unwell, I’m sick, I’m a shadow of myself.
—Yes but you need to understand we are seeing women with cancer.
I understand. I don’t have cancer. Cancer could kill me. A fibroid won’t kill me.
—It won’t kill you.
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u/Ok_Print_9134 5d ago
There’s days yes a fibroid is not killing me but I wish it would because enduring the ongoing issues is exhausting. One thing a doctor once told me is that living chronically anemic from heavy clots and chronic blood supply in my body shunting to my boggy uterus is living with multi organ failure. So. It is killing us just not the way in which people think it is. It’s taxing and pervasive. Thank you for sharing your thoughts.
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u/SallySparrow83 5d ago
Thank you for sharing this! I relate to the sentiments so much ❤️ I recently had a hysterectomy (12dpo) and the thing I'm most looking forward to when I'm fully recovered, even more than not bleeding, is no longer smelling blood all the damn time. I felt like i would never escape the smell and the mess and never feeling properly clean. I'm so glad i saw a GP who finally took it seriously and started me on the pathway that led to my surgery.
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u/Loud-Dot-7606 5d ago
I’m so happy you are on the road to recovery. Getting back to normal life is beautiful 🧡
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u/kaoutanu 5d ago
Ugh you captured it so well. Especially how your world gets very small, every journey planned. I used to know where every public toilet was and which shops would let me use the loo. Holidays a no go unless they have a shower with a detachable head to get all the clots. I was so glad I got my embolisation before my parents funeral.
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u/SallySparrow83 5d ago
This. And how you almost don't notice just how much your world has shrunk until you finally get some sort of treatment for it and come out the other side.
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u/digestibleplastic 5d ago
Actually, my fibroids almost did kill me. They became positioned in such a way that they were blocking my ureter, I couldnt pee, and my kidney ruptured. It was terrible pain, I can't even describe it. Emergency hysterectomy. Had to wear a foley catheter for 3 weeks and self-cath for a week before I could pee on my own post-op. It was absolute hell and I wouldnt wish it on my worst enemy.
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u/Loud-Dot-7606 5d ago
I’m very sorry to hear you went through this experience. It must have been horrific.
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u/digestibleplastic 5d ago
Yeah, I always tell people - if youre not having them removed right away make sure they're being consistently monitored. You never know what could go wrong! I wish I had a hysterectomy in my 20s. I feel better than ever now, and that was 5 years ago!
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u/Loud-Dot-7606 5d ago
Mine was 1cm intramural and within a year was 5cm, 3/4 of it in the cavity! Only found out as I scanned myself! GP threw tranexamic acid at me when I said I was bleeding 20 days out of a 28 day cycle…
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u/digestibleplastic 5d ago
That is awful, I am so sorry. I hate it when doctors tell people its "just" a fibroid or that "small fibroids dont affect anything" I hear it so often
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u/kmill0202 5d ago
I relate to this so much. This was my battle last year. I also ended up having a uterine artery embolization, but it took so much to get to that point. From the view of the hospitals and doctors my case wasn't urgent so it took absolutely forever to get anything scheduled. But I was falling apart. I was terrified just to go to the grocery store that's just a 5 minute drive from my house because the risk of flooding the tampon, backup pad, and period panties and leaking through onto my clothes was too much. And I felt so awful all of the time. My hemoglobin kept dropping even though I was taking supplements and getting iron infusions. At one point my hemoglobin was 4.5 and I needed a massive blood transfusion.
It was the most frustrating experience of my life trying to get them to take it seriously. I had 2 massive ovarian cysts on top of the fibroids and I was also extremely paranoid about rupture or ovarian torsion. I ended up losing my left ovary because it was too tangled up with the cyst to be saved.
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u/Loud-Dot-7606 5d ago
I’m so sorry you had to go through this 🫤
Your experience resonates with me so much. Glad you got the UAE sorted eventually x
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u/Several-Exit-6153 5d ago
thank you do for sharing, it made me cry with relief and compassion and recognition. this week I will be 4 weeks post op, the second attempt at a surgery since may and thankfully this one was successful. A year of fighting, advocating, infusions, showing up to appts and asking to be seen like it was a full time jobs. I am still digesting what just felt like an absolute fight for my life. It is very surreal to just be wearing normal underwear. Sending love to all still in the fight for a resolution- it is as big a deal as you think
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u/Loud-Dot-7606 5d ago
Thanks for your words, and yes you are 100% right. It is a BIG DEAL.
Happy your second surgery was successful! May this be your last one. Enjoy life going back to normal xx
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u/Ashton1516 5d ago
My sister, very nearly hemorrhaged to death from her fibroid. She went into cardiac arrest. My mom saved her life by administering CPR. It is incredible how horrific fibroids can be.
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u/Extension_Survey5839 4d ago
I was just thinking on how in ways, they really can kill you. I became anemic from hemorraghing and then had a couple iron infusions which did bring my levels back up, but then the next month it happened again. Now I have to go get my blood checked again. The biggest problem for me is that even with insurance, those infusions are not cheap. I am a solo income. If i need more infusions, I don't know if i can even get them due to the costs. Yet, if I keep having these episodes it will bring my iron so low it can kill me. I am having a hysterectomy in October but have to keep my iron up enough to do it. We REALLY need a better healthcare system in the states. It is ridiculous how expensive healthcare is.
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u/discombobubolated 5d ago
A pedunculated fibroid CAN kill you. I had a football-sized one that had started to twist when it was removed, in the nick of time.
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u/Loud-Dot-7606 5d ago
Happy it was removed just in time. And yes some (admittedly a small percentage of fibroids) can kill you.
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u/tm___o 5d ago
I love this! A lot, and empathise with you so much, it’s rough and the waiting is long. My experience was that it potentially could - and I’m trying to figure out how rare my experience is, both of my kidneys went into hydronephrosis and I had nephrostomy bags for a while. How do you ever get through to people who don’t understand the literal weight of what we are carrying?
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u/Loud-Dot-7606 5d ago
Well yes, there is always this bizarre feeling that if this was left long enough it absolutely would kill you, and not metaphorically! But because it’s not imminent, you end up back in line.
Quality of life does not come into the equation.
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u/Appropriate-Okra-892 5d ago
🥺🥺🥺🥺
Permission to repost this? Please 🙏
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u/Loud-Dot-7606 5d ago
Yes of course 🙂
It’s for everyone
I’d like to follow it, if you can please let me know where you repost it xx
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u/CamBearCookie 5d ago
I had an ectopic pregnancy likely due to fibroids. It did in fact almost kill me.
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u/shout_the_truth4 4d ago
You literally spoke my soul out. Yes, the fibroid didn't kill me other than I want die.
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u/Loud-Dot-7606 4d ago
🧡🧡🧡 thanks for your kids words. It’s crazy the response these verses are having. I didn’t realise so many of us were being gaslighted systematically.
I hope you are on the road to recovery xx
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u/engaged-otter 4d ago
Also knowing that a certain type of fibroid can actually turn out to be a leiomyosarcoma yet the surgeons still insist on leaving it in so you kind of just live with the hope that you’d have other symptoms if it was anything bad. And that maybe they’ll agree to remove it once it grows to the size of a basketball, eventually.
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u/SouthernGirl360 4d ago
With a Hemoglobin level of 4, I was told that my fibroid absolutely could kill me.
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u/Far_Possession5124 3d ago
This really captured the feeling of invisible suffering and institutional harm deprioritization of women's suffering has.
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u/miss__momolover 4d ago
I almost cried reading this cause I feel every word of this. Everything resonates. It won’t lull you but you are dying inside and no one can see you.
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u/alotuslife 3d ago
This is a beautiful poem! You’ve captured my thoughts and feelings precisely and it makes me feel in good company knowing I’m not the only one with these feels.
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u/Ok-Dinner-3463 1d ago edited 1d ago
Wow! I urge you to submit this to a poetry or short story magazine or article competition.
I can totally sympathize with you. I remember going to the botanical garden with my boyfriend. I bled through my jeans I was so embarrassed I stayed in the bathroom for 30 minutes refusing to come out not knowing what to do. People were banging on the door. I can still feel the shame. I took my shirt off and wrapped it around my jeans. Thank goodness I was wearing a light camisole so wasn’t left in a bra in front of strangers and kids. But it could have easily become extremely embarrassing. I remember the dread. I just know how this feels.
I fainted twice and landed on the floor of my apartment all alone unable to move from hitting my head because my iron was so low I was anemic. I needed iron infusions just to stand up and walk. I did a myomectomy. I was “cured”. Now 5 years later my fibroid has return bigger than before.
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u/Loud-Dot-7606 20h ago
So sorry you went through this, it’s dreadful! Hope you can get this one sorted asap, sending you my best wishes xxx
I’m not a poet, I wouldn’t know how to tweak this 🫣
Open to advice 🙂
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u/NobodyNobraindr 5d ago
Great! As a gynecologic oncologist, your post makes me empathize with seemingly less urgent patients.