What is it like living with fibroids?

I’m scared shitless about the operation I am about to have today the 8th of June. All of the other surgical procedures have been laparoscopic so manageable, but this is going to be a cut through my belly to get the 20 fibroids I have out. I keep trying to think of what I can look forward to when I’m healed. A life free of pain, shame and a lust for life that I miss. As I keep looking on the bright side, I’m frustrated as I wish someone had told me what having these bastard tumours would be like. Everything is so fucking clinical but doesn’t tell you about the day to day hell. So, I shall use this moment to bitch about it all so that other women won’t feel so alone in their experiences.

I’ll start off with the shame. I feel that my body has somehow failed me, that this is my fault that I am unwell and at the back of my mind scream the words often uttered- “it’s just your period, many other women have them so why are you making such a big fuss!”. I have had to constantly fight to get my pain looked at, to demand tests, and treatment and for it to be taken seriously. At first, I thought there was something wrong with me and that I was unable to handle the pain, the excess bleeding and the crazy hormonal swings that are associated with menstruation. When initially I was diagnosed with fibroids, I felt some vindication as it wasn’t all in my mind, that what I was experiencing wasn’t normal. That soon got replaced by anger when I found out that it was such a common occurrence that 1in3 women are affected by them but I had to fight with doctors for my symptoms to be taken seriously, and it only happened then off the back of a lie. But I had the operation, and within months I had my lust for life again. To celebrate I wore white for a month because I wasn’t plagued by the fear of ruining my clothes. This time around, 7 years after the first removal of these unwanted tumours, I’m back to living in fear and shame. This time I have more fibroids than before and the consequences are more than just being afraid of leaking. I’m ashamed that I have no control of my body and that I can’t be my real self.

I am in constant discomfort physically. I have pressure on my bladder regardless of how much liquid I have. I am also in near-constant period pain, have throbbing in my vagina and my lower back aches to the point that at times moving is hard. I’m constantly bloated and have gained so much weight I can’t fit into my clothes. At first, it was manageable but as the months pass these have gotten worse. I was initially due to have my operation to remove them on the 28th Jan, but we’re now on the 6th month of the year, so what I could handle before has decreased. That’s a lie, my condition has worsened, so it’s impossible for me to use the same coping strategies. See how conditioned we are, or I am to see a medical condition and attribute coping based on what I can control and put the blame/ fault on me? Please don’t do that- remember the phrase “you can’t pour out of an empty cup”!

At the start of the year, I had heavy periods for perhaps 8 days. Those days were terrible, but I had 3 weeks in which I was normal and could function. Then on the 28th Jan they poked the bear as it were. After 3 hours under, the surgeons concluded that my fibroids were too cumbersome and the procedure more complicated for the non-invasive surgery we’d hoped would work. However, their examination left my tumours angry- I didn’t stop bleeding for another three weeks. By bleeding, I meant having to change tampons AND nighttime pads every hour. That was my February. By March I started getting breaks in between my periods, one could almost say near normal. I would have a heavy flow for 3-5 days where I wouldn’t be able to leave my home, followed by decreasing flow. Over the past month, I have become a prisoner because the heavy bleeding is near-constant for 8-10 days and then I’d be lucky to have a week off. Last week there were only 5 days between bleeding and I was leaking through everything within 20 minutes. Not only was the excess bleeding a cause for concern, but the discomfort had also increased so significantly that for the first time in my life I was throwing up due to the agony. The amount of blood loss and its effects made me call 999. I’ve never called an ambulance for myself before because I believed I could handle every situation thrown at me. I called the emergency service because I didn’t have the ability to take myself to the hospital. With my surgery so close, they didn’t want me waiting in A&E being exposed so they sent an advanced paramedic over. I wish I’d known because my home was shamefully messy and I was embarrassed to have a stranger there.

You never lie to the emergency services ever! They are there to solve the emergency and not judge. I have always believed this, and bar some issues with police and politicians, I will try to live by this. So, the NHS sent over an advanced paramedic with all of the equipment needed to test me that I would have had in A&E without the wait. I had to explain that I had fainted whilst sitting down, that I was now bleeding so excessively that I was too spaced out and that for the first time I was scared by my blood loss. The paramedic ran a lot of tests but I had to come clean as I knew I had been overdosing on my iron tablets, the main solution she wanted to suggest. To counteract the incessant blood loss, I upped my intake of ferrous sulphate since that helped increase the flow of oxygen throughout my body. I was pacing it out throughout the day, but like everything, there is only so much your body will absorb at a time. The paramedic’s first idea was to get me an iron infusion, but I was already at the max level. If your body is unable to absorb more, it is a huge waste and so iron transfusion at that point was ruled out. The problem really was the amount of loss I was having. In the time the paramedic had been there I’d already had to have multiple changes, and that really was the issue. How to stop the blood loss before anything else could be administered. The paramedic called various services, doctors & hospitals with the deciding factor being that I needed to stop bleeding. There was no point in a blood transfusion if I was losing so much from the fibroids in a waterfall cascade added with the clumps of fist-sized clots. I had to stop my period caused by the fibroids at all costs because there were no other options available in the timeframe. For me, it meant I had yet more drugs to take.

For the past week, I’d wake up, take drugs, wait until the pain passed, take other drugs, wait until I stopped feeling sick or had the runs, have water, take more drugs and was finally ok to speak to people. This was my favourite part of the day because I was able to pretend life was normal. For a few hours, I was able to function and put all my energy into the needed task. I gobbled up those moments because I felt human. I devoured those hours with clients as it made me feel like myself, concentrating all I had on their business problems was a joy. I knew that my admin would slip bringing on the shame from my natural urge to be better, but at a loss due to my medical condition.

The condition I’m most ashamed of is that that affects my brain. As much as I can let you know that anaemia will cause brain fog, fuzziness, fogginess, spacedness etc doesn’t do it justice. My arrogance will still shout that even in my current state, I am cool as fuck. I am that corporate being who believes in our values. I can’t be positive because there are lots of obstacles in the now. In the now, I am in pain. In the now, I am dazed. In the now I am frustrated, angry, and annoyed, I want to scream blue murder whilst confused as to what to do with everything I am feeling because it’s too much and this is uncomfortable for me. This too will pass

Everything passes. To be honest, I’m not sure how much of my emotions have been hormonal, but it will pass.

In the hospital, they have to take my blood pressure and blood again in case I need a transfusion- the test needs to be taken at a maximum of 72 hours prior to the operation. I normally have low blood pressure so this is high for me, but again, I’m trying to downplay the fear of the operation. The anaesthetists have insisted on telling me the details and all of the side effects that may occur- it doesn’t matter that I ask them not to. I have to reiterate that I want all of the drugs. I want everything so I don’t have to feel any part of the procedure. I’m going to have a spinal injection that will be given whilst I’m conscious and sitting. After I will be put under general anaesthetic. I didn’t need to know that in a few cases I may come out with broken teeth, or if it all goes wrong I’ll end up with a hysterectomy. I’m trying to focus on the positive as the nurse takes a third shot at finding my vein. This is the problem with being black- a lot of nurses don’t seem to be able to find the veins in my arm. It’s not giving me confidence that they will do the spinal anaesthetic without problems. I want a fag, a coffee, a cocktail on the beach…anything to be fair. They’ve given up on finding my vein and have decided to get another nurse to take my blood. Eventually, they send in a doctor who does it in the first take.

I’ve still a couple of hours to go until they operate, I wish I’d actually brought my work with me, it’s a great distraction. My period pain is still there, constant as always but now I know that soon it will be over. The bastard tumours will be removed and I can get my life back. I can get my health back! I will be free and once I’ve recovered I shall go back to living in joy.

• http://www.afrobella.com/2020/03/02/fibroids/
• https://bocafertility.com/Uterine_Fibroids
• https://denverfibroids.com/posts/fibroid-symptoms/sudden-weight-gain-could-be-a-sign-of-fibroids/
• https://www.fibroidspecialists.org/fibroids-weight-gain
• https://atlii.com/fibroids-symptoms/fibroids-leg-pain/
• https://www.nhs.uk/conditions/fibroids/

#fibroids #uterinefibroids #heavyperiods