70-80% of women live with uterine fibroids, many without even knowing and some with complicated symptoms. I’m talking about Uterine Myomas also known as Fibroids. I’m one of many women who have reoccurring fibroids, I have already had two surgically removed and just recently learnt I have a third one nesting in my womb.
This is my journey.
It all started around 2011 when I was experiencing excessive bleeding that wouldn’t stop for months. A normal period is for me about 5 days so imagine bleeding months on end. This of course makes you tired and concerned. I went to my gynaecologist to see what might be wrong.
The doctor couldn’t reach far enough to see what it might be and said that the risk of it being something of concern was less than the risk of injuring me in the process. The reason he couldn’t reach was because a fibroid was covering the entrance to the uterus. In hindsight, I feel there was a failure in not sending me for a scan.
I moved to London shortly thereafter and the issue remained. But it also got worse. I had constant cramps that I had to stop and breathe through. I was new at my job so I soldiered on, something I feel women often do when experiencing anything concerning our reproductive system. The thing that worried me a lot was the white carpets. I would have to change pads every 1-2 hours or so, what if I didn’t have a moment to rush off?
One evening I was at home and my stomach pain was so bad I couldn’t bear it, and there was pressure as well. That night a very large blood clot came out. I covered my mouth so I wouldn’t let my scream of shock out and wake up my housemates. I was dizzy and weak.
Not knowing where to turn I called the woman who had done my smear test at St Mary’s and she asked me to come in the next morning, which was very kind of her. When she examined me she said that this wasn’t located in the cervix but probably higher up. I was then quickly ushered to ultrasound where I was given bottles of water to drink. You see for an external ultrasound you need a full bladder, for an internal not. I had both.
Uterine Fibroid Diagnosis
Before being called in I remember there was another woman there, and she was loudly complaining about needing to pee, I understood of course but really wished she would just be quiet as I was sitting there stressed and afraid of the outcome.
Once finally called in the nurse conducting this was completely silent until she suddenly started to talk about the scar on my knee of all things. I knew then. I remember uttering in Swedish “Well that’s not a good sign”.
I’m briskly told to get dressed and to go out to reception to wait, during this time I see 3 doctors going in and eventually coming out before I am waved in to see a 4th doctor sitting inside. As soon as she had said “We have seen something on your scan “ I felt like I was in a bubble, noises were muffled, and the shock and fear took hold.
Fibroids and GP Struggles
I know now that Fibroids are very rarely anything dangerous, more than anything the symptoms are what makes them a nuisance. But I didn’t know this then, and all I could think was Cancer. I tried to call a family member but they didn’t pick up. So, in tears, I walked home.
The decision was made to have it removed via surgery, and not much scares me more than going under general anaesthesia, what if I don’t wake up? So that fear alone on top of the fibroid was a tough time.
But as we can gather I survived and life continued as if nothing had happened. Scroll forward a few years later and I start bleeding a lot again. I go to my then new GP and I voice my concerns. He nonchalantly said that it was in fact too soon for it to be a new fibroid, but I insisted and explained to him the blood clots I was giving birth to. Looking horrified or grossed out he booked me for an ultrasound. Should we have to beg for help?
With a full bladder, I was sent to Golders Green, the only clinic that had an appointment available. I find this baffling. Surely a hospital near my postcode would be able to have an appointment? I guess not. This was an hour’s journey from my house and I still remember the panic when my bladder was too full and I was in pain, as I still needed to have a full bladder I bought 2x bottles of water and drank so fast I felt nauseous.
During this scan the nurse blatantly says “Could you have been pregnant? It looks like a lingering miscarriage?”. Something to note is that they are not supposed to say anything regarding their findings. That’s left for the GP to do.
What a thing to just blurb out?! I mean not that I was trying for children but that would have been a whole other heartbreak. I am sent home with this fresh in my mind only to be called back by my GP a few days later. I was just about to go to work when he said “We need to send you for a cancer screening”. My world stopped. They said the C word. And all I could do was go to work, plaster that obligatory smile on my face and pretend it was all ok.
For my appointment I was joined by my best friend and his wife, nestled between them I could tell they were doing their very best to lighten up this situation, and they did a great job at that.
The reason they wanted to screen me for cancer was that not only did I have a new fibroid, but it also had a “tail” they said. An area of the uterus wall looked uneven and this is sometimes a sign of cancer of the womb. So this time when removing the fibroid they also shaved the uterine lining a bit extra.
I looked around me this time around in the hospital and it was sad, all these women were ushered into a big room just waiting for the next step. One by one rolled into the theatre. One older lady was nervous and was talking my ear off. I indulged her. One woman was crying, I had a feeling hers was a tougher journey than mine.
Good news for me, It was not cancer, thank all the gods.
To prevent more of them from growing at this rate I was fitted with the Mirena Coil which kept them away but wreaked havoc on my hormones and body. I gained weight more and faster than I could control. I had no period for 5yrs, which was a nice feeling but it also made me realise how unnatural the coil is. Knowing it was about to expire anyway I decided to take it out. “On the count of three give me a big cough“ the nurse says before yanking the coil out. The pain came almost delayed and with vengeance.
I’m not sure how long I was free from the hormones keeping the fibroids away until I had a gut feeling something was off. It’s quite amazing how one just knows. After going private for a scan because I knew the resistance I would have with my GP not having enough symptoms etc., it was clear I had a new fibroid and some polyps in my cervical canal like a terrifying cherry on top.
This small Intramural fibroid is nestled in my uterine wall, if or when it grows it might make my stomach appear larger. Nothing will be nor needs to be done until symptoms are severe enough to take it out. How fun.
But I would take this new fibroid nesting in there over the big C every single day of my life. This is just one thing out of many women who walk around just “living” like it’s the most natural thing in the world. I have it easy. And after seeing my late sister-in-law lose her fight against cervical cancer I consider myself so very lucky. I hope that my story might help others to feel comfortable talking about it and ask for the help needed. Maybe even remove some fear attached to the word tumour.
Listen to your body and stand your ground, your GP might not be the most understanding but I have to say that the medical staff during surgeries were wonderful and went above and beyond to make me feel safe and well taken care of.
We are frekkin warrior goddesses!