Carly’s September ‘22 Fibroid Surgery

Back in 2018 I found a tennis ball sized lump in my abdomen. Before visiting my doctor I obviously googled what it could be and came to the conclusion it was probably a fibroid, something I had never heard of. The doctor referred me to the hospital for an ultrasound.

Fibroids are usually non-cancerous growths that develop in or around the womb (uterus).

The growths are made up of muscle and fibrous tissue, and vary in size. Many women have fibroids but won’t know they have them because they’re so small. Fibroids can vary in size and are more prevalent in black women.

So I have my ultrasound and a transvaginal ultrasound because let’s not mess about, I want to be thorough. Thinking this would be an “aha” moment and I would feel safe in the hands of these professionals, it was quite the opposite I felt more vulnerable and alone, as the environment seemed more focused on the education of the trainee nurses in my appointment.

Leaving deflated I waited for the follow up appointment with my GP but it never came and I never got clarification of what the lump was. Naively I assumed that since I was not contacted about the findings at my ultrasound, all must be ok and if anything was wrong someone would be in touch.

Time passed, I continued to live my everyday life asymptomatic, and thinking very little about the hard dense tennis ball mass in my abdomen. I began to put on weight especially around my abdomen regardless of my active lifestyle, thinking it could be a result of entering into my more fertile years and simply getting older. I reached out to my doctor embarrassed that I hadn’t followed up things on my own accord explaining the lump from three years ago, the ultrasound I never heard anything back from, all the while we’re a year on from covid.

Now I am more worried as I have numerous symptoms which include frequently urinating, finding it difficult to go to the toilet, extremely heavy periods, sudden cramps when not on my period and feeling full after eating the smallest amount. I ask to be sent to a different hospital for my latest ultrasound in the hope of avoiding a repeat scenario.

We are in March 2021 and this time I am more prepared for how the appointment will go. I still get a frosty reception and again agate this experience with a trainee nurse and have to carefully try to extract any information I can about my body from the nurses. I understand that I have to wait to see my doctor for their findings to be relayed to me but after such a long time I am anxious and desperate for answers.

My doctor follows up this ultrasound appointment and informs me I have three fibroids and will be referred to a gynaecologist; progress. I see the gynaecologist and again it’s not the most enlightening of appointments, more shocking in fact as his first suggestion is a hysterectomy, having not asked whether I want children or have any but so callously saying it would be an easier surgery. I ask questions and enquire about all the other options I have researched and feel uninspired, at a loss and slowly the doctor starts to sense my anxiety.

He suggests I take some time to think about what I want to do (what sort of surgery, hormone treatments etc) I decide to improve my lifestyle, be more active and improve my eating habits as I’ve researched that these changes can shrink the fibroids and improve your wellbeing.

All the while I change my lifestyle, I keep researching, join groups that have the same health issues, many of which are in America, feeling like I have no clue what I’m looking for but knowing it’s not in the hands of a gynaecologist who seemed to be looking for the easiest surgery with no regard for the wants in my life.

Obviously due to the pandemic, appointments are cancelled, rescheduled, far and few between and the back log of patients and surgery’s are overflowing as more pressing matters take priority and we navigate this predicament covid had left us in.

We are now a year on from my meeting with the unfortunately uninspiring gynaecologist. I have drastically changed my diet and even when I am my most active, I’m still unable see to control or gain stability of my fibroids. Lean and “fit” everywhere else on my body but my abdomen and uterus chronically inflamed, bloated and always looking pregnant. It’s physically and mentally taxing but now the norm to feel tired and drained regardless how much sleep I get.

We are now March 2022 and I’m suffering with what I think is a flare up. Despite thinking I could sleep it off, after a whole week in agony; not being able to stand up, shooting pain in the top of my thighs, nausea, cramps like I’ve never known and a blinding, searing sort of pain I was sent to a private doctor. This doctor immediately booked me in for an ultrasound the next day, as she couldn’t believe the inflammation in my abdomen, and how high up the swelling was. Cut to the sonographer in complete shock at how big my fibroids are, telling me one is the size of a grapefruit and that she can’t see how many there are because they are so big but that there are up to five large ones. So potentially five large grapefruits taking up space in my uterus and surviving off the oxygen and nutrients meant to fuel my body not these unwelcome tumours. She struggled to find my ovaries and tells me the fibroids have pushed them so far out to somewhere round about the side of my ribs. She informs me with at least 15 more years of hormones, these fibroids are only going to keep growing.

Leaving the sonographer and hearing all she had to say about what she saw on the screen; although shocking, it gave me piece of mind and validated all these years I’ve been suffering and that I haven’t been overreacting. The private doctor who had referred me to the next day ultrasound checked in and gave me the details of a surgeon who is a specialist in fibroid surgery and has a keen interest in womens reproductive health.

Nervous but excited to speak to this professor/surgeon at my consultation he listens and assures me that he does not suggest a hysterectomy but a myomectomy which is the removal of fibroids whilst preserving my ability to have children. He explains that as my fibroids are so big I would have to have prostap injections to shrink the fibroids as they are too big to operate on as they are and doing so would mean I would lose a dangerous amount of blood.

Having been through such a long ordeal, I have great anxiety about the waiting lists, being forgotten, sidelined by surgeries/treatments that are deemed high priority on the NHS and took matters into my own hands. I booked myself in to have my three prostap injections, (hormone therapy to shrink the fibroids) and set the date for my surgery. Paying for the surgeon, the treatment and hospital, the costs really do add up.

So with my surgery date rapidly approaching (the 22nd September, to be exact), I’m reaching out to you. I fear this could not happen but prefer to stay positive and hopeful. I had my last injection a month ago and they are not a permanent fix to keep the size of the fibroids down it’s only temporary.

I know I’ve waffled on but it’s really been a long drawn out process and as some one who doesn’t usually ask for help, I really do need you. So thank you for taking the time to read this, I can’t wait for my body to be my own again and any donation, or share is so greatly appreciated.

Love Carly