Louise’s Fibroid Story

Hello everyone! Welcome! Louise was kind enough to document her story below and I am happy to share it will you all! Please read on!

 

I guess when I really reflect honestly my periods were extremely heavy for at least ten years. I have two children and both births were extremely difficult, lengthy and downright dreadful. I know child birth at the best of times, isn’t a bed of roses or a laugh a minute for ANY of us but mine both should have been caesarian births ( admitted after the event of course ) but never once advised at the time.
Anyway, you live and learn and had I had another child, it would NOT have been natural.

I bounced back very quickly from both births, breastfed both babies for much longer than usual and had no issues. However all of that changed when I hit my 35th birthday. I started to get very heavy periods, gushing/rushing flows that would make me feel uncomfortable and concerned when out in public, just incase I flooded everywhere. My cycle also became shorter. At the time I thought it was normal and told myself to harden up and to just accept what I had been dished out, putting it down to the “ difficult births and getting older “. I was in denial obviously but rather than getting it checked out, I carried on.

For anyone reading my story, I am a classic case of “what not to do “. I am not proud of continuing on unchecked, no pap smears or doctors visits for anything except the odd bout of tonsil infections or tending to my children’s health needs. I went on unchecked for the next ten years.

In 2009 my periods were getting heavier to the point that I was changing a tampon every ten minutes and was up at least 8 times a night changing tampons and maxi sized pads. It was exhausting, messy and to be perfectly honest like a slaughter house. I started to feel a little weak, breathless and lifeless but only for a few days after my period. I also noticed my lower tummy was feeling slightly hard with a strange bump. I told myself this would go away if I exercised and ate differently so this was exactly what I did do. I started bike riding daily up hills and around 16/20km per day. I cut down alcohol, junk foods and ate a very clean, nutritious diet. I also walked around 8km a day if I didn’t feel like riding. I started to feel very fit and felt physically amazing but the hard mass continued to grow, despite my actions.
My husband said to me at the very end of 2009, “ it feels as though someone has placed a ball into your lower tummy and sewn you back up “. Needless to say, I started Googling.

Any normal person would have seen a doctor by now but nope not me. I continued on exercising and eating clean and was very much in the depths of denial. I truly believed I had to keep exercising and the mass would disappear. I found the word “ fibroid “ on my new best friend “ GOOGLE” helpful sites and was convinced this was exactly what I had. I had days of being positive it was harmless fibroids and days of worrying about cancer. My Grandmother had died of ovarian cancer only 4 months after her diagnosis and this was certainly a huge concern for me.
I was very up to speed with symptoms, causes and became a walking fibroid/ovarian encyclopaedia, determined to cure myself. I was eating like a horse, craving iron enriched foods and putting castor oil hot packs on my tummy for an hour a day. I started to feel pregnant and the mass was growing.

Anyone whom has had fibroids would be able to tell you the familiar hard, tight, contracting,pulsating feelings they cause. Its such a strange sensation with a strong pregnancy likeness. I was googling as many pictures as I could to try and make sense of what other typical “ fibroid bellies ‘ looked like and comparing them to my own. I even lay flat on my back and took photos of my stomach …the images blew me away and concerned me further. I knew I had to do something but I was so scared and felt so stupid.

It was October 2013 when my husband ( not me ) made a doctors appointment. I had come to the end of the road with my issues, I had nowhere else to go and nowhere else to hide. My bleeding was out of control and I had heart palpitations, weakness and was so incredibly pale despite being in the sun each day.
The lovely lady doctor examined me, gave me a pap smear and almost fell over at the sight of my enlarged uterus. She ordered a blood test and a CT scan, marked as URGENT.
I had my CT scan that afternoon and she rang me at 5pm with the immortal words “ its not a fibroid but some sort of tumour and it could be a leiomysarcoma ( cancer ) but the good news is looking at the scan it hasn’t spread so I hoping its a benign tumour “. She told me to come in on the Monday to discuss the what next.
I drank a bottle of wine and a bottle of champagne and cried myself to sleep.

On Monday I went back to the doctor. My pap smear and blood results were all normal except I was chronically anaemic and needed an urgent blood transfusion. I stood up for the whole appointment as I was so anxious and didn’t want to be told anymore bad news. I was a nervous wreck and so frightened of what may lie ahead. I knew if it were a leiomysarcoma that my number was pretty much up as this cancer has a very poor prognosis.
I went to hospital that night, was transfused with a few bags of blood and told by a gynaecologist who saw me the next morning that it was likely it was “ a nasty one “. I was released from hospital, felt amazing with so much energy and no longer cold or pale and told to await my next step.
Two days later I was ordered to get a chest x ray ( more panic and tears ) and to await the specialists appointment. A leading Professor in Oncology/Gynaecology was consulted and he looked at my scans but must have come to the conclusion that I likely had a massive fibroid and not the suspected cancer. My scans of lungs were clear and I was booked in for a hysterectomy with ovary removal ( my choice ) as I wanted the whole lot out, I wanted closure to it all.

On the 4th of November I had my operation.They removed a 2.19kg or 4.82 lb fibroid ( vertical scar ) which was sent to pathology. Everything they took out presented as normal and healthy but the fibroid (due to its size) had to be biopsied. My tummy felt surreal and so incredibly flat, words simply cannot describe that feeling.
I recovered very well from my operation, had no complications or much pain afterwards and was allowed home after 3 nights. I still hadn’t received my pathology results though which caused huge anxiety and moments of despair and panic. Apparently here in Australia, they only inform you of your results if the outcome is bad news or complicated.
This is one area that the medical profession need to change, as letting frightened patients just dangle in the air is really unfair. The whole wait really affected my recovery as I couldn’t switch off incase the phone rang. I found out six weeks later at my follow up appointment, that my fibroid was in fact just a massive, pesky fibroid.

Due to the voluntary removal of my ovaries, I was put straight onto HRT Climara Patch. Although this helped with hot flashes, night sweats and mood changes my breasts blew up like Dolly Partons and I felt so terribly fluidy. I ripped the patch off ten months after my operation and went on bio creams ( both assortments failed and I had terrible night sweats but breasts did shrink ) ! To cut a long story short I am now on the lowest dose of Climara patch and this has worked perfectly. I have my hormones tested every four months and am now back on track.

Thank you for reading my little story. If there is a lesson to be learnt out of any of this it would be “ don’t let these things grow, don’t put up with all of this unnecessarily, don’t live in denial/get checked ( sometimes fibroids mimic leiomysarcoma, I have to be truthful ) be an example to your loved ones by practising self care -I was selfish, so please don’t do a me. Life is too short to live with these horrid things.”

Many thanks,

Louise Harries.

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