Living with a hidden (not so hidden) illness…

So some of you are aware that I have been fighting fibroids for the best part of 6ish years (that I am aware of). It is far from easy and I feel like it isn’t as well known an illness as it should be! So here is my story and how I am living with it!

So around 6 years ago I realized that my periods were getting more and more painful and lasting longer…Not ideal at all! Eventually, I said to my parents that I need to see a doctor. And so off we went. One of the members of my dad’s church at that point kindly agreed to see me and ran so many different tests to see what was wrong. A couple days later I came back to get the results. Suspected fibroids…so I needed to go a couple doors down and get a scan done. This is where it was confirmed that I had multiple fibroids in my womb…and they were large!

Unfortunately, I couldn’t continue my treatment with them, and so I went back to the NHS where I needed to be rescanned and all the tests had to be done again…by the time that all the results had come back, I knew they had grown. I started to look pregnant…So they decided to scan again…this was almost a year after the initial scans had been done and this time they were 30x30cm and there were 2 main tumors. This explained why I looked pregnant and couldn’t lose weight. Unfortunately,  it affected my everyday life, at this point, I was in my second year of university, about to start my last year. Just walking up the stairs was difficult and I would lose breath…let alone having 12 hour practicals where I had to clamber over rocks and try and hold my balance. The issue was, was that because the fibroids were so large, they pushed everything to a different place. This meant that my intestines were pushed up, which in turn meant that my lungs were squashed.

That time of my life was incredibly hard. My last year of my undergrad was easily one of the worst years of my life. My boyfriend (Jamie) had to basically move in with me to help me for days on end as I could barely get out of bed without collapsing and I just had no energy. I had other serious health scares in that last year too, but somehow I managed to finish and got my degree! However, that was not the end of the story for my fibroids. They kept growing and growing and the pain on my spine was becoming unbearable. They were so large that they were actually pushing my spine outwards…as you can imagine, everything hurt then…even lying down!

Eventually, I got in contact with a specialist in fibroid care and he took my case seriously and was shocked to see such a young person going through this. I was only 20 when it was finally diagnosed. He suggested that I go on hormone therapy as the tumors were too large to operate on unless I wanted a hysterectomy, which I really didn’t. So for 6 months, I was taking daily hormones to try and shrink it, and it did! At the end, one of my fibroids had almost completely vanished and the other was down to 10x15cm. A HUGE improvement! However, that doctor went away on a sabbatical, and here I am a year later and still haven’t heard anything new. So my fibroids have grown again and now I’m chasing the doctors to hear what my next step is. So here I am, still waiting…

IMG_8380IMG_0034IMG_0218IMG_4914

I know my situation is a weird one, as I am a caucasian girl in her early 20s and I have fibroids that are normally only seen in African women…It is almost unheard of here in western Europe to have fibroids this large and this fast growing. What I do know is that my fibroids are caused by a hormone imbalance, I make too much estrogen…So even though surgery is imminent for recovery, unless I stay on low-grade hormone tablets for long-term periods, they will come back and it will happen fast.

One thing that has bothered me the most through all this is that when you’re going to get ultrasounds done to see where the fibroids are and how large they are, they do put you in the same area as expecting mothers. Now most of the time that is not a big issue. However, in my case, I have been told that I might never be able to have kids. That was devastating news for me and then being in a room with expecting mothers is a bit of a kick in the stomach! Another thing that has bothered me a lot is people coming up to me asking me how far along am I…I really want to have kids of my own, but I also know that that might not happen for me, so it hurts…

But through all of this you have to keep a smile on your face, otherwise, the days will become dark and you lose hope! Know someone who is going through this? Give them a huge hug and just be there for them! It’s not easy!

Have any of you experienced the same thing? Know of any treatments? Want to know anything in particular? Write a comment or message me privately!! Would love to hear from you all!!

For now… the adventure continues!

 

Being Thankful

So the last week has been an interesting one for me…

After mum got sick on our camping trip, we came back home and I already started feeling a bit funny but thought nothing of it and pushed through. A couple days of doing my masters later, and it came to the time that mum had to leave for Taiwan for work for a couple days.

So dad and I made the most of it and went to the Renaissance Festival here in Minnesota. It is an interesting place to go to if you ever get the chance!! It was a true immersive experience with all different types of people…mermaids…knights…wizards…fairies…just about everything! Dad enjoyed his turkey leg for close to an hour…it was that big! But the longer the day went on, the worse I was feeling. That evening when we came home I suddenly felt really dizzy…and yep you guessed it…I managed to get whatever mum had…fever…lightheaded…nausea…the lot! Not great when your dad is about to leave too and you’d be alone.

The next day we had planned to go to church, but due to me not being well, we had to settle with watching it online. It was a blessing to watch and still be able to worship with dad before he left. When it came to the time for dad to leave, I had to fight back tears! I wouldn’t see my dad again for around 3 weeks (when I head back to the UK for a little bit) and even though he does my head in sometimes (a lot!) I still love him to bits! But God really does know how to make a situation better. Whilst in the lift going back up to the apartment after dad had left and I was on the verge of tears…a lovely couple with their dog joined me in the lift and they were super chatty and friendly and managed to cheer me up!

So fast forward 4 days and I am finally feeling a bit better but this week has just been focusing on my health and my masters. The end is in sight!!!! So last night I celebrated by relaxing and watching the Convoy of Hope concert. It featured so many christian artists that I have always wanted to see live! I enjoyed it so much and it really brought my spirits back up! They managed to raise over $500,000 in one evening for hurricane Harvey victims.

Watching that concert and hearing stories of people who had lost everything, made me feel awful. 2 weeks prior when we came back from Costa Rica I had just been the worst. My camera (and for those who know me…my camera is my life!) had completely died! After being caught in that rainstorm it had been apparently damaged so badly that the power board had been fried. In all honesty, I felt like my life had stopped. My camera was my all…And here I was hearing the stories of people who had even lost loved ones. It was safe to say that I vowed to myself to stop being a spoilt brat and to be thankful for something every day! I did get a new camera though! Thank goodness for amazon!!

Today I am thankful for my health…that is not always a given and there are still plenty of things wrong with me…but right now my health is improving and I can get on with my day to day things.

On to the next adventure!!!!

This slideshow requires JavaScript.