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!