Living with a hidden (not so hidden) illness…Part 3

So here we are…a couple months after the last update and what a couple months it has been!

So after the hospital visit and finding out my surgery date, I have been busy getting the house and office pod ready for my recovery and getting mentally prepared for what was going to happen. Mum and I also planned a trip away for before the surgery as a distraction.

This trip was the perfect thing and exactly what I needed. We first as a family went to Holland to see the rest of the family for a couple days, and then mum and I went on to Paris and Disneyland Paris for a week. We came home only 2 days before my surgery so I didn’t give my brain the chance to panic too much. The day before my surgery was just spent buying the last few bits that I would need in the hospital and stuffing my face at Yo Sushi.

The morning of my surgery started early…the alarm going off at 5am so that we would arrive at the hospital for 7am. It was a bit of a blur once the hospital gown and compression stockings were on, a blur of blood draws, blood pressure and heart rate monitoring and questions. Before I knew it though it was time to walk to the operating room.

So now for the details…I panicked a lot before my operation and actually needed to go on oxygen for about 15-20 minutes before they could put me under anaesthesia. When I came back out I was in the recovery room and I remember falling asleep a lot. One of the times I was awake, I remember the doctor came to see me and all I remember was her telling me that there were more fibroids than they had thought and I asked them if they were able to save my womb, which they did!!! I fell asleep again and before I knew it, I was back on the ward waiting for my parents to come in.

When they came in they both told me how worried they’d been. The surgery was only meant to be about an hour…however, I had been in for 4 hours. I was also super pale as I had lost a lot of blood during the surgery and had had 1 transfusion. The pain was unreal and I felt super nauseous. I also had no appetite and only ate a little bit of a yogurt and a few sips of hot water.

The next day was horrible. It started with another blood draw at 5:30 in the morning, followed by multiple blood pressure and heart rate checks. This was followed by the nurses telling me that they want to get me up into the chair so that they could take the catheter out and change the bedding. For anyone that has had abdominal surgery (my incision was through the abdomen from my belly button down) you know that it is incredibly painful to move your stomach muscles. I was told to use my arms to push me up out of bed however, I still had my catheter in and on my right hand I had a canula with 3 ports which pulled when I moved my arm, so using my arms was hard. But somehow with the help of the nurses, I managed to get up and into the chair. I tried to eat a bit of toast with jam and some hot water but I instantly regretted that. I felt the waves of nausea build and I tried to hold it in as much as possible. However my body had a completely different idea. Before I knew it I was reaching for the sick bowl. The pain that followed was unbelievable, my pain killer pump didn’t even make a dent.

Several hours later, my parents came in along with Althea (essentially my second mum), however I cannot remember much of what happened at all. I was still so out of it. All I remember is that I had another 2 transfusions but my levels were still very low. They were still very worried about my heart rate and blood pressure.

The next few days were a bit of a blur of more blood tests and blood pressure readings. But before I knew it, I had been taken off my pain pump and put on oral pain killers. I was able to walk a little more and able to walk to the toilet on my own. But after 3 nights I was ready to go home. The plastic bedding and no air movement just meant that I was boiling hot all the time and severely uncomfortable. So Monday morning I was convinced I was going home. I felt well enough to go home. However, my haemoglobin levels were still very low and they wanted to bring it back up to what it was pre op before I could go home. So one final blood draw was done and several hours later I was ready to go home!

Now my recovery is far from over. Walking goes at a snails pace and stairs still have to be taken slowly. But I’m getting there, pain is almost nonexistent now and every day I’m able to do more and more.

So when they opened me up, there were more fibroids than they thought. They reckon there were close to 100 fibroids in total with 5 large masses (15cm each). They also estimated that my fibroids had taken about 45% of my total blood supply and I lost around a litre of blood during the surgery. The best news though was that they were able to save my womb! I can still have kids!!

But for now…there’s still a long road to recovery but I am on the way 🙂 So far…this is the end of this chapter!

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Living with a hidden (not so hidden) illness…Part 2

So here I am almost a year after writing part 1. I thought it was about high time that I updated everyone with my situation as a lot has happened over the last year!

So back in the beginning of the year, I had just had enough of waiting and so I made another appointment with my GP to chase what was happening. I finally found a GP who took my case seriously and chased it up for me straight away.

Fast forward a couple months and here I was waiting at the hospital for my first appointment in almost 2 years! I knew that I wasn’t going to be seeing the same specialist as last time which made me a bit nervous. However, the second I met my new doctor, that anxiety went away. I explained my case to him and he was upset to hear that my case had ‘slipped through the cracks’ for so long.

Well this is where it all changed for me. Normally these appointments only last about 10 minutes and I tend to come out of them still as confused about what is happening than when I went in. Well this time, the specialist took a long time to really understand my situation and to update the notes on the system to include as much detail as possible. He took the time to really explain to me what was happening inside my body and what my options were. Well, lack there of. He called in the head of department and between the two of them, they fully discussed my situation with me and put me at ease.

After a quick feel of my abdomen, they noted very quickly that unfortunately my fibroids and my uterus had hardened meaning my only option was for surgery. And not just a small surgery which we had all hoped for…but quite a serious one. My fibroids had hardened at 15x15cm. This meant that my uterus had grown to the size of 7 month pregnancy. All of these factors meant that the surgery incision would have to be a midline incision from above my belly button…all the way down. They tried to put me at ease saying that I should get an anchor tattoo afterwards to hide the scar and something that is fitting with me.

After about 5 minutes of laughing and coming up with ideas…they sat me down and talked me through the procedure and the recovery time. This was the bit I was most afraid of. When the doctor starts the sentence with ‘There is one more thing and some women think that this is outrageous…’ my mind instantly fills in the blanks. I knew a hysterectomy could be on the cards for me. I had been previously told that the risk was extremely high considering my situation. However my chance was actually at less than 1%!!!! AND the chance of having kids afterwards would be high! So not only would I be getting my life back, but my chance of having kids wasn’t completely ripped away from me!

45 minutes later I finally left the hospital knowing exactly what the plan of action was. And here we are…less than a month away from my operation. Yes my anxiety plays up from time to time thinking of all the ‘what ifs’ but I am just going to take it one day at a time.

First things first…I have a lovely trip away with my mum for a well deserved holiday (for mum) and a great distraction for me! See you on the other side!!

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…

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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!