fibroids

Living with a hidden (not so hidden) illness…Part 6

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December 2022…what a year this has been.

January started off with us still being hopeful and even buying a few baby clothes in the sale…we had started trying as per the advice from the sonographer. It was also the month that I turned 30! I didn’t have a birthday party or any celebrations apart from a meal with Steve and my parents, but I was surprised with a trip to Dubai for February.

February meant I was off to Dubai, and I was beyond excited! It was cold in the UK, and I was desperate for some sun and heat. The trip was absolutely amazing and I’m sure I’ll write a blog post in the coming weeks about Dubai and my experiences there.

March is when things started to crash around me. It was time to go back to London to speak to the gynaecology department with an update on the MRI that I’d had back in November 2021. I wish I could say the news was good…In short, we were told to immediately stop trying and that I’d be booked in for an operation as soon as possible. It would be another major operation and it carried more risks than the first time. But it was the only option aside from a hysterectomy. So, after a LOT of back and forth…we decided to go through with the operation. The rest of that day was spent walking around London feeling completely numb with shock. Crying in the British Museum, in P.F Chang’s, in the Lego store, etc. I also had a Vitamin D check done and it turns out, I am way too low on Vitamin D… not uncommon here in the UK…

April was a blur apart from the trip to the Netherlands for the tulips (which did not disappoint!) and to see family.

May was a trip to Vienna and Budapest with friends which was exactly what I needed! The perfect distraction from reality! I cannot recommend these places enough if you are looking for somewhere to travel to in Europe!

June was the month that I got the call with an operation date in the middle of Waitrose. 6th of July…just a couple weeks away…Mum whisked me away to Budapest for a couple days to take my mind off it all and to soak up more sun before I’d be on bed rest. The rest of the month just flew by and before I knew it, July was here.

July couldn’t have started any better for me though…Steve proposed!!!! I am now officially a fiancée! 1st of July will forever now be a special day for me. Those last few days before the operation flew by in excitement with wedding planning!

That excitement quickly moved to dread and fear on the night of the 5th. Tears wouldn’t stop flowing and I was ready to call the hospital and cancel it all. After a very restless and sleepless night…off Steve, dad and I went to London. They dropped me off and weren’t allowed to come up with me. I was escorted up to the pre op room where I had bloods drawn, many questions asked and forms to fill in. The one I hated the most was the one where I had to sign that I understood that I had a higher risk of death during this operation. I was all alone…crying my eyes out…hyperventilating. The nurses, doctors and anaesthesiologists tried their hardest to comfort me. Steve, mum and dad were texting me encouragement too, but I have never felt so alone and so scared. Here I was…having just turned 30…just gotten engaged with so much to live for and not knowing if I would come out the other end. Time stood still whilst I was in that room…I saw others come and go for their operations and mine never seemed to get closer. Eventually it was time.

The past few times I’ve been in hospital for operations, I’ve been taken to the room just before the operating theatre where I’ve been put under. Not this time…this time I was walked into the operating theatre. I was sat down on the operating table, and it was time for my epidural. It did not go smoothly…she was struggling to get into my lower back and suddenly nausea hit! I almost passed out and suddenly got so hot! The whole team stopped and cooled me down and calmed me down. They were honestly so amazing, and it calmed me down. The surgeons didn’t look nervous…so surely, I shouldn’t feel nervous. The second try of the epidural, she went a little higher and got it in one. What a weird feeling!! Being asked to move your limbs but not being able to at all! Before I knew it though, I was out like a light.

When I woke up, I was surprisingly ok…no pain…no nausea…had they actually operated?? Until I tried to move myself in the bed…the searing pain from my abdomen told me they had. The surgeon came to talk to me and reassured me that it went seamlessly. I lost a lot of blood, but they were able to get almost all the fibroids. I still had a womb, but I would probably need 3 or so smaller operations to remove the last few that were on the inside lining. The news had me crying for joy…I was alive…I still had a womb! The operation took a long time…close to 5 hours and I had 1.2kg of fibroids removed.

I’ll skip over my experience in the hospital as it wasn’t pleasant…recovering from a midline incision (belly button down) is not easy. But I learnt that I have really bad reactions to opioids and to anti-nausea medication. I managed to go home on Sunday the 10th where the real recovery started. I had been very sick and hadn’t eaten much over the last week. But eventually that started to fade, and my appetite started coming back. What I hadn’t mentioned yet was that as I came home, the UK had a heatwave. So here I was…recovering from a major operation…and it was close to 40 degrees Celsius almost every day. Our flat felt like an oven…and I couldn’t escape it. I would try and sit in our home office as long as I could, as that’s where we have an aircon unit, but sleeping was a challenge.

Fast forward to September and I finally have my follow up with the gynaecologist department and my surgeon…the news couldn’t have been better…yes, I still had fibroids, but they were extremely small, and I wouldn’t need any more operations…they would do an MRI to confirm this, but they were very optimistic. We were also given the green light to start trying from end of October and no time limit.

We know that I will need a hysterectomy at some point and the fibroids will be back…but for now…we are super optimistic…Recovery is slow, and I am still only 5 months into the 6-month recovery till I am mostly ‘back to normal’ but the difference in my life quality is insane.

The journey isn’t finished yet, but I am hoping that the next part might have more uplifting news…for now…if you have any pain or heavy periods…please go get checked for fibroids…the earlier you catch them…the easier they are to treat! All it takes is a quick ultrasound and its completely painless! I wish I had listened to Steve earlier and gotten checked much sooner.

But right now, I am mostly fibroid free and free to live my life again and to hopefully try and become a mum!

Fingers crossed 2023 is the year we’re able to get pregnant and have as safe a pregnancy as we can!

Living with a hidden (not so hidden) illness…Part 5

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So it has been a couple years since my last blog post and I wish I could say that I was done with this story…Unfortunately that is not the case.

Rewind to late 2020 and I started noticing that it was becoming uncomfortable to lie on my stomach and that something didn’t feel right. After some badgering by my other half, I begrudgingly called the doctor to make an appointment. Fast forward to the start of 2021 and Covid is still in full swing meaning that doctors appointments are just phone consultations at first. It didn’t take long for the doctor to realise that I need to go back for another ultrasound.

After my surgery they had given me around 5 years before the fibroids reappeared but here I was…2 1/2 years after my operation and knowing something was wrong. It took a little time for my ultrasound to happen and the nerves were definitely high. At this point my womb had started growing again and the familiar signs were back, however I tried to stay positive and had thought that maybe it was just adhesions after the operation. However, no matter how much you try to stay positive…sometimes your gut feeling is just too strong.

Summer of 2021 and it was time for my ultrasound…with Covid still being around, no one could go in with me, so I had to stay strong. It was apparent very quickly though that it was worst case scenario…the fibroids were back and there were already 2 large fibroids. The lady doing the ultrasound was super sweet and reassuring because as you can imagine…I didn’t take the news well…I was fighting tears and feeling numb at the same time. Not only were the fibroids back and large…but they also told me that I probably had about a year or 2 to have a baby in with minimal risk. Those that know me, know that I would love to become a mum one day and have dreamt about it for a long time.

It has been several months now since the scan and in all honesty, I am still numb…I am still coming to terms with the news. What made it harder for me was that I had just started my relationship with my other half a couple weeks before the first lockdown in the UK and just over a year later we get the news of the fibroids. I had gotten myself so worked up on the drive over to him and was so scared that that was going to be it for us. But luckily he took it as well as could be expected.

Now here we are, at the end of 2021…I have just had an MRI a couple days ago and we are staying positive for the year 2022 that we’ll be able to either have a baby safely or have some form of treatment that gives us some extra time. I am still numb and still beat myself up occasionally but there are more positive thoughts and hope for the future.

So yes, my fibroids are back and that sucks, but there is hope…and that’s what we are holding on to. Here’s to a great 2022!

Living with a hidden (not so hidden) illness…Part 4

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   So here I am…3 months after my surgery. I wish I could say that it was all plain sailing and that I’m doing great. Unfortunately, that hasn’t been the reality at all.

Recovery at Home:

   After I got home, I genuinely thought that recovery would be a whole lot faster. And it did…to an extent…I no longer heard women vomiting at all hours of the day…I was no longer sleeping on a plastic bed…I had my own bathroom again.

   But you know what? Getting on and off the sofa is really hard if you don’t have someone to help you! Using the stairs was an absolute pain and climbing in and out of the shower (we have a shower head over a bath tub…) was again, only possible if I had some help. I was literally living the invalid life. I couldn’t do anything without help.

   My poor parents gave up their bed for me as I couldn’t climb into mine (I have a mid-sleeper (similar to this…https://amzn.to/2Hagjco). So whilst I couldn’t use my stomach muscles…that bed was impossible to get in to! But it was a goal I could set myself…I gave myself two weeks, optimistic I know…but I managed it!

Stitches:

   The part that I dreaded the most was getting my stitches removed. Well, stitch. I had one running stitch with a bead on either end. I had had multiple nightmares about waking up and having pulled my stitch out in my sleep…but luckily that never happened. Instead, 10 days later I found myself at the hospital (unfortunately not the one where I had had my surgery and appointments) waiting for my name to be called.

   My doctors surgery was extremely busy, so the options I had was to wait a further 3 days and have them removed at my doctors, or go to the local walk in centre and have them removed there. So off dad and I went to the local hospital. My nerves were all over the place…Was it going to hurt? Was the entire wound going to open again? Would it be infected?

   After an almost 2 hour wait, my name was finally called. To say that the nurse was confident…that would be really pushing it! She looked so intimidated, which as someone with anxiety…it really didn’t help! Luckily the actual removal of the stitch and beads, I didn’t feel at all.

   However. She proceeded to look at the wound and didn’t look happy. Of course, where the beads had been, the wound hadn’t fully closed. She was also convinced that it was infected and proceeded to tell me that she was going to put a plaster over the entire area and it would have to stay on for a week.

   Alarm bells went off in my head on the way home…growing up, I always learnt that an open wound needed air to close. Not be completely enclosed. But, her being in the medical profession, dad and I trusted her opinion. So guess what…7 days later when it was time to remove the plaster…the plaster had turned to jelly and it was completely infected.

   So off I went to the doctors office where it was confirmed that it had become infected and I needed to go on antibiotics for 10 days.

 

Becoming ‘Normal’ Again:

   A couple weeks after the surgery, I was finally able to get in and out of the shower on my own, I was able to climb into my bed and I was finally able to move around, without moving at a snails pace.

   Reintegrating into society was different though. If you have read my previous blog posts, then you know that I suffer from anxiety. I had gotten so into my head over the previous weeks…scared that someone would hit my stomach and that would open the stitches again. Luckily that never happened…but I had to be careful.

   Even though I was physically starting to look ‘normal’. I still had to be careful. I learnt that the hard way when I decided to make my chunky veggie chilli (chunky-veggie-chilli/). Chopping the vegetables hurt. I ended up in bed for the following 2 days in pain. The frustration was unreal!

Life After:

   So here I am…writing this 3 months after my life changing surgery. Still a far way off being in full health. But a lot closer to that than I have ever been! I’m learning now what its like to have a healthy human body. The swelling is still going down and I’m feeling better in my skin.

   The one thing that no one warned me about was how intense the changes would be and there was no mental preparation. I also didn’t have any followup appointments for how I’m coping mentally. So the last couple months have been hard. I’ve been dark, but I’m working through a day at a time.

   Now I’m just looking forward to all the things that I couldn’t do before!

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

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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

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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…

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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!