Living with a hidden (not so hidden) illness…part 7

Living with fibroids is hard. Not matter the size, they affect everything. Some won’t know they even have them, but a lot will have the symptoms but just think ‘oh it’s just a heavy period’ ‘oh it’s just how it is for me’ etc. They are sneaky hidden tumours that can affect so much.

Yes we got great news last year in regards to how my operation and recovery went. But the new hurdle has started. Having fibroids and having had 2 open myomectomies, my womb is weaker and this means that it’ll be harder to get pregnant.

I left off in the last blog that we were trying. Well its been 9 months now with no success. I know that that doesn’t mean a lot yet, as it takes on average a year of trying before women get pregnant. What has been the hardest throughout this though is social media. The targeted ads, the posts of friends with success, the celebrities announcing their good news, and more targeted ads.

Its been tough…seeing others get what you want is really hard. Of course I’m elated for anyone who gets pregnant and want the best for them, but if I’m completely honest…I’m jealous. The targeted ads however, hit a raw nerve. The constant ads for maternity clothes or fertility stuff or baby items…no matter how many times I hide it or say I’m not interested…my feeds on facebook, instagram and tiktok are still filled with it. Meaning I can never forget about it…I can never put struggling with infertility behind me. I am constantly reminded of it.

The monthly cycle of being optimistic and then the crushing reality when the symptoms of a period appear…it takes it out of you. Months fly past and the disappointment and emotions don’t get any less, but my frustration grows. Not so much at the situation we’re in, but the fact that I’m getting annoyed every month. I am trying to relax as much as I can and to not think about it. But the regular calls with the GP and fertility clinic, the medication every day, the diet, the products I need to stay away from now (antihistamines!!!!!), my entire lifestyle has changed in order for us to have the best shot possible. So its hard to ignore the situation, and lonely.

We, women, don’t talk enough about infertility. It affects so many of us and yet we all feel alone. Is it because we ‘shouldn’t’ be talking about it? a taboo topic? or just that we feel let down by our bodies? I know for myself, I feel ashamed…our bodies and cycles are made to be able to get pregnant…and no matter what…we just keep getting negative test after negative test. Its a very lonely journey which is really hard to talk about.

I don’t have the answer…I wish I did…I’m learning to be more open about how I’m feeling to Steve (my fiancé) and to my friends. Some are unfortunately also in the same boat as me, and that has helped. One thing I have massively learnt throughout this all is that our feelings are valid. It is completely valid to feel jealousy of another when you want that so badly but cant for some reason. It is valid to feel sad when the period symptoms start at the end of the cycle. It is valid to cry when the period starts and you mourn another month of not being pregnant.

I don’t know what the future has in store for Steve and I. I don’t know if a baby is in our future. I don’t know how long it might take. All I know is that I have faith and Steve has faith that one day it will happen for us. Whether it is through natural means, IVF or through adoption. One day we will be parents and we will love that child unconditionally. But until then, doing little bits here and there to help relax and to try and focus on other things in our life. Luckily we have a wedding to plan for (which is a whole other stress and story!!!) which is helping to take our minds off things. For now the fibroids are under control and have shrunk for the first time ever. I will be monitored for the next few years to make sure that they don’t grow. We know that a hysterectomy is still on the horizon, but for now its further away than we initially thought.

Fertility/infertility is not easy. But you are not alone and your feelings are valid. We’ve got this!

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

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!