KATJA'S STORY

I was diagnosed with endometriosis in 2019 after several trips to a&e and being told I was having  'bad IBS flare-up's'. After my 5th visit, my mum said to me 'this is ridiculous; you need to go to the GP'. I had just moved south of the river and needed to register at a new doctor's surgery. I booked an appointment and saw my new GP. Finally I felt heard, and she sent me to get an internal scan. This scan changed everything. I remember sitting in the doctor's office and her telling me I had what looked like an endometriosis cyst/spots in my uterus, followed by the dreaded words of 'infertility' and 'struggling to get pregnant'. I burst into tears. I'd just got engaged; we'd spoken about having children so much. I left the doctor's and rang my mum - who was on a ski lift in France(!) - and, sobbed my eyes out, exclaiming 'I won’t be able to fall pregnant!'. She calmed me down and helped me see some sense. I was referred to a consultant who put me at ease. When I asked ‘Will it be harder to become pregnant?' She replied 'Yes, but you still can'. She booked me in for surgery in July 2019. After surgery, I had a follow-up with my consultant, and when the topic of pregnancies came up, she told us to 'try for 6months; and if we didn’t fall pregnant, start the process with our GP'. The one silver lining of being diagnosed with endometriosis is that you don't have the standard 2 year window of waiting in order to be referred, after just 6 months you go straight to the top of the list.

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2020. Covid. Well, that screwed up many things. Our wedding was postponed and our preliminary IVF testing at the hospital was put on hold. 

Fast forward to 2021, another rough year. My father was diagnosed with pancreatic cancer in March.. just as things were beginning to move forward as I started my testing. As the months moved on, my father's condition grew worse and we decided to move our wedding date again. To say I was stressed is an understatement; trying to stay strong for my dad, going through test after test, planning a wedding and struggling at work... I burst into tears every now and again. The summer holidays came, which led to the worst week of my life. My father rapidly went downhill after a round of chemo. We were told there was nothing more they could do; the cancer had spread, and palliative care was the next step. The very same day I was told that we got onto the list for the fertility clinic to start our NHS IVF process.

Dad was moved to a hospice on the Thursday, and we were all in and out visiting him alongside sorting things for the wedding on the Saturday. On the Friday, the whole family took turns sitting with my dad. I was the last one of the day. I didn’t want to leave him; it was 9pm and I was getting phone calls from everyone telling me to come home because we had our wedding the next day. I got home had some food and we started driving to the hotel. 5 minutes into the drive, my mum rang saying 'they've just called’. I have never turned my car round so fast. I raced to the hospice to be with my ‘Pappa’, where we all sat with him until the early hours of the morning.

It was my brother who said to me 'what are going to do about the wedding?' - at this point, it was the furthest thing from my mind. My mum stepped in and said 'It’s happening. Pappa wouldn’t want you to change anything'.

It was a hard day, to say the least. I was hoping I was pregnant to have a little bit of connection with my dad, but I wasn’t. Come to September 21’ going back to work after the most difficult summer of my life to a new boss to not only tell him that I was struggling with my father passing away but I was also going through fertility issues. NHS left like they were dragging their feet, so we started doing mild IVF privately; wow, it was that expensive and heart-crushing. We did 2 mild options which didn’t work, and had a consolation with the doctor in now the October 21’ and they suggested full blown IVF, which was a crazy amount of money but the day we got that quote we got approved for NHS-funded IVF. 

November 21’ we went in to see the consultant we were told based on my test results and my history of endometriosis, that we needed to go onto the ‘long protocol’ he went through the protocol with us and at the end of it said ‘we need to highjack your body so we can get the best results’ we left the hospital that day with the pill and some nose spray to then come back a couple of weeks later for bloods and work out dates for everything. This was the week before Christmas. On the 24th December we got a phone call to say to husband bloods had been labelled incorrectly and couldn’t be used and that he needed to come back in to get them done. We were already at my mums for Christmas and couldn’t make it back on time so he left early on the 28th when they opened up again to go and get the bloods done. We were back on the 31st December and got the big bag full of drugs that I would need to make up and  inject into myself everyday for the next 7-10days. At 6pm every evening myself and my husband made up the vile put it into the syringe then injected into my tummy. We had an appointment on the 7th January and they were asking covid questions and I had covid at the start of December which then became an issues with moving forward as they need to check with the anaesthetist, if I could still go under they sent us home and said they would ring and let us know if we could have the egg retrieval. When I say that was the LONGEST day ever and I anxiety deep cleaned my kitchen to an inch of its life. All was good I was 6weeks post covid and I could go under. We did 10days of injections then it was time for the egg collection and my husband deposited. They collected 5 eggs and over the next 2days we had to wait to see if they become embryos three made it and was booked in for embryo transfer. In all this time I was in isolation due to covid rules still being in place. I rested for the next week then went back to work with the hope that the embryo took and I was pregnant. Those two weeks were painful as is the back of my head and my friends that had gone through IVF it didn’t work first time round so on the 16th January at 6am I took the pregnancy test wow that was a long 3 minutes but that little screen showed PREGNANT I couldn’t believe it I ran into our shower room and showed my husband we both burst into tears. We then waited 8weeks for our first scan and I was petrified but we saw that little heart beat and I felt at ease that my body was finally doing something right. 

Throughout the process it was very lonely not much of support as I feel it is a very taboo subject that people feel like they have failed in the main thing our body’s are meant to do. I have been very open about it so people at work knew I was going through the process and I become the person to come and talk to about IVF which I loved because I would of loved that when I was going through it. I had a good school friend who went through it but she’s didn’t have a good experience so didn’t want to talk about she now has a little girl but that took 5years. Everyone on the fertility team were amazing but like anywhere in the NHS they are short staffed and over worked. 

The best advice I was given and I did and would give to anyone is take that time to rest from the start of your protocol I was forced too because I had to isolate so it made relax as much as my nerves would let me. With each scan it made me feel better and better and seeing my belly grow. Get to the 27th of September I woke up and had my ‘show’ a week before my due date so I rang the hospital to let them know and went on with my day. I was booked in for my pre birth wax. Looking back was having mild contractions while having my wax. I had a midwife appointment that afternoon they sent me home and it took the drive home for me to say turn around we are going back. After 12hrs of active labour all the drugs, epidural, epeastomy, kewi we welcome our baby boy Lars into the world. The first thing the midwife said to us was “he has talipes and a tongue tie” I was so out of it and in that moment I didn’t care we had our baby. I had some complications and lost a lot of blood so has to stay in the hospital when a nurse came round to do their day 2 checks she told us a list of things he has a tongue tie here’s a leaflet, he has talipes here’s a leaflet and he has a heart merer here’s a leaflet I will refer him to all the right departments. 30 minutes later a nurse came to take him up to see the cardiologist I was left him my room alone and my baby had been taken away from me I burst into tears. They came back 45 minutes later at this point I was thinking the worst but the cardiologist had cleared him all was good. Throughout our stay all the doctors, nurses and midwives had said oh his talipes with be fine with some massage and exercises which we took their word and waited on the referral 3weeks later we got the appointment for 3 weeks time I didn’t think anything of it because we were told exercise and massage and it will be fine. How wrong they all were! We went to the appointment thinking we were going to be given massage and exercises to do with Lars instead we were told he measured at a 5.5 out of 6 on the scale and he would need casting , an operation and wear boots and bars until he was 5. To say we left blindsited is an understatement my little Viking would be going through so much at just weeks old. I cried a lot over the next few days.  We were refered to St George’s hospital where they have a ponseti team. We were in there straight away the lead physiotherapist asked us I’m just wondering why did it take so long for your referral to come to us we normally see babies at 2weeks old, Lars was 7weeks at the point I didn’t know what to say I felt like I had let my little Viking down. Over the next 3weeks Lars was casted twice a week to change the position of his foot. The physiotherapist were so happy with his progress they booked his operation in. Throughout all of this I felt so alone there was no one I could just text and ask questions my mind was going to all sorts of places is he in pain, will he be able to walk these where just a few but I had to stay strong for him. He spent 2weeks in a cast with a change in-between because he grew out of the cast then we move onto the boots and bars these things that looked like medieval torture devices we had to strap onto his feet only having an hour off a day. I sobbed putting them on his as he was crying too as the days went on he became less intreated by them and when we put them back on although it still breaks my heart every night when I put them on but I don’t just call him my little Viking because of our Swedish heritage he’s a Viking in so many ways. We were invited to a boots and bars coffee morning in January and we walked in to knowing what to expect but to our delight we saw children all ages running and jumping around to say this was a relief to see is an understatement it was great to see. Me and husband walked out of there and said let’s host the next one because I don’t want families feel the way I did and do and that was incredibly alone none of my mum friends knew what I was and am going through. We hosted the coffee morning with great success and I didn’t stop there I wanted a community for all of us to ask each other advice and what they did in different situations  so I set up a WhatsApp group and it’s been a great help to everyone. 

 

Right now as a mum I feel like I’m slowly finding my feet the next hurdle is only around the corner but me and my Viking with jump it together. 

 

Comparing my motherhood journey with others mums isn’t comparable I see people posting pregnancy announcements and it still takes me back to the place of when we were trying and I wasn’t able to get pregnant that gut  rentch feeling that it would never happen for me. Now I am a mum it’s still not comparable, I speak to my friends that can just do bath time stories and bed but I cant for the next 5years I will be putting on his boots and bars which he hates and it breaks my heart everyday. 

 

I would say I have found peace with any of as with it’s all happened so fast I’m just taking it as it comes for now but I know I need to seek help and speak about all of this and be able to make peace with it all. For the future we have Lars brother or sister on ice if we need to go down the the IVF route again but in the mean time I’m soaking it all up with my little Viking.