The NHS IVF postcode lottery: my story.

I don’t know where to start.

I have deleted my opening line 8 times before deciding I will just write.

I am infertile.

When you decide to start trying for a baby, you expect to be pregnant within a few months. You hear stories of women, or men, who cannot conceive and you think it won’t happen to me. Infertility isn’t spoken about. When you meet a woman with one, two, three children, she doesn’t tell you of the heartache it has taken to get there. You don’t think to ask – why would you?

My husband and I never really started trying. I had been on the Microgynon pill for the best part of 6 years and I reached a point where the side effects were no longer something I wanted to deal with. After a year or so, questions were raised as to why I hadn’t accidentally fallen pregnant. The obsession for me began.

It took a long time for me to get my GP to listen to me. Every month I was having the same breakdown in the bathroom after yet another negative test. Why isn’t it working? I would cry and cry and cry. I had packets of ovulation tests, thermometers, Wellwoman supplements, as well as every fertility app going installed on my phone. Nothing was working. I would google every which way to make it work. 10 positions to guarantee pregnancy! 25 foods to get pregnant fast! Things to avoid when TTC! I was Mumsnet‘s best friend. I had been diagnosed with Polycystic Ovarian Syndrome in 2015 and as a result of this my GP kept telling me this is why it was taking time. I’d had so many blood tests and nothing was coming back problematic for me or my husband. The frustration was unreal.

January 2016 I was 13 days late starting my period. This wasn’t unusual for me; one of the symptoms of PCOS is irregular periods. I got up and I took a test, as I did every month. 3 minutes later the test flashed. Positive. I felt all the blood drain from my face and my stomach dropped to God knows where. I did another test. Positive. I couldn’t believe it. I told my husband and I felt sick with nerves, excitement and sheer disbelief. I rang my best friend and she was at my house in a flash, taking me to the doctors to confirm it. “You’re not pregnant. It’s negative. I think you had a faulty batch.” Do you have any idea how awful that feeling is? My GP looked at me like I had lost my mind.

The next two years were just a repeat of the previous two. Negative tests left, right and centre. In 2018, we got married and I finally convinced my GP to refer us to the fertility clinic. A laparoscopy later, I found out I was infertile. Both of my Fallopian tubes were fully blocked for no apparent reason, however I was told I would never get pregnant naturally. In March 2019 I made the decision to have them removed.

The psychological impact infertility had on me was unreal. My husband sat me down one day and asked me if I was suicidal. I was angry at the world. Getting out of bed was a challenge. I would spend my days, my nights, sobbing. It impacted my marriage in an unbelievable way. My husband didn’t know what to do. I would come home from work and sit in my car for hours wondering why this had happened to me. Suddenly everyone was pregnant, I was surrounded by pregnancy announcements, baby arrivals, pregnant women everywhere I looked. Coping felt impossible.

In 2017, our CCG for Cambridgeshire and Peterborough made the decision to remove IVF from our NHS. After multiple appointments in the fertility clinic, we found that we needed ICSI. We were looking at £6000-£8000 approximately per round for private treatment.

Fertility clinics are funny places. Everyone is sat silently, eyes darted to the ground, heads looking around avoiding eye contact with every other person in the room. Silence fills the room. Everyone in that room feels part of your pain. You are all there for one reason. The people who can understand you are the same people you don’t even say hello to when you sit next to them. We were not the only people in that room who were impacted by these cuts, however it feels like the loneliest place in the world. We were told there was nothing more the clinic could do for us. We were to wait for the review in April 2019.

April 2019 came and the day before the review, the CCG announced they would be postponing their review meeting to July because of the EU elections. July came and it was postponed again due to new information. Today is August 6th. Today we find out our fate.

Cambridgeshire and Peterborough is one of approximately seven CCGs to offer no rounds of IVF at all on the NHS. 88% of CCG’s do not offer the recommended 3 rounds. Your entitlement depends on where you live. Up and down the country, your eligibility varies – some are offered 3 free rounds, some 2 and some 1. Some, like Cambridgeshire, offer 0.

Infertility is a disease. Around 1 in 7 couples have difficulty falling pregnant. Infertility is not something that only affects a few. Cambridgeshire and Peterborough claimed that the suspension of IVF services have had no impact on their mental health services, however I personally have spent the last 11 months on a waiting list, still awaiting an appointment to be seen. I was put on antidepressants when I hit my lowest. I am lucky to have the most supportive husband in the world, however was he not, I don’t know where I would be.

Infertility is not spoken about enough. So many people in this country, in this world, struggle with infertility yet it is still such a taboo. The postcode lottery is frankly unfair. Today, I am hoping the results are the reinstatement of IVF. I am, however, very aware that this may not be the case and a lottery win is very much needed. I am also aware that whatever the result, there are thousands of couples in the same position as us. Thousands of couples longing for a pregnancy that isn’t, or can’t, happen. I hope those couples know they can speak.

I will talk to anyone who will listen.

Tears are shed on a more than regular basis in my house. It’s funny, when you write things down you remember just how much you’ve gone through to get where you are. I am a different woman to her that existed 12 months ago. I won’t let my infertility define me, but it sure as hell consumes my life. It’s hard not to when your fate is controlled by people you have never met. I am hoping with everything I have that today goes my way. However if it doesn’t, we have a new bridge to cross and a new adventure to start. An adventure I want to share to make sure that other people who resonate with my story know they are not alone.

You are 1 in 7. You are not alone.

Love, Amber x

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UPDATE: The CCG decided to seize IVF from the NHS. IVF is not returning to Cambridgeshire and Peterborough. Thank you for all your support x