I’m Charlotte Hope aka @HopeEpiMum & @SaucyCHP on twitter. I am in my mid 20s and married. I live with an uncontrollable progressive (degenerative) type of Epilepsy that means I am unable to work. I also have PCOS (Poly Cystic Ovary Syndrome) and an Anxiety Disorder.
In late 2013 my husband (then fiancé) and I convinced by my Neurologist to just live life, decided we were going to try for a baby. We were so excited and started to look for sites/info for women with Epilepsy who were also trying. To our surprise we found little to no information or support for couples who are trying to conceive whilst also dealing/living with Epilepsy. There is lots of info/help out there for ladies with Epilepsy who are already pregnant and there is also plenty of info/help for those with Epilepsy who have babies and small children but that seems to be it. We were shocked. In the past we had continuously been told that when we wanted children we should have Pre-Conception Counselling with an Epilepsy Nurse. With this in mind we thought there would be more support available to those who do decide to try to conceive, but we found nothing. We did not even consider we would have trouble trying to conceive. We thought the only obstacle we would have would be my Epilepsy.
After 3 months of trying I had an appointment with my neurologist for a review of my Epilepsy and the medication I am taking. I decided to mention to him that we were trying for a baby. I just want to say my consultant is amazing, he has supported me for many years and never let me feel like I was alone. I honestly could not wish for a better Epilepsy Consultant! Once I told Dr W we were trying to conceive and had been for 3 months he asked what he could do to help. Knowing we had already had Pre-Conception Counselling the year before (we like to be prepared) my consultant did not suggest this. Instead Dr W said he knew a really good fertility consultant who could help us and that he would write to them asking them to see us. Dr W then told me that he thought this referral was worthwhile as I had been on medication during puberty that has now been shown to cause/aggravate PCOS in women. I had heard of PCOS but did not really know anything about it, so I left thinking no more about this except that I was lucky to have an Epilepsy consultant who cared about other aspects of my life.
After another 3 months I had an appointment with the aforementioned fertility consultant, Dr S. By this point we had been trying to conceive for 6 months, but neither of us were worried as we had read somewhere that it takes an “average” couple on average a year to conceive. Within this first appointment with Dr S I learnt I had a lot of symptoms of PCOS which he told me at the time would affect our fertility but didn’t mean we couldn’t have children. Dr S referred me on for various tests as well as referring my husband on for testing too. Fast forward another 3 months and all the test results were back. To cut a long story short I was diagnosed with PCOS & we were told that although my husband has a high quantity of sperm, the majority of it is low mobility ie “lazy”. Our fertility consultant said that although he could not see why we shouldn’t be able to conceive naturally (which left me confused, er PCOS & low mobility sperm!), that we would be good candidates for and have a better chance with IVF. We sat there in shock. We had not expected this, we were only 8 months into trying to conceive, we were still relatively new to this. Surely there had been a mistake. Before we could process this news, I realised Dr S was still talking. He said I had a significant amount of weight to lose to get my BMI down before he could refer us onto the IVF clinic. At this point I was 19st 7lbs, my BMI was 37. I needed to be at the most 15st 7lbs which would make my BMI 29, the highest it could be to have IVF on the NHS. This seemed too much, how was I meant to deal with the fact that we had fertility problems so the best chance of having children would be through IVF and that before we even got to that I needed to lose 4st 7lbs?!
I have spent the last almost year trying to lose weight and trying to get my head around this all. I thought living with Epilepsy was hard. People said I was strong for the way I lived “despite my Epilepsy”. Now I had a new diagnosis of PCOS, that had been caused by Epilepsy medication I took between the ages of 11-19, a huge weight loss goal that seemed overwhelming and the fact that IVF would be our best chance at having children. Since this time last year I have got married, had financial trouble, watched people get pregnant by accident, been diagnosed with an Anxiety Disorder, had too many negative pregnancy tests to count, gained weight and lost all in all 2st 3lbs, not including weight I gained back and lost again! People think I’m young but both my husband and I agree, that I’m not that young when you factor in living with a degenerative type of epilepsy!
This is me. This is my fight. Everyday I have to watch what I eat so we can have the chance to have a child via IVF. Trying to conceive & seizures are never far from my mind. It’s hard and I feel like I’m only just getting used to living with it all. This is a constant battle. Uncontrolled Epilepsy is a battle. Trying to conceive with fertility issues is a battle. I feel like I’m fighting two big battles without enough support from family or friends. They offer cliches of “relax”, “it will happen”, “if it’s meant to be” etc etc. I wish they knew how hard everyday life is for me.
Blog/Tweet soon x
As always please do comment on here or tweet me @HopeEpiMum