Never one to do things by halves, this is my story of what should have been just starting a family. Not for one minute did we imagine that the birth of our son would leave him with life long scars and mild learning difficulties or that in trying for our 2nd child that I would suffer a miscarriage, develop new onset epilepsy during the pregnancy (which is quite rare), and endometriosis (from scar damage from the c-section) and end up having a total laparoscopic hysterectomy with bilateral salpingo-oophorectomy (which basically means that there isn’t anything left down there), to remove the endometriosis.
Our rainbow baby, second child and our one of each to complete our family (along with the cat and the dog!) was conceived after a miscarriage 2 months before and 7 years after her brother was born.
I didn’t have much time nor the emotional band width after the miscarriage to research it, but I was desperate to find answers to my questions about epilepsy, endometriosis and total hysterectomies. Being told by my neurologist that I wouldn’t be able to carry my baby in my arms, only in the baby carrier in case I had another seizure was devastating. I turned to Google to try to find out is he right? Had anyone else been told the same thing, is that what they had to do?? When the then unknown, endometriosis pain started, what was it? Was anyone else experiencing the same? Upon diagnosis and suggested remedies, what had other people in the same position done? When I heard the sentence “I recommend that you have a total hysterectomy”, I went in search of real-life people who had gone through it, was there anyone out there that had a full hysterectomy who also had hormonal epilepsy?? Apart from the odd comment from a well-known group, all that I could find were medical reports, brochures and practical help guides for how to prepare for the operation, things that you can’t do with epilepsy etc. I wanted real life experiences and couldn’t find them. So here I am, about to share with you my personal journey in the hope that maybe, if you are looking to find someone who has been through a miscarriage, epilepsy diagnosis, endometriosis, hysterectomy or all 4, that my story may help you.
