When I was 16 I was in my first proper relationship, sex was painful, and my periods were excruciating, but I just thought it was normal and continued on as normal, I had the implant fitted and bled for 18 months without a break until I finally pushed to have it removed. I then fell pregnant.
Being as young as I was I had been easily pressured into having a surgical termination at 13 weeks, which was not a choice I would have made without the pressure to do so. However, this was when my symptoms really started to elevate. Every month I was bed-bound for 2 weeks around my period. I had to drop out of college as I couldn’t keep up with the workload and fell behind every month.
I would be doubled over in agony unable to walk or stand straight, I was being sick and passing out in pain and I was bleeding so heavily that I would soak through maternity pads within 20/30 minutes.
After numerous visits to the GP I was finally referred to the gynae department. I had my first laparoscopy when I was 18.
The surgeon was the same surgeon who had previously performed my termination the previous year. After my surgery I was told that “everything looked normal” and the doctor told me that because she had done no damage during my termination that my pain must be psychological, I was told to seek a psychiatrist for help to grieve for my baby. The surgeon told me that my pain was not physical but mental, when I grieved, my pain will stop. I spent the next 4/5 years going back and forward to the GP with new symptoms, pushing for someone to just get to the bottom of my pain. I was repeatedly referred for scans and tests and blood tests, poked and prodded & sent from one place to another. I was ‘diagnosed’ with IBS, kidney stones, and water infections. And once, upon one of many visits to A&E, a doctor noticed I had a tattoo on my leg and I was even told my pain was a result of being allergic to the ink in my tattoos. But the most common ‘diagnosis’ was that it was psychological pain, resulting in me spending many years on and off an array of different antidepressants.
Finally, at 22, me & my partner at the time were trying for a baby, and had been trying for over a year, and my doctor referred me back to gynae, at this appointment I was seen by the same surgeon who had done my first laparoscopy, and she refused to reinvestigate so she referred me to Dr Tsepov who I was told ran the ‘pelvic pain clinic’.
I finally had my second laparoscopy in May 2016, and Dr Tsepov found excessive deep Infiltrating endometriosis on my Uterosacral Ligaments, both of my fallopian tubes were blocked significantly, & my left ovary was stuck behind my bowel. I was not once explained what the diagnosis of ‘endometriosis’ meant, but I was told that the likelihood of falling pregnant naturally was very low, and I was referred to a fertility clinic to start the process of IVF treatment, and also put me back on the waiting list for more surgery to have excision treatment, because he could not clear up enough of the Endo during the surgery he had just performed. I, fortunately, was very very lucky and shockingly fell pregnant naturally 6 months after being diagnosed, so I didn’t get to have the excision surgery. My pregnancy was difficult, & painful, but normal and I had a healthy baby without complications.
However, it was not long after giving birth that I was reminded about the hell that my periods caused me.
Given the fact I had not long given birth, my GP was reluctant to re-refer me back to gynae until I was at least 6-8 months post-partum.
By this point I could barely lift my baby out of her bed on a bad day, my pain was flaring up outside of my periods, I would lose blood clots the size of oranges, I was severely anaemic, I was passing out in pain again, and my tummy would swell and bloat so much that I had to continue to wear maternity jeans because I couldn’t comfortably wear anything around my tummy. I was finally re-referred back to Dr Tsepov, and in the meantime, I found a support group ran by the charity Endometriosis UK. This is where I first met Jodie Hughes, who is now the chair of trustees at Endometriosis South Coast.
Jodie has been absolutely fantastic, at not only being a very dear friend to me, but she has also been amazing with helping to support me through my journey, learning about what ‘endometriosis’ means. She has guided me with tips and advice on how to advocate for myself and to push for better care in treating this chronic illness. Jodie has also educated me & helped reassure me that I am not alone in what I go through and that I am definitely not alone with the long process & journey that is getting a diagnosis. I finally had my 3rd laparoscopy & excision surgery in May 2019. I do still suffer, and I have terrible flare-ups but I have found that knowledge is strength, and I am learning many different ways to help myself to cope with my pain & the many other symptoms that I face.
My journey is not over, but I do feel a little more at peace with the diagnosis, and I am confident that I will be able to manage significantly more going forward with the support and knowledge that is available to me, provided by the Endometriosis South Coast charity & support page.