I started my period later than most, at 13 years old, most of my friends had already hit that milestone in life, and I was so excited to have finally reached it myself, not knowing what was to come. My periods were always pretty heavy and painful, and I would often have to take time off of school to manage my pain & bleeding during the time of the month. My cycle was also not very regular, but I wasn’t very educated on what was or was not normal. My mum took me to the doctors numerous times and each time I was told ‘its normal’ ‘all girls get cramps’ or ‘it will settle down, you’re only young’. By the time I was 15 my doctor put me on the pill to help regulate my cycle and to help minimize the bleeding and pain. This had a detrimental effect on my mental health, which was already very much an issue for me. So I eventually decided to stop taking the pill. The real issues started when I became sexually active, sex was so painful and was not enjoyable like everyone else was telling me it should be. I felt broken and I didn’t know what was wrong with me, but I was too embarrassed
to seek advice as I was only 15 when I first became active, so I just stopped having sex.
When I was 16 I was in my first proper relationship, sex was painful, 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 work load 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 have 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, water infections. And once, upon one of many visits toA&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 complication. 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 anemic, 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 mean time 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.