One of my client's has written a blog post all about endometriosis for her work. In it she shared her personal story relating to her journey with endometriosis so far. She has kindly agreed for me to share it here, in the hope that it may help others.
"For me, I didn’t even know I had endometriosis until I was in my forties. I had painful periods but nothing too bad that a few ibuprofen wouldn’t fix. As I got older, I started to suffer more and more symptoms and wasn’t really sure how they were all connected. I just found I was feeling really tired and depressed and didn’t want to socialise with my friends or be out of the house much.
I was regularly dismissed by the medical profession and I found that very hard to deal with as I’d been taught to trust doctors. I began not mentioning symptoms and being very quiet in any medical appointment. Eventually, I was so worn out and believed that something was seriously wrong that I bravely requested my GP refer me onto a gynaecologist for investigations. I had scans and a laparoscopy (key hole surgery) which diagnosed endometriosis and explained a lot of my symptoms. Whilst I was relieved to have a name for my condition, I found the diagnosis overwhelming too as I had to do a lot of research myself to find out more about the condition and how to treat it, and live with it.
In hindsight, I didn’t give myself enough time to come to terms with all the implications of my diagnosis and find out about options of treatment. As the doctor recommended more surgery, I went straight for that hoping it would help. That surgery was a hysterectomy and I had not appreciated how major that was; both physically and emotionally. Only in recent months have I been able to understand I actually needed time to grieve for all the effects the surgery had; my loss of fertility, my loss of physical fitness, and my loss of trust in the medical profession. If I’m honest, I am still very angry and that can come out as frustration or tears when in certain situations.
As I recovered from that surgery and researched more about endometriosis, I realised I hadn’t been treated as per medical guidelines and this made me even more distrustful of doctors . I had to give myself time to build up my self confidence and seek out someone I could trust to find more answers.
Thankfully I did find an endometriosis specialist2 I felt I could trust and after three further surgeries I’m finally out of daily pain and able to enjoy walking and keeping fit once again. Away from the physical impacts, I’m still coming to terms with the emotional and mental health impacts, and what I would call impacts on my way of life, but feel I am on the way to acceptance now.
What has helped?
For me, finding someone to talk to has benefitted my mental health and been instrumental in rebuilding my self-confidence. I have a counsellor I have sessions with regularly and have had various talking therapies in the past few years. My friends and family have helped, but I needed to talk to people who were also affected by endometriosis so I reached out to support groups and ensured my counsellor was someone that knew about the condition.
Finding the positives
I now feel much more compassionate to others with invisible illnesses and remind myself not to judge people by outward appearances. I also wanted to help others so am involved with a community who aim to provide information and evidence on correct endometriosis treatments and support to those who are on this journey too, or support someone who is."
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