I am 27 years old and wanted to share my story in the hope that it would help others who are going through a similar experience.
I was born in India and moved to Australia with my family when I was three. I have always had debilitating period pain. Mum always said that I needed to put up with it, as it had been the same for her. I could never use a tampon as it was too painful. When I was 15, I remember a GP suggesting I should go on the oral contraceptive pill, but Mum said I wasn’t sexually active, so I didn’t need contraception.
I never slept well and always felt tired. I started experiencing back and abdominal pain even when I didn’t have my period. I was always needing to go to the toilet, which led me to drop out of playing hockey, because I was too scared I’d have an accident. I stopped going out with my friends and I worried about everything. My GP diagnosed me with anxiety and suggested I see a psychologist, but I didn’t go because I didn’t want them to tell me that what I was feeling was all in my head.
Finally… a reason for my pain
When I was 18, I saw a different GP who referred me to a gynaecologist. She was the first person to tell me it wasn’t normal to experience such terrible period pain and that I might have endometriosis. I had my first surgery when I was 19 which did find endometriosis. It was amazing to finally understand why I had all these problems.
Surgeries, pain and other problems
After my initial diagnosis of endometriosis, I had another two surgeries to remove the endometriosis and had an intrauterine device (IUD) inserted. After each surgery I would feel better for a while, but then my pain and symptoms would return and then they started to get worse. I kept missing days of work because of my pain. I had been in a few short-term relationships, but sex was always extremely painful. I was really struggling to understand why I was still having pain. My gynaecologist had even said the endometriosis was much less at my last surgery, so I couldn't understand why I continued to experience pain and the impact it was having on my life was increasing.
My gynaecologist suggested I see a pelvic health physiotherapist. From the first appointment, my physiotherapist really listened to me and I felt she genuinely cared about me. She asked about the impact endometriosis was having on every aspect of my life at the time; my mood, my work, my friendships, my thoughts, my openness to having a relationship and my dreams for the future. I felt heard. For the first time I felt hopeful; that I might be able to find some joy in life.
Everything matters
I was so surprised to learn that there were many things, apart from my endometriosis, that could be contributing to my pain and symptoms and there were more options than surgery, medication and heat packs. My physiotherapist taught me that pain is one of the body’s warning or danger detection systems and years of pain had made my nervous system sensitive and overprotective.
My physiotherapist helped me to understand that what I was thinking and feeling, together with all the things and people in my life (e.g friends, family and work) could be contributing to making my pain worse. Even things like sleep, my diet and general physical activity could either turn my pain volume up or down. We discussed how my nervous system works and that pain is produced by the brain, however this doesn’t mean that it is in my head. I learnt that it is possible for the brain and nervous system to change and calm down. I finally started to have hope that I could change my pain, slowly and with support.
How we got my pain under control
We established a plan that felt achievable and that was focussed on calming down my overly sensitive and overprotective nervous system. I started going for a short walk with a friend most days of the week and started doing a breathing and relaxation exercise in a position that I found comfortable. I noticed that I could calm my pain down if I did this exercise when I felt really uncomfortable. Just from these two simple things, I started to feel a little brighter in myself.
My physiotherapist also talked to me about the science of pain. Wow. I’d always been told that it could only be the endometriosis itself that causes pain. Now I know that pain is both physical and emotional. I also learned that pain is only one of the ways the brain protects me. My bladder urgency and my fatigue were also telling me that my nervous system had become sensitised and overreactive.
When I was ready, my physiotherapist assessed my pelvic floor muscles. I had no idea how much tension I was holding in my pelvic floor muscles and in my abdominal muscles. This tension was leading to my bladder symptoms and was contributing to why I couldn’t use a tampon and why sex was painful. Learning how to relax these muscles was a turning point. I loved the feeling that the exercises my physiotherapist suggested I do each day reduced all that tension. After a while, I explored using a vibrator to learn how to keep my pelvic floor muscles relaxed.
My physiotherapist felt a bit like a health/life coach. She was in my corner and helped me troubleshoot and navigate problems and issues that came up. After a while, I agreed to see a psychologist so that I could work on changing the thoughts and feelings that were getting in the way of me feeling better.
My new life
I knew it would take time, and there have been ups and downs, but I finally feel like I am in control of my pain and my life. When things aren’t going well, rather than panicking, I am able to reflect on what is happening in my life at the time and work out why my pain has flared. I now have a range of effective strategies to deal with my pain but overall I have so much less pain than I ever thought was possible.
I have met a gorgeous man and am in a very happy and supportive relationship, where intimacy is better than I ever imagined. When we go out with friends, I hardly ever have to cancel plans anymore. I don’t even think about where the toilets might be. Plus, I have finally managed to build up a little bit of sick leave at work.
I realise I have to keep working at this. I know what I need to do to keep my nervous system calm. I have to exercise (and doing it with friends is just the best) and I need to prioritise my sleep. I need to make time for mindfulness and relaxation. I need to surround myself with people that care about me and are positive. Overall, I need to be kind to myself.
This story has been reprinted with kind permission from Pelvic Health Physiotherapist, Shan Morrison at Women’s and Men’s Health Physiotherapy in Melbourne.
What is an intrauterine Device (iud)?
An intrauterine device (IUD) is a small contraceptive device that is placed inside the uterus. It is used to provide long term contraception and hormonal IUDs may make periods lighter and less painful.
What is endometriosis?
Endometriosis is when tissue similar to that in the lining of the uterus (or womb) grows outside of the uterus, generally in the pelvic or lower abdominal area, including the ovaries, fallopian tubes, vagina, bladder and bowel. Some of the signs and symptoms of endometriosis include pain in the pelvic area, painful periods, heavy periods, infertility (or difficulty getting pregnant) and pain with sex.