An Endo Story

This article is a personal story written by one of our patients with Endometriosis who asked if she could share her experience in both our patient and referrer blog.   Her journey highlights the significant impact that a multidisciplinary health care team that communicates regularly can have on supporting people with Endometriosis.  We value being included in this MDT and learning from other health care practitioners to improve patient outcomes and help them achieve their goals.

My Story

I am 27 years old and wanted to share my story in the hope that it could help others who are going through a similar experience. 
I was born in India and moved to Australia with my family when I was 3.  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 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 busting 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 then referred me to see a Gynaecologist.  The Gynaecologist was the first person to tell me it wasn’t normal to experience 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 of these problems. 

Surgeries, Pain And Other Problems 

After my initial diagnosis of Endo, I had another 2 surgeries to remove Endo and had a Mirena 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 was really struggling to understand why I was still having pain.  My Gynae had even said the Endo was much less at my last surgery and yet my pain and the impact it was having on my life was increasing. I’d been in a few relationships but sex was always painful and the relationships ended. 
I then saw my Gynaecologist again and he suggested I see a Pelvic Floor Physio. I didn’t know how this could help but I was getting quite desperate so I thought I would go.

My Surprise

From the first appointment, my Physio really listened to me and I felt she genuinely cared about me. She asked about the impact Endo 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 and for the first time I felt hopeful that I might be able to find some joy in life.  I was so surprised to learn that there were many things (apart from my Endo) that could be contributing to my pain and symptoms and there were more options than surgery, medication and heat packs. 

Everything Matters 

To understand why I had so much pain even though my Endo had been removed meant that I had to understand that many other things could be contributing.  I learnt that pain is the body’s warning or danger detection system and I needed to look broader than my Endo. Years of pain had made my nervous system sensitive and overprotective. 
My Physio helped me to understand that what I was thinking and feeling, together with all the things and people in my life (eg friends, family and work) could be contributing to making my pain worse.  Even things like sleep, my diet and general activity were problems.  We discussed how my nervous system works and that pain is produced by the brain, however this doesn’t mean it’s in my head.  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 Physio talked to me about the science of pain.  Wow.  I’d always been told that it could only be the Endo itself that causes pain.  Now I know that pain is both physical AND emotional 100% of the time.  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 over-reactive.  
When I was ready, my Physio assessed my pelvic floor muscles.  I had no idea how much tension I was holding in my tummy and pelvic floor muscles.  This tension was leading my bladder symptoms and was why I couldn’t use a tampon and whay sex was painful.  Learning how to relax and switch off these muscles was a turning point. I loved the feeling that the exercises my Physio suggested I do each day reduced all of that tension.  After I while, I explored using a vibrator to learn how to keep my pelvic floor muscles relaxed when I was trying to touch myself or insert it inside.  I realised that my pain had really prevented me from feeling any type of arousal or desire.  I never thought I’d be able to enjoy a pleasurable sensation in my pelvis when this part of my body had always been so negative.  
We also worked on ways to improve my sleep and I increased the amount of fruits and vegetables I was eating.   I also made more of an effort to catch up with my friends on the weekends and after work.  I realised that there were people in my life that made me feel safe and others that were toxic.  It was hard, but I set up boundaries so that I was around people that were positive and helpful to me.  
My Physio almost felt 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 change my 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 and sex are better than I ever imagined.  I have the freedom to choose when I feel comfortable to have sex and he always respects my decisions about this.  We go out with friends (even after a full day of work!) and I hardly ever have to cancel plans anymore.  I don’t even think about where the toilets might be.  Plus, I’ve finally managed to build up a little bit of sick leave.
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, because my choices matter as I am my most important advocate.  

A note from WMHP

We sincerely thank this brave young woman for sharing her inspiring story and feel privileged to have supported her to restore her pelvic health, empowering her to live her best life.  She is a wonderful example of why we love what we do.
Here are some links to other articles that further explore elements of her physiotherapy approach.
March 2023