Jess's Story

I remember my very first period. Might be TMI but I remember looking down into my undies and wondering how on earth I pooed my pants without noticing! There were brown smears and I had no idea what it was! I was mortified and called my mum into the bathroom to profusely apologise for my accident. She answered, oh, that’s just your period. Little did I know that “just my period” would be a whole lot more trouble than I had anticipated. It actually has shaped my life, my career, my choices, my health status, my feelings, my being.

I don’t remember having pain with my first few periods, but definitely over the next few years I remember cyclic overwhelming nausea. I remember having cold sweats. I remember horrendous headaches. I spent the first day or two of my period in the school nurse’s office where she would let me lye down with a heat pack and call my mum to pick me up as I couldn’t bare to be at school. I was also bleeding heavily, having to change tampons often, wearing pads as extra leak protection and I always felt like I worried more about my period than my friends. At about age 16 I went to see a gynaecologist. She was really understanding and up to date with the latest evidence, and she said the words “I think it sounds like you have something we are just starting to understand more about. I think you have endometriosis”. This was in 2001. I consider myself lucky to have received my suspected diagnosis at such a young age. I was put on the contraceptive pill for managing my period pain, teenage acne and also, because I think my mum was scared I was sexually active and she wanted me to be protected! I was warned that it was likely I would need to have a surgical procedure in the future to remove the Endo, and that I should be aware it could effect fertility. I must admit, I was quite re-assured at the time. The doctor never said anything scary or used any kind of language that would make me worried about my diagnosis.

Around the age of 19 pain was worse. The most painful memory I have is of opening my bowels. Passing a bowel motion was extremely painful. A sharp pain while the poo was coming out and it could continue for a few minutes afterwards. It would make me double over in pain and I would be willing my body to just get the poo done so that the pain would stop. I did have some deeper sexual pain but it was mostly managed with different positions and wasn’t my main symptom. Period pain was also high and always accompanied with nausea, feeling faint, feeling clammy, hot and cold flushes, and always worrying about (and having) menstrual leaking. I know I had several menstrual leaks when out or overnight. Its just something that we shouldn’t have to deal with right? But it was commonplace for me.

I had my first laparoscopy around age 20. Endometriosis and Adenomyosis was confirmed. My gynaecologist was excellent. Unfortunately my Endo was severe. It was grade 4, and he felt that it was too dangerous to remove it all at this time as removal could perforate my pelvic organs. I woke up, hearing the words “we haven’t done the surgery as planned. You’ll need to go on some medication and come back in a few months time for the Endo removal”. I actually wasn’t sure if I was still dreaming from the general anaesthetic. I had monthly injections of Zoladex, a tiny thing like a grain of rice, inserted under the skin of my abdomen, once a month for 3 months. Zoladex caused extreme hot flushes. I don’t really remember whether I had any other side effects but I do NOT look forward to menopause as I have already had a taste of waking up in the middle of the night, drenched in sweat, or having to fan myself in the middle of a café asking those around me “did it just get really hot in here?”.

A second laparoscopy was performed and Endo excised. I recovered well, taking about 2 weeks off from work and gently returning to more movement and exercise around the fourth week post-surgery. I also had a Mirena inserted at the time to manage symptoms.

I had always wanted to be a Physiotherapist, and qualified as a Physio in 2007. I worked in general Private Practice, and following the birth of my first son in 2013, I found myself on the journey to Pelvic Health Physiotherapy. I believe that a combination of my experience of Endo, as well as my experience of pregnancy and birth culminated in my passion for the body and specifically, the Pelvis, Pelvic Floor and Pelvic Pain.  A professional highlight for me was the completion of my Post Graduate Degree in Pelvic Floor Physiotherapy which has allowed me to help others through their Endo experience.

Over the years I managed my symptoms fairly well. I also found out along the way that I have inflammatory bowel disease, which is found in 50% of Endo patients (according to a large Danish study). That was a difficult thing to process at the time as I had terrible pain and uncontrolled diahorrea. At the time my symptoms made leaving the house very difficult and risky. I felt very isolated and alone. Somehow, I was now grappling with multiple “chronic” diagnoses of Endo, Adeno and IBD. Now I understand these chronic diseases will require management across my life. At times one is more flared than the other. Rarely are they both bad at the same time. I have also suffered secondary inflammation in my hips joints and thumbs. My thumbs improved after 4 months, my hips took longer taking up to 2 years. Thank you Immune System (or not). I've also had one experience where I had 4 months of bleeding which was attributed to my Endo and Adenomyosis and needed to have a D&C to remove the blood clots in my uterus.

As a Pelvic Health Physio I feel lucky to have been through what I have. I have experienced first hand many of the symptoms of my patients. I have a deep understanding of what it means to be told I have a chronic disease, an invisible disease, a disease that can stop you in your tracks. One that can be like it doesn’t exist some days, and can be heavy and debilitating on others. But what I truly feel grateful for, is the ability to impart knowledge, treatment options and support to my Endo community.

Endo Online was created from my own personal experience as an Endo patient, as well as a Pelvic Health Physio with deep insight and interest in the treatment of Endo and it’s related symptoms. Very often I only meet patients after they have tried everything else. They are at their wits end. They have “nothing left to lose”. But I would like to change that. I would like to suggest that holistic mind and body treatment through the guidance of Pelvic Health Physios be a mandatory component of endometriosis management.  It only makes sense that a whole body disease which currently cannot be cured, be managed with a whole body approach.