Written by Eimear McHugh
My journey started when I was 17 years old. I started university, living in Dublin and decided it was time to address what I had previously viewed as an embarrassing issue which I didn’t feel comfortable discussing with my local GP in a small country town. My complaints included severe discomfort on sitting and walking. I compared the feeling to as if I was sitting on a sharp edge of a rock or if I had fallen with force on to the bar of a bike. This pain would be a lot worse during my period with added issues such as leg pain and swelling to the point that jeans would not fit past my knees. I thought nothing of the pain with my periods as I believed it to be normal and what every other girl was suffering too.
I went to a Women’s Health Dr one afternoon after lectures. Feeling embarrassed and uncomfortable I explained ‘I have a lot of pain down below’. To which she responded, ‘So it’s the pill you’re wanting off me’. I was confused by that statement. I wasn’t sexually active and back then believed that contraception was the pill’s only purpose. So, I declined her offer. I was told, ‘all I can give you is the pill or Ponstan’. I am allergic to Ponstan so off I went with a script for the OCP, not knowing what it was for and nowhere near knowing what the cause of my discomfort was. I was so embarrassed by the experience and decided I wouldn’t investigate it further.
I had my gallbladder removed 3years later and told an inflamed gallbladder was the reason for my pain. The years passed. The pain did not. My next encounter: I needed a CST. The GP made three attempts to insert the speculum and was unsuccessful. I questioned if this was normal. I was told it was and that I ‘just have a retroverted cervix’. With the fourth attempt I vomited, I cried and my 2hour drive home was 4 and a half due to stops made to alleviate the pain.
I moved to Australia and met my current partner. I came to the brutal realisation at this stage that I could add inability to have intercourse to my list. This brought with it not only the physical pain but the emotional as well. I was confused, frustrated and embarrassed. As was he! Within the first year of our relationship I was due for another CST. Coincidently I was going on a visit to Ireland around this time so decided I would have it done there. It was history repeating itself. I swallowed my pride and mentioned that I was not able to have sex and why would this be. I was told ‘this can be normal for some people. It’s sometimes a matter of persevering and you will get there’.
I got my opportunity (now 27) for change when I got back to Australia. My partner gave me a gentle nudge and I went to see a Gynaecologist. My faith in healthcare was restored! I was dreading the appointment. I decided to park my dignity (what was left of it), at the door and tell my story from the beginning. It was my first experience discussing my complaint with a male Dr. I felt so vulnerable and I couldn’t even look him in the eye with embarrassment. In the corner of my eye I could see him nodding along in agreement as I described my symptoms and I felt so much better. I became quite tearful during this first appointment. Tearful to hear my story out loud, and emotional because finally I felt like I was being heard and understood, and not treated like I was creating a problem out of nothing. We planned for surgery with likely excision of Endometriosis. A term nobody had mentioned to me thus far.
In November 2016 I had excision of Stage 3 Endometriosis. I remember being very drowsy in recovery and hearing my Dr saying those words and I felt so relieved. Finally, I had a name for my symptoms and valid reason for having them checked out. Anything after that didn’t seem to matter. I have worked closely with a physiotherapist and my Gynaecologist since then. Along with the endometriosis, my issues have included vaginismus and PFM (pelvic floor muscle) overactivity. I have been using dilators for stretches since 2016 and had four rounds of Botox to my pelvic floor with varying benefit. I had the Mirena inserted in 2017 to help with ongoing period pain and it has helped me.
My team of Health care professionals to date include my Gynaecologist/Pain Specialist and Physiotherapist as well as the GP, a Psychologist and in more recent months Gastroenterologist and Dietitian. I am the captain of the team! Every decision is made with my thoughts, feelings and concerns considered. I am always provided with explanations around my care and given ample opportunity to withdraw from any route taken. I am in the driver’s seat!
Hate or anger are not emotions I feel very often thankfully. I live with an ‘everything happens for a reason’ attitude and all I can conclude is that I have been given this illness to make me a stronger person. While I do feel I was let down by many professionals I don’t think there’s anything to be gained from dwelling on my past experiences and instead I focus on the amazing care I receive now.
I do however feel disappointment. That this is the norm for me now- pain to some extent, most days, many nights pacing the floor, days off work spent going to appointments or trying every trick in the book to feel well enough to make it to work the next day. I feel sad that my body makes me miserable and is so unkind to me. I have always been healthy and was rarely sick growing up. This has been a very overwhelming adjustment for me physically and emotionally.
Most of all I feel guilt- Could I have done something growing up to prevent this from happening to me? Should I have done more of one thing, less of another? Could I have tried harder and persevered with those who dismissed me and my symptoms and maybe got on top of things before they got worse? Guilt towards my partner, my family, friends and colleagues. Sad that some days I don’t reach my full potential at work. When I mutter the words or type the message to a friend saying, ‘I’m sore today,’ I automatically feel like a failure or I have been defeated once again. I get a wave of anxiety that with the next reply from a friend it will be saying that they are sick and tired of my complaining or cancelling of plans. It hasn’t happened yet I have a very patient network of support thankfully!
My pain has never frightened me. I always think about it rationally and tell myself ‘this feeling will pass. It won’t harm me. It will be over soon’. I would never dramatize my symptoms. I don’t need to- it is bad enough in black and white! However, I would never talk them down either for someone’s benefit, so as not to have them feel uncomfortable. It is my reality. I have had many conversations with people who say, ‘You seem happy today have you got no pain’ or ‘you have not mentioned it the last while, are you feeling better now’. The answer to both will be No and that is not me being negative, that is me being honest to myself and to others.
My Gynaecologist and Physiotherapist have been integral in my improvement. They came into my life at a time when I had lost all hope in healthcare professionals. Had I not come to be in their care I fully believe I would not be as happy or as well as I am today. They have seen me at my weakest and my strongest and know me inside out. Literally! It has been great to have continuity of care and I see how important integrated care is.
My main issue of late has been slow and sluggish bowels. I have had a colonoscopy which thankfully showed no Endo in the bowel. I have trialled a low FODMAP diet with little/no obvious benefit. I suffer from extreme bloating which makes me very self-conscious. Mostly (not always), intercourse is possible with discomfort. I will have Botox to my pelvic floor again in a couple of months.
This is not the lifestyle I would ever choose but it is the one that I have and must make the best of it. For me, using dilators has become my routine, just as straightening hair is for others. Using suppositories to assist toileting is common practice for me just like applying fake tan is for my peers. I still have days where I will pull over on my way to work or have a sick bag on my knee just in case. Luckily, I am in a job that involves a lot of movement so when sitting is too uncomfortable I can walk around without getting noticed. It is so important to focus on the positives around this whole experience and how far I have come. I have an amazing family both blood and chosen who never tire from caring and listening to me. They offer me support on the tough days and encourage me on the good ones. I have a partner who lives every day of the illness with me and has adjusted to it without hesitation from day one. In some ways this hand I have been dealt has shown me how lucky I am!
My tool kit of coping strategies mainly consists of- exercise, heat packs, a TENS machine, a cushion for travelling and lately, rest. I have accepted that I need to listen to my body and treat it with TLC. No two women will cope the same way. Exercise for me is the most beneficial and has a better effect on my pain than any tablet has had to date! I regularly look to groups such as Endometriosis Australia and the Endometriosis Association of Ireland for support and information. There is a great sense of empathy among members and I would encourage others to utilise any groups available to them. I felt great personal satisfaction and pride last year when I ran the City to Surf in recognition of Endometriosis Australia!
My hope for women battling with Endometriosis is that they are listened to, and that those listening really hear the suffering and pain that these women are describing. We are not women looking for attention, we are not women behaving like drama queens and we are certainly not women with pain that is in our heads. I hope those working in this area of healthcare continue to raise awareness on the topic and educate those who refuse to acknowledge the prevalence and impact of Endometriosis.
Mine is just one story and it alone proves that this illness is far from invisible in its presence in my life.