March 2018 was Endometriosis Awareness Month, and apart from an excellent podcast from The Irish Times Women’s Podcast, I can’t say I heard too much about it. Even as a sufferer of Endo, it didn’t seem to resonate on my radar. Ya see, if you ask me, that’s one of the awful things about this disease; it is silent. It is unknown, misunderstood or just simply disregarded.
I write this blog from bed on a Saturday afternoon after a night of intense, searing, uncontrollable agony and that is absolutely no hyperbole. My endo flare up’s generally take hold in the wee hours as I sleep. The pain grasps my entire being in a vice grips. I slip in and out of a delirious dance with tactile pain. I can touch it. I can see it. It’s visceral. Once during a particularly nasty flare up I dreamed I was walking through a black and white garden, almost like stepping into a creation of Lewis Carroll. I had a paint brush and pot of paint and I was colouring the roses a beautiful, deep, agonising red. These feverish dreams are surreal by their very nature and the soreness is often completely unmanageable. There is no doubt in my mind that if I experienced this level of agony in any other part of my body for any other reason I would not hesitate for a moment to call an ambulance. Why are there different standards for this experience?! That’s the question I ask every month.
What is Endometriosis?
I can’t say it better than Endometriosis Association of Ireland, so I won’t try!
“Endometriosis is defined as the presence of endometrial-like tissue outside the uterus (Kennedy et al., 2005). Endometriosis triggers a chronic inflammatory reaction resulting in pain and adhesions. Adhesions develop when scar tissue attaches separate structures or organs together. The activity and the complaints due to endometriosis may vary during the woman’s menstrual cycle as hormone levels fluctuate. Consequently, symptoms may be worse at certain times in the cycle, particularly just prior to and during the woman’s menstrual period. While some women with endometriosis experience severe pelvic pain, others have no symptoms at all or regard their symptoms as simply being ‘ordinary menstrual pain’.”
From what I can tell, the experience is different for every woman, which is part of the reason why it can take an average of 7 years for a woman to be diagnosed. Women are at the mercy of their GP’s with this condition. I can’t tell you how many times I was fobbed off with Ponstan and told that it was natural to be in pain during your period. It’s natural and women have done it for thousands and thousands of years. Since the age of 10 I have experienced horrific pain and it wasn’t until the age of 30 that a GP asked me if I had heard of Endometriosis. I, of course, had not. That’s 20 years of living with a debilitating and embarrassing disease, reassuring myself every month that it was “the most natural thing in the world”.
My diagnosis was confirmed following a surgical procedure called a laparoscopy. This procedure is generally done to identify the extent of the disease and to burn away any endometrial lesions to control adhesions. It was a day surgery and the recovery wasn’t too severe. I have only minor scars left to remind me of it. Thankfully, the relief I had following this was immediate and my endo just wasn’t an issue. But. This is temporary. Endometriosis is fueled by the production of Estrogen, so as long as I allow my body to produce estrogen it will recur. Two years on from my surgery, I guess that’s where I am now. Back with a bang.
Lena Dunham has long been vocal about her experience with the disease, and recently announced that she had, at the age of 31, taken the most aggressive approach to treatment undergoing a full hysterectomy of uterus and ovaries. The tragic thing about this action is that it may not work in all cases. Endometriosis is a wily disease, and when we stop providing the estrogen by removing the source (ovaries), sometimes the endo can generate its own and will continue to flourish.
Why am I telling you all this?
Well. Like I say. It took me 20 years to learn something that on some level I already knew. Women are systematically being overlooked or misunderstood when it comes to this disease and I want to add my voice to the conversation. I want to let people know that if they think something doesn’t feel quite right then follow that gut instinct. I don’t have the answers yet. I don’t even know what I am going to do now. My endo is back, of that I can be sure. So it’s going to be a process of putting one foot in front of the other and continuing with life. There are so many questions for me; treatment? fertility? cost? where to start? I don’t know. But I hope that by sharing my story I can bring some awareness and attention to the topic.
If you are a fellow endo-sister please share your voice and your story. Don’t stay silent on a topic that has been swept under the carpet for so long. So many of us suffer and do so in silence. Similarly, if you have any suggestions for me, then I am all ears! I have been reading others’ stories through blogs and there are so many brave sisters out there living with this and flourishing through their experience. We need to hear these stories!
I will update my own story here as I push through, but for today it will be a gentle day of painkillers and quiet time.
Thank you, as always, for reading.