Wednesday, March 28, 2012
Endometrioisis is a silent and mysterious disease that has a devastating effect on your life. When my endometriosis was first visually proven in 1994 by my first laparoscopic surgery I was only 17. I had been going to see doctors every single month in absolute agony since I was about 14. At s such a young age the devastating effects of endometriosis had begun. No one knew what was wrong with me. The doctors I saw simply prescribed strong pain medication telling me that I was just unlucky and that I needed to go on the pill.
I am so fortunate that my mother was a health professional and recognised that there was something truly wrong. She arranged for me to see one of the surgeons that she worked with. He immediately thought I had endometriosis and scheduled laparoscopic surgery for the very next week to visually prove this diagnosis as is required for endometriosis. It all happened very quickly. I can still remember the conversation I had with the surgeon after my surgery when he told me that that I had endometriosis.
I remember because I couldn’t pronounce the word. I kept saying it over and over until I could pronounce it. That is why most of us simply call it ‘endo’. I mostly remember how I felt. Initially I felt relieved. I felt relieved that someone could tell me what was wrong with me. I felt that the pain I had been enduring had somehow been validated. That there was a reason that every month I was in agony and the trips to the school clinic, the doctor and the hospital were not caused by something in my head. That it had a name. But that was only the beginning of a long and painful journey that still continues to this day.
Back in 1994 hardly anyone had heard of endometriosis. Certainly no one that I knew. I was fortunate that my family were supportive and understanding. There were no support groups or internet. Just the library and one single useless book. Every time I told someone I had endometriosis I had to explain what it was. It was awful. These days it is much easier. Now due to increased awareness when you tell someone that you have endometriosis you may get a look of pity and the person will normally say that they know someone with endometriosis or in the very least have heard of it.
From 1994 to 2010 I had laparoscopic surgery about every two years. Every month was the same hell – migraines followed by days of total and complete agony, time away from work and study because I was totally bedridden from excruciating pain and the effects of strong pain medication, clutching heat packs, insomnia and literally wanting to die. I had to plan my life around having my period. I was told to have a baby, exercise more, and to take herbal supplements.
I tried every hormonal treatment, every single type of contraceptive pill, GnRH agonist therapy, all leaving me with menopausal symptoms, acne and a trip on an emotional rollercoaster ride. I remember being 19 and going through menopausal symptoms at the same time as my mother. We laughed about it saying that we were lucky we could go through it together. I participated in horrific drug trials and donated my DNA to endometriosis research in an effort to understand endometriosis and to find a treatment.
Each time I had laparoscopic surgery there was more endometriosis than the last. It was aggressive. I was riddled with it. It was deep active endometriosis. At each of my surgeries they found advanced endometriosis and adhesions everywhere – both of my ovaries, the pouch of douglas, bladder, ligaments, fallopian tubes, bowels, throughout my pelvic cavity and wall and in other places I didn’t even know existed.
The endometriosis was so advanced that my organs were painfully fused together. At one point one of my ovaries was so full of endometriosis that it had weighted itself down and attached to my uterus. Each time they performed surgery they experimented with a new way to remove the endometriosis and adhesions and each time the doctors said they didn’t know how I was surviving in such excruciating agony. Sadly each time they had to leave endometriosis and adhesions because my insides were such a mess it would have been impossible to remove it all.
The most common feature of endometriosis is pain. I have spent more than half my lifetime in constant pain. I have lost all of that time to moments of absolute despair and excruciating agony. Describing your pain to someone is very difficult. Women are often told that having period pain is part of being a woman. They are told that it is all in their head. They are told it couldn’t be that bad. I am fortunate that all of the doctors I’ve seen truly believed I was in pain – even the ignorant ones. There are many women I know that have not been so fortunate. Their doctors haven’t taken their pain seriously.
I have an expression that I have used for my doctor and friends – ‘a thousand angry demon endo fairies are stabbing me from the inside’. The pain feels like someone is ripping you apart from the inside with their bare hands and the blood loss phenomenal. There were times when I would go crazy and feel psychotic from the pain. I would find myself pulling out my hair and clenching my fists so tightly that my nails would cut into my palms making me bleed. I would vomit and pass out from the pain. I would hug boiling hot water bottles scalding my skin to help alleviate the pain. I would find myself holding my breath for long periods of time. I would cry and sob as I prayed for relief even if it was only for a moment.
I have nearly lost every single job I’ve had because of endometriosis. I even had one employer send me a letter stating that he’d noticed a pattern to my absences and asked me to explain. Throughout my life friendships have been difficult particularly with women. Women who don’t experience period pain do not understand the pain of endometriosis. Some of them (and I dare say most of them) don’t believe you are really in that much pain. The social isolation that you endure is incredibly sad.
Because they don’t experience any pain they can’t imagine what it would be like and you feel their scrutiny even if they don’t voice it. You would assume that women would be the first to understand but I have found they are the last. Their questioning glances of ‘is it really that bad’ are nearly just as bad as the pain itself. When you are unable to attend weddings, birthdays, night outs and dinner parties because you are in too much pain they take it as a personal attack. It isolates you because people are confused. They are confused because you look completely healthy from the outside.
In 2007 after enduring so many surgeries and so many years in chronic pain I decided to get proactive about my disease. Instead of going to the doctor every month and getting prescriptions for pain medication I wanted to reclaim my life. I didn’t want to suffer. I wanted to survive. I wanted understanding. I wanted awareness. I wanted treatment and a cure. But most of all I wanted hope. Hope that one day I could live a life free from pain.
I found an excellent GP (general practitioner) who was the first doctor in so many years who actually listened to me. He didn’t start writing out a prescription for pain medication while I was speaking as all the others before him had. He looked at me and listened to everything I said. I can still remember that day for it was the first day that I realised I had to manage my disease. It was the first time a doctor listened to my despair and gave me hope.
One of the most important weapons you need to fight endometriosis is the team of medical professionals that look after you. Endometriosis is a chronic condition. You need access to support and a pain management plan. You need professionals that are extremely knowledgeable and completely focused on patient care. If it weren’t for finding this wonderful doctor I believe my endometriosis story would have been very different. This doctor told me that I needed to have my endometriosis resected explaining to me what this was and we decided to search for a surgeon who was an expert in endometriosis. I was prepared to travel anywhere in the country so see such a surgeon but as it happened the surgeon I needed to see was in my own city.
When I first met this surgeon his first words to me were that endometriosis was the most ‘under-researched, under-diagnosed, under-funded and under-treated’ diseased there was. He told me that he had recently attended a conference on endometriosis and sadly reported that all the surgeons that had attended this conference walked away not knowing anything more about endometriosis and that this disease was still a mystery to them. He didn’t offer me a cure but he offered me hope.
All of my previous surgeries involved the technique of diathermy and laser ablation for the endometriosis. He explained that they now know this is not the correct way to remove the endometriosis and in fact as it was with my case inevitably made my condition worse. The correct way is to carefully and skillfully resect the endometriosis ensuring that all adhesions are completely resected, particularly those with endometriosis on the organs. I had this surgery and the ultimate goal of my surgeon at the time was to preserve my organs. The recovery time was worse than I had experienced before – the pain was incredible. Walking was painful. At my post op appointment my surgeon told me that he had to leave a lot of endometriosis and adhesions, as he just couldn’t remove it all and that I should start thinking about a hysterectomy because in his words ‘I had no quality of life’.
I went to a traditional Chinese medicine practitioner and drank suspicious looking potions. I had acupuncture where they stuck needles in really strange places. I tried massage and Bowen therapy. I exercised more and I hoped and waited and prayed. I left my job in the city and moved back to my parents home so I didn’t have to worry about paying for all of my treatments and doctors bills and more importantly so that I could finish my undergraduate degree and start law school the following year. I fought this disease every single day. I refused to be defined by a disease. I did not allow the pain to encroach upon my life goals. I graduated and was accepted into law school. It took me longer than most people to do my undergraduate degree but most people aren’t battling endometriosis.
The endometrial resection didn’t offer any relief. Increased pain and bleeding in between my cycles made my life completely unmanageable. I couldn’t work, studying was nearly impossible, and I couldn’t function in normal everyday life and relationships. I was constantly in pain and constantly bleeding. I was on huge amounts of pain medication. In all honesty my surgeon was correct in that I had no quality of life. None whatsoever. More to the point my condition was becoming dangerous.
The catalyst event that lead to my having a hysterectomy was a holiday in late 2009 in South East Asia. I was stuck in Changi Airport toilets with massive hemorrhaging. I truly thought I was going to die, in the toilets, alone in an airport in an Asian country bleeding to death and no one knew where I was. My prayers were answered and I survived but I realised that a hysterectomy was the only thing that was going to spare me. The months before my hysterectomy were quite simply a living nightmare. I can’t even write about that time because I don’t want to remember.
On 1 June 2010 my surgeon removed my uterus and cervix. I will mourn on this date for the rest of my life. I had done extensive research and spoken with many women in the same or worse situation. Ultimately this did not prepare me for the absolute despair, loss and grief that I was to feel with being permanently infertile. I was completely saddened and so deeply melancholy. I spent whole days just staring at the wall of my bedroom with small silent tears streaming down my face. I was in severe emotional and physical pain. I didn’t expect to ever feel like that.
At my post-op appointment my surgeon told me that the hysterectomy probably wasn’t going to alleviate my symptoms. It was difficult to remove my uterus because there was endometriosis on the supporting ligaments. My endometriosis was too extensive and aggressive. He emphasized several times that this was ‘no cure’. The only difference was that the dangerous bleeding would no longer be an issue. I was to prepare in his words ‘for a life of pain’. He said that all the endometriosis and adhesions were still there and that I would require more surgery. He had left my ovaries even though one was very diseased but cautioned me that they would eventually have to go. He was trying to save them so that I could be spared from surgical menopause.
I remember crying all the way home from the appointment. I cried for all of the years that I had spent in pain, for the children that I would never have and for all the things that I had missed out on and the years of pain that I was about to endure. My recovery was very isolating. Friends that were ignorant to the very nature of endometriosis assumed that a hysterectomy was going to suddenly cure me. They were surprised that I was still in pain. I had hoped by this stage they would have at least googled endometriosis for if they had they would have known. It would have made my recovery so much easier emotionally. Having said that I should also point out that I also have some truly incredible friends that have been extremely supportive and understanding and that these people have been amazing. I don’t know what I would have done without them.
Every single day after my hysterectomy I was in constant pain and was fortunate to have my supportive and understanding doctor. We implemented a pain management plan. This involved a lot of trial and error with a lot of pain medication. I increased my exercise regime and starting working with a C.H.E.K practitioner. I tried to increase my fitness as I prepared my body for more surgery. I started swimming more both in the pool and in the surf, Turkish getups, boxing, yoga, and weights. Taking every single herbal supplement recommended for endometriosis, which is extremely costly. I eat organic food and no meat. I am good to my body but my body isn’t good to me. I pushed on and on. Fighting harder and pushing through my pain wanting to make my body stronger to fight the endometriosis. The more I thought of the pain the more I pushed myself. But there were (and still are) some days where the pain is so bad that I simply can’t get out of bed.
Something happened to me during this period of absolute despair and sadness. I suddenly felt very passionate about endometriosis and felt that I had a responsibility to advocate for this disease. I no longer felt ashamed that I had a disease. I didn’t want to suffer because I wanted to survive. I wanted to make sure that no woman would ever have to endure what I have had to endure. I wanted to know everything there was to know about endometriosis that I didn’t know already. Endometriosis is misunderstood. I felt compelled to make a noise about endometriosis so that it could be heard loud and clear.
I have to fight and push on every single day because I have to keep going. I have goals and dreams like everyone else. I also have duties and responsibilities like everyone. But unlike everyone else I have a silent invisible disease that is extremely debilitating and forces me to live in a way that is a constant battle.
Endometriosis has made me a tougher stronger woman. Sometimes I don’t feel like that tough strong woman but I am that tough strong woman because I am still here. I am here because I want to raise awareness for this disease and I am here because I have hope.
I hope to be liberated from this painful disease. I hope that young girls don’t have to suffer in silence and are diagnosed early to that they can receive care and treatment earlier. As I come to terms with a disease that has controlled my life I am also coming to terms with how much it has compromised my life and how my life has adapted to the challenges and obstacles of chronic pain.
As I write this testimony I am recovering from yet another surgery. The surgery performed was extremely long and difficult and there wasn’t any chance to save the remaining female reproductive organs that I had. It was ‘remarkable’ my surgeon said that in the five months since my hysterectomy there was so much active endometriosis and adhesions. During the surgery there was a rupture to the ovary that he had been planning to save due to a large endometrioma. Both of my ovaries were removed, fallopian tubes, active endometriosis and adhesions were resected from my bladder and those implanted in my bowels. Attempts were made to resect the endometriosis. No place had been left untouched by endometriosis. Everything inside me was compromised.
My surgeon said it was as if someone had thrown ‘endometriosis confetti’ inside of me. That the endometriosis had invaded and completely taken over my body. The most ‘remarkable’ part was that the endometriosis and endometrioma had formed so quickly since my last surgery and that there was significant active endometriosis when he said technically there should be none. Five months ago I was desperately coming to terms with my enforced infertility and I am now dealing with surgical menopause. The fact that I am still in excruciating pain is indeed ‘remarkable’.
This highlights that most of the current theories about endometriosis need to be re-evaluated. Endometriosis is not just a physical condition. After enduring years of treatment failures and disease recurrences the chronic condition of this disease is apparent. The most highlighting feature of endometriosis is that it is an enigma to the medical community. This can only be addressed by research.
There has been little to no research conducted on how endometriosis affects the lives of the women that battle with this painful disease. We need our health professionals but also our family, friends, employers and our community to acknowledge that this painful, chronic and pathological condition exists but also to advocate that this disease be taken seriously.
We must know and understand endometriosis. We must do this so that every single woman who is affected by endometriosis has hope. Hope for a life free from pain and infertility. For this to happen we must ensure that endometriosis is researched, diagnosed, funded and treated.