One of the Lucky Ones - My Endo Story

By Kathleen McNamara

When it comes to Endometriosis, I am one of the lucky ones. Which is crazy actually, because the last 17 years of my life have been largely influenced and altered by the disease. But, in some ways, I am one of the lucky ones. I am lucky because unlike a lot of young girls (especially these days) I didn't start menstruating until I was almost 16. So I haven't had it as long. I am lucky because when I first went to the school nurse needing a slip to say why I hadn't been able to make it to classes that day, she didn't dismiss my pain as ‘period pain’ and send me on my way. She took one look at my heavily bloated belly on my skinny little teenage frame and sent me straight home with a note for my mother saying to take me to the doctor ASAP. I am lucky because the doctor that my mother took me to knew what endometriosis was and sent me straight to a gynaecologist. I am ‘lucky’ because from experiencing my first debilitating and crippling period at 16 to finding a concrete diagnosis of ‘Stage IV deep infiltrating endometriosis’ only took 3 years. ONLY 3 years. And I am one of the lucky ones. This disease has an average diagnosis time between 7 and 9 years. 

The (first) gynaecologist I went to see told me to go on the pill. I could take it continuously and only have a period every 3 months. Problem solved. Oh and if that didn’t work, people find that pregnancy usually improves their pain. I was in year 11 at high school and still a virgin, so the latter was not a great option. I went on the pill on and off for the next three years. The problem was not solved. The first pill I tried gave me depression and horrible hormonal highs and lows, and although not having a period for 3 months was somewhat of an improvement, the mega period from hell I experienced every 3 months was just not worth it. Eventually with each pill it would simply stop working anyway and I would experience breakthrough bleeding and pain each month regardless. I ended up in the emergency department several times when I had my period. The pain was like someone stabbing me in the ovaries and scraping barbed wire down the inside of my abdomen. I would get referred pain in my hips and down to my ankles. It was horrific. 

After one of those trips to emergency, I was referred to another gynaecologist and booked in for my first laparoscopic surgery. It was supposed to be day surgery but I ended up in hospital for 5 days and spent 24hrs after surgery spewing violently. I was told it would be keyhole surgery and scarring would be minimal. My belly button ended up looking like someone had taken an actual key to it. I was told recovery would take about two weeks. It would be three months before I could have full use of my stomach muscles without pain. The physical side of things was tough. It was nothing compared to the mental side of things. The gynaecologist I saw was a male in his 50s and to say his bedside manner was lacking would be an understatement. I was also not told at any point that the surgery was a ‘diagnosis only’ surgery. I was under the impression that if they went in and found endometriosis, that it would be removed and it would help with the pain. This was not the case. The gynaecologist doing the surgery was changed at the last minute and I was never even given the chance to meet him. The whole experience was atrocious.  

Screen Shot 2019-08-31 at 5.23.55 pm.png

When I went for a follow up appointment with the gynae, I was told they had found extensive endometriosis. In some way I was relieved, I had been so scared that they wouldn't find anything and that it had been in fact ‘all in my head’ as some wonderful male relatives had suggested. The relief was short-lived however when he then told me, there is no cure, they don’t know what causes it, and there are few effective treatment options. Also, there was a high chance my fertility would be affected and I would be unable to have children. Again, I was told that if I did manage to get pregnant, it would probably help with the symptoms. The options he gave me were to go back on the pill, or to go on a hormone treatment that would basically trick my body into thinking it was going through menopause. With that would come the side effects of going through menopause. Those options did not come with any compassion or understanding, or even any real hope for helping with the pain. I walked out of the appointment that day vowing that I would never see a male doctor for endometriosis again, and I would educate myself so I didn’t leave my care in the hands of people who did not care about me. 

For the next nine years, I read as much as I could on endometriosis. I felt completely let down by the medical system and I went to naturopath after naturopath. I went to Chinese herbalists,I had acupuncture. I cut out dairy, wheat, caffeine, soy, peanuts, alcohol, red meat, chicken, fish, fructose, and anything else anyone mentioned might help. I went to Indian healers, I did yoga, I swallowed horrendous tasting pills and elixirs, I rubbed natural progesterone oil made from yams on my neck each night. Every now and then I would try another type of contraceptive pill and soon be reminded that they didn't work for me. Each time I had a reasonably ‘good’ period I would try and replicate everything I had done that month. Nothing lasted and eventually I gave up. I stopped taking anything, I started eating what I wanted and enjoying my life 3 weeks out of every month. The fourth week I would call in sick for work, miss days at uni, chow down painkillers and curl up with a hot water bottle. 

Eventually, that fourth week started creeping up sooner, and lasting longer. I would find myself needing to take days off when I ovulated as well. Then the flare-ups started. A flare up is like your worst nightmare. It comes from nowhere and hits you for six. Anytime, anywhere it will just take you down. Like a kick in the guts that leaves you bent over in debilitating crippling pain and can last, in my experience, anywhere from two seconds to two weeks. It is embarrassing, humiliating and soul destroying. Having to explain to your male co worker why you all of a sudden can’t move but somehow have to get home. You don’t leave the house without serious painkillers in every pocket and every bag, and an exit strategy for every situation. You become the most unreliable person ever. Your boss hates you and thinks you are a hypochondriac. Your friends get sick of you cancelling on them. Your teachers no matter how amazing and helpful and compassionate cannot drag you through a uni course when you are only there two weeks out of four. Your own family, however compassionate eventually start to think that maybe, maybe you are just a little bit lazy. Some days, you are so alone in your invisible pain that you start to wonder if maybe you are lazy, just have a low pain threshold or it is all in your head. To try and explain to other people what you go through having endometriosis is basically impossible.

9 years after my initial diagnosis, I was a broken shell of my former self. I weighed 45 kilos, and was in chronic pain. I was frail and fatigued, and I was eating Tramadol for breakfast. I could not get up in the morning without multiple ‘layers’ of painkillers. It was insane, taking a slow release Tramadol with added Panadol and Ibuprofen just so I could walk. Then only managing throughout the day by adding even more to the cocktail. The thing is that the more painkillers you take, the less effective they become. It was a downward spiral and it wasn't sustainable. I went to a support group during this time and it was through that I discovered a book by Dr Susan Evans called Endometriosis and pelvic pain. It was the most comprehensive guide to endometriosis and treatment options that I had read so far, and it renewed my faith in the medical system enough to contact her and ask if she knew of a female endometriosis specialist in Victoria that could help me. 

After my first appointment with Dr Emma Readmanand hearing that surgery was most likely on the cards I was instantly apprehensive but I had run out of other options. I was at rock bottom. I was eating more painkillers than food. I couldn’t work. I couldn't study. My hormones were all over the place. I couldn't exercise. Some days I couldn't even walk. Surgery couldn't make anything worse than it already was. So she had a better idea of what she was going in to, Emma sent me for an ultrasound with Dr Sophie Piessens, one of the founders of the Sonographic Association For Endometriosis (SAFE) and one of the few people in the world who can recognise and diagnose deep infiltrating Endometriosis on ultrasound. 

I cannot actually explain in words what it felt like; walking into that ultrasound room, lying on the table and being told, “wow, this must be causing you a lot of pain”. Relief doesn't cut it. To be not only taken seriously but treated with absolute compassion and understanding is not something I was familiar with having endometriosis. I had been to many different doctors over the years and generally the manner was one of condescension and indifference. She talked me through the entire ultrasound, sharing what she could see. It didn’t paint a pretty picture. My ovaries and tubes were covered in chocolate cysts and endometriosis lesions to the point they were stuck together around the back of my uterus, strangling it, everything was in a big ball of stuck together organs on my right hand side. I broke down after that appointment, I was so relieved that there was a reason for my pain. 

It is the invisibleness of the disease that is perhaps the hardest. Even my ever supportive husband who has carried me to the toilet in the middle of the night, got me painkillers and hot water bottles too many times to count and seen me at my absolute most fragile, gets frustrated with me at times. Because my hormones are out of control and I've been crying all day, because the fatigue is so hard to fight through or the painkiller hangover is too much to deal with, because the pain is so bad I cannot walk or get dressed or function. Because he knows what I say but he cannot see what I feel. He just has to trust that he hasn't married a lazy, painkiller-addicted hypochondriac. Sometimes I look forward to the ultrasounds and the surgeries because they are a reminder to all of us that what I feel is real. Even to me.

I had my first laparoscopy with Emma in June 2011. It was a long surgery, but it went well. In fact my belly button came out looking better than it had after the first surgery. I would require a second surgery in 6 months time for her to finish clearing out the endometriosis on my right hand side. After recovering from the first surgery I felt better than I had for years. With my organs freed up and back in the correct positions I was finally pain free and had six glorious months of surfing and yoga and doing all the things I had missed out on. I even started studying again online. After the second surgery in January 2012, Emma informed me that my tubes had endometriosis in them and were becoming blocked, the right side in particular.

When I was 19 and heard for the first time that there was a high chance I would be unable to have children, it didn’t really register as something real. I was 19 and hadn’t even had a boyfriend for more than a month at a time, having kids was the last thing on my mind. Plus, it wouldn’t actually happen to me. Even at my very worst I sat in support groups listening to women sob as they told the story of their journey of infertility from endometriosis, thinking, knowing, that wouldn't happen to me. So when Emma said after my second surgery, that we might want to start trying sooner rather than later, I wasn’t worried. At that point, I was 28. I had a long-term boyfriend who was the love of my life. I was nervous of course, having kids was a huge deal but not having kids was a bigger deal so we got started on ‘trying’. As the months rolled by and nothing happened I got more and more worried. What if I was wrong? What if it did happen to me? 

 I needn't have worried. I fell pregnant within a year and when we went to the first ultrasound at 6 weeks to make sure it wasn't ectopic (I was high risk because of the blockages) they told us they thought it was twins! We were over the moon and slightly freaked out. I felt amazing and had no pains; I was walking around in a constant state of bliss. Unfortunately our state of bliss was only to last 9 short weeks, as I miscarried and lost both embryos. It was the single most devastating moment of my life. I had only known them for 9 weeks, but the loss was so hard to come to terms with. On top of that, the pain left me almost completely incapacitated for over a month afterwards. Never have I been in such emotional and physical pain at the same time. We stopped trying for a long time, as I couldn’t face that happening again. After a few months I noticed a side affect of losing the babies. I had no pain. For 8 whole months I was pain free, and even able to do ‘normal’ activities while on my period. It was a bittersweet gain.      

We got married in March 2015. We had been trying again for four years since the miscarriage and were losing hope of having biological children. I was eating Tramadol more and more regularly and went and saw Emma and Sophie again. My right tube was now completely blocked and was leaking toxic fluid back into my uterus, making it impossible for an egg to implant. In May I had my third laparoscopy with Emma. She removed my right tube in a four-hoursurgery, and afterwards told me she never wanted to go in there again as it had been so difficult. She also said that it was pretty well a now or never situation with the baby making. As a last hurrah, we took 3 months off work and went on a  honeymoon/baby making mission to Indonesia. We went to healing temples, had reflexology treatments, massages, anything we thought would relax us and help us conceive. We came home three months later, relaxed and tanned, but not pregnant. 

I had met older women who were unable to have children. Some were fine and had gotten on with life and were happy. Others had alcohol issues, failed marriages and a certain bitterness about them. I was determined not to let being childless define me and ruin my chance of a happy life. I wanted to mourn and then move on. There were a lot of tears and it was a long and difficult grieving process, but finally I felt like I would be ok whether I had children or not. It was October by then. I found a course I wanted to do and we made plans to move to NSW in June so I could start studying. We made a list of all the countries we would travel to. We would live a full and happy life together just the two of us. 

About 6 weeks later, we caught the first glimpse of our daughters beating heart on an ultrasound. Ironically it was the same lady who had done the ultrasound to confirm the miscarriage. I will never forget that moment of seeing that tiny little alien thing with its heart beating away inside me. I will also never forget the next moment when I asked, “so it is just the one then?” and she said “yes, just the one…” as she rolled the wand over to the left side to reveal another little alien with a strong, beating heart. The pregnancy was high risk and we were terrified of losing them again but it was the most glorious 34 weeks and two days of my life. I was pain free, my hormones were the most stable they have ever been and I ended up with not one but two healthy, happy babies. I feel so justified in every tear I ever shed over not being able to have children because it was real. I would have been fine without them, because I wouldn’t have known what I was missing. But with them, I am so much more than fine. 

I know my journey with Endometriosis isn't over. I feel it creeping back over me, a twinge here, a little stab there. It scares me to think about it, so I try not to. I don't know what the future holds for my uterus and I, but I look down at my two miracle babies sleeping on me as I type this and I know for sure now that no matter what happens with the disease, I AM one of the lucky ones.

The materials available on or through the [‘QENDO’] are an information source only. Information provided by QENDO does not constitute medical advice and should not be relied upon to diagnose or treat any medical condition.To the maximum extent permitted by law, all contributors of QENDO make no statement, representation, or warranty about the quality, accuracy, context, completeness, availability or suitability for any purpose of, and you should not rely on, any materials available on or through the website QENDO disclaims, to the maximum extent permitted by law, all responsibility and all liability (including without limitation, liability in negligence) for all expenses, losses, damages and costs you or any other person might incur for any reason including as a result of the materials available on or through this website being in any way inaccurate, out of context, incomplete, unavailable, not up to date or unsuitable for any purpose.