DISCLAIMER: This is an article about endometriosis. There are some detailed stories of my experience with endometriosis in this article. I felt that this needed to be an article with a certain amount of honesty and transparency in order to bring about greater awareness of this disorder and for readers to have a better understanding. I recommend to readers who may not be comfortable with the use of certain medical terms, at times gory descriptive language or for those who just don't want to get to know me that personally, hit the home or back button now. Things I have written in this article are not to be taken as medical advice. I do not have the qualifications for that. Again, these are my own personal experiences. If you feel that some of what I have described in my own experience aligns with your own, then I urge you to seek medical advice.
"Period pain is not normal". I was surprised when I first heard these words coming from my General Practitioner. As a woman, you grow up believing that pain is something that simply comes with your period. After all, everyone else seems to be enduring the same. However, it is because we have normalised this, it takes on average 7 to 10 years to diagnose a woman with endometriosis. That is a long time to be living with pain that is not meant to exist.
So what is endometriosis? Endometriosis is a chronic condition where the tissue that is similar to the lining of the uterus (womb) occurs and starts to grow outside this layer and potentially on organs and muscles. It can cause a range of issues but most commonly pain and infertility.
My story goes back all the way to when I first started menstruating. Periods were irregular during that first year of high school and I remember being taught that this was normal for girls who were just starting to menstruate. However, that irregularity never changed for me. I remember in one of my high school years where my Physical Education teacher frowned when I handed her yet another handwritten note from my mum excusing me from another swimming class because I had my period again. I recall how my teacher asked how I could possibly have my period again when I only had it two weeks ago. Truth be told, I never stopped bleeding. To me, this story exhibits how there exists a lack of understanding even amongst women about issues that can affect our bodies.
I lived with the pain and irregularity throughout high school. By the time I had graduated, I had tried numerous types of contraceptive pills to help and try regulate me and reduce the pain. There were a couple of times where I thought I had it under control, but "LOL! JOKES!", said my body. In early 2012, the irregularity was at its worst, pain was becoming more severe and I was constantly tired. Blood tests confirmed that I was iron deficient. This is when my doctor highlighted to me that pain during your period is not normal and I was referred to seek gynaecological advice and treatment.
I was lucky that the gynaecologist I went to see had recently treated my mother for endometriosis, so she was aware that hereditary may be involved. I was sent to get an external ultrasound sound (similar to what you would see on TV when a pregnant woman goes in for a check up) which showed a single polyp. A polyp is the noun given to a projecting growth of tissue from a surface in the body. The sonographer had said that whilst it was not necessarily big enough to operate on, the fact that it was there was a sign that something was going on. Sounds very vague? Yeah... that is how I felt about it too. I remember thinking that maybe I was making a big deal of something small. Yes, there was a polyp but maybe that was all there was to it. Nonetheless, after some discussion with my gynaecologist it was decided that I would go under the knife for a laparoscopy. A laparoscopy is investigative keyhole surgery that looks to examine the interior of the abdominal or pelvic cavity. I remember waking up from this surgery feeling cold and shivering (which I later learnt occurs when ones' body is in shock). I heard voices in the background and I recognised one as my gynaecologists telling the hospital staff that I needed to stay overnight as the surgery was a lot worse than they had anticipated. I was told by my gynaecologist that I had one of the most severe cases of endometriosis she had seen for someone my age. I was 19 at the time.
Fast forward over four years, I yet again found myself in excruciating pain with bleeding that would not only be heavy and full of clots, but would last for months on end. Over this time, I had tried almost everything to help my symptoms. I have never really spent the time to calculate exactly how much money I had spent on medicines and other remedial methods like physiotherapy and traditional Chinese medicine, but I am quite sure it would be in its thousands. The past four years have definitely felt like a never ending rollercoaster ride, both physically and emotionally. Sex was also an issue. It hurt before, during and after and there were those occasional times where it looked more like crime scene than a scene of pleasure. Doctors have explained that this may be caused by the friction rupturing an endometriomas (blood-filled cyst). My weight spiked to an all time high despite the healthy eating and exercise. Pain would often start appearing a week before I actually started to bleed, and yes, PMS was a nightmare. Even I was scared of how moody I could be. I often found myself sitting there on the couch watching an ad and tearing up. Mind you, the ad was not even sad. But the worst would be when I would suddenly explode in anger at my family, which they did not deserved at all and deep down, I knew that. My abdomen would bloat so much that it hurt from my skin being stretched and the pain was so bad at times that I would have to lie in bed for a couple of days just to get over the pain and the exhaustion that came with it. I have described the pain to friends in the past as a narrow knife that stabs you right in the uterus and twists side to side (I actually have no idea how this really feels in life, but I feel like my description wouldn't be too far off). Sometimes, I had pain that would start around the left side of my pelvis and travel all the way down to my left ankle and all the way up to the left side of my head. It was as if I had been split into two and my left half was being pulled with a pole away from the rest of my body. Other times the pain felt like someone had put their hands around my ovaries and were squeezing them hard in an attempt to burst them.
Side note: I had also been diagnosed with Polycystic Ovaries (PCO) during this time. PCO is when there are a high number of partially mature follicles on the ovary. During a normal ovulation cycle, you will have a number of follicles that begin to mature but usually, only one becomes dominant and drops to form the egg that is ready for fertilisation. The other follicles that have begun to mature usually return back to original size, however in cases of polycystic ovaries, the partially matured follicles do not return. It should be noted that PCO differs from Polycystic Ovarian Syndrome (PCOS). PCOS is a metabolic condition that is accompanied by irregular periods and increased levels of male hormone. I have popped a link for more information in the references below.
I had an ultrasound every six months after my initial surgery to ensure that the endometriosis did not grow back and each time, they came up clear. This was probably the most frustrating part. You're being told that everything looks normal yet you feel as bad as ever. You aren't sure whether you are just conscious of what you have had in the past and therefore being super cautious and going a little crazy over it, or whether there is actually something wrong. It was only in September of this year that my gynaecologist and I discussed having another laparoscopy. We decided that this was probably going to be the best course of action and give me the clarity I needed on why I was experiencing so much pain. So on November 2nd 2017, I went into hospital for my second surgery and came out afterwards having 10 pieces of endometriosis removed. So why didn't the ultrasound pick up on them? I had something referred to as superficial endometriosis which ultrasounds are typically unable to pick up. Whilst the surgery went well, there is no promise that the endometriosis won't grow back again. The precaution I have chosen to take this time was that I had a Mirena inserted as the traditional pill had failed me in the past. The Mirena is an intrauterine device (IUD) that releases the hormone levonorgestrel. The aim of this is to stop me from bleeding all together so that it decreases the chances of endometriosis growing back.
So how am I healing? Well, almost three weeks after surgery, I am sitting here writing this article still with some discomfort. The bloating from surgery is still there although nowhere near as bad as what it was. The overall results are yet to be seen.
Some of you may have read this entire piece thinking how on endometriosis relates to our blog, skin and skincare. Whilst I haven't gone into great detail about the impacts endometriosis can have on your endocrine system, let me know in the comments if you want another article on that. Ultimately, the aim of this article is to urge you to listen to your body. About 1 in 10 women suffer from endometriosis so it is unfortunately not an uncommon disorder. Recently, celebrities such as Lena Dunham and Daisy Ridley have shared their endometriosis experiences. When I shared some of my endometriosis journey on our Instagram stories, there was an overwhelming number of people who wanted to know more with quite a few people never having even heard of it. Whilst living with endometriosis is not considered a disability, it really can affect all aspect of ones' life. It is not only the physical symptoms that can be difficult to overcome, but also the emotional and mental health aspects, relationships and financial. If you have in the past or currently are experiencing some of the things I have, please don't ignore it and pass it off as something normal. Go and seek medical advice.
RESOURCES:
Jean Hailes - Endometriosis: Symptoms and Causes
Polycystic Ovaries versus Polycystic Ovary Syndrome
IMAGES SOURCED FROM:
https://www.news-medical.net/health/What-is-Endometriosis.aspx
http://gazettereview.com/2016/12/best-supplements-polycystic-ovary-syndrome-pcos/