My Endo Journey - Erin's Story
By Erin, QENDO Member
I was first diagnosed with endometriosis back in 2012 but prior to that, my story is very similar to other young women who were suffering quietly with this disease. In my teens, I had terrible period pain but I was told that pain comes hand in hand with periods. I, therefore, believed all girls experienced the type of pain that brought you to your knees. I was not the exception; this seemed to be the rule. So for most of my teenage / early adult life, I thought I was just an extreme hypochondriac when it came to my period.
Every other girl I knew seemed to manage her monthly period without going into some sort of crazed lock down…why couldn’t I?
It wasn’t until I moved to London and my best friend ended up in hospital with an ovarian cyst that I had the thought that maybe I too suffered from cysts. My GP didn’t seem to think my symptoms were bad enough to be anything but period pain, however, my symptoms were progressively getting worse. Then the rectal bleeding started…THIS was when I really became concerned. I had to demand a referral from my GP to a gynaecologist for further scans. As soon as the scans were in, I was booked in for surgery within weeks (which, if anyone knows the NHS, is extremely unusual!).
And so began the official start to my journey with endometriosis, laparoscopies, ablations and excisions.
My first laparoscopy revealed that my endo was at stage four, however, the surgeon only performed an ablation on the areas which were affected. When I woke up from surgery, I remember the surgeon leaning over me and saying ‘Love, you need to get pregnant to sort this out!’ The pain returned within a few months and the rectal bleeding came back within a year.
Fast forward to 2014 when I had my second laparoscopy with a recommended gynaecologist back in Brisbane. He was certainly no expert in endometriosis and, in hindsight, I wish I had done much more research on my surgeons up until this point. Again, only an ablation was performed which did nothing but subside the pain for a few months.
Finally in 2016, I met a wonderful GP who specialised in women’s health and she referred me to an endometriosis specialist. By this stage, I was starting to realise that this was a chronic disease and not some little illness I would soon get over. After hearing my symptoms, the specialist recommended that I have another laparoscopy with the potential of performing a bowel resection. I tried not to think too much about this as it was ‘potentially not going to happen’. When I woke from my third surgery with a long incision across my bikini line, I knew that ‘potentially’ became ‘a definite’. The following days in hospital were difficult. My specialist revealed my endo was very aggressive and had adhered to pretty much every organ in my abdomen. All parts were stuck to one another, thus explaining the pain I would feel with certain movements and exercise. My upper and lower bowel had endometriosis penetrating through but they could only do one resection and chose the area with the most endometriosis, which happened to be in my upper bowel. He performed excisions on my lower bowel, bladder, ovaries, vaginal wall and outer areas of my uterus.
It was a long recovery but this particular surgery changed my quality of life. Although I now have nerve damage to my bladder due to the excision and I still experience the other side effects that come with the disease – migraines, extreme fatigue, back pain - the level of pain I feel during my period has been dramatically reduced. No longer was my period calling all the shots and affecting my social life to such a degree that I barely had one. No longer did I have to make sure I always had easy access to the bathroom wherever I went. No longer did I have to carry a pharmacy of hard-core drugs around with me in case pain became too intense. This excision really worked wonders on me….up until recently.
Throughout my endo journey thus far, my age was also moving along at a nice rate – as it seems to do…and, on occasion, I was reminded about my biological clock ticking away (don’t you just love those people who feel it necessary to point out the obvious?!). My age, coupled with severe endometriosis, made me start to think about my fertility and my options.
After a year and a half of less endo pain, I decided 2018 was the year to take matters into my own hands and do some egg freezing. I thought it would be quite straightforward and didn’t try to overthink it too much. I had no idea how emotionally draining the whole journey would be. Day one of injections was nerve wracking – injecting yourself for the first time is never a pleasant experience but once I did it, it wasn’t half as bad as I had imagined. After blood tests were taken on that first day, they revealed I was not actually having a period at all. It was just a mid-cycle endo bleed and everything had to be ‘put on ice’ for a few weeks. This was disappointing as I had psyched myself up for what was ahead of me. I now know that with an IVF journey, your reality is never what you envision it to be and your body has full control.
Two weeks later, I started the process again and this time it was the real thing. It all went pretty smoothly up until the trigger injection at the end where I started to bleed before retrieval. This was upsetting and worrying but since I was only freezing my eggs, a bleed wasn’t too much to worry about according to my doctor. In the end, nine healthy eggs were retrieved and all were viable for freezing. My recovery after retrieval was not overly comfortable. My abdomen stayed swollen for a few weeks and I had pain that seemed unusual according to other retrieval stories. I was worried about hyper stimulation but with only nine eggs retrieved, this was unlikely. Scans on my uterus showed up more endo as well as maybe adenomyosis. The swelling and discomfort may have been due to irritation of the endometriosis, scar tissue or adenomyosis when the retrieval needles went through the uterus wall. Several months prior to the IVF process, I was starting to have very sharp pain down my left side so to know the endometriosis had grown back wasn’t overly surprising. My specialist said he could see an endometriosis cyst on my right ovary. I thought this odd as most of my pain was on the left. He reassured me that he would have a look around at everything whilst inside to find where the pain was coming from.
So five week after egg retrieval, I was back in hospital for my fourth laparoscopy. I was upset about having to have this surgery but I kept telling myself that at least it would stop the pain in my left side and give me a bit of time to decide what to do about these frozen eggs and motherhood!
The morning after the surgery, my specialist visited me to tell me that they cleaned up my right side again – endo back on the bladder and some other areas since the last excision in 2016. However, on my left side (the painful side) I have endo growing along a main artery that extends into my kidney. The surgery for that would be much more difficult and would require an urologist alongside my specialist. He had to leave the endo there for the time being.
All I heard was ‘more surgery’. I was devastated.
Currently, I am trying to move past the news that yet another surgery is ahead of me. My specialist wants to start me on zoladex for six months in the hope that it takes down the inflammation of the endo around the artery, which may help with the risk factor in working on such a difficult area. I haven’t started zoladex yet as I want to give my body a break. I pumped it full of hormones less than three months ago to develop and freeze some eggs and zoladex will be taking my body in the complete opposite direction.
For me, I feel I need some time out from all of the hard medications I am using. I am getting back into exercising and eating a diet low in inflammatory foods. I found the QENDO community, which has given me a type of understanding and support that I have never experienced. Learning about QENDO could not have come at a more important time for me as I was starting to hit a low point in my endo struggle.
Endometriosis can be a very lonely and isolating disease – I know this and have lived this. Those that do not live with endometriosis every day have a very limited understanding of the effects it has on people’s lives. It is not just period pain, it so much more complicated and deeper than that. To have a support group to talk, vent, cry and laugh with is so important.
The one thing that I can honestly say is that living with endometriosis makes me appreciate the simple things in each day. I do not sweat the small stuff anymore because I know what is most important in life. Waking up pain free and being able to move easily; having energy to do things that make you happy…or just to do things that need doing; understanding how amazing the body is and how it tries to heal for us after each surgery; being thankful for support and love by those who try to understand the condition. I sometimes wonder if I did not have this disease, would I be as grateful for all of the little moments that I find so much joy in?
Although I know my endo journey will most likely end in a hysterectomy, I do feel lucky to be a woman in this day and age where we have so many options in front of us – when and if we decided to head down the path of motherhood. I am also grateful and relieved that there is more discussion around the topic of endometriosis coming out in the media, government and communities.
I am 1 in 10 and I am extremely proud of the strength and courage it takes to be part of this amazing community of women in Australia and around the world.
Thank you for taking the time to read about my endo journey. I have never shared my story so publicly like this before and it has been a daunting yet cathartic experience. If you are a young girl or woman reading this, I hope that maybe my story helps you with your journey too.
Love and strength
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