Impact and Hope: Living with Endometriosis by Erin McMahon
My endometriosis journey started at 13 when I first began my period.
My endometriosis journey started at 13 when I first began my period. I remember sitting in the classroom, feeling like something I ate was off except the pain was strange and in my lower abdomen. I was confused as to why the pain wasn’t going away but increasing in severity.
As the cramping began to increase I started vomiting and sweating. I had asked my teacher if I could go to the sick bay as I was not feeling well, and called my mum to come and pick me up from school. She knew immediately what was going on and came with Naproxen in hand, which is a common anti—inflammatory drug that stops prostaglandins from reproducing, known for causing cramps.
From that day forward every month I experienced extreme bleeding and pain. There was also vomiting, diarrhoea, headaches, dizziness, clotting and iron depletion. There was a complete exhaustion from that sense of bone dead tiredness that never went away, no matter how much sleep I had.
As I was missing important events I felt distant and isolated within my friendships, as I couldn’t keep up with the surrounding, bountiful-teenage energy I was so desperate to possess. I was confused as to why most of my friends could function on their periods, and why it was so different for me.
Age 14, I went to the doctor.
My mum stuck by me, she too was familiar with the pain. We explained to the doctor what I was experiencing, and how we didn’t think the profuse bleeding and extreme pain were normal.
“Unfortunately as women this is just something we have to deal with,” the doctor said.
As with many young adolescents and women the doctor recommended I take the pill. I bled every day I was on the pill and bled terribly when my period came around in my cycle. I tried another: My body refused it again, and I began experiencing mood swings and weight gains. I faced iron deficiencies from the constant bleeding and the continuing cycle of complete exhaustion. After a year spent trying to wait it out to see if it would settle, I went off the pill. By this time I was bleeding 21 days for 7 to 9 days straight, and it was HEAVY! At night I would bleed through a super pad AND a super tampon, soaking all over my pants and sheets.
When I had my period I wasn’t able to function during the day. I spent most my time in bed, in agony and completely over it. I knew it was abnormal, but at that stage I didn’t have the resources to investigate it further. Over the next couple of years I just dealt with the pain. I accepted that I would be missing school and that as a result my grades would pay for it. I continuously tried to push through the pain and exhaustion for my friends and family, but also for myself – I had the ambition of becoming a dancer.
Age 17, I had to make the decision to stop training.
I lost my dream career of becoming a professional dancer, a dream I had worked tirelessly for throughout my teenage years. It brought about a huge sadness when I had to make this decision to stop training at 17, but my mind and body just couldn’t keep fighting in a body that was completely failing me. No matter how much I pushed and pushed through the fatigue and pain, I just couldn’t do it anymore. I always said to myself that I mustn’t show I was in pain or completely drained, because if I wanted this career that is how I would be all the time anyway. This was different…
My bones felt like lead, my lungs felt heavy and I was slow and fatigued. The brain fog was so intense I could barely function. At this time I had just recovered from glandular fever and I thought the virus was just hanging around and I was just experiencing the repercussions. I now know that it was the work of the insidious rot called endometriosis. I’m grateful I had music and drama to fall back on as an art form, but even more so as a profound healing tool. I avoided doctors over the next years as I didn’t know how to navigate medical professionals who weren’t educated enough on the subject, and push for the treatment I needed. I had no idea what I needed - I hadn’t even heard of endometriosis and I knew at that stage, they hadn’t either.
I tried to sweep it under the rug and just get on with it.
I enrolled in a Musical Theatre course in Sydney to try and get back into dance and the arts. At first it was wonderful, my body seemed to be coping really well – even excelling! I was going to the gym most days after dance classes, feeling mostly well and strong. My condition deteriorated in the second half of the year, after I had a hefty fall down the stairs. I had herniated two discs in my lower back that were impinging my nerves that ran into my right leg, though I was desperate not to let another health issue stop me in my tracks. Combining the herniated discs with the endometriosis – once again it was extremely hard to keep going.
The endometriosis was flaring up – BIG TIME! The brain fog and my inability to move quickly were especially startling when I was trying to learn dance sequences. I left class feeling incredibly frustrated, stressed and embarrassed. I knew I wasn’t at my best, or even close to how I used to pick up and execute dance routines. In hindsight I am extremely proud of myself to have graduated; unknowingly I was in one of my worst phases with endometriosis.
Age 22, my body was telling me to stop and take care of myself… I finally listened.
I found myself a beautiful and empathetic doctor who was extremely thorough and introduced me to the idea of endometriosis. She ordered a trans-vaginal ultrasound to investigate further and ran many tests. She reassured me what I was experiencing wasn’t normal, and that we would get to the bottom of it. The results came in: The doctors didn’t find any deep, infiltrating endometriosis but they did find multiple endometrial polyps, and also two large ovarian cysts. My doctor didn’t rule out the possibility of having endometriosis, as most the time it will not show on an ultrasound. She referred me to a gynecologist who specialised in endometriosis, to assess if I should have laparoscopy surgery.
While I was waiting for an appointment with my gynecologist my doctor and I decided I should try the Mirena IUD, in an attempt to manage the symptoms. I had just moved in with my mum and was working at a retail store regularly. The first few weeks following the IUD insertion were agonising. I was experiencing hot flushes, dizziness and fatigue, with a very unusual and painful pulling sensation in my uterus. I was constantly bleeding black blood but I decided to keep going with it, my doctor had said it may take 6 to 12 months for it to settle into my body after all.
My body completely rejected it; I was in absolute agony at work and had to push through. Something didn’t feel right, so I booked in to see my doctor who ordered another trans-vaginal ultrasound to check if the Mirena IUD was in situ (correct placement). They found I had excessive, free-floating fluid in my pouch of Douglas, an area in your pelvis between the uterus and rectum, which indicated a burst ovarian cyst. I went to the hospital - the pain was out of this world intense!
Another trans-vaginal ultrasound at the hospital showed the 6cm ovarian cyst had burst. Desperate to feel some relief, I pleaded with the doctor to remove the Mirena IUD. They wouldn’t remove it, because I first had to go back to my doctor to make sure I did not have pelvic inflammatory disease or PDI before removal. Much Endone later - which had barely touched the pain I was discharged home, feeling annoyed and exhausted.
I kept the Mirena IUD and pushed through, but the pain wasn’t subsiding. I had started to bleed out decidual casts a few days later, which is a part of the lining of the uterus or the endometrium. It was shedding out of the vagina in one big, fleshy and bloody chunk. This was unlike anything I had seen before, extremely painful and seriously alarming. The agony associated with passing these decidual casts was like being stabbed in the uterus and vagina with a flaming hot rod, aggressively over and over.
I felt like I was ready to faint at any given moment, but at this point I was still working, still just pushing through. I thought it was just my body getting used to it, even though my intuition was telling me otherwise. The test for PID came back negative; I was incredibly excited to book an appointment with my doctor, eager to get this intrusive thing out of my body! The blessed day of removal came along and I instantaneously felt relief, both mentally and physically. Even though my experience with the Mirena IUD was dreadful, I have some close friends who say it works wonders for them. It’s important to note management for endometriosis is extremely personalised.
The first appointment with my fabulous gynaecologist and endometriosis specialist was a huge sigh of relief. She was understanding and calming, and reassured me the pain I was feeling wasn’t in my head. Hearing those words again from an empathetic specialist and doctor I felt empowered, but most importantly, safe and seen. Together we decided the best course of action was an investigative laparoscopy. This was to first confirm I had the disease, so we could then discuss what my options would be for management moving forward.
I went on the waiting list.
My partner and I moved to Melbourne just before the first wave of Covid19 hit. I was due to start a new exciting job opportunity which was to involve dance, creating work which made me incredibly happy. Lockdown went on and on over the year which saw my physical and mental health take a turn for the worst. I plummeted into a severe depression, and had episodes of panic attacks where my mind and body would completely shut down for a good two minutes. Completely unresponsive. I felt like a prisoner not only in my body but this time in my mind as well. My whole body hurt and my spine felt like it was trying to claw itself out of my body. I couldn’t think straight and was never really able to catch my breath. I felt like I constantly had a dark, freezing and wet blanket hanging over me that weighed a ton. The harder I tried to crawl out the deeper I fell in. It was the scariest and darkest time in my life, both physically and mentally.
I am incredibly lucky to have had a beautiful, supportive network. This was made up with my partner, family and good friends, all of whom I leaned on for healing. While waiting for a surgery date in Sydney I kept pushing myself to perform music, which I was trying to use as a distraction to keep going. My partner was there through it all, and he saw me deteriorate to an ember barely alight. He took it into his hands, and we decided to move back in with my mum while we pushed for a surgery date.
10th of March, 2021. I got a call for a surgery date.
The next months were tough, but we got through them. Mentally I was already feeling lighter, knowing I had a date locked in for surgery. Then the day of surgery came around...
It felt like I had been asleep for two minutes, though in reality I was under for almost two hours. After 11 years spent wondering was wrong with me, I woke up to my surgeon having answers. They told me they had found widespread endometriosis; it was on my left ovary, left pelvic side wall, left uterosacral, left ovarian fossa. It was also on my cul-de-sac, uterine isthmus, right para rectal, right uterosacral, right pelvic side wall and bladder. What's more, they found my liver and gallbladder are stuck together. Whether that is an adhesion from endometriosis or something else entirely is yet to be uncovered.
My period was due two days after surgery and my goodness did she make one hell of a noise! My specialist had suggested in my pre-operation appointment to try the Mirena IUD again, in an attempt to manage the endometriosis. I voiced to her how nervous I was to try it again, as I really wasn’t sure. She indicated that the Mirena IUD may have been irritating the endometrial polyps whilst I had it in place. As I had two procedures performed during surgery, which were a laparoscopy and a hysteroscopy, the polyps would have been removed and everything cleared out. For this reason I agreed to give it one more go.
I had heard the first period after surgery is the worst. I had prepared myself for this, but I had no idea what I was in for. With the surgery, the new Mirena IUD in place and my period arriving all at once my body was a bit of a ‘hot little mess’. The Mirena was giving me hell, the decidual casts were shedding out again and I was bleeding every day. I tried to push through and kept it in for two months but it was too much.
I was completely done with the Mirena IUD. The day I got it out was monumental; I felt instantaneous relief and was finally on the mend.
The next period I was back to vomiting, fainting, crazy sweating and extreme cramping.
My body started to heal and settled down in my next cycle. I was shocked at how little pain and how much energy I had. Both my partner and mum commented on how well I was looking - I was actually able to get out of bed and do things! I felt incredibly grateful and happy I had a surgeon who specialised in endometriosis otherwise perhaps I wouldn’t have had the same results. Surgery has worked wonders for my physical and mental health, as I no longer feel constantly sick and tired. Now I’m healing physically, spiritually and mentally. I still have pain and fatigue but it has significantly reduced since surgery. I’m still dealing with spouts of anxiety and depression in the days leading up to my period, which is suspected to be premenstrual dysphoria disorder, or PMDD.
PMDD is a severe form of PMS that includes physical and behavioral symptoms. These symptoms can be extreme sadness, feelings of hopelessness or feelings of irritability and anger. Common PMS symptoms also include breast tenderness and bloating, usually in the week or days leading up to menstruating. It’s usually resolved with the onset of menstruation. My quality of life is improving everyday as my body and mind continue to heal. I love my new scars on my belly from surgery, they remind me of the strength it took to get there and are a lot of the reason I am now able to feel well. There isn’t a cure for endometriosis just yet, and while it is chronic illness I’m hopeful for near full health in the future.
I know for many it has been a hard road with doctors. I have been blessed with my doctors in the later part of my health road, but it still took 11 years to get a diagnosis – that’s far too long! Why don’t doctors and society take endometriosis seriously? It’s time for more awareness and better treatment; this has impacted every aspect of my life.
Through these tough times I’ve come to know that when our health is asking us to listen, we must. We spend our whole lives inside our mind and body. We must take care of them. If we don’t, eventually they will force us.
Doctors must listen.
Family must listen.
Close friends must listen.
The world must listen.
When we decide to take our health seriously, it becomes apparent that there is nothing more important. Not that deadline, not that last song in a set and certainly not that point you are trying to prove either to yourself or others. The days of pushing through to the detriment of our health should be over, health comes first. Have a rest and THEN keep going - it does get better!
Take care of yourself and feel empowered in doing so.
Love from,
One tired Endowarrior on the continuous path to find healing.
This blog does not constitute medical advice and is a personal story by someone living with pelvic pain conditions. The medications, supplements, health providers mentioned in this blog are not endorsed by QENDO nor does QENDO receive financial incentive for these products or by the medical professionals mentioned. Please consult with your health care team before considering taking any supplement, medication or treatment pathway.
The materials available on or through the website qendo.org.au [‘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.org.au. 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.
