Lyn’s Story with Endometriosis, Fibromyalgia, and a Bleeding Disorder

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A comorbidity nightmare with endometriosis, a bleeding disorder and fibromyalgia.

“At 24, I had my first keyhole surgery to remove endometrial lesions on both my ovaries”

lady suffering endometriosis pain on the sofa

During my early 20’s, when my supposedly ‘normal’ menstrual symptoms became incredibly unbearable with numerous hospital admissions, my general practitioner decided to keep a log of all the symptoms I was experiencing.

Little did I know, there was more sinister things happening during my menstrual cycles. I had very abnormal uterine bleeding, commonly known as menorrhagia. I would spend weeks hunched up in bed with excruciating pain in my lower abdomen and back with extreme fatigue. I was bleeding so heavily that I would often become anemic and vomited just from the immense pain and discomfort.

After repeated hospital admissions, I was then referred to see a gynaecologist where she first mentioned to me that all my symptoms could be more than just ‘period problems’ and that it may be endometriosis – a condition that effects 1 in 10 women.

The first surgery

At 24, I had my first keyhole surgery to remove endometrial lesions on both my ovaries.

Back in 1999, at just 24 years of age, I had my first keyhole surgery, also known as a laparoscopy, where surgeons found endometrial lesions on both my ovaries. Thankfully they were small and the surgeons were able to remove most of it. Waking up from the general anaesthetic, I was told I had a condition called endometriosis. She then said,”you’ll be fine now” and “shouldn’t have anymore problems”.

I was then put onto the contraceptive pill to reduce my menstrual symptoms and keep my endometriosis ‘under control’. At the time, I wasn’t made aware that I needed follow ups and the chances of recurrence was a possibility.

My recovery took a little longer than most women with endometriosis as I encountered severe bleeding and abdominal pain after what should have been a simple surgery. My gynaecologist wasn’t too sure of the reason behind my unusual bleeding but reassured me everything would be fine. After a few more weeks, I went back to life running my family business with relatively less severe symptoms and thinking I was ‘fixed’.

That was until I got off the pill (due to the side effects) and my symptoms returned again. My GP simply recommended that I go back on the pill and take pain medications to manage my pain and heavy bleeding.

My baby and discovering I had a bleeding disorder

At 28, I had my first baby and discovered a rare bleeding disorder that turned our life upside down.

Four years later, I gave birth to a beautiful boy, but life took a complete nose dive. My newborn son suffered a massive bleed on the brain during extraction, that left him in critical condition fighting for his life. After 2 weeks in NICU, he was diagnosed with a rare life-threatening bleeding disorder, Severe Haemophilia A (Factor VIII deficiency).

Unbeknownst to me at the time of pregnancy, I was actually a symptomatic carrier of haemophilia A. This meant that I carried the faulty gene and passed it down to my son. This birth ordeal then shone light on my excessive bleeding history, which explains why the symptoms of my endometriosis bleeding was so severe.

Subsequently, I was diagnosed as a ‘carrier’ to Factor VIII deficiency, but it was strange that I was not referred to see an adult haematologist nor prescribed any treatment to manage and control my bleeding symptoms. I went onto focusing on caring for my son instead of looking after myself.

For 13 years, my symptoms kept coming back and forth, but during this time, I was too preoccupied with my son’s bleeding disorder and his frequent hospital admissions, that I just ignored my own pain. It wasn’t until I landed back in hospital with unbearable pain all over my body that I decided to finally get seen by a doctor. Frustratingly, I was bouncing to and from various specialists as they couldn’t pinpoint what was wrong with me. It was a constant guessing game, from possibilities of multiple sclerosis (MS), lupus, lymes disease, to chronic fatigue syndrome (CFS) and many others. Shockingly, not one single doctor asked me about my endometriosis, and when I did suggest it, they dismissed it!

At 42 I became a comorbid patient

a diagram explaining fibromyalgia

By 2017, my rheumatologist eventually diagnosed me with fibromyalgia. Since the various specialist had little knowledge about my endometriosis, nor followed it up, I thought to myself, “OMG! I have another chronic disorder to manage!”. Once again, I went back on the pill and pain medications. I wasn’t able to take non-steroidal anti-inflammatory drugs (NSAIDs) as it interferes with my bleeding disorder, so I started drinking apple cider vinegar instead to help with the inflammation.

It wasn’t until late 2018 that I had my gynecology review, for a separate issue, that I mentioned the return of my severe pelvic pain, heavy bleeding, and that I had a history of endometriosis, to which she suggested my endometriosis may have regressed. I immediately had ultrasounds done but unfortunately the only way to have a clearer picture of new endometrial lesions was another key-hole surgery. She prescribed me on a different contraceptive pill, along with tranexamic acid to finally control my bleeding (due to my haemophilia status) and asked me to keep monitoring my symptoms until the next menstrual cycle, to then decide if we should go ahead with another laparoscopy.

Fast forward to 2019, I'm in bed in tears

a diagram explaning endometriosis

It’s now 2019, and I am now laying in bed in tears. It’s been almost two straight weeks where my body has succumbed to the relentless pain I experienced two decades ago. The pain in my pelvis radiates down to my lower back, calf and ankle joints. It’s frustrating to find myself in agony trying to get up and go about doing what I love without feeling like I’ve been hit by a car. I have now been prescribed tramadol for around-the-clock treatment of my pain, and ‘sleeping through it’, hoping I can treat my endometriosis without further surgery.

So here I am, March 14th 2019, coping through the pain whilst I write this blog as my contribution to Endometriosis Awareness Month. Whilst reading through countless articles shared by many other women with endometriosis, I learnt that once you have been diagnosed and treated with endometriosis, it doesn’t just go away. “It is a progressive disease, with periods of regression”.

What frightens me most is that I never knew I needed follow up reviews and surgery every two years to manage my endometriosis. It scares me to wonder what damage has been done inside my body without the proper treatment and care during the last 20 years!

Another interesting fact I have learnt is that comorbidities are very common in women with endometriosis. I suffer from fibromyalgia, chronic fatigue syndrome, depression, anxiety, and mild haemophilia, all of which have overlapping symptoms of endometriosis.

This is what Endometriosis looks like

Here’s a look at what Endometriosis can look like on the outside and this is just women who’ve had keyhole surgery. Others have had larger incisions across their body. Imagine how it affects you internally? It certainly can impact you not just physically, but mentally and emotionally too. This is why we need to CURE endometriosis

Read about Jessica Panetta’s story that was written about by the ABC here

Jessica Panetta keyhole surgery to treat endo
Photo from www.abc.net.au

Success through trials and tribulations

Despite my multiple chronic disorders, I have cared for and raised a brilliant son who has conquered countless adversities living with haemophilia and autism, whilst actively advocating and representing families with disorders my son and I live with.

In 2014, I created my community group The RED Trail, where I host regular Social MeetUps and events to bring families together for social connection and support whilst also raising much needed awareness and funds for our chronic disorder community. By 2016, we raised over $23,000 to help families.

Living with endometriosis, haemophilia and fibromyalgia has been a bit of a nightmare, but I work through my good and bad days, determined to not allow my various chronic disorders to define who I am nor prevent me from what I can achieve. I take breaks when my body needs it, and have learnt to delegate different roles to family members, friends, families and community groups.

I am proud of the goals that I have accomplished and hope to conquer my comorbidities by connecting with women that understand my challenges. I hope by telling my story, it will help others experiencing a similar journey to #NeverGiveUp.

Treatment for women

Here is further information and reading in regards to treatment of bleeding for symptomatic carriers and women with haemophilia

A formal apology from the Government

Federal Health Minister Greg Hunt had issued a formal national apology for not helping women with endometriosis sooner and announced a research grant of $160,000 for the National Health and Medical Research Council – read the article here

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