If you suffer from it, you will understand the trials, tribulations, fear, anticipation, preparation, exhaustion, shame, discomfit, helplessness and trauma.
Endometriosis is in one word, is awful.
So many girls and women suffer in silence pleading someone will understand, a surgery will help or a cure will be found.
I have struggled since I was 11, knowing something was different from my friends and the ‘what you will experience’ during a period that is explained in woman’s magazines. It has run in my family for 2 previous generations, undiagnosed and untreated. What I experienced was quite the opposite from what everyone else I knew was going through. I went to countless doctors for the anemia, migraines, back pain, extreme bloating, IBS and debilitating clotting that went along with the usual endo symptoms. The attitude was very much “take some paracetamol, you’ll grow out of it”. I never did. I dreaded that fearful, painful, embarrassing 7-8 days of the month.
What causes Endometriosis?
The cause of endometriosis is not fully understood though there are several strong theories. Intensive and extensive research around genetics, immunological and environmental factors continue and further research exploring a range of potential causes and contributing factors is being investigated. The cause is now generally considered multi-factorial with a strong genetic link, possibly also how genetics behave with other influences (perhaps by environmental factors for example).
In the 1930s Sampson found that endometriosis was caused by retrograde menstruation or reflux menstruation or period blood back flowing through the fallopian tubes and ‘spilling’ into the pelvic cavity. Some gynaecologists still say this causes endometriosis, though there are now more questions than answers with this theory. Most women have some reflux menstruation with their period, but not all women have endometriosis. [cite]
Endometriosis has elements of a pain syndrome often referred to as central neurological sensitisation. There can be an overlap with other conditions characterised by pelvic pain and infertility and irritable bowel syndrome.
Endometriosis seems to run in families, so you are more likely to have it if there is a family history. It is important to remember not everyone who has had symptoms will have been diagnosed, but they may have experienced the symptoms.
Common Signs and Symptoms
- Pain with periods (dysmenorrhea)
- Excessive and abnormal menstrual bleeding
- Heaving clotting
- Bowel problems like pain with bowel movements
- Painful intercourse (dyspareunia)
- Sub-fertility or infertility
- Exhaustion and low energy
- Pain in other places such as the lower back
- Pain at other times eg. With ovulation or intermittently throughout the month
- Premenstrual syndrome (PMS)
- Bladder troubles eg. Interstitial cystitis
- Above combined with gastrointestinal problems eg. bloating, diarrhoea, constipation, painful wind
Is it stabbing, burning, dull or sharp? How long do you have pain for; hours, days, weeks?
Pain is a very subjective matter and when doctors see a physically fit and somewhat ‘healthy looking’ teenager or young woman, they often turn you away and tell you to get ‘tougher’.
So, I suffered in silence, minimising and repressing my struggles for ¾ weeks of the month.
The pain scale chart of 1-10 a specialist will ask you, leaves you with little options. Over the counter medicine, contraceptive pills, stronger prescriptive pain killers, implantations to try and stop the bleeding and surgery. It’s usually the fear and anticipation that goes along with the pain that is the worse for one’s mental health. Pain can seriously damage your mental health and wanting to stop the pain permanently can come to mind after years of suffering.
Stress, anxiety and guilt can make pain worse. People cope with chronic or persistent pain differently as our emotional state influences our physical health.
When you are not able to do the things that previously brought you joy, you understandably grieve that loss. You may be able to address these difficulties on your own or with the help of those closest to you.
However, there are times when it’s best to get professional help to get things back on track, particularly when you consider you may have struggled with symptoms for a very long time. It is often difficult, even after successful surgery, to overcome the cycle of un-wellness without help. (nzendo.org.nz)
Endometriosis was first mentioned to me when I turned 20, I struggled since I was 11. I had prior knowledge of this but never thought I could have it, as no doctor has ever mentioned it to me. Knowing that exploratory laparoscopy surgery is the only route for confirmation and ‘help’, this doesn’t exactly sound the most appealing scenario to a teenager or young woman. A few years of alternative medicine later, I decided surgery was the only option.
Diagnosis of Endometriosis
A doctor may suspect you have endometriosis based on your medical history and symptoms. A physical examination is often performed and scans, blood tests and other investigations may be recommended. These tests do not diagnose endometriosis but can be useful in determining treatment and next steps.
Endometriosis can only be definitely diagnosed by viewing the pelvic cavity at laparoscopy (key hole surgery). This is done in hospital under general anaesthetic and is best performed by a gynaecologist with expertise in treating endometriosis. The endometriosis should be removed (excised or resected) and is sent to the lab for confirmation (histology).
Internationally, there is a diagnostic delay of 8+ years from first presentation of symptoms to a doctor with diagnosis.
Endometriosis can occur from a girls first menstrual period.
Early intervention is vital to improve quality of life, halt the progression of the disease and ensure fertility is not compromised.
Unfortunately, millions of women from generations past and still today may have suffered a whole lifetime but never have had a diagnosis or suitable treatment and the effects sometimes continue beyond the menopause. There are long waiting lists for the public system, that have been pushed back further and further because of Covid19 and lockdowns. Laparoscopy for endometriosis removal is deemed an ‘elective surgery’ and is pushed down the list of priorities during lockdowns.
There is also the dichotomy that many women have endo without having any symptoms, not knowing they even have it. While others may be Minimal or Stage 1 and have debilitating symptoms.
Why is There a Delay in Diagnosis?
When Girls and Women
- Think their symptoms are normal
- Feel too embarrassed to seek help
- Delay seeking doctors’ advice
- Encounter barriers accessing the services they need
- Don’t recognise symptoms as probably being endometriosis
- Think girls are too young to have the condition
- Delay referral to a specialist gynaecologist
- Prescribe hormonal therapy such as the oral contraceptive pill without discussing the likelihood of endometriosis being the cause (a Band-Aid)
- Misdiagnose the condition as something else, like Irritable Bowel Syndrome (IBS), appendicitis, Pelvic Inflammatory Disease (PID), primary dysmenorrhea (painful periods) or a sexually transmitted infection (STI)
- Think girls are too young to have endometriosis
- Choose not to proceed with laparoscopic review
- Miss identifying endometriosis
- Tell you to ‘suck it up’, ‘get over it’, ‘it’s just women’s troubles’ and so on
Hard to Diagnose
Surgery is the only true diagnosis of endometriosis. A specialist might send you for an ultrasound and MRI scans, but these can only show so much. Endometriosis cells are minuscule and hardly show up on these scans, often showing nothing unless there may be larger growths.
In 2002, an ultrasound confirmed a cyst attached to my left ovary, 6cm in diameter. Surgery was now the only option. I remember the surgeon told me that it’s a fairly quick procedure and that they’ll have a look around with the camera and take out any endo IF there is any - I could be out in 30mins to an hour. This is where the ‘subjective’ phrase is enabled. You are only diagnosed on your symptoms pre-surgery and if you dampen them down, the surgeon’s make you feel as if the surgery will be quick and breezy.
… 5 hours later I was wheeled into the recovery room. The next day, when the surgeon was reading out their surgical notes, they sounded much more concerned that they did previously. The cyst results came back as benign; however, the endo was another story. It was everywhere, entwined itself “like a sticky web” all over my organs and beyond, along with adenomyosis. Everything was removed that the surgeon possibly could. Surgery involves delicate, intricate work to remove the endo without causing any harm to where it’s ‘stuck’ to, such as the pelvic wall.
Adenomyosis is found in the muscle wall of the uterus. It occurs when the inside lining of the uterus (endometrium) shows within the muscular wall of the uterus.
There are four stages of endometriosis, set on a scale from 1-4.
Minimal or Stage 1
Typically, small patches, surface lesions or inflammation on or around organs in the pelvic cavity.
Mild or Stage 2
More extensive than stage 1 but infiltration of pelvic organs still very limited, without a great deal of scarring or adhesions.
Moderate or Stage 3
Sometimes more widespread and starting to infiltrate pelvic organs, peritoneum (pelvic side walls) or other structure. Sometimes there is also scarring and adhesions.
Severe or Stage 4
Infiltrative and effecting many pelvic organs and ovaries, often with distortion of the anatomy and adhesions.
Unfortunately, there is no cure for endometriosis. ‘Managing’ the symptoms and removing the endo lesions are the only options. Such little control of the disease can leave the endo to grow back.
Which mine did. October 2012 was the date of my first surgery and February 2019 was my second. Within the period, I went was feeling my best ever around 2015, to my worse ever in 2018. How and why, it grew back, I’ll never know. Whether it was lifestyle changes, stress or my body is just equip that way, there will never be an answer. I went back to see my gynaecologist after my symptoms were becoming excruciatingly bad. I was sent back for an ultrasound, where another cyst was found in the same place previously, my left ovary. A “quick surgery” was suggested to “have a look around” to see if any endo had grown back. I took some time to process this information as I wasn’t expecting a growth to occur that fast.
My cousin happens to be a highly regarded specialist in Melbourne and during a holiday in 2018 she organised for me to have an MRI scan at a radiology of her choice. The results weren’t great. My left fallopian tube was wrapped around the cyst and was pulled down and attached to my colon along with adhesions. My gynaecologist’s suggestion back home was a hysterectomy if it was “too difficult” to remove the cyst. At 29, that is not exactly something a woman wants to hear. I sought other opinions and they were all similar and I would actually have to sign something pre-surgery for my consent.
Adhesions are bands of fibrous scar tissue (sometimes they look like rubber bands and or cobwebs) which cause internal organs or tissue to stick together. For example, the ovary to the pelvic side wall. They most commonly present as a result of inflammation or surgery. Some adhesions are congenital (present from birth). They are often seen with endometriosis. Adhesions are normally removed during surgery and precautions taken to prevent development. (nzendo.org.nz)
This procedure removes the uterus and is sometimes considered in severe cases of long-standing painful and extensive endometriosis and or adenomyosis.
While the symptoms of endometriosis are often eliminated or helped by hysterectomy, it does not ‘cure’ endometriosis. The decision to proceed with hysterectomy will be dependent on many factors such as your age, fertility and daily function. (nzendo.org.nz)
Back to the drawing board my cousin organised a consult with a highly regarded gynaecologist in Melbourne. Feeling quite depressed at this point, I numbly had an overnight trip to see what he had to say. He told me he was “up for the challenge and would save everything he possibly can”. Although feeling like a guinea pig, I agreed to the surgery.
Before the surgery I had this feeling of, “what if I had gone to all this trouble flying overseas to have a surgery, if it’s going to be insignificant and quick”. It wasn’t. I remember waking in the recovery room around 11pm at night, knowing it was over 8.5 hours long.
The next day the surgeon came to see me and described my pelvis as “spaghetti” and “that it was one of the most difficult surgeries he had performed”. I’ll spare the details, but recovery was long and almost everything was saved.
Recovery, Disruptors and Scars
During the follow up Doctor’s appointment a week after surgery, I mentioned I had no feeling in my right thigh. I couldn’t feel anything when I touched it and a very dull sensation when something very hot or cold was placed on it. The surgeon very nonchalantly said, “Ohh we must’ve knicked a nerve during the procedure, you’ll get the feeling back in 1 year.” It was 1 year and 2 weeks to the date I received the feeling back in my right thigh. About a hand span width, from my hip to my knee, there was nothing.
Not to mention I couldn’t pass any movement without some much-needed prescribed medicine. As there was a lot of work to delicately remove my fallopian tube from my bowel. It was if my bowel has turned itself off post-surgery.
When recovering, I learnt about endocrine disruptors and xenoestrogens with a sense of indignation and determination to inform as many people as I could. I don’t know why it took 20+ years, 2 surgeries, countless gynaecologists, doctors and alternative practitioners to NEVER mention this to me. In 2019, endocrine disruptors were mentioned on the 3rd page of google in a scholarly article that the average person who would peruse right by.
I know endocrine disruptors didn’t cause my endometriosis, however, I have no doubt it contributed to the symptoms. I’m definitely one to use layers and layers of products and try everything on the market. When I learnt about endocrine disruptors and that they reside in a significant amount of beauty products found in cosmetics store, department store and chemist shelves and everyday products that we all use, I wrote a list of the top 10 toxic ingredients and went to my bathroom cabinet to throw out anything that was ‘toxic’… I was only left with three products. I threw out 53 products from leading brands that I used every day top to toe. This was a very sobering moment.
Luckily the conversation has started around clean beauty and more and more customers are becoming informed by doing their own research.
Tronque was created to help as many people as possible with an ethos to enjoy a luxurious, benefiting experience, without ever having to ask yourself ‘is this harming me?’.
The Scar Concentrate was created for the scars that are battle wounds. What looked like 5 fresh stab wounds around my stomach, 9 in total, made me hang my head in shame. Formulating and experimenting in my kitchen while recovering, I was The Scar Concentrate’s own ‘lab bunny’. Formulating with face grade ingredients and the strongest concentrations, I didn’t stop until I found a solution.
When it comes to scars, nothing should be compromised and only the best should be used. Not long afterwards, my scars were erased and only the faintest lines are left, which gives me hope and faith that other’s scars, whatever they may be, will be erased too and only a memory is left.