The “Endo” agony

Photo Molly Jones.
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"There is only so much pain somebody can take." Molly Jones reports on the ongoing ordeal for women living with Endometriosis.

Endometriosis is a medical condition where tissue that normally lines the inside of the uterus grows on the outside and generally involves the ovaries, bowel or the tissue lining the pelvis.

One in 10 women have Endometriosis. That’s a powerful statistic so it comes as quite a surprise that so many women haven’t heard of the chronic illness affecting so many lives.

Women often spend years searching for a diagnosis and getting sent from doctor to doctor with no results, perhaps from a general lack of awareness or the existing social stigma surrounding reproductive health concerns and menstruation.

Twenty-two-year-old Shelley Ficior and her family suspected she had the condition at 14 but it wasn’t until undergoing a laparoscopy (keyhole surgery used to examine or operate on the interior of the abdominal or pelvic cavities) at 18 to remove her perforated IUD that she was conclusively diagnosed with the condition.

“During my post op appointment I was informed I had stage two Endometriosis. A year-and-a-half later I was having another surgery due to my pain levels worsening. The surgery found my Endo had progressed from stage two to stage four.”

Shelley’s bowel and left fallopian tube were covered in adhesions and strangling each other.

A common symptom of Endo is experiencing heavy and painful periods. The pain Shelley would experience during the week of her cycle would result in her bed-ridden and “sweating and shaking” from the pain. At 14, she said she was “going through a maternity pad every two hours”.

Shelley lives in constant pain, extreme fatigue and says the pain never really ends.

“In all honestly, it has ruined my life. I was an outgoing person who always wanted to leave the house and see friends. Now, I plan my life around whether certain events will cause me pain. More often than not, I’m cancelling plans due to being in pain and my social life is almost non-existent.”

Dealing with this chronic disease has also caused Shelly to struggle with depression and anxiety over what her future may hold.

“So far my pain has only been increasing as I’ve gotten older. Endometriosis has made me so depressed and I’m often wondering what quality of life I will have in the future, as I feel I don’t really have one now. Sadly, I also don’t believe I’ll have one in the future either. As happy as I try to be, this disease has taken away my hope of having a kid one day, being pain free and working as a nurse.”

While the cause and symptoms of Endometriosis are known, there is no set cure. Dr Rangi De Silva who specialises in obstetrics and gynaecology says, “one main theory is that the endometrial cells make their way to the pelvis through the fallopian tubes when you menstruate, instead of just going through the cervix to cause a period. We also know that women with a mother or sister with Endometriosis are more likely to get it.”

Although there is no cure, Dr Rangi says symptoms can be managed through medications or surgery and that Endometriosis generally goes away after menopause, this varies for each individual.

“The main symptom is pain. Most commonly, this pain is worse during your period or may only occur with your period. The pain may also occur when you ovulate, have intercourse, when you urinate or when you open your bowels, depending on the location and severity of your Endometriosis. For many women, the first thing they notice is worsening pain with periods.”

Dr Rangi says Endometriosis can also make it difficult for women to fall pregnant and it is common for women to only be diagnosed when they start trying to conceive.

Shelley though, is still trying to find a medication or some form of therapy to get her by. She says she has tried multiple medications in addition to regularly attending appointments with a pain specialist.

“If nothing is getting better by 26 I’m most likely considering getting a total hysterectomy. I know people like to rub in that a hysterectomy isn’t a cure, but I would like to have my pain be at least a two out of ten for once. There’s only so much pain one person can take. Plus, I most likely won’t be able to have kids anyway so why should I suffer for a what if?”

With pain the primary symptom, most women tend to think they’re just experiencing a very painful period and thus go misdiagnosed. Dr Rangi says a thorough history, examination and ultrasound can help with the diagnosis.

“The only way to know for sure if you have Endometriosis is to undergo a laparoscopy. That doesn’t necessarily mean that every woman with Endometriosis needs surgery. There are many women who can have their Endometriosis effectively managed with medications if they or their doctor suspects they have Endometriosis.”

Twenty-one-year-old Bree Laws was recently diagnosed with Endometriosis, but had been dealing with the pain for over a year.

“I feel like I could have been diagnosed much sooner but I always felt so uncomfortable and almost embarrassed to talk to a complete stranger about what I was experiencing.”

Bree says her Endo causes her random bursts of “intense sharp pain” which often stops her going about her daily life.

“All of a sudden I’m paralysed by these pains not only in my pelvic region but also in my buttock region, I just have to stay completely still and wait for the pain to pass. My least favourite symptom is that when I have my period it’s extremely painful for me to open my bowels. Sometimes I just can’t bare the pain and I don’t go to the toilet, it’s like as soon as I start to relax my muscles I’m struck by this severe unbearable pain.”

The pain Bree experiences is unpredictable and during her monthly cycle, she often doesn’t leave her house unless it is for work. Bree says she is currently trialling different ways to manage her symptoms and is hopeful she won’t have to undergo surgery.

“My doctor has suggested a couple of things that for me to try; the first is going on the pill and skipping my period each month because essentially not having my period would sort of be putting the Endometriosis on pause, the second is having the marina inserted, this would be more convenient than the pill as it lasts about five years and I wouldn’t have to remember to take a little pill at the same time every day.”

Bree has always wanted to be a mum and the possibility of her Endometriosis making it hard for her to conceive has been a hard thought to process. However, Bree still manages to keep a positive attitude despite her struggles.

“I’m just going to do whatever I can right now to minimise the risk for future complications and then deal with whatever is going on at the time when I am ready for kids.”

For women who think they may be experiencing symptoms of Endometriosis or are yet to be diagnosed, Shelley says “You need to be your own advocate”.

“It takes on average 10-15 years to get diagnosed from symptoms. If one doctor pushes you away, go to another. Do what is best for you. Also remember that Endometriosis affects everyone differently, don’t let people tell you what you feel. The first doctor I saw told me it would be a harmless disease and nothing to worry about. This was the biggest lie. Listen to your gut.”