Endometriosis: The silent attack on women (misdiagnosis and treatment in Ireland)

endometriosis

Endometriosis is a painful disorder in which the tissue that lines your uterus grows outside of your uterus. It involves your uterus, fallopian tubes, and the tissue lining your pelvis and rarely spreads beyond your pelvic organs. The reason this disorder is so painful is that the tissue acts in the same way as the one in your uterus does. It thickens, breaks down, and bleeds with each menstrual cycle. This tissue has no way to exit your body though, so it becomes trapped. If you have it on your ovaries this allows cysts- called endometriomas – to form. Like a domino effect, the surrounding tissue can become irritated by this which will lead to scar tissue and adhesions. It can also cause organs to stick to one another, which is another extremely painful side effect of this disorder.

The main symptoms of this disorder are pelvic pain that is far worse than the usual menstrual cramping you would experience. You may also experience bloating, nausea, and fatigue, especially during your period. These symptoms all seem to be what the average woman goes through each month with their period, so how would you know if you have this? The best way to know if you have this is if over time the pain continues to grow instead of getting better. Remember this is a disorder that is commonly misdiagnosed by doctors so it will be difficult to know if you have it. Unfortunately, the best way to know if you have this is the extended pain you go through several days before your period begins that lasts a few days into your period.

A reason there is so little awareness of this disorder is that a lot of people – that don’t have it – just put it down to the cramping you get with your period. The pain from endometriosis can be crippling, with some women even being admitted into the hospital because of it. It can affect your ability to work, sexual relations, performing everyday tasks, and even going to the bathroom can be excruciating.

Misdiagnosis

In Ireland alone, one in ten women are living with this. The average wait to be diagnosed with endometriosis is nine years, with many being misdiagnosed over and over. Getting the correct diagnosis and treatment is so difficult in Ireland that women travel as far as Romania for treatment. The main reason women are going to different countries is that the waiting list in Ireland is two to three years before you are treated, which is a long time to be suffering from such crippling pain.

I spoke to one woman who has the disorder and she told me that the pain is that bad that it would travel down her legs and she would be left unable to walk for some time. She had two surgeries to for it where her ovaries were stuck to her womb and even after the operation they didn’t want to acknowledge she had the disorder. One doctor even told her she might have cancer instead of endometriosis. Currently, this woman is still waiting for the official diagnosis and the only information she has about this disease is what she has researched herself.

Mental Health

While talking to this woman she explained to me that her mental health took a sharp decline as every time she was treated at the hospital they made her feel like she was a liar and that it was just bad period pain she had. It is interesting to note that the doctors that treated her the worst or were condescending towards her were men in the profession. The women seemed to have a bit more sympathy but still did not understand the disorder. It got so bad at one point that she just broke down because they refused to believe she was in pain. Endometriosis takes so long to diagnose that it becomes mental torture that you cannot get away from.

There are no specialist doctors in Ireland and because of that, a common disorder becomes difficult to diagnose. The pain from this can leave you awake all night and with women still trying to live a normal life with this, the lack of sleep can affect your mental health.

Treatment

The main treatment for this disease is laparoscopy – keyhole surgery – which removes all the cells from the uterus and wherever else the tissue is. One woman was told by the doctors that the only way to get rid of the pain for good would be a hysterectomy. That is a tough choice for any woman to have to make but this woman decided to have one. When she inquired about it they refused her, stating that as she was only in her 30’s. They refused because she was too young for one and told her that the best she can do is live with the pain until she gets to an acceptable age for one.

It was shocking to hear something like this as with repeal the 8th and the seeming win for women when that passed, it looks like very little has changed as a doctor is telling this woman, who is living with severe pain day in and day out, that he will not sign off on a hysterectomy because she might regret it? This is a woman in her 30’s and has a right to make decisions on her body, yet she is being met with a refusal. She is currently still fighting for one as endometriosis is affecting her whole life at this point as the flare-ups are so bad they leave her bedridden for days.

There is very little awareness of endometriosis, even with so many women suffering daily with it. The only way to bring more awareness to this is to listen to the countless amount of women that suffer with it. Click here to support endometriosis and read further about the disorder. 

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Katie Boland

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