A few weeks ago I read a Daily Life column by Jane Caro in which she discusses the value of “speaking out” about things that matter. She wrote, “Silence keeps things as they are. It is only by speaking out that things change.” How true this statement is. And how imperative that we put it into practice, even if doing so makes us feel vulnerable and exposed. If something is important, we need to discuss it. With this in mind, I have written this article in the hope that it will increase awareness and help women in the same situation.
I was recently diagnosed with Endometriosis, a chronic condition that affects a woman’s reproductive organs. Tissue that resembles the lining of the uterus actually grows outside the uterus where it’s not meant to be. These painful lesions can be found growing on the uterus itself, as well as on the ovaries, fallopian tubes, bladder, and bowel, among other places. In his book, Stop Endometriosis and Pelvic Pain, Dr. Andrew Cook writes, “having Endometriosis is like having tens or hundreds of excruciatingly painful blisters or bee stings covering the inside of your pelvis.”
In addition to the debilitating effect it can have on a sufferer’s daily life, Endometriosis is one of the leading causes of infertility. Although it is a very common disease (one in ten women have it), it still takes an average of between seven and ten years(!) from the start of symptoms to the time a correct diagnosis is given. Seven to ten years of women visiting countless doctors, searching for an answer to why they feel unwell.
It took me eight years and 25 different doctors, spanning the entire spectrum of both conventional and natural medicine. At no time did any of these 25 people suggest Endometriosis as a possibility.
Even when I suggested it, I was dismissed, often made to believe it was all in my head. Eventually, I did my own research and went to see a specialist who immediately booked me in for surgery.
I know from the many stories I have read that there are a devastatingly large number of women having this same experience.
How can it be that 180 million women worldwide have this disease and yet it takes this long to be diagnosed?
I suspect it is due to a lack of knowledge on behalf of practitioners. I suspect it is also because women choose to keep their experience private. They do so, not only because health is intrinsically personal, but because they fear they will appear weak or dramatic if they discuss it. After all, if the many doctors you are seeing are not taking you seriously, why would anyone else? The disease is also very up and down: on good days you can feel almost normal. This adds confusion to an already ‘mystery’ illness, making life with undiagnosed Endometriosis an isolating place to be.
It is also important to note that Endometriosis gets worse the longer it goes untreated.
For me, the first six years saw lots of good days, and on the bad days I learnt how to manage it so the impact on my life was lessened. During the last two years however, the disease became increasingly debilitating. I was forced to give up work and spent most of my time at home.
This is why finding Endometriosis early is so important. This is only achievable if more women speak out and insist on better care.
I am in no way encouraging self-diagnosis but if you are female and are struggling with your health, perhaps look into Endometriosis. Everyone’s experience of it is individual: there are varying degrees of severity, and symptoms differ greatly. As Dr. Valeria Lanzarone says, “there is no mould to women with Endometriosis.”
Common symptoms are pelvic pain and painful periods. For some women, this pain is so excruciating it sees them bedridden or even hospitalised. It is however a myth that you need to experience these types of pain in order to have Endometriosis. This is another reason why it takes so long to be diagnosed, as practitioners have a narrow-minded view of what Endometriosis entails.
Symptoms can include:
- Chronic Fatigue
- Chronic digestive issues/ ‘Irritable Bowel Syndrome’
- Bladder problems (urgency, pain)
- Pain at any time (lower back, leg/sciatica, during sex etc.)
- Irregular & abnormal bleeding/periods
Also noteworthy is Polycystic Ovaries/PCOS. While not considered a ‘symptom’, the two can go hand in hand. I was told by my doctor at my first appointment that having Polycystic Ovaries meant I was more likely to also have Endometriosis. Strangely, as Endometriosis Australia attests,
there is no connection between the amount of disease and the severity of symptoms. This means that you can have a small amount of disease and very significant symptoms or a large amount of disease and no symptoms.
The women with no symptoms usually only realise something is wrong when they are unable to conceive.
In most cases, the only way to diagnose Endometriosis is by laparoscopic surgery. While the cause of the disease is still unknown, there is strong evidence of a genetic link. Also, despite myths to the contrary (about pregnancy and Hysterectomy), there is currently no cure, i.e. it can grow back once removed.
Treatment of Endometriosis will differ from person to person. As Dr. Erin Nesbitt-Hawes says, “some treatments may be effective for some women and not effective for other women.” Generally speaking, surgery is considered the best chance of relieving symptoms and slowing regrowth of the disease. The method used during surgery is important though. The excisional (cutting) technique is believed by many to be more effective than the method of ablation (burning). I saw Professor Alan Lam in St Leonards who was fantastic.
Endometriosis is known as the ‘silent disease’. It is not visible to others, and more importantly, women do not talk about it. It is a situation that desperately needs to change. As longtime sufferer Susan Sarandon says, “we’re taught to just put up with these things, that this is part of being a woman. This isn’t part of being a woman. Something can be done.”
Words by Isabel Pretty