Fertility, Wellness
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Buzzword bingo; what is ‘endo’ and why should you care

Yep, it’s time to play buzzword bingo, and ‘endo’ is the word of the day!

Before we get down to business I want to let you know upfront that this post gets a little serious and personal. It’s also quite long and includes some gory details about girl stuff. If that’s not your thing I suggest you read one of my lighter posts.

Here is a nice one about a holiday to Tasmania.

If you haven’t heard or read the term ‘endometriosis’ (or endo) before, my guess is you’ve been living under a rock. Endo is a disease that affects roughly one in ten women and it appears to be a bit of a hot topic at the moment – hence the buzzword bingo reference (or maybe it’s just the circles I roll in…).

Despite having heard of it, unless you actually have a valid reason to know more, most don’t have clue as to what endo really is. I’m about to help you solve the mystery.

Women’s health and fertility expert Nat Kringoudis explains it best:

“Endometriosis occurs when cells that belong in the uterus make their way into other areas of the body uninvited – typically outside (but nearby) the uterus. Each month when women menstruate, our uterine lining easily makes its way out through the cervix and vagina.

“But here’s the thing, those same cells that have migrated outside of the uterine cavity want to do the same, the only difference being, they don’t necessarily have an easy exit and as a result terrible pain and cramping is common. This can over time, lead to scarring linked to fertility issues.”

Sounds icky hey.

So why is it a hot topic?
The disease has a lot of talkability at the moment as knowledge about it is on the rise. Previously, endo was never really a disease that people put on the table as a possible catalyst of pain, mainly because it’s very hard and expensive to diagnose. I also think there has been mixed insight to its causes and symptoms.

In fact, of the gals I know with the disease, most only discovered more about it once their friends talked about it or if they encountered fertility problems. Many women also turn the other cheek to the disease because they assume what they are going through is simply normal.

Why is this?
As young women we’re taught that our periods are going to be painful. We’re told that we will have mood swings and that our energy levels will fluctuate as our bodies go through our monthly cycles. It’s the 101 of phys-ed.

As we ‘become women’ we learn to deal with this pain, mostly thinking that what we are dealing with is just another part of being a female. The good news for most being that it is! But for an unlucky 10 per cent, it is often something quite different. The bad news – the pain women with endo face is much worse than typical menstruation.

The only way I can put it simply is to say it’s both a mental and physical thing.

On the physical side the pain is crippling as a result of what Nat describes above. For most sufferers it can get so bad that they can’t get out bed in the morning. For me it feels like my stomach is being ripped out of my body and all I can do is assume the fetal position in the hope that the pain will pass shortly.

My pain typically comes in waves that lasts for a few hours. At times it’s been so bad that I’ve had to call in sick and set up camp on the bathroom floor. These sessions often include tears, painkillers, peppermint tea and a serious dose of hell-like agony (and a very kind and sympathetic boyfriend trying to help me). This pain can last for a few days to a week. Of course, it varies from woman to woman.

For the other three weeks of the month, my pain is a more sporadic sharp twisting feeling that is incredibly uncomfortable (a little like the discomfort you get when you have a pap smear, but more painful). I also never know when it’s going to strike.

On the mental side of things it’s an incredibly tiring and embarrassing disease. You feel like there is something wrong with you because you can’t push through the pain that other women seem to manage so well (when really you’re dealing with an entirely different experience).

You also carry with you a heavy sense of responsibility to be the happy, healthy version of yourself that your close ones love, when the reality is being so is often damn hard work!

Sometimes I feel like a failure because my body just keeps pulling me down and all I want to do is crawl in to a ball, take deep breaths, clutch a heat pack and pray that the pain will be over soon.

For those wanting more insight – the symptom spectrum varies. Some other endo signs are mood swings, tiredness, painful periods, pelvic pain, back pain, ovulation pain, irritable bowel, bladder issues, painful intercourse, reduced fertility, nausea, constant UTIs and intense PMS.

So why is the disease such a mystery?
There is no scan or test to diagnose it. Yep, you’re flying blind until you decide to have an operation called a laparoscopy. We also don’t know yet why some women get endo and others don’t. But I’ll go in to this shortly.

Laparoscopy is a way of performing a surgery. Instead of making a large incision (or cut) for certain operations, surgeons make tiny incisions and insert tiny instruments and a camera into a site, such as into the abdomen, to view the internal organs and repair or remove tissue. For endo sufferers, the surgeon typically makes four incisions.The operation often takes anywhere between 90 minutes to six hours to complete.

Frustratingly, it feels like many health professionals also don’t know enough about endo to link the symptoms to the disease and thus women are often misdiagnosed and left to find out more via Dr. Internet.

The good news is that this is changing thanks to increased awareness through public discussion.

Today’s conversations are helping to inform women about their bodies and to break down the taboo of this disease. Ten years ago no one wanted to talk about their uterus, but today we can’t stop talking about them! Hoorah for that! 🙂

What do they think could cause it?
Some medical professions believe that genetics are a dominant factor in an endo diagnosis. Others suggest that varying factors of impaired immune system function, inflammation, and hormone imbalance have an impact on endometrial development and pain.

How does living The Whole Life help and is it relevant to endo relief?
There is a lot of discussion about what suffers can do to help ease the pain of endo and manage their symptoms. Many professionals believe in the use of hormones to keep ovulation at bay and thus the progression of endo (aka the pill). Others swear by a holistic approach.

Some research suggests that endometriosis is worsened by estrogen and estrogen mimicking substances (such as alcohol, plastics, environmental pollutants, self care products, poor water quality and other toxins found in our foods). Likewise, as mentioned above, inflammation is also thought to play a role in the body’s response and ability to deal with endo (some even believe that endo could be an autoimmune disease).

“Firstly, inflammation may cause endometriosis by impairing the immune response. Secondly, however, inflammation is what (coupled with hormones) has the capacity to make endometriosis painful. Just as in some women have painful periods and others do not, so the same phenomenon translates to the endometrial tissue that is located elsewhere in the abdomen.

If a woman has an up-regulated inflammatory response to her menstrual cycle, then her endometriosis will be painful. If she does not, then her endometriosis can go unnoticed for years–even for her whole life. It just doesn’t hurt her. Inflammation partly explains why there is no statistical correlation between the extent of a woman’s ectopic endometrium and her pain level. Some women have wicked ectopic endometria, but no pain because their inflammation levels are low.”

My Whole Life approach takes note of these possible influences and puts into play practices that should help me better manage my symptoms. My goal is to live in a way that fosters good health everyday; this includes lowering inflammation and reducing exposure to certain hormones/products that mimic hormones. I do this through considered food intake and an understanding of the products and activities that should be avoided (and increased) to keep my body happy, and my endo symptoms at a minimum. By doing so, I’ve found that my symptoms can be reduced and managed more effectively.

Mostly this lifestyle is based around a holistic approach (eating clean and organic, exercise, a combination of eastern and western medicines, etc.) as I believe that living a holistically can work to improve and manage a situation before it gets really bad.

Does the holistic approach work?
I believe that it does. It takes time, money and dedication, but with the proper care and persistence you can use holistic methods to manage your symptoms and hopefully prevent the return of a disease. I do not however believe that you can use holistic or eastern means to completely heal an illness, we also need to embrace western medicine to do this (it would be crazy not too!).

Of course, this is purely based on my own personal experiences.

What steps do endo sufferers need to do to help themselves holistically?
Nat wrote the following list in a very powerful blog post recently. Here she summerises the endo lifestyle perfectly. If you’re interested to know more, you can read the entire post here http://www.natkringoudis.com.au/hello-cure-endometriosis/

I also recommend that you check out this site detailing the endo diet ‘http://www.endo-resolved.com/diet.html‘ I try to follow these guidelines everyday.

In the meantime, if any of the above resonates with you, I encourage you to seek out more information, see a specialist, and consider what changes you can make to take charge of your health. It may just change your life.

Of course, I hope this information is useful to you. Everything I post on The Whole Life is in an effort to keep healthy and maintain a good balance in the journey to wellness.

Nat’s Tips For Curing Endometriosis

  1. Remove stress:
    When the body becomes stressed, it contracts. We all hold stress in various areas and for some women that will be immediately in our reproductive organs. Quite simply when we restrict blood flow (by holding stress in an are i.e. a stiff neck), the muscle will contract, blood and nutrient flow will be minimised and the body suffers and begins doing whacking things to try and cope with the pressure you’re subjecting it to. Find your therapy. Sometimes we need some specific tweaking and the longer we leave stress and poor diet unattended, the more it will take its toll.
  2. Castor Oil packs:
    Castor oil penetrates and dissolves masses, it helps relax the body and can be used to break up the stagnation that occurs with endometriosis.
  3. Change your diet:
    A good diet is paramount. You can’t put soft drink in a car and expect it to run (although coke-a-cola does resemble rocket fuel it seems – it’s known as the best degreaser going, good enough to clean truck engines! Yikes). Your body is no different and if you aren’t paying your body the love and respect it deserves with nourishment, you’re a fool for thinking it will take good care of you. Only YOU can control what you put in your mouth. I try to avoid sugar, caffine, soy, gluten, dairy and alcohol. I also eat clean.
  4. Remove toxins:
    Ditch plastic bottles and containers, overhaul your body products (conventional items contain up to 80% of harmful ingredients doing direct damage to your hormones as they enter you blood stream), verse yourself on how much alcohol is ok, why soy is so very bad for your lady bits and how certain foods can help to calm down your oestrogen levels. Sleep for wellness, exercise for health and you’re well on your way toward curing your endometriosis.

References for this post:

  1. http://www.emedicinehealth.com/laparoscopy/article_em.htm
  2. ‘Impaired Immunity, Hormone Imbalance, and Inflammation: Endometriosis as the Standard American Diet Triple Threat’ http://paleoforwomen.com/auotimmunity-hormone-imbalance-and-inflammation-endometriosis-as-the-standard-american-diet-triple-threat/
  3. Of course, all information above comes from either the sources referenced, my own research and knowledge gathering over the last 12 months, or through personal experiences.

I should note that this is a personal account and should not be taken as medical advice. I’m simply sharing what I’ve learnt through my own research and journey with endo.

I’d love to hear what else you know about the disease and how you or your friends/family manage symptoms?

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