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What is Endometriosis and why didn’t I know about it?

Photo by Kalen Emsley

Have you ever decided that you would choose a year to sort out an issue that just won’t go away and needs your attention? This was me last year regarding my health.  It was the year of finally finding out what on earth was going on with my body.

Starting with a visit to the GP, she referred me to undertake an ultrasound, colonoscopy, endoscopy and laparoscopy. During the year, I undertook a clean program. I initially failed, but was successful this year. I also saw a Functional Medicine Doctor who ordered a variety of tests to find out how my body was functioning.

I discovered a lot through all these processes. I had endometriosis, fibroids, giardia and intolerances to egg, mushrooms, dairy, beans, wheat, almonds (I have to stop here because the list is exhausting!).  Putting it plainly, my internal body was rejecting nearly everything I put in it and my hormones were rejecting everything and everyone within a radius of one to two weeks before my period was due!

I refused to believe that certain foods were affecting me. I could not stand the thought of giving up the wonderful delicacies like poached eggs on sourdough with buttered mushrooms or a frothy milky latte. I persisted eating these thing that inflamed my body.  When the gynaecologist told me that I had endometriosis but not enough to warrant the pain I was experiencing, I went into study mode.  I was sick of my pain being dismissed as IBS and I needed to start understanding my body and needed to understand my results in ‘me speak’ so that I could make an informed decision and plan of attack to get my body functioning properly.

What is Endometriosis – commonly termed as Endo?

Endometriosis occurs when the endometrium (the tissue that lines the inside of the uterus), grows outside the uterus.  During ovulation, the misplaced endometrium cannot leave the body through the vagina when you get your period.  It bleeds, causes inflammation and pain and then heals.  The Endometriosis Research Centre states that “no single researcher has found the answer and chronic, inflammatory reaction, infertility and pain associated with endo may also correspond to a variety of co-morbid conditions ranging from autoimmune disease to food and environmental allergies and intolerances”. It also needs to be noted that Endo is a chronic condition.  Surgery to remove the lesions can provide relief, however pain can be on a recurrent basis depending on severity.

What are the underlying symptoms?

If you have all or some of the symptoms associated with endo, please make an appointment to see your GP to discuss if your pain may be related or get a referral to see a specialist who deals directly with endo.

  • Pain that stops you on or around your period.
  • Pain on or around ovulation.
  • Pain during or after sex.
  • Pain with bowel movements.
  • Pain when you urinate.
  • Pain in your pelvic region, lower back or legs.
  • Having trouble holding on when you have a full bladder, or having to go frequently.
  • Heavy bleeding or irregular bleeding.

 Does it get cured?

There are many professionals out there that have varying types of ways in which to treat endo. It is a personal choice on how combat the disease, but the more you know about it, the easier it is to make informed decisions.

Endo cannot be cured but can be effectively managed. The treatment of endo would benefit from trying out different treatments that you are comfortable with and know that you can manage.  Sometimes a change in habits can impact in a very positive way towards pain management. Here is a small list on treatments that can alleviate the symptoms associated with endo.

Medical:

  • Surgery (excision) to remove the endo will eradicate the disease that is present at the time of surgery.
  • Hormone medication has been shown to help alleviate symptoms of endo by either eliminating the bleeding or reducing it, and/or balancing hormone levels.
  • Pain relief – Non-steroidal anti-inflammatories

To fully understand if you have endo, the best way is through a referral to see a specialist.  See the following link for dedicated specialists within Australia who treat endo at ECCA.

Seek out the specialists who are thoroughly trained and understand this specific disease as there are many areas outside the uterus where endometriosis can travel to.  Without this knowledge and understanding, possible diagnosis can be missed.  To find out more, watch this great 3 part series explaining endo from Endometriosis Australia.

It may feel like the journey is never ending, but when you have the right tools and answers, it is so much easier to navigate.
Awareness:

Diagnosis:

Treatment:

Non medical and therapeutic:

Although surgery can eliminate endo and ease pain associated with it, there is always the possibility that it will grow back.  Having a balanced life plan can help in reducing the pain symptoms and also help in reducing mental stress and anxiety that may also be attributed to the disease.

Regular exercise matched with a controlled diet will improve endo symptoms (believe me I know it’s hard but when you get over the hurdle and the pain gets less and less, you’ll love yourself for doing it). Also reducing the amount of chemicals that are around the house and what you put on your skin (i.e your shampoos, skincare, makeup and detergents) can also help to balance out your hormones.  Known as Xenoestrogens, our everyday products can mimic our natural hormones. By doing this, they and can disrupt the balance of how our bodies work and have been linked to other diseases such as cancer, early onset puberty, miscarriages, reduced sperm count and diabetes.

Therapeutic:
  • Acupuncture
  • Massage
  • Physiotherapy
Exercise:
  • Pilates
  • Yoga (both great for stretching the muscles around the pelvic area and releasing some muscle tension)
  • Walking
  • Running
  • Aerobics
  • Karate (I put this in because I have been doing it for the past 8 months, love it and have found a lot of relief in my lower back!)
  • Any type of exercise that you enjoy and makes you laugh and have fun. Try dancing, table tennis, roller blading… anything!

Foods to avoid

  • Wheat – Get off it now! You will never look back
  • Red Meats (or organic grass fed meats in moderation)
  • Sugar (replace with stevia or coconut sugar)
  • Caffeine
  • Dairy
  • Fried foods (I go the 80% good, 10% moderate, 10% bad rule here!)
  • Alcohol
  • Highly processed foods with preservatives and additives

Foods to eat

  • Whole foods such as fruit, legumes, nuts and seeds
  • Dark leafy vegetables
  • Fish and chicken (free range)
  • Rice

And how awesome is it that there is now an endometriosis diet app. With recipes like ginger soy salmon fillets and Thai green chicken curry. YUM!

Products to avoid

  • Hair products, skin lotions and soaps containing Parabens, Phenoxyethanol and Phthalates
  • BPA. Found in plastics, tin canned foods.  Unfortunately even receipts contain high levels of BPA.  If you don’t need the receipt, avoid taking it.
  • PFC’s.  Found in nonstick cookware.   Avoid buying teflon coated pans.

Products to use

  • Make your own body washes from most items found in the home. Regular use of these products can help reduce acne and eczema and better still, you know what ingredients you are putting on your skin.
  •  Buy organic, natural products that do not contain any of the above chemicals.  If you can’t read it on the label, chances are they are a synthetic substance.
  • Buy glass containers or jars and store your food in them once the packets are open.  Or research around your area where there is a whole foods store. You can take your own jars in and avoid using plastic altogether.
  • Stainless steel or ceramic pots.  Easy to clean and they don’t break down over time, meaning they last a lot longer and what you eat doesn’t contain the remnants of your pot!

Why didn’t I know about it?

It wasn’t until my 10th visit to a different GP that she referred me to a specialist, suggesting I may have endometriosis. Ultrasounds and Colonoscopies were the norm but this was the first time I had heard of the word “Endometriosis”.

Education and awareness of the disease is not widely known.  It is presented in many different ways, and pain is experienced on varying levels. The only way to fully know you have endometriosis is to have surgery, therefore testing for the disease is not as easy as a blood test.

Questions still exist for me as I didn’t see a specialist functioning specifically in the treatment of endo. His comments regarding my pain were opposite to those within medical treatment journals and the above webinars, so I urge those who believe their symptoms may be attributable to endometriosis, to get answers and see the right people to assist in getting those answers. Don’t give up because the studies continuously show that diagnosis of endo can start from as young as 8 years old and the more you know, the sooner you will feel relief and understanding.

A year on I am not fully fixed, but my pain levels have decreased significantly.  When I eat gluten now, I feel it immediately and my back pain comes back within minutes.  I would never have thought food could have such an effect on the body, but it does.

Where I am now with the disease:

After the surgery to remove the endometriosis, my pain had not subsided. As a treatment considered alongside surgery, I have chosen a controlled diet, eliminating all gluten and eggs from my diet.  Coffee is still part of my life, but in moderation.

Karate is an awesome sport I have taken up with my kids and I also go for short runs.  I don’t go to extremes (however I did recently compete in a Karate competition, which was heaps of fun!!).  I maintain a level of fitness which has increased my energy levels. Along with the elimination of foods, this has also decreased mood swings.

During the month your hormone levels change.  By understanding and acknowledging the phase that you’re in, it also allows you to feel in control of your body and emotions.  It makes you feel good within yourself.  For more on this topic, read my blog on Period Lowdown No.1.

Where Can you find more information?

I’m happy to find that the literature and research into endometriosis is growing.  Education around the disease is the next step.  The next time you speak to someone, ask them if they know what Endometriosis is. If 10% of women suffer from the disease with a 7 to 10 year delay in diagnosis, let’s start a conversation on it now. Those suffering unknowingly can hopefully get help earlier and get clarity sooner rather than later.

https://www.endometriosisaustralia.org

http://www.endometriosisdiet.com.au

https://jeanhailes.org.au/health-a-z/endometriosis

https://jeanhailes.org.au/contents/documents/Resources/Booklets/Understanding_endometriosis.pdf

http://www.endopaedia.info

 It may feel like the journey is never ending, but when you have the right tools and answers, it is so much easier to navigate.

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