Endometriosis Story: My Recovery

Every March it's Endometriosis Awareness Month.  And thankfully, awareness of this painful, stressful, and often very debilitating condition is increasing each year.  What's more, endometriosis is finally beginning to get the attention it deserves in terms of research - both into what causes the disease in the first place, as well as what can be done about it in terms of potential treatments.  This is good news, and something I'm very keen to watch unfold.

Firstly Though - What Exactly IS Endometriosis?

The condition occurs when tissue from the endometrium (the lining of the uterus) is found in other parts of the body – most commonly the abdominal cavity.  Endometriosis tissue thinks it is still located in the uterus, so it responds to hormonal fluctuations by building up and shedding every month in line with the monthly menstrual cycle, but due to its location outside the uterus it drives inflammation, pain and scarring of the area.  Because of this, it's a leading cause of pain and infertility, and is thought to affect around 1 in every 9 women - including some who may actually be unaware that they actually have it.

However, it pays to be aware that the severity of the disease doesn’t necessarily match the symptoms experienced.  In other words, one person may have very mild disease, yet suffer excruciating pain, and another may have extensive disease yet feel only mild symptoms (or even none at all).  The most common symptoms of endometriosis can include:

  • Extreme pain, which can occur with the period, or even at other times in the cycle (such as around ovulation, or after sex).  The pain can be so severe as to interfere with daily life.  In many cases pain medication does not adequately manage pain levels - they may 'take the edge off' the pain but not much more.  
  • Fatigue and lethargy - particularly during the week before the period
  • A heavy, dragging feeling in the abdomen, and often in the back and/or down the legs
  • Gut upsets such as bloating, nausea or diarrhoea (particularly prior to, or during the period)
  • Difficulty falling pregnant
  • Heavy periods, often with clotting or dark blood
  • Spotting in between periods, or after sex

So it goes without saying that the condition extracts a painful toll - not only in the form of physical symptoms, but the potential collateral damage to important areas such as career opportunities, the ability to fully participate in social events, leisure activities and intimate relationships.   What is extremely concerning is that many women go years before a diagnosis is made (the average time from onset of symptoms to diagnosis is thought to be around 7 years) – and it is not uncommon for a sufferer to be told that their symptoms are simply ‘normal period pain’.  As any woman with endometriosis will tell you – there is a MASSIVE difference between normal period pain and endometriosis pain.

Endometriosis is a condition that I am extremely passionate about – as I know just how it feels.  I was diagnosed with endometriosis in 2006.  And whilst 'officially' there is no cure for endometriosis, I firmly believe natural medicine is an incredibly under-utilised strategy when it comes to managing the disease and enhancing quality of life for sufferers.  

So here goes.  This is my story…

The (Long!) Road To Diagnosis

I had always experienced problems with my periods, right back from my teenage years.  It was something that I had just accepted as being ‘normal’.  When I was around 13 or 14, I can remember spending stretches of  time in the school sick room in so much pain I couldn’t lie still.  My mother became concerned that I was missing a lot of school (up to 1 week each month) that she took me for a visit to my GP, who promptly prescribed the Pill to ‘regulate my hormones’.  This did help reduce my pain levels to a more manageable level (although I still found that I needed painkillers most months), and I didn’t think too much about things for a few more years.

A couple of years after I met my now-husband, we decided we wanted to start a family, and I didn’t have any problems falling pregnant.  What I wasn’t prepared for, however, was the fact that we were having twins!  And what’s more – it turned out they were suffering from a potentially deadly condition known as Twin-To-Twin Transfusion, which is a problem that occurs when twins share the same placenta and the blood flow does not feed them evenly.  The condition is extremely dangerous for the babies, and the best that we could hope for was that the pregnancy would progress to the point where they would be strong enough to be able to be born prematurely.  Needless to say this was a massively stressful time in our life.  Thankfully we were extremely lucky - we got to 30 weeks, with both twins surviving and thriving and now they are healthy, capable young men.

The reason why I mention this is that I believe this experience played a role in the development of my endometriosis.  I have heard many practitioners mention that ‘there is always an emotional component to endometriosis’ and in my clinic, this is what I have observed as well.  Scientific research has revealed that there is a high correlation between childhood abuse amongst endometriosis sufferers.1  While this isn’t what happened to me, most of my disease seemed to manifest following the birth of my twins.  Perhaps it wasn’t related, but I spent a lot of time feeling like my body had failed my babies – they should have been safe within my body yet they spent that time in an environment that was killing them.  While I now know that is not the case, it certainly did affect my mental health for many years.

When the boys were around 2 years old, I started to find that my monthly cycle was causing me increasing distress.  As if it wasn’t challenging enough trying to keep up with two energetic little boys, my pain was steadily getting worse, I was getting terrible acne and PMS, I felt depressed and I also found I was absolutely wiped out in the few days leading up to my period.  Not just a little bit tired, I was absolutely exhausted to the point where I could barely function.  I'd describe it as 'bone-numbing fatigue'.  Over time, this worsened and gradually the time that I felt unwell stretched longer and longer - eventually I would start to feel this way a whole 2 weeks before my period was due, right up to my bleed.   Mid-cycle my abdomen would become puffy and inflamed and was so painful that I felt like I waddled when I walked.  Painkillers became practically useless – all they did was 'take the edge off' a little.  It was all I could do some days to force a little bit of food into my stomach so I could actually take my painkillers – and my stomach would be so upset that I would need to make sure there was a toilet close by if I had to go out (this is not fun when you have 2 little ones in tow!).

At this stage I wasn’t a naturopath, however I did have a wonderful practitioner who I visited on and off at various times.  She prescribed me some natural medicines that definitely helped - however at the time I didn’t really understand the concept that working on things naturally would take an investment of time and patience.  So my symptoms would improve a bit, and I didn’t continue my treatment beyond that - and before too long I of course I found I was right back where I started.

After a time, I decided that I just couldn’t keep going with this situation, so I visited my (female) GP.  I described my pain levels and the other symptoms I was experiencing, and how they were impacting my life.  She gave me a disgusted look and told me ‘it’s just part of being a woman – put up with it!’.  She also told me to expect that things would just get worse as I got older.  I left that doctor’s office feeling shamed, extremely embarrassed and intimidated by her reaction, and thinking that surely this must just be in my head!   What a baby I must be to be making a big deal out of it!

Around 6 or 8 months later I visited a different (also female) GP for an entirely different issue, and I recall this doctor took the time to question me about a few other aspects of my health, including my cycle.  What a difference this particular doctor made to my life, and I will be eternally grateful to her for her thoroughness!  She then told me she thought I might have endometriosis (which I had never heard of) and referred me to see a gynaecologist.  He agreed with the GP that it was highly likely that I had endometriosis, and performed an investigative laparoscopy (where a tube is inserted to the abdomen to take a look inside) and diagnosed me with stage IV (severe) endometriosis.  Apparently it was growing throughout my abdomen, including on the outside of my bowel and bladder, and the scarring from the continual inflammation was twisting and pulling on some of my internal organs.  No wonder I was in pain!  This doctor then referred me to a specialist for an operation to remove as much of the endometriosis as possible (this is known as an operative laparoscopy).  This did help reduce my pain levels somewhat, however I found that I was still suffering from many of the symptoms of an underlying hormonal balance - including PMS, acne outbreaks and my abdomen continued to bloat up mid-cycle.  The trouble with surgery, I was told, is that usually you can expect the endometriosis to grow back over the course of time – often within a few years.   My doctor suggested we use some hormonal treatments to minimize the further growth of endometriosis lesions.  He recommended the Pill (to ‘regulate’ my hormones and also to be able to skip bleeds to reduce the likelihood of inflammation & scarring in the abdominal cavity).  He also suggested another type of hormonal treatment to ‘supress’ the female hormones that were playing a role in my condition, however I would have to be ok with potential side effects such as weight gain, growing hair on my chin, and a deeper voice.  It was also suggested that I could continue to manage my pain with painkillers, as ‘these won’t hurt you’ (now we know that painkillers are not harmless and in fact are quite damaging to the beneficial bacteria in our gut and even our liver when used long-term).  None of these options seemed that great to me, and I also didn’t feel that any of them were addressing what was causing the condition in the first place!  By this time I had started my naturopathic studies and was still seeing my practitioner on and off, and decided that I would see what I could do to work on addressing the underlying cause of my condition.

How Things Have Changed

I read all I could in on endometriosis and worked on improving my hormonal balance (balancing oestrogen and progesterone with herbs and exercise), improved the quality of the food I was eating, and managed my stress better (something that does not come naturally to me!).  It took around 9 months for me to feel that I had definitely improved, and it was certainly a case at times of ‘one step forward, one step back’.

As I kept up my treatment I progressed in my studies and learnt plenty more about various aspects of natural endometriosis management, I was able to add these into my holistic support plan.  I included gut, liver, inflammation and detoxification strategies which have helped me get to a point where I rarely experience any pain at all.  In fact, now on the infrequent occasions I need to use a painkiller I actually have to check the packet expiry to see if they are still in date!   I also have not needed any further surgery since 2007.  I’ve gone from someone who was having around 12 functional days a month to someone who is now running a busy clinic without needing to allow for days off due to illness.  I’m so glad that I took the time and effort to do what my body needed me to do.

How I Work With Endometriosis In The Clinic

Thanks to ongoing research on the condition, we now know that endometriosis is not due to any one single cause.  It is a multifactorial condition that results following the ‘perfect storm’ of triggers.  As such, when I see ladies who are suffering from endometriosis in my clinic, there are several areas we work on from a holistic viewpoint (and in most cases these overlap so one area can positively or negatively affect another):

  • Gut Health.  Research is increasingly showing that an imbalance in the gut bacteria (the ‘microbiome’) contributes to inflammation within the body.  Inflammation drives pain levels, as well as interfering with how your body processes hormones.  We also know that women who suffer from endometriosis tend to have abnormal levels of unfriendly bacteria in their gut.2  Your gut is also where you eliminate excess oestrogen – if your gut isn’t in good shape it can lead to your body reabsorbing oestrogen rather than eliminating it, which can be a driver of endometriosis.
  • Liver Health/Detoxification.  The liver also helps maintain hormonal balance, and it works in tandem with the gut to do this. We are also exposed to an unprecedented array of environmental chemicals these days – many of which are emerging as factors in the development of conditions such as endometriosis.  Thus, we need our liver to be in tip-top shape to be able to cope with all the demands it has thrown at it.  Unfortunately, our liver may be struggling to keep up, due to both these exposures and the things we like to throw at it (such as alcohol and junk food).  Ensuring healthy detoxification pathways and liver function is another area that is vital to supporting endometriosis.
  • Pain Signalling.  When we experience pain, our body produces certain pain chemicals.  In endometriosis these can be unbalanced and be over-enthusiastic, causing extreme pain.  It is also common in endometriosis for pain to be amplified by the central nervous system – basically there is a heightened pain sensitivity causing the pain to feel worse.
  • Hormonal Balance In the body, oestrogen is a proliferative (growth-promoting) hormone, and our other main female hormone, progesterone, is calming and anti-inflammatory.  We need both hormones for a healthy cycle, but in endometriosis the balance can be out of whack.  I virtually always use particular nutrients and herbal medicines to help support hormonal balance as part of an endometriosis treatment strategy.
  • Immune System.  Just as with gut health, what is going on in the immune system is increasingly being recognised as playing a role in the development and progression of endometriosis.  Basically, the immune system should not actually allow the endometriosis lesions to grow and proliferate outside the uterus.  There is evidence that there is a part of the immune system that is not working properly in endometriosis sufferers,  that allows this to occur.  The immune system is also incredibly effective at triggering the body's inflammatory processes when activated - driving pain and fatigue.  
  • Other Drivers.  Of course, every woman is different, and this means that there can be other factors that may be playing a role that need to be addressed.  I also make sure we take into consideration individual stress levelsthyroid function, weight/body composition, dietary habits and activity levels, as these can also impact the endometriosis experience.

Is My Story Typical?

As with every condition, people experience things differently.  There are certainly plenty of women who have benefited immensely from natural treatments for their endometriosis, yet I have also met experienced practitioners who have tried everything and still struggle with their disease.  Also, my clinical observation has been that some people simply seem to be better suited to natural medicine and notice quicker results than others.  So, no, not everyone is as lucky as me and I fully understand that.  But it is ALWAYS worth trying.  

I also believe that this condition is something that is not a great idea to try to treat yourself – you really need the ‘big guns’ of practitioner-strength products and the right treatment plan from an experienced practitioner to make a difference to the condition.  Otherwise you can end up barking up the wrong tree in terms of not addressing the correct cause, which can be a waste of time, money and sanity.

If you would like to learn more about endometriosis, I recommend visiting the Endometriosis Australia website.

1  C Liebermann, A S Kohl Schwartz, T Charpidou, K Geraedts, M Rauchfuss, M Wölfler, S von Orelli, F Häberlin, M Eberhard, P Imesch, B Imthurn, B Leeners. Maltreatment during childhood: a risk factor for the development of endometriosis?, Human Reproduction, 2018;33(8) 1449–1458, https://doi.org/10.1093/humrep/dey111
2  Puca, J. & Hoyne, G.F. Microbial dysbiosis and disease pathogenesis of endometriosis, could there be a link?  Allied J Med Res 2017;1(1)
3  McKinnon, B.D., Bertschi, D., Bersinger, N.A., Mueller, M.D.  (2014).  Inflammation and nerve fibre interaction in endometriotic pain.  Trends Endocrinol Metab.  2015 Jan;26(1):1-10.  doi: 10.1016/j.tem.2014.10.003



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