Endometriosis: My Recovery Story


March is Endometriosis Awareness Month.  And it is great to see more attention being paid to this very relevant condition that is thought to affect 1 in 10 women.  Endometriosis is a leading cause of pain and infertility, and 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 causes inflammation, pain and eventually, scarring.

 

The symptoms of endometriosis can vary from woman to woman, as can the severity.  What is quite unusual about endometriosis is that the severity of the disease doesn’t necessarily match the symptom pattern 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:

 

  • Painful periods – in many cases painkillers do not relieve the pain.  The pain can be so severe as to interfere with daily life - including impacting the ability to work, participate in a social life and develop personal relationships.
  • Pain at other times of the cycle, particularly mid-cycle when ovulating
  • Pain during intercourse
  • Fatigue and lethargy
  • A heavy, dragging feeling in the abdomen
  • Bloating, nausea, diarrhea (particularly prior to, or during the period)
  • Infertility
  • Heavy periods
  • Clotting with the period
  • Spotting in between periods, or after intercourse

 

Endometriosis also has a massive impact on a woman’s life, as well as affecting those around her.  It can contribute to problems within relationships, and there can be significant costs involved – both with direct healthcare costs and potentially lost income through days off from work or study.  It is also a condition that takes a toll on a woman’s mental and emotional well-being, and social life.  With that in mind, a diagnosis of endometriosis is not something to be taken lightly, and it can be quite distressing.  What is extremely concerning is that many women go many years before being diagnosed with the condition (the average time from onset of symptoms to diagnosis is 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 HUGE difference between period pain and endometriosis pain.

 

Endometriosis is a condition that I am particularly interested in – as I suffer from it myself.  I’m passionate about women reclaiming their hormonal health and spreading the message that the kinds of pain and suffering that come with many endometriosis diagnoses are not the way things necessarily have to be.  While there is no cure for endometriosis, I firmly believe natural medicine has a lot to offer in helping manage the disease and enhancing quality of life for sufferers.

 

This is my story…

 

The (Long!) Road To Diagnosis

 

I had always experienced problems with my periods.  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.

 

After I met my 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 fatal in most cases, there is a high cerebral palsy rate amongst survivors, and the best that we could hope for was that our babies would be able to get to a point where they could be delivered so that they were away from the situation.  Needless to say this was a massively stressful time in our life.  Thankfully we were extremely lucky, and the boys made it to 30 weeks and 4 days, where they were delivered weighing 1560g (3lb7oz) and 808g (1lb12oz).  Now they are 19 years old and you wouldn’t know that they experienced such a traumatic start to life.

 

The reason why I mention this is that I believe this experience played a significant 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 definitely affected my mental health for many years.

 

When the boys were around 2 years old, I started to find that my cycle was REALLY giving me some issues!  As if it wasn’t difficult enough to keep up with two energetic little boys, my pain levels started to increase, 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.  Over time, this worsened and I would start to feel this way from 2 weeks before my period was due.   Mid-cycle my abdomen would puff up to the point where if I felt like I waddled when I walked.  The pain also worsened to a level where painkillers were practically useless – all they did was take the edge off the pain 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 herbs and supplements, however at the time I didn’t really understand that working on things naturally would take time – I recall simply making an appointment with her when things got really bad for one or two visits, but didn’t continue beyond that and before too long 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 extremely embarrassed and intimidated, and thinking that surely this must just be in my head, and what a baby I was 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.  She then told me she thought I might have endometriosis (which I had never heard of) and referred me to see a gynaecologist (who just happened to be the wonderful human being who had saved our babies’ lives).  He agreed with the GP that it was 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 pulling on some of my internal organs.  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 PMS and acne and my abdomen continued to puff up mid-cycle.  The trouble with surgery is that usually you can expect the endometriosis to grow back over the course of time – sometimes within a few years.   My doctor suggested we use some hormonal treatments to minimize the further growth of 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 when used long-term).  None of these options were very attractive to me, and I didn’t feel that any of them were addressing what had gone wrong 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 the underlying cause.

 

How Things Have Changed

 

I read all I could in on endometriosis and worked on improving my hormonal balance (reducing excess estrogen with herbs and exercise), improved my diet, and managed my stress better (something that does not come easy 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 lots more interesting aspects of natural endometriosis management, I was able to add these into my holistic support plan.  I was able to include 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 Now

 

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 has suggested that an imbalance in the gut bacteria (the ‘microbiome’) contributes to inflammation within the body.  Inflammation contributes to 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 estrogen – if your gut isn’t in good shape it can lead to your body reabsorbing estrogen rather than eliminating it, which can be a driver of endometriosis.

 

  • Liver & 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.

 

  • Inflammation & Pain. 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, estrogen 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 between these two main players can be tipped.  I use certain nutrients and herbal medicines to help achieve a healthier hormonal balance.

 

 

  • Other Factors. 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 levels, thyroid function, pain perception, weight, nutrition, activity levels and even the health of the immune system when working with endometriosis sufferers.

 

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 still struggle with their disease.  Also, my clinical experience has been that some people just 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.

Is endometriosis impacting on your quality of life? You don’t have to suffer through the pain.

Book in an appointment today, and we can put together a plan to help balance hormones and ease symptoms.

REFERENCES:
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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