Wow. When I wrote the first part of this blog post, I really wasn’t sure how it would be received. I battled with myself over whether it was an over share, and whether it wasn’t professional of me to be exposing all the details of my own health. But I am SO thankful that I did. I have had countless women reach out to me saying that they have either been through the same thing, or suspect that something is not quite right, but have been told to “just go on the pill” or have been dismissed entirely. Other stories of women who endured pain and symptoms for years, only to finally have the surgery and find that the endometriosis was everywhere.
I just want to reiterate to any practitioners who are reading this – please listen to your patient. We are in the business of giving people back their health. It isn’t always simple. What works for one, may not work for another. But that is the beauty of what we do. We are being trusted with someone’s most precious asset, and it is our duty to really honour that, keep an open mind, and keep digging until we make a change. I truly believe that change and healing is possible for all people.
Today, I thought I would elaborate on my story…
As I mentioned in part 1, the first time I can really recall my health being an issue in this regard was during mid to late high school. My first period arrived when I was 14 (the day we left for year 8 camp!) and I can’t recall anything of note about it. In terms of risk factors of endometriosis, they consider early menarche (your first period) to slightly increase your risk, so at 14 years old I didn’t fall into that category.
To give you some insight into me as a person, I have always put a lot of pressure on myself to succeed. Doing well, whether that be at school, extra curricular activities, at work, or just generally in life, wasn’t just something to celebrate, it was a necessity. Even though I naturally am quite academic, and always excelled at school, I still would beat myself up over not doing better than I did. I’m also highly introverted by nature. I was painfully shy through most of my school years, and I still would consider myself to be quite shy now in certain situations. I guess what I’m trying to paint a picture of is someone who spends A LOT of time in their head. I’m a thinker, a dreamer, a worrier, a perfectionist (in some regards!), and while I don’t project that out onto the world, I basically bottle it all up and project it onto myself. I also can recognise that I wasn’t very good at expressing my emotions through my teen years, so I really let everything build up inside and was very stressed and unhappy.
So then the bloating… I couldn’t tell you the first day it started. Looking back now, it is like it was something that was just always there. My first memory of telling the doctor about it was one of being dismissed. Again – maybe because of the way I felt about myself, that was just my perception, but I strongly remember feeling like she judged me for how I appeared on the outside – young, fit, healthy looking, so made the assumption that I was just a teenage girl who wanted to lose weight. When I finally was taken for an abdominal x-ray it showed such severe faecal loading that I couldn’t actually breathe properly – there was so much pressure on my diaphragm. So the answer? Laxatives.
While laxatives may have helped temporarily to move my bowel, they certainly didn’t help with the bloating or the general shit-ness (pardon the language and the pun!) that I felt.
This is becoming another essay, so let’s fast forward a few years…
By the age of 23 I had been diagnosed as having Irritable Bowel Syndrome (IBS). I just want to add, that this diagnosis is not based on ANY investigation whatsoever. So my symptoms (constipation, bloating, severe fatigue, bouts of depression, big weight fluctuations) had persisted for 8 years, and not one doctor that I had seen had referred me on for further investigation.
While I had been vegetarian for a while in my late teens, it was the very unhealthy kind of vegetarian (lots of carbs and processed foods, plenty of dairy, heaps of gluten, just totally unbalanced) and didn’t help my symptoms. When I was 23, after meeting one of my very dearest friends Cheyenne who is a life long vegetarian, I started to get really interested in diet again. I read multiple books, and for the first time really systematically thought about food and how it might be able to heal my body – until that point it had been the enemy because it made me feel so sick and so bad about myself.
Let’s keep fast forwarding a little… despite the dietary changes I was making – I was vegetarian for a while, then went back to eating meat, have been predominantly gluten free now for about 6 years, and more strictly for the last year, have tried supplements, fasting (even water would bloat me!), FODMAPS, etc etc, I still wasn’t seeing a huge improvement.
The first investigation that I had was food sensitivity test that I sent myself for privately. My friends from college will remember this… in the lead up, you have to expose yourself to all potentially allergenic foods, so I was eating EVERYTHING. And I looked like shit. I didn’t just have a bloated belly, I was puffy all over – my face looked totally different, and I was flat, fatigued, couldn’t concentrate, cried all the time, but was excited because I was SURE they would find something on the test.
When I got the results back…? Nothing! Except 1 tiny little star next to mustard. Now I just want to add here, that this comes down to the lab that I used, not actually that I didn’t have food reactions. I will write another post about it, but a follow up test with a more reputable lab revealed a whole host of reactions.
Next on the list, after much persistence I was finally sent to a gastroenterologist who agreed that a colonoscopy and gastroscopy was required. By now, my bowel and digestive symptoms were significantly worse – perhaps an essay for another day.
So I had the procedure, and similarly to the food sensitivity test, I was hopeful that FINALLY something would be uncovered and I would have answers. The result? Everything was fine. No coeliac disease. No parasites. No helicobacter. No structural abnormalities. “There is nothing wrong with you”.
I remember crying in the office of the gastroenterologist and getting incredibly frustrated that she too was dismissing me, and not acknowledging that my experience was not normal.
Fast forward to 2014 – I’ve been practicing as a naturopath and nutritionist for a while and getting great results with my clients who have digestive issues, but still not a day passes where I don’t have issues myself. It was breaking my confidence and making me feel like an imposter. How could I possibly be a good practitioner if I can’t even heal myself?!
So armed with more knowledge, I now decided to do a comprehensive stool analysis, and the second food sensitivity test. The result? A parasite, really low beneficial flora, low secretory IgA (my gut based immune system), and a heap of food intolerances including gluten, dairy, chicken, broccoli (there goes my body building career!) and a few other random foods.
Great! I thought. Now I have some answers. So for the next 8 weeks I STRICTLY followed an anti-parasitic treatment protocol, including some big dietary changes, herbs and supplements. But I still wasn’t responding.
By now, some other symptoms had started to appear – I noted that my bowel and digestive symptoms were worse at different times of my cycle, but did persist through the whole month, intercourse became painful at different times of the month, and would occasionally bring on bleeding, my bloating was outrageous – seriously, don’t ask someone how far along in their pregnancy they are unless they tell you they are pregnant, and my mood and self-esteem was taking a serious hit. It is exhausting to be constantly not feeling well despite your best efforts. I felt like I constantly had to justify why I was or wasn’t eating something, why I felt the way I did, or other elements of what was going on for me. I didn’t look sick on the outside (and always hid or held in my tummy!) so I think it was hard for people, even those close to me, to truly understand how much I was suffering on the inside – both physically and mentally.
It wasn’t until I started practicing at The Natural Health and Fertility Centre under the mentorship and guidance of fertility guru Leah Hechtman that I considered maybe this wasn’t a digestive issue after all. More and more after speaking with female clients about their menstrual cycle I realised that perhaps mine wasn’t actually normal, I had just never had anything to compare to (another post to come ladies!). From there… more months, more referrals and I finally found myself having the laparoscopy. To be honest, going into the procedure I was more scared that they WOULDN’T find something, than that they would. I joked to a few friends that if I came out and they told me nothing was wrong I was going to admit myself to the psychiatric ward – and part of me really wasn’t joking. I didn’t know what was left to explore (and know the mind is very powerful!).
As irrational as it sounds, I’m sure many of you can relate to the fact that I was relieved when I came out and was told that yes it was endometriosis and in fact was quite extensive. I’m yet to have my follow up with the surgeon, but from the surgical notes and what the doctor told me the next morning it was:
- Both left and right side of my bowel
- Both left and right side of the para-rectal area
- Pouch of Douglas
- A large endometrioma on my ovary (unsure which side)
- And adhesions which had basically stuck my bladder, my uterus and my bowel all together.
So where does that leave me? I’m not too sure at this stage. I’m still very much recovering from the surgery so it is hard to know quite what is going on. I did have to laugh though – I was warned that I would be bloated for a few weeks post op as they have to pump you with gas to look around, but when I came out of the operation and looked down at my belly it was less bloated than it usually is!
Why write this post? It isn’t my intention to make anyone feel sorry for me, or to give myself a platform to complain, to criticise in general or anything like that. As I mentioned in my last post, in many ways I am so grateful for my experience – it has driven me to a career that I absolutely love, and highlighted an area of the health world (both mainstream and complementary) where there is a serious need for education and awareness.
I’ll talk more in my next post about specifics of the surgery and recovery, as well as my thoughts around treatment and prevention, but in the interim please continue to reach out to me. I don’t claim to have all the answers, but I do have open ears (and an over-achieving nature!).