Here are some questions I'm often asked about my symptoms, diagnosis, treatment and current health.
Approximately how long did you have symptoms for before being told you have endo?
Around 5 years and it felt like a lifetime.
What symptoms did you have before surgery?
When I was 13 I got really really sick and the doctors thought I had glandular fever. I wasn’t eating, all I wanted to do was sleep, my bowel wasn’t working and I had terrible stomach cramps - it was like my body had shut down. After this experience, I never really came right. I had excruciating periods and would be forced to take the day off school and stay in bed, I couldn't’ use a tampon, sex hurt like you wouldn’t believe, I was always bloated and went from having constipation one day to the other extreme the next. I had constant headaches, suffered from hot flushes, frequently got the symptoms of urinary tract infections - but the tests would come back negative, and most significantly, ended up in hospital on a regular basis because I was in so much pain I couldn’t move.
What were you diagnosed with initially?
A few things - hypochondria, a gluten intolerance and irritable bowel syndrome.
How many doctors and specialists did you see?
Too many to count. On top of various doctors, I saw a pediatrician, gastroenterologist, urologist, immunologist, dietician and a gynecologist. As I’ve moved cities I’ve had to find new ones too, which is like starting from scratch.
How many ultrasounds did you have and was anything abnormal noticed?
I had one ultrasound when I first saw my gynecologist and everything appeared ‘normal.’ I’d had multiple xrays of my bowel, which was always at full capacity - so I’d be given large doses of laxatives and been told that was my problem (if only).
Endometriosis is usually caused by excess of estrogen and poor liver detoxification. Have you ever been told this information?
This is something I have investigated in detail through my own research. I have had a naturopath and homeopath share the complications around it too.
With liver function in mind, have you ever had glandular fever?
Have you ever used HRT (hormone replacement therapy) such as the pill, IUD, mirena, injection etc? If so, which HRT have you used and for how long?
Yes, I went on the pill after my first surgery...but lasted about two months. I didn’t like the way my body reacted to it - oily skin and weight gain. After my second surgery I had a mirena put in, but this didn’t last long either. It was causing a lot of discomfort and pain and I could feel it every time I had sex, so I was very pleased to see the end of it. There was instant relief the moment it came out. After this I had the depot injection at two monthly intervals (instead of your standard 3) to stop breakthrough bleeding for about five years straight.
If yes to HRT, what were your side effects? Did you improve or worsen on HRT?
I was really good on the injection, I had minimal pain and was enjoying my life. I was scared to stop it. I thought that if I ever had a period again, more endometriosis would grow and it would all be down-hill from there. How wrong I was!
If you have been on HRT then have come off it, what support was offered by your GP or specialist? What did you experience coming off it? (eg. Acne, period not arriving)
After I became quite interested in natural and alternative health practices I decided that I wanted to come off the injection and see how my body reacted or if it could balance itself out. It had been a year with no intervention and my period still hadn’t come, which was concerning. My specialist reassured me that this was normal and that it could take a while to completely leave my system. But not long after, I was back in hospital with pains and diagnosed with PCOS and chronic pain disorder (a neurological condition).
There are many tests available that can provide useful insight into endometriosis. For example, salivary hormone profile, adrenal hormone profile, urinary and estrogen metabolites. What tests have been offered to you?
I have spoken with a naturopath about various hormone tests, but needed to get some parasites in my bowel sorted and detox my liver to try and re-establish a regular period before I looked at these tests. We started monitoring my temperature every morning to see what was happening in that space. But this is definitely on my to do list and something I’ll be focusing on post baby.
Have you had adrenal fatigue?
Have your blood tests for hormones come back ‘normal?’
If you had a blood test for hormones, did the GP/specialist ask where in your cycle you were, so they could determine if the hormone levels were correct for the day you were in your cycle?
No. I went seven years without a period. I didn’t think I even had a cycle.
If you are willing to answer, has your endometriosis situation ever made you feel low or depressed? If yes, have you ever been on anti-depressants for this?
Yes, after my first surgery I was diagnosed with post operative depression. And more recently after my PCOS diagnosis I went through a terrible patch of depression, social anxiety and fought an eating disorder. Throughout this period I had panic attacks. I have been offered anti-depressants multiple times, even as a last resort to attempt to calm my nerves as there were no other options. I have tried to reiterate to doctors that although I have been depressed and know what rock bottom feels like, at this point in time I am “frustrated” by my situation, and not clinically depressed. I have never committed to taking anti-depressants and instead opted to talk to a psychologist, exercised and leant heavily on my partner and family. However this wasn’t on my own accord, my mum and husband were the ones who established I was in a bad place, and Ben had to drag me out of bed most days and take me to the psychologist, because there was no way I was in the right headspace to willingly go there myself. I spent a lot of time in denial and remember people calling me “hard work,” but I was a zombie and even now it’s all a bit of a blur.
Did you know, when you have endometriosis, your oestrogen and progesterone are not doing their “dance” properly together? Progesterone is your anti-anxiety and anti-depressant hormone. With this imbalanced, you will probably feel anxious and depressed.
Yes, it’s a bitch of a cycle and my husband would happily admit that I’m an emotional roller coaster who will burst into tears for absolutely no reason at all. And although I’m in a better space, my anxiety can randomly creep up on me out of nowhere.
How old were you when your endo was confirmed?
I was 18.
How severe is your endo?
Moderate to severe, so the high end of stage 3.
How do you manage your endo?
Through diet and lifestyle changes. I’m a juice cleansing, bone broth drinking supplement taker who gets colon cleanses and coffee enemas on a regular basis. I used to take low dose morphine on a regular basis (was almost addicted) and destroyed my gut lining in the process. It was one drug after another, you needed a laxative to deal with the constipation a pain killer had given you...an endless cycle. I made the decision to stop taking all forms of medication, unless I absolutely have to.
What have you learnt about your fertility since finding out you have endo?
Having children is not going to be easy and I should start young. Which is the advice I took. In 2016 my husband and I did six rounds of ovulation induction and had no luck. The process destroyed me mentally and physically. It took over my life and I lost sight of who I was as a person. Following this, we secured myself enough points to qualify for the publicly funded IVF waiting list (because we didn’t have $12,000 for one round). My PCOS means I don’t get regular periods and when I do get one, I don’t ovulate. But after working really hard on my gut health and having a vaginal steam (which supposedly) flushes any buildup and toxins out of your tubes) and healing massage around my ovaries and uterus...things changed. I was supposed to have my third surgery on 29 May 2017, but ended up at the doctors four days before with a suspicion of glandular fever. The doctor asked me if there was any chance I could be pregnant...I said 1%. I did a urine test, and what do you know, I was apparently pregnant. I conceived naturally, without any form of medical intervention and now have a healthy baby boy.
What fertility tests were you offered? E.g. AMH blood test.
I’ve had some blood tests done, one was an egg reserve count. I haven’t had the results discussed with me though.
Does anyone in your family have endo?
Not officially, but my mum had terrible periods.
Have you changed your diet or lifestyle?
I’ve tried every diet in the book; FODMAP, paleo, vegetarian, gluten free, dairy free, Whole30, autoimmune and low carb high fat. Not one approach suited me perfectly, so I’ve learnt to listen to my body and created an “Emma friendly” diet. I’ve cut gluten, alcohol and sugar completely as well as all forms of processed foods. I’m allergic to soy and yeast and intolerant to a large group of foods, which eliminates a lot of things for me. I don’t eat foods that cause inflammation (tomatoes, mushrooms or capsicum) or things that are hard to digest like red meat. But I eat lots of vegetables, fruit, healthy fats, chicken and fish and a little bit full fat dairy. I eat rye sourdough and oats. And I drink coffee (because it’s a simple pleasure that I’m not willing to sacrifice). As someone who has been severely overweight and underweight and had a horrible relationship with food, I’ve had to work really hard to shift my mindset and focus on fueling my body instead of starving it. I get my period now (it’s not always regular, but it exists) and that’s not something I had when I was 10kg’s smaller.
When my bowel is unhappy with me and I’m feeling sluggish, I’ll pull it back to basics and drink smoothies, broth and soup. I give my body a break when I need to, and then it cooperates better.
I’ve also changed my exercise regime, I stopped over doing it. Now I’m much better at listening to my body and practicing mindfulness. I used to be this person that went at 200 miles 24/7 and was lost if I wasn’t. I had a full-time job, did additional contract work on the side, was trying to run my blog and publish a recipe journal and doing part time study. I drove myself to the ground. Was working slave hours in a job that wasn’t entirely me and lived in a city that I didn’t love either. I soon worked out that this hugely impacted my life; so with the support of my husband, we packed up our life in Hamilton and moved to Wellington (where I had been before I met him). He’s taught me how to chill (a little) and I manage to get to yin yoga and take baths with lavender oil.
I had to accept that there were going to be limitations when it came to CrossFit too. I’m not great at skipping because I can’t control my pelvic floor muscles and I’m never going to be able to do some things like strict toes to bars because my core is so weak and that pressure around my stomach causes pinching in my nerves. It used to drive me mental, but now I try really hard to focus on all of the things I can do. It’s easier after having injured my back at a CrossFit competition and having been out of everything bar rehab and walking for 18 months.
I’ve also been forced to start to accept this concept of “self-love” and living in the now, instead of waiting for things to happen. I was so caught up in “I’ll be happy once I’m 5kg’s lighter, I’ll be happy when I earn ex amount of money every year” etc. Reality - that's not the case at all. You’re responsible for your own happiness and have the power to create it. I’m happy to admit that it’s something I’m still struggling with. It’ll probably all change once I have a baby too!
Have you seen an integrative practitioner, medical herbalist, naturopath or similar? If yes, what did you learn?
I have seen a nutritionist who practices reiki, I have seen two naturopaths who have assisted with various food and metallic level testing, I have seen an acupuncturist who specialises in Chinese medicine and prescribed herbs, a chiropractor who engaged in “total body treatment” and I’ve seen three different homeopaths through various treatments including a scar tissue healing massage. I’ve learnt that there are alternative ways to restore and repair your health - not every approach is going to suit or align with everybody, but that’s okay, because you can pick and believe in whatever works for you. People may not respect your decisions or believe that these witch doctor like things work, but you are the one who sees the results and improve your overall quality of life. I’ve learnt that you need to be open and willing to try and that alternative health practitioners have a real sense of empathy and genuinely want to help.
What type of surgery did you have?
I have had 2 laparoscopes.
Was a spray gel or mesh used?
I’m unsure, they’re a bit of a blur.
What symptoms do you have now?
I get the occasional “endo” pain, but I think more of it comes from my stomach bloating out and pushing on my scar tissue and nerves.
What else was discovered during your surgery, if anything?
My appendix had been destroyed by the disease, so that was removed.
How many surgeries have you had? Will you require more?
It’s looking like I’ll need another one in the near future. As I was scheduled to have one before I found out I was pregnant. Sometimes I think it’s about peace of mind too, knowing what’s going on inside of your body.
Has the endo returned post-surgery?
Not a lot grew between my two surgeries, but my gut feeling is that some of the disease has returned.
I collated these answers for The Endo Journals, a blog by Alex which features 100 women sharing their endometriosis story.