Blog #12, Hayley Ray, 27, Auckland but I’m originally from Solihull in the U.K
We have one life and one body, we should start from within and work our way out. Eat for life and energy and always remember to leave a little sparkle where ever you go!
Approximately how long did you have symptoms for before being told you have endo? 8 years from symptoms to diagnosis
What symptoms did you have before surgery? I had them all; Heavy periods with clots, cramping, fainting, vomiting, mood swings, back pain and serve cramps where I couldn’t leave my bed for days this eventually led me to miss a lot of time from college and work
What were you diagnosed with initially? Initially I was diagnosed with hereditary period pain. As the years passed by I was diagnosed with IBS, an intolerance to gluten and even hypochondria!
How many doctors and specialists did you see? 5 doctors and 2 specialists
How many ultrasounds did you have and was anything abnormal noticed? After I finally convinced my doctor back in the UK to send me for the ultra sound scan, they detected a cyst on my left ovary
Endometriosis is usually caused by excess of estrogen and poor liver detoxification. Have you ever been told this information? When I have saw doctors and specialists they explained about the excess estrogen but they did not go in to detail. Since being diagnosed with Endo, I have discovered so much through excessive research on how the liver is the main detoxification organ in the human body!
With liver function in mind, have you ever had glandular fever? No
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? In April, this year I underwent my third laparoscopy surgery with the insertion of the Mirena to help ease the symptoms that had slowly started to come back. It has now been 7 months and the impact it has had on my life has been positive.
If yes to HRT, what were your side effects? Did you improve or worsen on HRT? The Mirena has certainly helped with my cramping, PMS symptoms and has regulated my periods and made them so much lighter and shorter. This is down to the lower dosage of hormones. However, like any HRT it did take a few months to settle into my system. You can ask my partner! If you can be patient and give it some time it can work. Over the years, I was put on so many different types of pill. I couldn’t find one that worked and wouldn’t turn me into a ‘psycho’.
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) The symptoms of my endo came back within no time after coming off the pill. I found the doctors to be unsupportive and there was no follow up conversations to investigate further on how we could improve things.
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? None of the above tests have been offered to me.
Have you had adrenal fatigue? No
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? Before being diagnosed with Endometriosis I found it frustrating not knowing what was wrong with me which did leave me feeling low at times.
How old were you when your endo was confirmed? 23
How severe is your endo? My endo moved from a level 4 to a level 1 earlier this year after my third surgery.
What have you learnt about your fertility since finding out you have endo? I’ve learnt various facts from different surgeons, specialists and gynaecologist regarding fertility. I have heard that there is a slight increase of miscarriage for women with Endometriosis but there is great chance I will go on to have a successful pregnancy. I was once told that I should consider freezing my eggs for pregnancy however I need to have the AMH blood test to consider this option.
What fertility tests were you offered? E.g. AMH blood test. I need to book an appointment to have this test.
Does anyone in your family have endo? Other than myself being diagnosed with endometriosis no one else in my family has.
Have you changed your diet or lifestyle? My lifestyle and diet has dramatically changed since I was diagnosed. I have completely cut out refined sugars, gluten and dairy. It’s not just about what you put into your body, it’s also what you put on to your body, organic virgin coconut oil has literally become my best friend! I use it for EVERYTHING. Skin, hair and cooking! This is just one small thing I’ve switched to illuminate the number of toxins entering my body. I have also switched to using vegan makeup which is cruelty free and has no nasty chemicals you’ll find on makeup counters! I have also found that bringing a mindful routine and introducing yoga has really helped my symptoms as it has taught me all about diaphragmatic breathing, which is SO important for anyone suffering with Endo as this can calm down anxiety symptoms which have been connected to endometriosis.
Has a specialist ever mentioned the above dietary information? My gynaecologist I originally saw in the U.K advised me to go and see a nutritionist and have allergy tests, as I had classic symptoms for IBS. I saw the nutritionist and she advised me to illuminate dairy and gluten and eat organically. My allergy tests came back to show I had a gluten intolerance so I kissed goodbye to croissants and Ben and Jerry’s and welcomed in the best thing I’ve possibly ever done for my body. I have now been gluten free for 5 years and have completely cut out dairy from my diet in the last year.
What type of surgery did you have? Laparoscopy and LLETZ
Was a spray gel or mesh used? –
What symptoms do you have now? Since my surgery in April I haven’t had any symptoms that returned from my last surgery. I believe that my lifestyle through a holistic approach has dramatically improved my way of living.
What else was discovered during your surgery, if anything? Before my first laparoscopy surgery, I was told the ovarian cyst was 2 by 3 cm when in fact while the procedure was taking place they discovered it was 10 by 10 cm. I was in theatre for more than 4 hours and a half hours.
My last operation that took place in April my surgeon found ovarian cysts on my right ovary.
How many surgeries have you had? Will you require more? I have undergone three separate laparoscopies to remove an ovarian cyst and the endometriosis which was growing on my womb and right ovary.
Hopefully I won’t require anymore surgeries anytime soon!
Has the endo returned post-surgery? The Endo has not returned since the surgery.
Anything else you would like to add about your journey?
During my journey, I have learnt and discovered things which have encouraged me to never stop learning. I have found new ways to deal with my symptoms, pain and difficult situations. It has shown me to always fight for what you think is right. I would encourage everyone going through this journey whether they’ve been diagnosed or not, to not give up hope and keep on moving. We have one life and one body, we should start from within and work our way out. Eat for life and energy and always remember to leave a little sparkle where ever you go!