Blog #13, Annie, 21, Tauranga
I am no longer upset I have been given this in life, although I do have my moments. I am realising that I not a victim and that I am meant to do something with this journey
Approximately how long did you have symptoms for before being told you have endo? Since I got my first period, however my Mum recalls, a few years before my period starting, I would get terrible cramping pains in my lower abdomen most months. So roughly 6-7 years from period to diagnosis.
What symptoms did you have before surgery? Intense cramps, bad lower back pain, hip and leg pain, constipation and diarrhea, exhaustion/fatigue, mood swings, irregular periods, painful intercourse, bloating. Have probably missed some.
What were you diagnosed with initially? I was never diagnosed with anything. I was always overlooked and told they were bad periods.
How many doctors and specialists did you see? Probably 5 doctors. 1 specialist who diagnosed me but whose understanding on endometriosis wasn’t great. SO now have another specialist.
How many ultrasounds did you have and was anything abnormal noticed? 2 ultrasounds, nothing found
Endometriosis is usually caused by excess of estrogen and poor liver detoxification. Have you ever been told this information? Never
With liver function in mind, have you ever had glandular fever? YES
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? I was on the pill from the age of 15 through to 20. Whilst 20 had a mirena inserted.
If yes to HRT, what were your side effects? Did you improve or worsen on HRT? I was on the pill whilst none the wiser to having endometriosis so not sure if I had any side effects nor am I sure if it helped or worsen my symptoms. The mirena I am not 100% sure how I feel, it has given me acne and I did get headaches for a while. It helped with my pain for the first year however my pain and other symptoms are now coming back.
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) I went straight from being on the pill to the mirena so not sure
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 these have been offered to me by GP’s or specialists. I have found out about these options from my own research
Have you had adrenal fatigue? Yes
Do you know if you have had an elevated white blood cell count in the past? Not sure
Have your blood tests for hormones come back ‘normal?’ Never been tested to my knowledge
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 I often feel low and have often wondered if I have depression. I have never been on anti-depressants for depression (was on low dose 10mg anti-depressants for endo however)
How old were you when your endo was confirmed? 18
How severe is your endo? Have never been told what ‘Stage’ I am
How do you manage your endo? Trying to be healthy. I live pretty much a dairy free diet and try to limit my processed foods and gluten.
What have you learnt about your fertility since finding out you have endo? No
What fertility tests were you offered? E.g. AMH blood test. None
Does anyone in your family have endo? To my knowledge, no
Have you changed your diet or lifestyle? Yes. I was a fulltime smoker, huge party animal and not very healthy. I now go to the gym, limit my drinking/partying etc and really watch what I eat.
Has a specialist ever discussed dietary changes in conjunction with helping endometriosis? Yes
Have you seen an integrative practitioner, medical herbalist, naturopath or similar? If yes, what did you learn? I have been to a naturopath. It was so long ago and I wasn’t ready to listen and make changes in my life so I really don’t remember what she said.
What type of surgery did you have? Laparoscopic
Was a spray gel or mesh used? Not sure?
What symptoms do you have now? Irregular periods, unbearable cramps, lower back pain, fatigue, painful sex, constipation, (all I can think of right now)
What else was discovered during your surgery, if anything? N/A
How many surgeries have you had? Will you require more? I have had 2, and imagine I will need more.
Has the endo returned post-surgery? Yes both times.
Anything else you would like to add about your journey? I am no longer upset I have been given this in life, although I do have my moments. I am realising that I not a victim and that I am meant to do something with this journey! I am on a mission to create awareness, help others who suffer and tear down the stigma of talking about periods being ‘taboo’. I also believe that we are the only ones who can help ourselves. I am starting to lose faith in the ability of others and trust myself more. With good food, exercise, rest and positive outlook, mindset, I know myself, and others, will be able to beat this disease.