Blog #14, Lauren, 20, Auckland
Fight to get the care that you deserve and always try to find the good in every day.
Approximately how long did you have symptoms for before being told you have endo?
Approximately 7 years.
What symptoms did you have before surgery?
Irregular periods, breast pain, extremely painful cramps, lower back pain, mood swings, tiredness, bloating
What were you diagnosed with initially?
It was originally overlooked and I was put on the pill. After an ultra sound it was expected that I might have PCOS so I was referred to a specialist in Christchurch.
How many doctors and specialists did you see?
1 Doctor, 1 Gynecologist PCOS specialist(CHCH), 1 Gynecologist Endometriosis Specialist (CHCH)
How many ultrasounds did you have and was anything abnormal noticed?
Initially 2 I think but have had multiple since then. Multiple cysts were found on my ovaries.
Endometriosis is usually caused by excess of estrogen and poor liver detoxification. Have you ever been told this information?
With liver function in mind, have you ever had glandular fever?
Nope, luckily not.
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 have been on multiple forms of the contraceptive pill since approximately age 15 and then along with cyproterone. Mirena inserted during surgery when 18.
If yes to HRT, what were your side effects? Did you improve or worsen on HRT?
Contraceptive pill made my very depressed and out of character and didn’t help the pain, was more to stop the period. Initially after mirena was inserted ended back in hospital in pain but after about 4 months its started to settle for about a year, pain is now getting progressively worse and more often. Also experienced some weight gain from the mirena.
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)
Went straight from the pill to Mirena so unsure yet.
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?
Not yet no.
Have you had adrenal fatigue?
Do you know if you have had an elevated white blood cell count in the past?
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 wasn’t asked.
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?
Absolutely, have been low and probably depressed. Its hard not to at some point. Never been on anti-depressants tho.
How old were you when your endo was confirmed?
How severe is your endo?
Stage 2 (It was very spread out so had my ovaries relocated during surgery one)
How do you manage your endo?
FODMAP diet, lots of sleep and rest, pain medication, mirena
What have you learnt about your fertility since finding out you have endo?
What fertility tests were you offered? E.g. AMH blood test.
N/A at this stage
Does anyone in your family have endo?
Have you changed your diet or lifestyle?
I have removed gluten completely from my diet and limit dairy intake.
Have you seen an integrative practitioner, medical herbalist, naturopath or similar? If yes, what did you learn?
What type of surgery did you have?
Laparoscopic surgery. (Relocation of ovaries also during first surgery)
Was a spray gel or mesh used?
What symptoms do you have now?
Lower back pain, intense cramps, painful intercourse, fatigue, breast pain, very irregular periods.
How many surgeries have you had? Will you require more?
I have had 3 so far, all in Christchurch. I am having my 4th surgery next Tuesday.
Has the endo returned post-surgery?
Anything else you would like to add about your journey?
I know that I am just very lucky that something showed up odd in an initial ultrasound otherwise I do not think I would be in the position I am today. I just want anyone that experiences painful periods to know that it is not normal. Do not let anyone tell you otherwise, even your parents because it is real and it is not normal. Fight to get the care that you deserve and always try to find the good in every day.