Blog #17, Annabelle, 27, Brisbane
I spent almost 10 years believing that the intense pain I would go through every month was normal and that it was just a part of being a woman. I was under the impression that I just had to push through and deal with it as best I could
Approximately how long did you have symptoms for before being told you have endo?
More than 5 years
What symptoms did you have before surgery?
Intense cramps before and during my period to the point where it interfered with work.
What were you diagnosed with initially?
How many doctors and specialists did you see?
Multiple GP’s and a gynaecologist that specializes in endometriosis and difficult periods.
How many ultrasounds did you have and was anything abnormal noticed?
I had a regular ultrasound in my early 20’s after experiencing terrible pain all through my teens. That ultrasound came up clear. The problem persisted and I finally saw the gynaecologist in January this year. He did an internal ultrasound and found a 5cm cyst on my left ovary and possible evidence of endometriosis. It wasn’t until I had the surgery to remove the cyst that we realized I had extensive endometriosis.
Endometriosis is usually caused by excess of estrogen and poor liver detoxification. Have you ever been told this information?
No I had not.
With liver function in mind, have you ever had glandular fever?
Yes, around the time I was 10-11.
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 and off the pill to try and manage the pain.
If yes to HRT, what were your side effects? Did you improve or worsen on HRT?
I was hesitant to take the pill as I had heard about some of the not so nice side effects. Eventually I just got so sick of the monthly torture that I decided to give it a shot. I did experience some serious hormonal swings in my first few weeks but things have balanced out now. Between the pill and surgery my cramps are nowhere near as bad as they used to be.
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)
Yes, I have been on and off the pill since my early 20’s. I didn’t really experience bad side effects coming off it.
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 you had adrenal fatigue?
I’m not sure. I do fatigue quite easily so it’s a possibility.
Do you know if you have had an elevated white blood cell count in the past?
Not that I’m aware of.
Have your blood tests for hormones come back ‘normal?’
No, the only blood test I’ve had for this problem is to check for ovarian cancer.
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?
I’ve had issues with anxiety and low points since my early teens but never fully fledged depression. When I went through the diagnosis and surgery I was already in a low point but the whole situation didn’t make things easier! I’ve never been medicated but I have been seeking professional advice on managing my mental health.
How old were you when your endo was confirmed?
How severe is your endo?
Quite severe, it had spread to other organs like my bladder.
How do you manage your endo?
I’ve had surgery to excise the endometriosis and I take the pill to regulate my menstrual cycle.
What have you learnt about your fertility since finding out you have endo?
The specialist advised me that I won’t know if the endometriosis has affected my fertility until I start trying to fall pregnant.
What fertility tests were you offered? E.g. AMH blood test.
I was not offered a fertility test.
Does anyone in your family have endo?
Have you changed your diet or lifestyle?
Not really no.
Have you seen an integrative practitioner, medical herbalist, naturopath or similar? If yes, what did you learn?
What type of surgery did you have?
Ovarian cystectomy and recession of endometriosis.
Was a spray gel or mesh used?
Spray gel I believe. It looked like glue over my incisions.
What symptoms do you have now?
What else was discovered during your surgery, if anything?
The surgery was originally to remove the 5cm cyst on my left ovary and to check for evidence of endo. After finding I had a severe case of endo the gynaecologist removed what he found.
How many surgeries have you had? Will you require more?
I’ve had 1 surgery. For now it doesn’t look like I will need anything else but if the endo comes back then that will change.
Has the endo returned post-surgery?
It’s only been a few months but the specialist did advise me it could come back.
Anything else you would like to add about your journey?
I spent almost 10 years believing that the intense pain I would go through every month was normal and that it was just a part of being a woman. I was under the impression that I just had to push through and deal with it as best I could. Now I know there was a reason and I’ve taken measures to fix it that have actually worked! I just want other women to know that you don’t have to the put up with the pain, there are answers and people out there who can help you.