Blog #15, Rebekah Zoe, 25, Adelaide, South Australia
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If you’re not happy with your diagnosis (or lack of one) move on and find another doctor!
Approximately how long did you have symptoms for before being told you have endo?
I had symptoms of Endo for about a year before I was able to finally have a laposcopy done to officially diagnose.
What symptoms did you have before surgery?
I had ridiculously heavy, painful periods, migraines, bloating and irregular periods.
What were you diagnosed with initially?
I wasn’t diagnosed with anything initially – just told it was my period and to get over it.
How many doctors and specialists did you see?
I ended up seeing my regular GP who referred me onto my local public hospital. There, I saw a different specialist every appointment so there was no continuation of care. As I was only 13 at the time, Mum took me to a private ob/gyn who got me in for a laposcopy and finally diagnosed me. Since then, I have been to five other fertility specialists.
How many ultrasounds did you have and was anything abnormal noticed?
Back then, until I went to see my private ob/gyn, no one listened and no one would ultrasound me. When I did eventually have an ultrasound, I was diagnosed with PCOS (Polycystic Ovary Syndrome) as well as thought to have Endo. He noticed a lot of cysts and hinted at the Endo.
Endometriosis is usually caused by excess of oestrogen and poor liver detoxification. Have you ever been told this information?
To be honest, I’ve never actually been told anything by anyone in the medical profession except that I do have Endometriosis. I’ve spent hours and hours researching myself online.
With liver function in mind, have you ever had glandular fever?
No, I haven’t.
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?
When I was around 15, I was put on the pill to try and regulate my periods. I was on the pill for about three years. I was then back in hospital with the same issues and was advised to give the Mirena a try. I did so but had it taken out within a few weeks due to the painful cramping and random bleeding it caused me.
There are many tests available that can provide useful insight into endometriosis. For example, salivary hormone profile, adrenal hormone profile, urinary and oestrogen metabolites. What tests have been offered to you?
I’ve never been offered any tests or any help with my Endo. I’ve been offered and have done quite a few for my PCOS but never any for Endo.
Have you had adrenal fatigue?
Nope, never been diagnosed with adrenal fatigue. But, I’ve had just about all of the symptoms – insomnia, depression, weak immune system (I always seem to have a cold! Haha!).
Do you know if you have had an elevated white blood cell count in the past?
I did when I was a child. Mum took me to a bunch of specialists because I had chronic migraines and eczema. Wow – I didn’t even realise this was linked to Endo.
Have your blood tests for hormones come back ‘normal?’
Hahaha – never. 😛
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?
Yes. Owen (mu partner) and I have been actively trying to conceive for the last 14 months. I’ve been monitored for the last year through our fertility specialist and I’m in and out of the clinic for blood tests all the time. Prior to this though, I’ve not had a bunch of tests done before.
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?
Definitely! During my teens when my symptoms for both Endo and PCOS were at their worst, I missed two years of high school and never really left the house. Not because I didn’t want to but because I was in so much pain and bled so randomly. I remember just feeling so lethargic and low ALL the time. I felt like I had nothing to look forward to. I did end up seeing a psychiatrist and was put on low dose anti-depressants for a while. These feelings did subside when the rest of my symptoms did after high school. I’m just wary of my emotions now and make sure I keep a positive outlook on life.
How old were you when your endo was confirmed?
I was 14 years old.
How severe is your endo?
I have Stage II moderate Endometriosis.
How do you manage your endo?
Well, in my later teens and early 20’s I was having a hysteroscopy every 6 – 12 months to remove what they could each time but now it’s all through lifestyle choices I guess. I eat well, exercise and when I do have a flare up and bloating, I look after myself first.
What have you learnt about your fertility since finding out you have endo?
A lot! Especially since starting treatment with our fertility specialist. I’ve learnt that my fertility is ridiculously low because of my Endo as well as PCOS. But, I’ve also learnt that having Endo won’t stop me from getting pregnant. I am determined!
What fertility tests were you offered? E.g. AMH blood test.
I have had an AMH blood test, multiple surgeries to check on this and remove Endo as well as a bunch of others to do with my PCOS.
Does anyone in your family have endo?
Not that I know of.
Have you changed your diet or lifestyle?
I sure have! I try and eat as healthy and cleanly as I can. Owen is a fitness guy so we try and cook all our meals together. I’ve also learnt to look after myself first and everything else will follow. I walk a lot, I avoid stress and drama and try and stay positive no matter what.
Has a specialist ever mentioned the above dietary information?
I’ve been told plenty of times about keeping a healthy weight and diet. Never anything specific for Endo though.
Have you seen an integrative practitioner, medical herbalist, naturopath or similar? If yes, what did you learn?
What type of surgery did you have?
Since being initially diagnosed, I’ve had two laposcopies and a bunch of hysteroscopies (curettes).
Was a spray gel or mesh used?
I’ve had spray on stitches for my laposcopies.
What symptoms do you have now?
I still suffer with painful periods, migraines and random flare ups of cramps and bloating.
What else was discovered during your surgery, if anything?
Nope, nothing. Luckily!
How many surgeries have you had? Will you require more?
In total – 13 over the last 11 years all for Endo or PCOS. More than likely – we’re moving on to IVF in the next month or two so can we count the egg retrieval? Haha! But seriously, I will probably go back and have another curette after I’ve had our first child.
Has the endo returned post-surgery?
There are bits for me that they can’t reach properly so it always returns unfortunately.
Anything else you would like to add about your journey?
Not really… but I do have some advice to anyone out there suffering with Endo… If you’re not happy with your diagnosis (or lack of one) move on and find another doctor! It is your body – not theirs.