Blog #16, Libby, 32, Toowoomba, Australia
When speaking to the specialist the morning after my surgery she said it was the worst case of endo she has seen. She kept calling me brave brave girl, and then kissed me on the forehead which made me feel a bit like a fraud as I hadn’t really had many symptoms.
Approximately how long did you have symptoms for before being told you have endo?
On and off for 17 months.
What symptoms did you have before surgery?
I always had ‘normal’ PMS symptons: painful breasts, irritability, occasion migraines and bad cramping but nothing Panadol, a day in bed and heat couldn’t handle. Three times in the 17 months before diagnosis I experienced unbearable vomit-inducing period pain. The last time I was lying on the shower floor unable to move for two hours. My husband was away and I remember thinking ‘these have to be contractions, I’m one of those weird girls who didn’t realise she’s pregnant! JD’s going to come home to a surprise baby!’
What were you diagnosed with initially?
A complicated ovary cyst.
How many doctors and specialists did you see?
One doctor and one specialist.
How many ultrasounds did you have and was anything abnormal noticed?
Two ultrasounds six weeks apart. The first picked up a 4.5 cm cyst. The second showed it had grown to 6cm.
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?
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?
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?
No tests. I only found out I have endometriosis five days ago.
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?’
I have just had one blood test. The specialist was worried as the CA125 (tumour blood levels) test was high and she insisted I have surgery that week. Endometriosis can have that affect, but I was also worried it might be ovarian cancer.
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?
How old were you when your endo was confirmed?
How severe is your endo?
When speaking to the specialist the morning after my surgery she said it was the worst case of endo she has seen. She kept calling me brave brave girl, and then kissed me on the forehead which made me feel a bit like a fraud as I hadn’t really had many symptoms. She said if I was 40 she would have done a hysterectomy.
How do you manage your endo?
The treatment plan mentioned by the specialist is going on the pill or having injections to put me in a menopausal state. I also will need a second surgery in 6 months to try and ‘unstick’ my uterus and clean up more tissue.
I am looking in to more natural approaches such as Arvigo Maya massage, the endo diet and identifying the cause of my endo.
What have you learnt about your fertility since finding out you have endo?
What fertility tests were you offered? E.g. AMH blood test.
Does anyone in your family have endo?
Have you changed your diet or lifestyle?
Yes, I will be. However I am sitting here eating chicos while filling this out so it is going to be something I struggle with.
Have you seen an integrative practitioner, medical herbalist, naturopath or similar? If yes, what did you learn?
I am planning to.
What type of surgery did you have?
Hysteroscopy, curette, laparoscopy and ovarian cystectomy.
Was a spray gel or mesh used?
Unsure. I’m guessing a spray gel? It looks like I have super glue over my scars.
What symptoms do you have now?
I am nervously awaiting my first period after surgery to find out.
What else was discovered during your surgery, if anything?
Endo on all of the organs (I can’t remember the exact long list). My uterus is stuck where it shouldn’t be.
How many surgeries have you had? Will you require more?
One, with a second to come in six months.
Has the endo returned post-surgery?
Hopefully not yet!
Anything else you would like to add about your journey?
It hasn’t been a journey it’s been a sudden unexpected trip. I feel lucky to have been mostly pain free for years, but I wish my symptoms were clearer years ago so I might have caught it before it spread so far.