Medically induced menopause for the past 7years - enough is enough!

For the past 16 years I have quietly dealt with a lot of health blows that most women wouldn’t want to think about let alone talk about!

At the age of 16 it was dicovered during an investigative scan of my kidneys that I had a very large growth on my left ovary. Within a few days I underwent surgery to remove it. During surgery the growth was found to be 19cm in diameter and 3kgs in weight but thankfully histology showed it was a benign cyst.

Unfortunately the ovarian cysts continued to appear time after time and I was eventually diagnosed as having Polycystic Ovarian Syndrome (PCOS) at around the age of 18.

By the age of 21 my body and hormones were not reacting to the PCOS treatment like they should have and I ended up in hospital in 2009 requiring an emergency 2unit blood transfusion as my periods had become so prolonged that I actually came close to having bled to death.

After this I was seen again by the gynae department and underwent D&C’s and hysteroscopies and had two attempts at an IUD Mirena which over a few years were both very unsuccessful for me.

More scans lead to the diagnosis in 2012 of Adenomyosis on top of the PCOS. It was at this time doctors decided that I, (then 24 years old) would need to begin on hormone therapy to effectively put my body into medically induced menopause.

I have battled on since, in medically induced menopause for the past 7 years unsure of what my future might have to hold. It wasn’t until after some unusual symptoms developed in mid 2019 that I (now aged 31) started asking questions.

Over the past 6months referrals for me to the ChCh women’s hospital gynaecology department were declined 3 times. (One of those referrals was even made by the Acute Gynae Assessment Service while I was actually in hospital with my symptoms.)

I was incredibly fortunate to find a limited one off funding source to fund one appointment with a private gynaecologist.

I had this appointment in early December 2019 where I could ask all of the questions and raise all of my concerns as I had done previously in various letters to the public gynaecology system.

I got answers! I found out:

- I have been taking an unusually large dose of hormones for the past 7 years

- These hormones are typically only used as a short term solution

- There is no research undertaken on women who have taken these hormones as long as I have so therefore there is no way of knowing the side-effects or risks that may have developed during, or may develop after the prolonged use of these hormones

The private gynaecologist strongly recommended that I do not withdraw off the hormone medications right now as there are real concerns that the heavy bleeding will return and could in fact be a very real risk to my life once more as it was in 2009.

The private gynaecologist strongly agreed that the very best outcome for me would be for me to have a hysterectomy (in his words “she likely is riddled with undiagnosed Endometriosis”) and therefore can only then stop taking the hormone therapy (which consists of 5 tablets a day!)

The gynaecologist felt the accumulative effect of the large dose of hormones may also be causing some of my significant health issues that I’m struggling with at present (I.e chronic fatigue.) He also said he felt the surgery would have great benefits for me and will greatly improve my quality of life.

The problem now is trying to get back into the public system where so far they have refused to see me, let alone answer any of my questions or concerns which I have written to them directly about. Then there is all of the waiting!

For the surgery to be done privately with the gynaecologist that I saw, it would cost at least $20,000 which I have absolutely no way to fund. This is why this page has been set up.