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Anyone with endometriosis here suffering with ovarian cysts?

(2 Posts)
HollyM85 Fri 16-Nov-18 21:20:35

Hi ladies,

I had some great news today and wanted to share it for anyone suffering from endometriosis and associated cysts.

I was diagnosed with endometriosis more than 10 years ago, and had 1 large cyst (12cm+ and 10cm) removed from inside each of my ovaries back in 2015. It was a horrible operation in the end, and took several hours to remove them whilst trying to save both my ovaries, as the surgeon knew I wanted to have children.

Unfortunately when I had my follow up scan in 2016, I was told that the cyst had returned in my right ovary, and I now had 2 inside my right. They were measuring at around 6cm each. My left ovary remained clear though.

Anyway, long story short, I had a miscarriage this summer after 7 years of trying to conceive. We were already on the waiting list for NHS IVF since Christmas, which finally came through a month after I miscarried.

During our first appointment they scanned me and the IVF hospital doctor said that the cysts were too large in my right ovary, and they wanted me to have them removed before they'd consider starting my NHS IVF. They were concerned that the cysts were blocking my right ovary, so they wouldn't be able to get any eggs out of the right one, and they might not get enough out of my left ovary to continue.

I was adamant that I didn't want to go through the surgery again, as I had to have 2 months off work last time, and the cysts started to come back within a few months anyway, so it was all for nothing. To me, the cysts were small, as they were only half the size that they had been in 2015 when I last had the surgery. An hour of back and forth and the dr finally agreed to at least let us try to start IVF and see if they could get enough eggs out of my left ovary. If they couldn't, then I'd agree to have the surgery on my right ovary as a last resort.

A week later, the doctor called me on my mobile to try and convice me yet again to have the surgery before they'd start IVF. The waiting list for surgery is generally a year in our area (Wales), which I wasn't prepared to wait for, on top of then having to go back on the IVF wait list again afterwards.

Finally yet again I convinced her to go back to plan A of at least trying to get enough eggs out of my left ovary. But the phone call left me in tears and I spent all weekend trying to Google ways to reduce endo cysts naturally.

I came across a study carried out in Italy where women were given a vitamin called NAC three times a day, for three days a week, for three months. More than half of the women's cysts either shrank or disappeared completely.

I found Holland & Barrett sold the tablets, and so I figured it was worth a try. I didn't tell any of my doctors, and for the past 3 months, I've been taking these NAC tablets 3 times a day, every Monday, Tuesday and Wednesday.

I also found research on the link between dioxins and endo, which are found in normal sanitary towels and tampons. I threw out all of my old Always pads and Tampax and switched everything to a brand called Natracare.

I also stopped drinking out of plastic bottles, and filtered my water with a carbon filter.

I went in for my IVF baseline scan today at the hospital, and the cysts have all but disappeared, and my right ovary is functioning normally again and I'm ready to have my eggs taken in 10 days time......

Just wanted to share in case anyone else is in the same situation

x

molinski Fri 16-Nov-18 21:38:34

@HollyM85 hi, wow sounds like you've had quite the journey! Was wondering about the dioxins you mentioned in always pads and tampons? Can you explain more about this? I have endo but no cysts x

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