Jessica's Story "It took seeing five doctors to get one that would take one step further"

After years of painful periods since age 16, and on medication for period pain since then, I was finally diagnosed with endometriosis by my Doctor at the age of 31. It took five doctors (when living in three different countries - NZ, Australia and the UK)  to get one that would finally take the further step to make the decision to get a scan done, which showed that I had a chocolate cyst on my left ovary and that it was likely that I had endometriosis. The decision was also made because we had been trying for children for a year without success.

My symptoms since 16 were terrible cramping period pain, which I was told was normal and some women just experienced worse pain than others (and basically that my pain level must have been low to feel it so badly). Things started to change when I was 28 and living in England. I suddenly got very down for no apparent reason; I was in a good relationship and had a good job with lots of friends. We returned home to see if my mood would improve; it didn’t. I got more agitated and teary, like having PMT all the time. I had always had bad PMT when I had my period but never this feeling of constant anxiety and unhappiness. Again, there was no reason for it - I had lots of friends, family support, and a good job. I was starting to feel like I was going mad. Then I finally got diagnosed and boy did I feel better having been told there was something physically wrong and that was probably why I was feeling so unlike my real self.

After the scan, I was referred to a gynecologist to discuss endometriosis and infertility. The gynecologist was extremely kind and helpful. We were initially very anti hearing about IVF and wanted to conceive naturally and were advised that the first thing to do was have the operation to remove the cyst and check for endometriosis. The waiting list was long but with having the cyst it could mean my time on the list could be made urgent. However, after waiting six long and hard months we still had no joy. We made the decision that we had to spend the $8000 to have the operation privately, and it was the best decision we ever made. I felt instantly better, I was a different person. I still had periods but not the extreme pain and much less blood than I usually had. Best of all, my mood returned to being me again and I felt happy and in control of my life.

We tried for children for another six months after the operation with no success. We then saw the gynecologist again and IVF was recommended. We had our first cycle of IVF in and had four embryos from that cycle; one of those embryos is our boy Jack (now fourteen years old).

I have been extremely lucky to have had huge support from my husband and friends, plus meeting people who had similar experiences and are such positive nice people. Now that I feel better I would like to help other women who suffer from endometriosis and raise awareness in the community. I think the endometriosis group is a brilliant organisation and already feel that I am no longer alone, just after attending one meeting. 

The things I found frustrating with endometriosis, is the years of pain I have had and been told it was basically all in my head and I was just an overly emotional person, not that it could have been the pain that was causing the mood and the hormones that were making me feel so bad. Also, the waiting list to get anything done on the public system was diabolical - if we hadn’t had our savings to pay for the operation I don’t know what I would have done. The NZ health system needs to realise this is a real and painful disease that many women have and they need to make it more of a priority than it currently is. My endometriosis was very severe and my gynecologist did a great job - I am one of the lucky ones. If it comes back again after children I just hope that the system will be able to do another op without us having to find the funds again, we won’t get insurance now as I have already been diagnosed, it’s a real catch-22 as I am sure most women in our group have already realised.