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Elizabeth's Story

After experiencing multiple miscarriages and suffering with severe endometriosis, Elizabeth made the brave decision to have a hysterectomy.

"I haven't given up on the dream of being a Mum, but somehow I have found peace and acceptance for the person I am and the couple we are." 

MY EXPERIENCE

I don’t remember a time when I didn’t want to become a mum. Duncan and I married in 2001; excited about our future together and the family we would have. We’ve lost 7 pregnancies in total. 

I’ve lost track of how many medications and tests I have endured, with fertility clinics and gynaecologists. Infertility can seem like you are on a hamster wheel – getting nowhere fast. I have begged for help. At times I have been in so much pain I didn’t know how I would be able to get out of bed and function the next day. 

Despite suffering from heavy and excruciatingly painful periods since I was 10 years old, I wasn’t diagnosed with stage 4 endometriosis until I was 31. This was 10 years after my first miscarriage. The consultant told me it was one of the worst cases of endometriosis he had ever seen. I was advised that they were unable to see my womb, ovaries or tubes. It was not possible for them to remove any endometriosis or see the extent of the damage to my bladder or bowel.

I was initially offered Zoladex to shrink the endometriosis enough for me to have some of the tissue removed from my fused tubes, they were optimistic that this would give us a window of 3 months to try and conceive a baby. This optimism was short lived and at our next appointment we were advised that the endometriosis was the reason for my recurrent miscarriages. My body rejected the egg, treating it as if it was endometriosis.

WHY I DECIDED TO HAVE A HYSTERECTOMY

In 2011 I had a total abdominal hysterectomybilateral salpingoophorectomy and a bowel resection. Opting to have a hysterectomy was not a decision made lightly. Seeing my hysterectomy as being the best chance of having a happy healthy future and to get a quality of life that had never been available to me. Mentally and physically I was ready to draw a line under what has been the most difficult time of our lives. 

Three years on I can honestly say I wasn't prepared for the difficulty of coming to terms with losing my womanhood, experiencing some of my darkest days. Naively I thought this side would be easier. It has challenged our marriage and the relationship I have with myself. 

INFERTILITY AND PARENTHOOD 

For 10 years we chased the dream. We’ve applied to be adoptive parents multiple times; each time it wasn't meant to be. We’ve investigated surrogacy, which has also eluded us.  
 
My identity as I grew up was always around being a Mum; it's hard to break something that is as intrinsic as breathing. I haven't given up on the dream of being a Mum, but somehow I have found peace and acceptance for the person I am and the couple we are. I still struggle to see myself as a woman, perhaps I never will.  

Infertility makes you question whether you are worthy of parenthood & happiness, challenging your right of passage through life. It’s always present – new pregnancy announcements, christenings, visiting nieces and nephews (of which we are incredibly blessed to have the best in the world). It's always us that leaves empty handed with a lonely heart, but we wouldn't miss being part of their lives for anything. 

Life might not have been what we had planned, but there have been many highs along the way. This year I will celebrate 13 years of marriage to my best friend who makes me laugh and my heart sing; I graduated from university as a mature student; I have gotten further in my career than I ever thought possible; I can ride a motorbike and, finally, I don't have any periods!

I hope that my story will help others with their pathway through this illness and that in time to come there will be a cure for endometriosis.

- Elizabeth

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