Jenny

Hi everyone :-) 

I've had Endometriosis symptoms since aged 16 and received a range of diagnoses including PCOS, IBS, told 'it's in your head’.
Over the years I had laparotomy and laparoscopies and had multiple treatments that were not always what I wanted but went along with them as I didn’t have the strength to keep fighting, even though things just didn’t seem right.

I was officially diagnosed with Endometriosis in September 2020 following an emergency laparoscopy of ovarian torsion.  The diagnosis was bitter sweet. I recall being told the diagnosis but no explanation of what that actually means or treatment options  I was followed up via telephone in early 2021 and subsequently scheduled for endometriosis excision surgery.

Surgery was in July 2021 but this was abandoned after the surgeons made two incisions.  They were unable to get through the adhesions and the surgeons did not have the skills or instruments to pursue with the surgery. I was so tearful waking up and hearing this news. Both me and husband had been looking forward to this surgery, being told ‘this will cure you  This will make everything better’. My husband collected me from hospital and gave me a hug  I was so upset. 

I arrived home and he told me he had been researching private gynaecologists, specifically a BGSE accredited surgeon. We met with him end of July who ran further tests and I was also diagnosed with Adenomyosis.  I had a total hysterectomy in August 2021. 

Endometriosis and Adenomyosis have both taken a lot from me both physically and emotionally but it has also given me a lot.  It's given me a high pain threshold (which was helpful recently when I broke a tooth) but also wonderful friends who are non-judgemental and show so much kindness that has really helped keep going. 

I had approximately 19 years of feeling unheard and unrecognised for the symptoms I had which is many of the same things I hear from others waiting for diagnosis and even after diagnosis. 

Endometriosis is a big part of my life, checking in daily with how I am feeling physically and emotionally but aside from that I am nurse, a wife, a daughter and I have two wonderful nephews who are just incredible and mean the world to me. 

Finding justice for all of us with a diagnosis or under investigations for Endometriosis means a lot to me, so much so that I have completed my Support Group Leader training for Endometriosis UK.  I am really excited to be working towards being a part of this wonderful charity and helping all of us to live well and live happily with Endometriosis :-)