Hello fellow spoonies!!!
My name is Helene and I am one of the co-founders of The Spoonie Society. I, like Dominique, suffer from Endometriosis and PCOS and more recently I've also been diagnosed with Adenomyosis. I wanted to share more about my story as I think it is very important to raise awareness as well as educate and if my story can help even one person then I know it's all worth it.
I was originally diagnosed in August 2018 after being in and out of the ER for two months in agony which I later found out was a cyst rupture. I was diagnosed with stage 4 endometriosis via ultrasound and had surgery within two weeks (ablation). During surgery I had cysts removed from both ovaries and endo removed from my fallopian tubes, uterus and bowel. My reproductive organs were all adhered to one another and were all separated during surgery. I only stayed one night in hospital however the pain never really went away. 4 months post op I was still in alot of pain, if not more and was referred to a pain specialist as my surgeon thought it was nerve pain. Then in July 2019 I underwent a 7 day ketamine infusion which did help with my nerve pain however I think my nerve pain was masking the deep aching pain that was underneath. I was soon running out of options and still in pain and was then put on Zoladex.
For anyone who may not know, Zoladex is an injection that is administered once every 28 days that chemically induces menopause. I had hot flashes, mood swings and all the other perks of menoapuse. I tried Zoladex for about 9 months and initially it did work quite well for me but in May and June of 2020 I was at my breaking point. I was in debilitating pain with no real solution. Unfortunately my surgeon did not want to operate as he said I was too young and he didn't really have a solution for me as well as said it wasn't my endo. I like to think I am proactive when it comes to my health and I have good intuition. On my second ER visit in June I was offered emergency surgery as they thought this was the next logical step, I decided to decline as through the Australian public system you aren't able to choose your surgeon as I did not want a random or under-qualified surgeon performing my surgery and felt there had to be a better solution.
Through the two years following my first surgery I had done alot of reading and educating myself and discovered excision surgery. I had realised there was of course a reason I didn't find relief with my first surgery as ablation very rarely yields long terms results. I had decided to get a second opinion from Dom's surgeon and it was the best thing I ever did. I saw him in June after my ER visits and was booked in for surgery in September. I knew that surgery was the next step as I had run out of options and nothing was helping my pain. About one to two months before surgery I underwent a procedure of having nerve blockers under sedation either side of my spine to help numb the nerves that connect to my pelvic region. I did this procedure through my pain specialist to help give me some relief before surgery and make the healing process easier.
I then underwent my second surgery in September in the height of covid and spent 4 nights in hospital where I had stage 4 endometriosis removed again. My bowel, ovaries, uterus and fallopian tubes were again adhered to one another and were incredibly diseased. I also had endometriosis growing on both of my ureteurs (tube from kidneys to bladder) and my left kidney was so diseased that if it was left any longer it would've stopped functioning. Overall it was a 4 hour surgery with my surgeon saying it is one of the worst cases he's seen.
I was then booked in for revision surgery in March 2021 and had both fallopian tubes removed and lost my right ovary, as well as more endo excised.
Since then I have undergone multiple other procedures and am in the process of being diagnosed with a handful of other chronic conditions.
Although this isn't the end of my Endometriosis journey I do hope sharing my experience can help you advocate for yourself and your health.