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  • Writer's pictureSarah Rose

A much-needed update

I can't believe how much I have dropped the ball on this blog. My last post was in April and so much has happened since then I don't even know where to begin. So I'll try and cover what has happened to me in the last six months...

My Endometriosis Diagnosis Journey

So, after discussing my symptoms on Instagram in March 2019, so many people got in touch with me and pointed out that I had the symptoms of Endometriosis. I remember feeling something inside me click, as I read more about the symptoms and how much they paralleled with what I was going through I just couldn't believe that this had never been mentioned to me before. I was overwhelmed and just didn't know how to process all of this. It had been ten years. TEN. I had fought so hard for my Interstitial Cystitis diagnosis in 2016, I had fought even harder for my Pelvic Floor Dysfunction diagnosis, I didn't know if I would ever have the energy or the drive to fight for this.

A very, very long story short, but after chatting with @endoawareni and Endo Ireland I learned that getting an endometriosis diagnosis was not an easy journey. In N.Ireland we don't have any endometriosis specialists or any BSGE Endometriosis clinics. Most laparoscopies are performed by gynecologists who do not specialize in endometriosis, this means only certain areas of the pelvis are checked and if any endometriosis is found it is removed via ablation. After reading up and learning that Excision Surgery was the gold standard of treatment, this was the road I wanted to go down. However, with no excision specialists on the island of Ireland, we only had a few options...

  1. Pay privately and get surgery in England

  2. Try and access the EU cross directive and see an excision specialist in the EU

  3. Just go via the NHS and get ablation in NI. There was a 15-18 month waiting list just to have a consultation with a GYN, then for a lap and ablation it was another 15-18 month waiting list... this was really not an option for me.

After much decision, we opted to go for surgery in England in July, with a surgeon that often treats womxn from South & North of Ireland. A week after my 28th birthday I went under and woke up with four little incisions on my body. Endometriosis was found in my pelvic cavity, overlaying my bladder and in my pouch of Douglas.

It's official. I have endometriosis.

Without the help of the online community on Instagram, I would never have heard of Endometriosis. I would never have read up or investigated or learned about excision surgery. I would still be struggling, lost in the unknown. It feels like for the first time in my life I am not scared in my body, it feels like finally, after a decade of feeling lost, I am finally home.

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