March is Endometriosis Awareness Month and this year, I want to talk even more openly about my story and my life with the condition. Here is the latest update on my journey with Endometriosis.
In case you are new here or are completed unaware I had Endometriosis and PCOS, you can catch up on my blog post from last year here.
(just a note: I had two more operations since then!!!)
In January, I went back to my gynecologist for my post operation check up after my operation in November. I had prepared a lot of questions to ask my doctor about the next steps for me and was hoping he would have some answers. Instead, I was face with two statements that completely broke me;
“I honestly don’t know what to do with you Sarah Jane… I’ve tried everything!”
“Hmm… ok so why don’t we take out your right ovary and see if the pain eases?”
At the age of 26, hearing that statement so casually shocked me. I spent the whole car journey home, and all weekend crying at what my new reality might be. I have constantly been thinking about the fact that I might never have my own children from my very first operation but now, being face with the idea of removing an ovary had my broken. It was becoming a reality very, very fast.
When a doctor who promises time and time again that he is going to fix you says that, what do you do? What if I trusted him completely and went ahead with removing my ovary, only to be still in pain? I would have been devastated.
The following Monday, I woke up with a fire in my stomach. I was not going to settle. I knew what I needed and my gynecoloist here was unable to do that for me. I need an excision laparoscopy (which removes the Endometriosis). All of my previous laparoscopies have been ablation, which just burns the Endometriosis.
The best way I can describe it for you is this: think of a tree. With ablation laparoscopies, you remove the branches & the trunk. With an excision laparoscopy, you remove the branches, the trunk AND the roots. Make sense? All my operations still left behind the root of Endometriosis.
EndoIreland have been incredible and gave me so much advice on what to do and where to go next. I got a list of names of specialists around Europe and made a plan. I contacted several in Europe and was willing to do whatever it takes. I sent an email to one doctor in Birmingham who has carried out excision laparoscopies on a few people I have become friends with through having Endometriosis. Within one hour of sending the email, I got a reply from his secretary asking if I was free to have a phone consultation in 4 days time. I couldn’t believe it.
I had to rush and get all my previous doctor’s note sent over before the phone call. This was such a struggle but thankfully my GP gave me a copy of all my records. My top tip for anyone else going through Endometriosis, PCOS or any condition, after every hospital visit – get a copy of the notes.
The very first thing the Endometriosis specialist said to me was this:
“Sarah Jane, I have looked at your notes and can see you have fought a battle and a half which was completely unnecessary…”
I had to hold back the tears. He spent over 55 minutes on the phone to me and he wanted to know how my life had been affected. No consultant has ever spent more than 15 minutes talking to me. At the end of the phone call, he said he could hear in my voice that I was exhausted both mentally, physically and emotionally. I sobbed the minute the phone call ended.
So what is happening now? I am having my 8th operation in 3 years on March 18th. I have to fly to Birmingham a few days before hand and will have to stay for a week. I will be out of work for at least 4 weeks and that’s something I am not looking forward to.
But here’s hoping this operation gives me back my life. I’m hoping I won’t be in so much pain daily. I’m hoping I won’t be on so much medication. I’m hoping I’ll be a normal 26 year.
Sarah Jane xx