Welcome back to the blog! This month Fridays are going to focus on Endometriosis experiences and first up Sammy from Sewcrastinate (IG: @Sewcrastinate_uk ) is going to be sharing her experience of trying to get a formal diagnosis of Endometriosis alongside living with another complex health condition. I am extremely grateful to Sammy for being willing to share her experiences, its a brave thing to do and I’m sure I speak for all of us when I say thank you to her for sharing with us. Take it away Sammy!
At 29 years old my endo diagnosis journey has begun; but my menstrual health issues predate this by many years.
At 14 years old I found myself unexpectedly in excruciating abdominal pain one night, a trip to the hospital revealed ovarian cysts on both ovaries. This was highly unusual and unexpected as I hadn’t even started menstruation yet. I had to have surgery to remove these.
Due to previous surgeries from when I was born I wasn’t able to have keyhole surgery, so open surgery it was. Not many 14 year olds expect to have a caesarian style scar and hear the words ‘you may find it difficult to have children due to the severe scarring’. To stop the cysts coming back I was placed on the pill.
I was also born with a rare disease named Hirschprung’s, the only cure of which is surgery to remove part or, in my case, all of the large intestine. So at age 14 I had already had 3 major surgeries.
From age 14 till now I have always suffered with bad abdominal pain, with no pattern to it. Each trip to the doctor has always resulted in phrases such as ‘try a different pill’ , ‘you’re a woman, some women have this much pain’, and ‘it’s just stress’. I’ve always come away feeling like a burden and that maybe it’s all in my head.
2020 was the year I had finally had enough of being in pain with no resolution. I was sent for yet another ultrasound and this time I was lucky enough to have someone that actually listened, she sent me to a specialist sonographer who specialises in endometriosis. It was confirmed there are signs on the ultrasound to suggest endo. The consultant I’ve seen has suggested due to my previous surgeries and altered anatomy he isn’t sure that endometriosis is the cause so wants to run more tests.
So In 2021, as it stands now, I have been for an MRI to get further images to understand what’s going on and I’m still waiting for those answers. Either way, due to the previous surgeries and scarring, it won’t be possible to operate to remove endo, if that is the diagnosis, so I’m hoping for some good news and advice on how to manage this going forward.
I am an active person and love mountain hiking and Spartan obstacle course racing; I refuse to let endo stop me doing what I love. I’m hopeful the more awareness we raise and more money we raise we can help future generations with a better course.
If you would like to support the vital work of Endometriosis UK please visit the #SewYellowForEndo Just Giving page https://www.justgiving.com/fundraising/sew-yellow-for-endo