My story of Adenomyosis


Hi my name is Stacey, this is my story of life with adenomyosis. 18 months after having my second child(at 21 years old) I started getting heavy periods, not just the usual heavy, but to the point I was sitting on the toilet for half an hour as I was too heavy for sanitary towels or tampons, shooting pain during and after sex(with awful cramps) and spotting after sex too. I had scans and blood tests and nothing was showing up. I ended up having the mirena coil, then after A year my partner and I decided to have a 3rd child. After having our little boy, my periods seemed to never stop, I was heavily bleeding 21 days at a time with a 4-5 day break! The pains could throw me to the floor. I had a feeling it was endometriosis as I’ve heard so much about it. Anyway, after going for yet another scan they see that I had thickening of the uterus wall. Which led to my diagnosis of suspected Anenomyosis. The problem with Adenomyosis is that the only true diagnosis is a hysterectomy! You need a very good sonographer who is trained in what to look for to be able to diagnose this disease. Luckily 2nd time around I had one. I am currently on the mini pill and this is helping with my periods (now every two weeks at 5 days long but I’m happy with that after what I’ve been through!) but the pain is just as bad. I also have IBS which from what research shows is very common with Adenomyosis.

Adenomyosis was originally called Endometriosis interna which means endometriosis inside the uterus. The only issue with it being inside, is there is no cure other than hysterectomy. No way of getting rid of all or some the nasty symptoms the only choices are the pill, mirena coil and trailing injections. Being 23 I am not allowed to make that choice of a hysterectomy. Even with 3 children and deciding we have completed our little family. I am constantly tired, run down and in pain, but this is not enough for any surgeon to help me so young. This disease can start at early teens the start of your menstrual cycle or after you’ve had children or even surgery. Unfortunately not enough awareness or research is out there to say for definite what causes this. All we know is if you have this, you’re likely to have endometriosis too. I only know so much, I’m sure I have missed out an awful lot so please bare with me! I was diagnosed only a few months ago after years of hell, so still have a lot to learn. I just hope, I can raise awareness for this debilitating disease that ruins so many women’s lives.