Updated: Mar 27, 2020
My basic knowledge so far and what reading materials I have found useful.
Having been diagnosed just a month ago, my knowledge of Endometriosis is quite basic. On 12th July I had laparoscopic surgery so they could have a little look around and also a hysteroscopy.
A laparoscopy is where they pop a hole in your belly button to insert a camera and another hole to the side to put the tools in to take a biopsy. Those are the wounds you can see above after I changed my dressings. They've both healed nicely and I have tiny scars.
An hysteroscopy is where they go in vaginally and put dye into your Fallopian tubes to see where it goes.
In my case, it diagnosed with me stage 4 endometriosis. The consultant described the damage like this:
Your Fallopian tubes are supposed to be quite floaty and move around with ease - apparently designed to make the journey a little less bumpy. Mine were very rigid from the scar tissue damage and kinked.
My left ovary contains an endometrioma which is when endo grows inside your ovary - this is what makes my periods so painful as it can cause pelvic pain. This ovary was also stuck to the back of my womb but they're not sure why.
On the end of your ovaries, you're supposed to have light feathery things that can help catch an egg. My right ovary is so damaged that the end is clubbed and stiff so not really able to catch anything.
The hysteroscopy helped to diagnose that my tubes are also blocked - likely from the scar tissue damage.
Writing about this now, it feels very matter of fact but the first couple of weeks I felt like I was having an out-of-body experience. Everything the consultant said didn't feel like she was talking about me. I knew there must be something wrong and I have always suffered with my periods but didn't think it would be this.
Before surgery my consultant said how positive she was about not finding anything. None of my vaginal scans had shown any signs of concern. And even though I had been describing my periods as extremely heavy and painful, I didn't believe they would find anything specific either.
So on the recovery ward, without Tom, that's when she told me. When I was high on fentanyl. The nurses there were incredible. There was one with purple hair and glasses that I must find the name of one day who said that things could be done to help and 'we have a plan' - very comforting and reassuring. I was told that I can have surgery to try and help.
From recovery ward to general ward, I had to tell Tom myself as nobody had told him. I remember crying but also laughing - must have been the drugs. I remember the vacant look he gave me - not sure whether to believe me or not. Once I'd had a wee and some jam on toast I was allowed to go home. Tom drove me, put me to bed where I dreamed about cheese, cats and fluffy clouds (thanks fentanyl) and then we woke up to the next day where everything felt so real and dark and depressing.
More on what came next in another blog soon. For now, here are some references which you may find useful:
My biggest concern for those who suffer with endo is that they don't know what the causes are for sure. They're only based on theories. So at the moment, women can't seem to do anything to try and prevent it.