Hi, I thought I would come on here and share my journey so far,
I have known for years that there was something wrong and of course you know your own body, I had countless tests and ultrasounds etc done and everything came back normal, I spoke to my nan and told her all of my symptoms to which she said that she experiences the exact same things and then spoke to me about how she got diagnosed after 14 years with endometriosis and she explained to me what this was, my nan had a full hysterectomy but was lucky to have 1 child before this.
Last year I got diagnosed with stage 3 endometriosis after years of pushing and pushing for appointments after appointments and after being told I was going crazy and it was all in my head multiple times from doctors and gynaecologists, I finally got an appointment for my surgery (laparoscopy keyhole surgery). They informed me I have stage 3 endometriosis and that's all that was said to me, all there was on the discharge papers was that they lasered it off my Pouch of Douglas and wasn't able to touch my ovaries without consent. Very vague and brief description which left me in the dark. I have had a few follow up appointments where I have asked questions which again have been very vague, and they decided to put me on the Mirena coil which did help with my bleeding but did not help with my pain at all.
I had to wait 6 months for my next follow up appointment to give the coil chance to be effective. I recently went to my appointment on the 30/11/22. I asked the gynaecologist to please explain to me what was actually going on. I was informed that my womb is stuck to my bowel and my left fallopian tube and ovary is also stuck together, I have waited almost a year to actually find out what was going on. I have now been referred to endometriosis clinic to talk about surgery which I'm not sure what surgery this would be, but the gynaecologists said it would consist of taking out the bowel then putting it back in? I have had a look online at different surgery procedures based on this info and from what i can see its quite major surgery and I'm quite worried. If you have had a surgery based on this, can you give me some information of what potential surgery I could be having, would really appreciate this.
I do have my next appointment at the endo clinic and im also waiting to have an MRI scan done to see how bad the endo is on my bowel. My appointment is next Thursday 22/12/22 to talk about the next steps and if require a next surgery and I really want to write down and ask questions as I always think of questions to ask when I leave. Please could you write some questions below which you think I would need to ask? or maybe questions that you have asked before? 😊