New to it all and a bit lost...

[AlexMaryM]

Hi,

I had a laparoscopy on Wednesday to find the cause of kidney pain I've been having for about a month, and in the process the doctors found 3 spots of endometriosis. Now, my dad is the regional specialist for endometriosis and since the diagnosis has been trying to dictate what happens with my treatment because obviously he knows best, but can't treat me. Only problem is, I don't know how severe it is, or what my options are because no one is dumbing it down enough for me to understand. I went to sleep in the anaesthetic room expecting to wake up and they say 'we don't know what the cause of the pain is' so I'm still in shock. Major shock. I'm absolutely terrified. I don't even know where abouts in my body the endometriosis is!

I have a basic knowledge of the condition as I wrote a paper on it for college, but I'm so scared about all of this. Is it just a major overreaction or is it normal?

Thanks,

A x

[Kerri215]

Cant your dad attend an apointment with you to go through all the finding of surgery.. you have the right to see someone to discuss your surgery and condition

[Wind_mill]

It can be really hard to take in at first and usually comes as a big shock so I would say that is very normal. It is also difficult to take in all the information when you feel like this. However you should be kept in the loop of what is happening with your body. the quickest way to find out might be to contact your GP and book an appointment and then ask them to tell you what was found on the operation as they should have a letter. Or if you have a discharge note from hospital then have a look at what is written on there and ask your dad to explain it if you feel comfortable asking him? Can you tell him you want to know more and don't understand? Alternatively phone up your consultants secretary and request a copy of all your paperwork. I went to my doctor and asked for the paperwork. My consultant was brilliant at explaining it and even drew me a picture of where it was still in my body. Sometimes doctors/ consultants forget that we need it in everyday language. There is no harm in asking what it is, where it is and why are they choosing the options they are as it is your body and therefore you should be given as much information as possible and able to make informed choices. I find it helpful to write down all my questions that I would like to know so I am prepared when I go in there. I hope that helps. Feel free to msg me if you would like further support. Good luck