I am scared

[Sham_R]

Hi Lovely ladies, I am very nervous with everything.

First I was told I have 3 endometriomas ( 2 on left ovary 7cm each and 1 on right ovary 13 cm) I was waiting for a surgery date but the right cyst ruptured resulting in an emergency surgery to clean up the bad blood on all my organs and they burnt the place where the cyst was. The doctor then confirmed I have Stage 4 DIE but not other endometriomas can be seen. 2 weeks after the first laparoscopy I had an ultrasound and I was told I have 3 more endometriomas 7-11cm on left ovary and 5cm on right ovary. They also said that all my organs are stuck together and my right ovary is above the uterus and the left ovary is stuck along with the intestines. I have endometriosis around by bowel and there is a little on kidney as well.

After the lap I was pain free for 2 weeks, but now all my pain is back along with pain while passing urine or going to toilet. Recently onward I started bleeding from by butt (sorry for the TMI!) and I am getting really bad pain from my left kidney.

I am on codiene but that seems to be doing nothing and when I ask for strong pain killer they don't prescribe it. I will seeing the endometriosis specialist on 26/01 but I am just nervous as to will I need another surgery and I really hope he will prescribe me stronger pain killer. I asked GP for Tramadol and she spoke to me as if I was an addict, they don't even take time to listen.

I really feel dejected and tired and very stressed, which is not helping with the pain as it keeps getting flared up.

[JulesUK]

So sorry to hear your story. Must have been so scary when cyst ruptured. When I had my first operation via A&E for cysts my pain was back again within a couple of weeks. I was then lucky enough at the time to use private health through my job and I felt that the doctor was placating me said she knew the person who had performed my operation and it would have been done correctly however when I had my laparoscopy it turned out the endo was still there. (I think they just felt with the cysts but left all the endo) Not sure where or who performed your operation but is it possible so many things were missed? Is it a specialist?

[Sham_R in reply to JulesUK]

Mine was done by a gynae surgeon, I don't think she knew much about endometriosis. But she was very persistent in promoting her private clinic and websites while I was high on heavy dose of morphine to keep my pain at bay.

I am meeting the specialist this Wednesday, fingers-crossed I may finally have some answers!

[JulesUK in reply to Sham_R]

I hope so, sounds like need someone new. In my experience you have to be very assertive to get what you need with endometriosis unfortunately. x

[emmap40]

Really sorry to hear this, sending you my best wishes. Hope you find a specialist that will listen to you, sometimes that's half the battle. Good luck x

[Sham_R in reply to emmap40]

Thank you so much, yes it is!