Tuesday, 25 September 2012

Consultation update.

As I previously mentioned, I had my hospital appointment yesterday afternoon - which I was extremely nervous about.

The prof. explained where they had found endometriosis during my last laparoscopy, on my ovaries, bladder, diaphragm and Douglas pouch. I said before that he had told me that my left fallopian tube was attached to my ovary but the tube is actually attached to the inside of my pelvis (which explains why it is hurting so much to walk and lift my left leg to drive). He also said that they found endometriosis on my pelvic brim which I didn't previously know about.

I'm still on a waiting list for surgery - this will be the same surgery as I had in 2007 (laser surgery and adesiology) but it will be a 2 1/2 hour surgery this time.

He will not be operating on my diaphragm because he said it's too close to my heart. So that's just going to be left in there to get worse and to continue giving me breathing problems. I asked him if he had checked around my diaphragm to see if it had gone any further up in my body but he said he didn't need to because he knew it wasn't any further than that because I wasn't coughing blood. But, as far as I was aware, you only cough blood if the endometriosis is in your lungs...? Can anyone clarify that? I mean, having endometriosis in your brain or your shoulder isn't going to make you cough, is it? And what if it is already above my diaphragm but isn't causing issues like coughing blood yet? I'm pretty certain it's not an instant reaction. He was pretty final on this answer though.

I feel a little fobbed off in all honesty. I mean, this is the same surgery I had in 2007 that didn't improve my symptoms in any way and now I'm having it again in 2012... Does that mean I'll be in this situation again in 2017?

As for the big question, regarding my chances of having children, he said to just not worry because worrying can make things work - it's a vicious circle. I know this but I can't just stop my feelings.

So, I might be one step closer, but I feel like I've made no progress at all and I don't see how this surgery will improve my situation when I've had the exact same surgery before and my endometriosis has just gotten worse.

The boy was certain this was a positive move with me getting surgery but I feel totally deflated and I'm absolutely terrified of going in for surgery again after what happened last time with the anaesthetic.

I know any improvement to my present situation is good - things can't get much worse than this (she says with a paper next to her explaining the problems that can arise from this operation), but I just feel like I'm going round in circles. Why can't I be given a treatment that works for me like other women seem to miraculously find instead of having to re-try things that previously haven't worked?

I don't even know what to think or say about this anymore. I seem to have exhausted all options and no medical professionals seem to care that I cannot have a life while in this situation - I just have to continue sitting around, taking painkillers and waiting. I just feel like screaming with it sometimes. It's so frustrating not being able to get anywhere and seeing other women finding treatments that work for them. Why won't anything work for me? Why!?

Anyway, that's my second rant of the day so there's not much else to ponder. In the meantime, I managed to get two photos of the pictures they took during my last laparoscopy... PLEASE LOOK AWAY NOW if you are at all squeamish in any way, shape or form... Or you're eating!


This is a little hard to explain but in the pictures above, if you can see the red spots and red inflamed areas, well, that's my endometriosis. You can also see lots of lesions, which has joined things together. The bottom pictures show my diaphragm.


This photo again shows red spots and inflamed areas of endometriosis. There are also black spots of endometriosis and 'chocolate' cysts. The bottom picture on the right shows where my fallopian tube is attached to the inside of my pelvis. I think, from looking at this, that it's also attached to my ovary and the whole lot is stuck to the inside of me and twisted. Either way, it doesn't look great.

It's interesting to see and to be able to show people but I'm sorry if this has put you off your dinner!

S.
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