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.

Danny 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!



  1. After my laperoscopy last August i never got shown my pictures i never got any explanation as to what endometriosis is. I went to my gp who kind of explained things to me. I still have many questions and nobody has any answers! My hospital will not do anymore treatment as me and my husband want a baby..... not yet happened i am very fortunate to have a daughter with my husband, the medical centre view is i fell pregnant before so it will happen again...... so until it does (trying to stay positive however its the first and last thing i think about each day) i have to suffer with the most painful sex going only to take paracetamol! I feel let down by the lack of compassion from doctors and the not so willingness to help. Makes me wonder if it was their wife/daughter suffering would they be fighting for more help???

    1. I'm so sorry to hear that is the situation you are in. It makes me so sad to hear that some women don't have as much luck as me in finding someone that will listen. I know I've had my fair share of having to push and push to get anywhere but that's all you can do sometimes. If you're not happy with a response then keep pushing until you get somewhere. People still have so much to learn about this disease and without us making them see we are having issues with pain and discomfort they won't learn. Please please go back to your doctor and explain that things aren't working and you want some help. Nobody should have to live with a treatment of paracetamol for this disease because they do nothing - especially when you are trying for a baby and having to deal with the emotional side of things too. xx

  2. I believe I am currently going through endometriosis and have been since May or June. I finally have an appointment with a gynocologist next month but until then - its a whole lot of pain and discomfort.
    I've completely changed my diet and lifestyle and gone back on the pill 3 months ago but nothing seems to have helped. I'm becoming depressed, anxious and stressed - its hurting my business and my relationship.
    Finding support is hard, so I wanted to thank you for this blog. Sending hugs your way.

    1. Thank you for your comment and I apologise for being useless and not replying straight away! I'm sorry to hear you're in so much discomfort. Hopefully you will have a laparoscopy soon to determine whether it is endometriosis or not -sometimes the not knowing can be so much worse. I know only too well what this disease can do to relationships and work situations so I hope you find some resolve and a treatment that helps soon. xx

  3. Glad you got through it - I know that consultant appointments can go one of two ways usually, leaving you feeling hopeful and excited or lost.

    I'm sad to hear that you're experiencing the second, but well treatment for endo is a very long, and complicated path. I don't think you've exhausted all options though. I'm mindful of your worry that in several years time you'll just be going under the knife again with no obvious improvement, but surgery does frequently need to be repeated before success. (Twice now in my case).

    Surgery needs to go hand in hand with hormonal drug treatment so I'd be asking if they've sent you for one set of ops already, and you're about to go for another what drug treatments you're getting that's going to keep the endo at bay more long term.

    Re: the pics - it's very very common (at least in my experience) for GPs and consultants to tell you very very little unless you specifically research the surgery you're having and get the context for the questions to ask, which it seems like Shireen has done so she can see her pictures and find out where the endo is in her body. Anyone going for a consultant appointment should be similarly prepared. I have seen my pictures too, but did not have the foresight to take photos! :)

    Much love honey, don't give up!

    1. Thanks Michelle - your comment has certainly given me some hope. It's just this situation making me feel like nothing good can come of anything but I am so trying to keep positive and keep the hope that this surgery will work. xx

  4. I was diagnosed with endometriosis when I was 16. I was on birth control pills until I was 33. I've had two laparoscopy procedures. The first one seemed to help for two year with no pain. The second one I had in 2007 did not do anything for me and the endometriosis spread to my uterus muscle and lower intestine which would account for the IBS. So I live with pain a great deal of the time. My periods are like nightmares. At this point I am considering ablation. I want to thank you for writing about this. Not enough people do.