Sorry for the long post.
I've had a bit of a rollercoaster ride since my first lap. I went in to anaphylactic shock after my surgery and have been quite poorly since. I've still got puffy sore eyes and a very sore scratchy throat but my rash has pretty much disappeared and I'm feeling much better today.
On Saturday my gyne showed me the video of my operation but I still feel like I have a lot of questions and don't fully understand what was done, I'll try my best to describe what I saw. My gyne removed approx 6 patches of endo, I think they were mainly near my pouch of douglas in the surrounding walls in my pelvis. He didn't tell me the proper name of where it was. He showed me my pouch of douglas and pointed to 3 dots that are endo and said they would need to be removed at a later date. He then showed me my ovaries and said my right ovary had been stuck to my bowel and was now unstuck, I also had a cyst on my right ovary that had ruptured. My gyne then told me I have severe endo on my bowel but as he does not specialise in this area he said he will refer me to a specialist for further investigations - he didn't show me this part of the video as he said he did not want to misinform me. He said I have a nodule? But didn't tell me where - I'm assuming on my bowel/ rectum. The next step is to be referred to a rectovaginal endo specialist and have a colonoscopy to see whether the endo has penetrated my bowel. I've had a mirena coil put in which we are hoping will help my symptoms in the meantime. My gyne said it's all about a quality of life and if nothing improves there are many treatments available we can try. I have been told I will need further surgery to remove the endo from my pouch of douglas and will need to make the decision whether to have surgery on my bowel. If I go ahead with surgery on my bowel my gyne advised I would need to have a colostomy bag fitted for 3-6 months and said I really need to think carefully before deciding. I didn't ask and I wasn't told whether my fertility is affected but I'm going to assume I'm ok and ask at my post op appointment.
I have a history of recurrent UTI's (started 11 years ago) which has become more painful over the last 4 months so my gyne also performed a cystoscopy where he discovered adhesions and cracks inside my bladder (no sign of endo though!). He has diagnosed me with interstitial cystitis and advised I will need to have treatment where they put a catheter in and fill the bladder with "medicine" which will help with the pain. I will need this done weekly for 6-8 weeks but again he needs to refer me to a specialist.
My gyne also suggested I join an endo forum - which of course I already have lol. He also spoke to me about support groups in my area and suggested I have CBT. I've already taken these steps but it was nice that he acknowledged the mental health side of endo and offered support.
I've lived with pain for most of my life (as I imagine you all have) but I always blamed myself for being ill. I thought everyone was going through what I was and thought i was weak and had a low pain thresh hold. This chipped away at my confidence and self esteem and even though it's been hard it's good to finally get some answers and to be taken seriously. I'm trying not to dwell on the past because it will fill my life with anger and resentment but instead focus on the present. Having CBT has been very important to me and I would recommend it to anyone struggling, whether it be before or after a diagnosis - it honestly does help.
Thank you everyone for your support and kind words, it's made the world of difference to me. You are all such amazing ladies, I feel so blessed to have your support and understanding.
I'll keep you updated with my progress.