New Diagnosis, feeling lost

[Coolcatandkittens]

Hello,

I was finally officially diagnosed with endometriosis last Tuesday via a laparoscopy. My surgeon said my endometriosis was superficial and he was able to remove and treat well with ablation which is good news I think.. He also mentioned that having my coil (fitted previously) in place will help to slow down further regrow the. I was very dazed and drugged after my op that this is all I can remember my surgeon saying to me about how the operation went.

I just feel so lost and confused now as to where this leaves me and have millions of thoughts running through my head... I have my follow up post op appointment which is a good time to ask questions and get clarity.

I would really appreciate some advice and questions that I can ask my surgeon that you found helpful in your journey,

Thank-you ❤️

[Moon_maiden]

Hi

Good that it was superficial and he’s got rid of it.

How are you feeling generally after the op?

The best thing I would do is make notes as you think of them and before appointment go through and make more sense of them. Things get repeated at times.

It also helps the head space and not trying to remember.

I’ve only had one lap, waiting further op, if there’s any thing specific, if I can reply quite happy to.

[Coolcatandkittens in reply to Moon_maiden]

Thank-you for replying! I’m feeling so rubbish still, both physically and mentally... I think I’m just very overwhelmed with the diagnosis and feel like I’ve been left alone to google to information to find out more myself rather than told what being diagnosed with endo means for me and my future. I think the big concern for me is definitely how this may impact my fertility which I know is a tricky situation in itself.

I know everybody is different and has different symptoms but did you had bad pain before your laparoscopy? did you find the removal of your endo helped with you pain? If so, when did you start to notice a difference? I hope you don’t mind me asking! I hope you’re doing well too

[Moon_maiden in reply to Coolcatandkittens]

It’s all very surreal after an op, I thought so 😊. I hadn’t had an op and it took a few weeks to recover.

I was getting bad abdomen pain and uti symptoms with only a couple of actual ones. Initially consultant only thought superficial, but at follow up and still in pain, the consultant told me it was deep and wasn’t surprised. The trouble is the body has to have time to settle which doesn’t help. I saw a letter that had gone to GP that said there was a palpable mass in the bowel. Had an MRI, it didn’t really show, but this could be due to Zoladex. Passed to endo specialist who doesn’t think it’s in the bowel during a phone call, but didn’t seem so sure when I saw him face to face. I’m waiting for hysterectomy and removal of any more endo. I have an enlarged uterus and fibroids.

The first consultant doesn’t think it’s all endo related and referred to a gastroenterologist. I have a phone call with him tomorrow.

I don’t know if this helps, but I’d recommend making sure you get the right help. I was diagnosed with endo at 51, don’t take mine as normal, I’d left it too long and managed each month.

If you think of any questions will help if I can, I don’t mind.