I got my second opinion, they think its endo, but I still feel like a fraud.

[asoullessstatic]

So. I got my second opinion. The private gyne does believe it to be endometriosis. He said it’s unlikely I have deep infiltrating endometriosis, instead he thinks I have mild endo, but on the inside of my bladder and bowls. So rather than it growing through tissues in big lumps, its grown across it like a sheet on the inside. I mean I guess it’s nice to have a 20+ year endo specialist tell me he’s “absolutely certain it’s endometriosis.” However, he doesn’t really want to put me back under the knife, because I only had my lap 5 weeks ago. Hopefully the Minera should help with things, and if not in 6 to 9 months we’ll think about another op.

I still feel like a fraud. I feel like this horrible person that just…attention seeks all the time, and maybe I’m making it all up, maybe I am just so crazy I think all this is happening and it isn’t. I don’t know anymore. I really don’t.

The experiences I had with my lap were, not to be over dramatic, straight up traumatic. To the point I’ve not been able to go back into the hospital building which is problematic since I work next to it and often go into get lunch there. At least that’s a money saving tip I guess.

I’m just…so lost still, and I thought it would make things easier, instead I’m still bleeding post op (5 weeks later), my periods are back, I am in so much pain, and I am just so tired. So, so tired.

I feel so lost and crazy and I just...don't know who to talk to or where to turn.

[Hidden]

I’m so sorry 😔 I am in the process of being diagnosed, I don’t want a lap if I can help it so I’ve been put on the mini pill for now to see if it helps.

I know how you feel when you say you feel like a fraud. I have ME and have had every test under the sun for pain and fatigue etc... it’s only now I’m piecing together that it could be endo and I feel like the doctors are like ‘oh she’s here again!. I know my gp isn’t like that, he’s really good, even when I’ve broken down in tears on several occasions but still, I feel like they must be sick of me. I’m sick of me!!

You actually have a diagnosis, please don’t feel like a fraud! You know your body and if something is wrong. Sometimes it just takes time to get to the root of it xx

[asoullessstatic in reply to Hidden]

Thank you. My lap was negative, which was a huge...spanner in the works for everything. I feel like I'm back living in some limbo land where one doctor says something, the other says something different and the tests are all blank. After fighting so hard to get the lap done, and to have it negative was such a horrific blow.

Its like, I have it, but I don't have it at the same time and I can't prove I have it. It messes with my head.

[Moon_maiden]

I know just how you feel, so many times went to GP, about the same things. They didn’t even consider gynae stuff until fibroids showed during a renal scan. Going on the pill since has helped balance hormones, but not the pain.

You aren’t a fraud, it doesn’t stop you feeling like that, I have as well.

I hope you feel better soon

[StefaniaJW]

Who performed the laparoscopy 5 weeks ago? Because only highly skilled and experienced endometriosis excision surgeons can recognize all endometriotic lesions, others might not, so I suggest looking into that. Were you given pictures of the lap? Did you have a follow up appointment? Is this 20+ year endo specialist you've seen an experienced excision surgeon?

[asoullessstatic in reply to StefaniaJW]

My lap was done by a surgeon at a BSGE center, or at least that was what I thought. Turns out a senior registrar did under supervison, not the consultant who is BSGE acredited. I have no clue what happened during my surgery and I was discharged without follow up and refered to psych. Not useful that really.

The secondary opinion got was a BSGE surgeon with 20+ years experience and he couldn't understand how my lap was negative, or why they didn't look in my bladder or bowels.

I'm just lost and confused, and upset, and hurt.

[StefaniaJW in reply to asoullessstatic]

Clearly the behaviour at the first BSGE centre was borderline illegal.

Please wait and then discuss the possibility of a second surgery (this time it has to be diagnostic but also full excision) with your new surgeon, who I hope is as amazing as it sounds (have you researched him?)

[asoullessstatic in reply to StefaniaJW]

Yeah, my sister works at the same hospital as a nurse and asked around about him, and I was able to actually talk to him. It was nice, he didn't make me feel horrificeither. The consultant on the NHS full blown triggered me when I saw her, no my first apointment she told me "I don't operate on people like you but I have to in this case, but know you are above my safety limit." My BMI is 34. I know I'm big but c'mon. But, from reading the notes, it appears that they're trying to pin all of this on PCOS...which is clearly BS.

I think it goes to show, just because you're refered to a BSGE center, doesn't mean the acredited surgeon will do your op. Not everyone in a BSGE center knows what they are doing, or what they are looking for. It will be one or two surgeons in the whole department who can do it, and if you don't get them on the day with their hands on the instruments then it can all go wrong.

[StefaniaJW in reply to asoullessstatic]

It sounds awful. One should be able to choose their surgeon but women can choose what surgeons to have surgery with if they pay privately right?

[asoullessstatic in reply to StefaniaJW]

Yes, if you can afford it that is.