2nd Lap - No Endo found this time? Feel like a fraud!

[Emz87]

Feeling upset and like a fraud. Just wanting to know if anyone has experienced this.

I am recovering from my 2nd lap i had 2 weeks ago.

My surgeon said he didn't find any endo - although he at first said he was expecting to as I had a lap 4 years ago where my endo was burnt away.

So I just feel like a right fraud - my pains and bleeding are more than real and I wouldnt put myself through another lap if i wasnt in so much pain.

But he just said there was no endo found. I asked why? And he said well it can just clear itself up. So i questioned why i have all the pain and bleeding etc etc and he said that we can treat that with medication and suggested maybe it was IBS.

Well i was fobbed off with this IBS shit around 10 year ago. Even went to a specialist clinic who on my first appointment took me off his list and said I am refering you to Gynae - as he believed in no way do i have IBS.

Its not that i want to be riddled with endo - but I did want them to find something to jutify all my pain and something they could get rid of like last time. I just feel this lap was for nothing and i am now still in so much pain for it as healing seems to be a slow process as i am still sore and swollen. - all for nothing though!!

Ive always been of the understanding that endo cant just go - he took photos of which he showed me to say there was no endo - but i havnt a clue what I was looking at and had only just been moved back to my room from recovery so was practically half asleep anyway!

Any thoughts or help would be appriciated. Xx

[KkAnne]

Hi Emz,

I feel like I can’t help medically but if it helps I feel exactly how you feel right now.

Since my lap (first one and I got my endo diagnosis) my symptoms have been getting worse and worse and I feel like no one is listening. I spent a whole day in hospital yesterday had an MRI and was told someone would contact me last night if I wanted to get home, I’m still waiting for that call.

I know my body and I know my pain and I know that you’ll feel this way too.

Yesterday I had reached my limit again and had that “why me?!” curl up in bed, dosed up on pain killers cry that I needed.

I’m not an expert and if this isn’t what you want to hear ignore me but just because they don’t find it where they look doesn’t mean it’s not somewhere else and that’s what’s causing your symptoms.

I feel that endo isn’t well know about and really good specialists are so few and far between that when we find them we should go and buy a lottery ticket because we’ve struck gold.

You are not a fraud. Your pain is real, and there is always someone here that is listening.

I’ve found so much so much support from the ladies on this group, many of whom have gone through the same situations. It’s tough, but if you feel like something isn’t right keep fighting. I know, like the majority of us on here that we’ve been fighting for years just to get that first lap, and you’d think it should be easier after that but it’s not. Doctors don’t understand endo and I think that’s why it’s so hard, it’s the unknown and everyone can present differently and unfortunately they know they don’t have all the answers so they fob us off. It’s so hard but eventually someone in the right place in medicine will listen and you’ll get the help you need.

I’m sorry if this didn’t help at all and that I don’t have any answers for you, but I just want you to know you’re not alone ever and please never feel like a fraud. It makes me angry that you’re made to feel like that and that we get diagnosed by people who couldn’t even begin to imagine what we go through on a daily basis.

I’m big for positive thinking so I will say it will get better because I believe that it has to. Chin up, if you ever want a chat you can message me ☺️

Take care, and allow your body time to recover from your lap. Be kind to yourself ❤️

🌻💛

[Emz87 in reply to KkAnne]

Thank you for your reply and such kind words.

Firstly I hope you got your call you have been waiting for.

And yes I understand your curl up in a ball crying - I get to this point every now and then.

Im generally fairly tough with pain - Ive accepted I am constantly in pain, but every now and then it just gets to me.

As I am recovering from this op ive been over emotional - Im guessing as its because its not what I thought I would hear after my op - so processing it and not understanding why nothing was found has for some reason made all this even more harder to accept. (If that makes sense?)

I have friends and family who have been messaging or ringing to see if I am ok and if the op went well. I just say yeah im ok thanks, but I am not - no it didn't go well -They didnt find anything! - i'm in the same situation as I was before the lap - its this what makes me feel like a fraud.

Like you say - chin up - it can only get better. xx

[kitty270]

Get a second opinion. The fact that your surgeon burnt Endo away initially tells me that he is not a specialist. Ask if he took pictures during surgery and get a second opinion. Not all normal gynecologists are able to recognise everyway Endo presents itself. Burning Endo away scars the surface of the tissue but does not remove the disease that could be deeper in the tissue. Get your medical records and get a second opinion from a specialist. Trust that you know your body and how you feel. Don't be fobbed off! Good luck.x

[Emz87 in reply to kitty270]

Thank you for your reply. The laps were done by different gynaes, the 1st burnt away and the most recent one was also going to do the same thing.

There were photos taken and he did show them to me but as I had only just come around from recovery and kept falling back to sleep I barely remember anything he said and showed me. Am I able to get my medical records that easily? x

[kitty270 in reply to Emz87]

Hi yes due to changes in data protection know as GDPR you can phone the records department of the hospital and ask them how you can get hold if you full medical records. They will remove anything that could be considered to cause you psychological harm and they Di not have to provide staments from other medical doctors but you should get a full transcript of your operation, what was found any lab results and pictures taken. You can then take this to a BSGE centre to ask for a second opinion if you are still in considerable pain or symptomatic. Good luck. Let us know how you get on 🙂

[cmbxm]

I wouldn’t say you’re a fraud at all! Don’t think that! I’d just say he’s missed endo especially as you’ve had it removed before or maybe your endo is back but isn’t manifesting in large enough quantities that it’s visible to the naked eye and is just on a cellular level x

[Emz87 in reply to cmbxm]

Thank you for your reply and kind words. I have read before that it can be microscopic - so unable to see with the naked eye. Which I understand thats not the surgeons fault - if he can't see anything then fair enough. x

[cmbxm in reply to Emz87]

I had a surgeon once tell me he’s had women come to him for hysterectomys with no symptoms at all and when he’s gone to operate he’s cut them open to find abdomens packed full of endometriosis and on the other hand he has women coming to him in agony and they’ve literally got a few cells on endo somewhere in their body, they come back years later and it’s taken that long to grow to become visible, it’s a lottery with endo unfortunately 😫 x

[Emz87]

Hi Thank you for your reply.

No it wasn't done by a specialist. I had it done under a general gynae in the NHS. The discharge note gives no indication of where they looked. 😐