Op note & pics (WARNING : Lap Pics Attached)

[NJG_98]

Following my previous post about my laparoscopy today and how no endo was found, can anyone advise on what I should do now with this op note and pics? I'm going to get a second opinion but don't know how to go about doing it.

They've said everything from today is normal,. I know that people on here aren't doctors but I've attached some pics just in case anyone can help and advise on next steps, or sees anything from the op pics that may have been missed?

Not the clearest images as Just photocopies

Warning : graphic pictures attached from laparoscopy

[Hidden]

Do you have PCOS? I'm looking at your ovaries and that's what I see but I'm not sure.

I'm seeing lot of veins which is a sign of a certain condition (can't remember what though).

Here's an endo lap if you wanna look, and maybe if you can see anything in the photos that we can't here:

m.youtube.com/watch?v=fuxqT...(Not working as expected?)

[NJG_98 in reply to Hidden]

Yes I have PCOS, but apparently it doesn't cause pain. Thank you I'll have a look x

[Hidden in reply to NJG_98]

Endo also isn't supposed to cause pain when a ladies not on her period but it does for some people on the site. Like when a girl is on birth control.

Maybe just maybe PCOS is the same way, here's the PCOS forum: healthunlocked.com/verity-pcos

[Sez73 in reply to Hidden]

I think you'll find when you look at the majority of people's comments on this site that Endo causes significant pain. If you don't have pain from endo, you're one of the very lucky ones. It has the power to obliterate people's lives. It very much causes huge pain, especially when painful adhesions are involved in more advanced cases. There is also no rhyme nor reason as some ladies only have a little bit of endo & can suffer terribly while some have more endo and don't have so many symptoms in some cases, but if you look at the overall picture, you'll find the majority of endo sufferers battle with significant pain which ruins their lives, and it's not just inflammatory pain, their battles can go on for many many years, especially if the endo remains undiagnosed for so long which is unfortunately common practice. So it's not really correct saying endometriosis isn't supposed to cause pain as that isn't true unfortunately.

[NJG_98 in reply to Sez73]

I thought endo did cause pain so thank you for your comment, I don't know if I do or don't have it now as the lap was normal.. but I've been in debilitating , severe pain for around 5-6 years now so all the drs thought was endo but they couldn't find it, but I did have general Gynae so maybe that's why.. at least I know that endo can cause pain and can get second opinions to try and find out the cause of the pain

[Hidden in reply to NJG_98]

I typed that wrong I was trying to say it isn't suppose dot cause pain when a girl is on birth control but it does.

[NJG_98 in reply to Hidden]

I've been on the pill for 5 months I've suffered for 6 years haha.

[Hidden in reply to NJG_98]

Oh I meant endo hurts all the time already, yeah I'm never gonna fix this post😂

[Hidden in reply to Sez73]

Sorry that was an autocorrect I meant it's not supposed to cause pain on birth control pills

[Hidden in reply to NJG_98]

It can cause inflammation that can cause pain:

nichd.nih.gov/health/topics...

[mollymm in reply to Hidden]

Hannah I'm sorry but it causes a lot more than inflammation. Many of us have severely damaged organs (bladder, bowel, diaphragm, heart, lungs, even sciatic nerves in some cases etc. Etc.). The damage (often serious damage) is caused by lesions adhesions and nodules which are caused by the endometriosis. Believe me when your organs are affected you're in pain. Just as you would be if any other disease caused damage to them. I've never heard anyone medical or otherwise claim that endo doesn't cause pain before and really have to challenge that statement.

[Hidden in reply to mollymm]

I meant it's not supposed to cause pain when a person doesn't have a period like when on birth control it was miscommunication

That was for PCOS if you read the comment above

[Geordie-Girl78]

Morning sorry to hear all this sounds a nightmare. I'm currently waiting for a lap to diagnose Endo but can I ask before you were referred to the gynaecologist did you have blood tests and scans ? One of my blood tests came back sky high which is a sign of Endo and also a couple of cysts showed on my ovaries just wanted to ask as I'm worried in case they tell me the same thing as they've told you !!

[NJG_98 in reply to Geordie-Girl78]

Hi lovely I had internal and pelvic ultrasound and many blood tests, apparently nothing on my bloods was abnormal, the only thing was in July my platelets were 406 (the normal range is 400) and then in September we're 426.

Apparently for myself this is normal, as I've had many chemotherapy as a child so my platelets will never be fixed as I'm prone to infections etc really easily.

So for me this wasn't a worry, they didn't think it was cancer or anything sinister. If platelets are obviously in the thousands or a lot higher they'd be worried, or white cell count etc.

I didn't have any ct or MRI which I hoped for, but apparently ultrasound was enough as they saw polycystic ovaries on it.

Make sure you request the post op note etc , they have a right to decline giving you the images. They don't usually give patients a copy of the images but there were certain circumstances where the surgeon who did the procedure agreed to give me mine. You can ask but they may not give you them, if you have biopsies or samples taken request the histopathology too! Xx

[Geordie-Girl78 in reply to NJG_98]

Thank you that's really helpful - I really hope you get sorted and are eventually pain free xx

[NJG_98 in reply to Geordie-Girl78]

Thank you hun, I hope your lap goes well and you get more answers than I did, have you been dated yet? Please let us know how you get on!xx

[Geordie-Girl78 in reply to NJG_98]

Thanks I'm dreading it I hate hospitals but also know that I can't cope with this pain forever !! No date yet probably on a huge long waiting list xx

[mollymm]

I know it may be difficult to get this done but can you ask to be referred to one of the endometrial specialist centres for a second opinion. Failing that contact a consultant at one directly and pay for a private consultation. I had to pay for a consultation after my last surgery because I knew from what they said that I had severe damage but the waiting list for my post op consultation at my local hospital was 5 months and then it would be another 2 months before they could get me on the books at the specialist centre to book my next op with them. It cost £200. That's a lot for me. I'm a single mum and have my own business so no guaranteed income which when you're ill is a problem. I managed to find the £200 though and saw the specialist within a week. If you could do that and show him or her your op photos, they'd be able to tell you if they agree or if they think it needs more investigation I'd have thought. If that was the case they'd probably tell you to ask your hospital to refer you to them on the NHS but if they agree that there doesn't seem to be endo present then you'd have peace of mind and could begin to explore other possibilities. I can only go on my own experience and it may be different for others, but in my photos the areas photographed are full of black dots and patches and the ovaries/bladder/bowel etc have thick black bands of scar tissue visible. If there's any way you can get these seen by an expert either on the NHS or by private consultation (if you can find the c£200) then you'd feel much more confident I'm sure. Good luck honey. It's crap feeling poorly all the time.

[NJG_98 in reply to mollymm]

Thank you! I'm going to ask to be referred to a specialist centre in Cardiff where I'm moving to, and get a second opinion there, the docs have told me I have no scar tissue but everything looks really inflamed to me on the pics but my copies aren't the clearest as I'm not allowed the original pics. It's so frustrating, I'm not working at the moment due to relocating and the op but have interviews next week to get back to work so finding the 200 won't be a problem just means won't be til new year... worth doing though.. hope you find some answers too and aren't in too much pain! Big hugs , thank you for your help xx

[mollymm in reply to NJG_98]

Ahh thanks honey. I've had all my answers and now just hoping this next op gets me back to Normal..at least for a bit. Good luck with your interviews!! I hope you get it al sorted some. Very best. Molly x

[NJG_98 in reply to mollymm]

Oh I hope it sorts you out and helps your pains and you get back to some normality, hope it comes through quick for you. Best wishes x

[Canadianrose24]

I would suggest getting an MRI because I had a laparoscopy in January they did find extensive endometriosis in the pelvic cavity where they have looked inside of you, they excised it but months later I did not feel any better I had an MRI and they found it all the way up the rectal vaginal wall which isn't visible from where they were looking. Just a suggestion. My private gynaecologist says Endometrial cells are minute and are so easily missed in fact they missed a bit inside me too, I've been on hormone treatments all year excruciating waves of contraction pains every day since and it looks like Im in for major surgery next year So any way endometriosis although rare can be found anywhere in the body and it's perhaps worth finding someone who specialises in endometriosis, I had to go private the NHS fobbed me off which is why my endometriosis has gotten so servere.

I hope you find some relief soon xx

[NJG_98 in reply to Canadianrose24]

So sorry to hear this I hope you get the best treatment possible, I'm going to look into specialists and private consultations , can barely afford it but need answers... the pics to me look too inflamed. But I'm not a professional or a doctor so I don't know... hope you get sorted soon lovely it really is horrible xxx

[Hidden]

Sorry that was a screw up I thought I typed it wasn't supposed to cause pain when a person doesn't have a period like when their on birth control but I know that's not true b/c every 1 of us seems to struggle while on the pill.

[NJG_98 in reply to Hidden]

The thing is if you've been in pain for years then the pills not going to automatically stop the pain just like the coil doesn't, it takes ages to kick in.

I'm not on the pill for birth control I'm on it to stop my periods however the do toes believe that I'm still probably having all the ovulation symptoms just no bleeding, so that could be a cause for the pain too :/

[Hidden in reply to NJG_98]

Yeah I get that too

I'm not on it for BC either I'm not even sure if progesterone can be used as birth control since if you don't take it at the exact time you can get pregnant.