First laparoscopy in 11 days, what if they don't find anything!?

[Ellenlar]

Hi guys I have my diagnosis surgery for suspected endometriosis in 11 days... I'm so scared they are not going to find anything and they are going to tell me its all in my head (like they have for 6-7 years)... I have suspected endo around my bowel and bladder and I had the most severe and extremely heavy periods before I got the meirna coil... (collapsing, screaming in pain, unable to even take painkillers as Id vomit everything back up.. I thought I was dying tbh) This has eased the pain but its still severe, and I still have 'normal' to heavy periods... I also have a constant stabbing feeling in my lower right abdomen that seams to swell up sometimes, and pock out more than the other side... I got told originally that its severe ibs and It was in my head...

I also get like a tight band feeling or a big ball in my lower abdomen feeling? I struggle to lay flat and can't lay flat and can feel tearing sensation if I stretch followed by a intense throbing feeling afterwards.. but after alot of research and talking to a gynecologist they think I have prominent endometriosis... (I won't go into my dozens of symptoms of endo I get)

Just wondering if anyone else has this dull stabbing pain?

Or has any suggestions for my first laparoscopy?

I am so worried they will tell me im crazy and its not real or its just ibs... And I feel like being autistic makes them think I'm crazy more.

I have aspergers and have to go all alone and I haven't been able to speak to my surgeon yet so Im not 100% what's happening...

Thanks xxx

[TennisAM]

Hi, totally understand your fear. When the operation was agreed, did you tell the consultant all of the issues (including the bladder and bowel pain etc)? Ask the surgeons secretary to fit you in to one of their consultant lists soon, so then you can talk them through everything again and ask about the surgery. Make sure they know every area so they can look there.

I hope your surgeon is an endometriosis specialist at a BSGE centre?

I know its hard after being told your imagining it but never forget its real. Based on what you've said its highly unlikely they will find nothing. Sadly stress and worry increases the pain so please do whatever helps you stay calm.

I had bowel endometriosis and endometriosis on my urethra and it was excruciating when I passed stools and passed urine.

Good luck with the op x

[Ellenlar in reply to TennisAM]

Hello! Thank you for your reply!I am so nervous they either won't see anything because it's hiding or because they arnt a specialist... I was originally under a incredible specialist and I spoke to him about the surgery... but because he was so busy I got passed onto a different surgeon on his team who isn't a specialist... Which is fine, I just have never spoken to my new surgeon and I'm not sure what excision she does (if they find endo)... Its kind of like if they don't find it I already know I won't believe them because I have a giant history of endo causing symptoms (like alot of women) and iv been told they suspect it might be developed..

Yes I am thinking about calling the hospital and seeing if the surgeon can call me for 10 minutes... Just to run over some stuff? But she's also one of the head female health doctors and ofter works labor and with premature pregnancies so she's most likely often on emergencies..

I am so sorry to hear about your battle with it, that sounds very similar to me😔 I am 22 and very nervous, but I suppose alot of people are nervous and its normal to be!

Thank you for ak your advice and support, I hope you are doing well xx

[TennisAM in reply to Ellenlar]

Definitely call them and don't take no for an answer. If you struggle to be assertive then ask someone to call on your behalf. Being transferred to someone else is a big deal and not having spoken with them before the op is unacceptable. Dont let them fob you off.

Tbh as long as they look properly in the areas you mentioned it's unlikely they'll miss it. Hopefully they will have the skill to deal with what they see.

Do you think you might be able to to contact PALS at the hospital (they are patient relations service) to say you have advanced endo and need the original surgeon to do it even if you have to wait? Might be worth it.

Yes sounds like we've had a similar time, sorry to hear its happened to you so young. Always fight for yourself and never let anyone for you off. If you need any more advice feel free to get in touch xx

[Ellenlar in reply to TennisAM]

Thank you I shall call them Monday, I have not been diagnosed yet but the specialist and general gynaecologist who refured me to the top specialist in my county said they suspect its very advanced... I am a bit worried and not to happy about it because I am not sure what's happening still! But I also know I'm lucky to have a surgery at all atm 🤷‍♀️ and maybe yes I shall contact them to actually...Thank you so much, and the same to you! I just hope they find something and don't tell me it's in my head... I know that's really bitter sweet but I barely got though any of my education ans iv had to take a gap year because its so bad I can't do day to day things! I just got to wait and see 🤞🤞😔😔 just hope this new doctor listens and knows alott about endo

Thank you xxx

[TennisAM in reply to Ellenlar]

Not everyone has surgery, they can diagnose from symptoms, then its confirmed via laproscopy. Don't worry and I really hope it works out. Good luck with it all and let us know how it goes xx

[Ellenlar in reply to TennisAM]

Oh really? I didn't know that! That would make alot more sense to how they have handled my case, Thank you so much honestly! I hope you are doing well! And I will definitely xx

[TennisAM in reply to Ellenlar]

I was diagnosed with endometriosis by symptoms alone as no scans showed anything, then had surgery 4 years later. After that surgery they told me I had endo based on a visual appearance of the lesions/adhesions. Only at my second operation it was confirmed by the laboratory that I had endo. You're welcome hun. Take care xx

[Ellenlar in reply to TennisAM]

Oh woah, bless you aw I am sorry to hear that, also surprised they didn't send samples for testing at the 1st op! I hope you are doing well atm! Maybe I am diagnosed now and having 100 % confirmed surgery? , I'm not really sure to be honest... Hopefully I can call and find out more Monday, Iv had so many exturnal and internal scans and every other test and pill! I had to tell my gp 'I think I have endo, refure me to a specialist ' and her reply was 'oh woah it does sound like it actually'... And iv been seeing doctors for 6-7 years about it.. I got told I am a hypercondriact and given mental health medications at 17 because they didn't believe me! Thank you for sharing your story it really means alot xx

[TennisAM in reply to Ellenlar]

Sorry to hear its taken so long. Its so sad and infuriating they assumed it was a mental health issue. When I first had symptoms I had to force my doctor to refer me to gynaecology. They just told me to take paracetamol and put up with intense stabbing pains and heavy bleeding. I verbally flattened that doctor😂

They did send samples from my first op. The lab can find it hard to identify endo when someone has taken the pill for a long time. The pill changes the chemical makeup of endo. Also they take a sample in the op, this is then cut into very small pieces, the lab then analyses one of those pieces. Sometimes its just bad luck that the piece they choose doesn't show signs of endo. Both consultants said the lab can be wrong. I've probably had 11 endo samples sent off which visually looked like endo, only one sample was confirmed as endometriosis.

Don't be too worried if that happens to you. If it looks like endometriosis it is endometriosis.

Good luck with the call on Monday. x

[Ellenlar in reply to TennisAM]

It was super annoying! It's something sadly alot of us have delt with!! And literally had to force mine too its not good?! And aw bless you that's so shocking that ay they didn't help the 1st time, and same my last gp took me off my painkillers and told me to take paracetamol?!? Shocking isn't it..And oh really I didn't know that either?? I have the mirena coil would that effect it?(in going to try and get them to remove it during surgery) I'm so sorry it happened like that for you! That's worrying that such little actually came back as endo when it is endo... Bless you...

And aw thank you Il be prepared for that a result now! Yes I'm definitely going in that if they think it's endo and I have all the systems of endo then it's endo... My still scared there will be nothing aha but I'm going to push for a 2nd opinion if that is the case 🤷‍♀️

But thank you honestly I hope my new surgeon has time... But I feel liek she should make 10 minutes for me considering I've been randomly put under her care aha xx

[TennisAM in reply to Ellenlar]

I wouldn't worry, the only thing that matters is they find it, they excise it and its not found to be something more serious by the laboratory. We have to remember that endometriosis is poorly understood so that's part of the issue with the laboratory results and scans not showing anything.

I don't know about the mirena but I guess so as it is hormonal so may change endo too.

Totally agree re the second opinion but I don't think you'll need it x

Good luck with everything xx

[Ellenlar in reply to TennisAM]

That's very true! As long as they find something it will be huge progress for me! That's very true its so complex and just not understood sadly 😔😔I think the merina has masked my symptoms alot and now I'm getting physically indicators of suspected advanced endo, I want it out now xx

Thank you for your support it means alot! Xx

[TennisAM in reply to Ellenlar]

Youre welcome! 😘