First lap - what if they don’t find anything?

[Ejrn]

Hi everyone,

I’m 21 and have been dealing with unbearable periods and ovary pain for the past 7 years. I’ve been seeing a gynaecologist the whole time and been admitted once for a laparoscopy already, but the whole afternoon of surgeries were cancelled. This past year has been one of the most hellish I have had yet with the worst pain I’ve experienced yet, severe bladder pain, bowel issues, and gastritis from the overuse of painkillers. This whole time I have been repeatedly told these pains and issues are in my head and have had to repeatedly refuse being put on Amitriptyline (a low dose anti-depressant). It has been unbearable having to constantly justify that, apart from my pain, I live a very happy non-stressful life just to be listened to. I have finally now been given a date for my first lap on the 30th jan, and I am terrified of the prospect that they may not find anything. I know people have found nothing on their first and then found endo on their second or third, how do you deal with the doctors and their doubt afterwards? And how do you cope with accepting theres potentially nothing there causing your pain? Am so nervous that this will be the outcome and will feel so defeated all over again.

Thanks Xx

[Apatche4]

Have you had ultra sound? They tend to brush it off I had been to hospital a couple of times but got told it was just period. So just dealt with it. Wasn’t until I was admitted for pain management they gave me a scan. But I was in pain for years too. They found loads my first Lap grade 4. If they don’t find anything just keep pushing the docs they will do something

[Ejrn in reply to Apatche4]

Thanks for your reply, yes I've had multiple ultra sounds over the years, some have previously shown up cysts but recent ones haven't shown anything at all. Its been so hard to even get this laparoscopy so am just sure that if nothing shows up in this laparoscopy, no one will ever listen to me again or push it any further

[mam417]

Can’t give a solution but just wanted to let you know you’re not alone! I’ve had so so bad pain for 6 years now and pain during and after sex and with bowel movements. I’ve had ultrasounds which have just confirmed pcos but I’m on the waiting list for lap and so terrified they won’t see anything which means no even slightly solution to the pain !

Sorry for the no solution xx

[StefaniaJW]

It's highly unlikely they won't find anything. If they don't find anything, I would still seek a second opinion because not all surgeons are able to recognize all endo lesions, so they might say they didn't find anything when in fact there is some endo (I've seen this happen a few times before)

[asoullessstatic]

They found nothing at my lap 4 weeks ago today.

It was one of the worst things I have been through, I don't want to be debbie downer, but everyone told me "there’s not way they wont find anything" and that "you certainly have endo, there’s no way it isn't."

If they don't find anything, doesn't mean it isn't there, it just means they haven't looked in the right places. Most of my pain is bowl and appendix related, I was under for <30 mins and they said they didn't find anything. Negative laps do happen unfortunately, but it is always down to the doctor being unexperienced, unskilled, and unable to spot endo. Endometriosis is a highly variable illness, and can hide and be a bit of a pain to find on a lap.

I have a second opinion appointment with a private gyne tomorrow. So here's my 'if it is the worst case scenario' checklist I developed

1 - just because they find nothing it doesn't mean your pain is not real. It is real. There is a reason for it. The surgeon just didn't see it.

2 - Use the GDRP data act to get a copy of every single piece of information the hospital hold on you, all your medical records, all your scans, everything. Hospitals can’t communicate with each other, when you go get a second opinion, these will be helpful.

3 - Get a second opinion ASAP. Either via the NHS (which can take a lot of fighting, or via private care).

4 - If you are going NHS for a second opinion - you should want to be referred to a BSGE center, however, I had my first lap at a BSGE center and it was botched. So just because the center is accredited doesn't actually always guarantee they did it right.

5 – If you are going private travel outside of your local area, it will be the same consultants doing the private work locally as who are working for the NHS. To avoid having to see people who know each other, I’ve travelled to Glasgow from Aberdeen for my appointment tomorrow.

6 – Write. Everything. Down. Before your appointment make a big time line with the whole story on it. If you go private you get a solid half hour with the specialist so you have time to in depth discuss everything.

I hope this helps. I’m not going to be relentlessly positive because sometimes, awful things do happen. If the awful thing does happen, knowing what to do can sometimes help take the edge off the awful.

[Ejrn]

Thank you so much I really appreciate this. I feel like I’ve got so much against my name that no one will ever take me seriously again if this lap comes back with nothing, but I will definitely follow through with the steps you’ve given me. I’m so sorry to hear you’re going through that and hope that you get some answers in your appointment tomorrow. It is so agonising when the pain is so real and impacting my life so heavily, to keep getting turned away so often to the point I fear that more than finding out I’ve got endo - a life long condition. If all fails I’m ready to turn to private as well as i feel like that will be my last resort. All the best, let me know how it goes tomorrow. Good luck and thanks again X