Second lap soon... nervous!

[Sarahlouisex]

Hi everyone,

So I had a lap 2 years ago by a general gynae and nothing was found. Also had a normal ultrasound.

Paid privately to see a bsge specialist and on physical exam he felt nodules so booked me in for mri and another lap in his nhs clinic.

I went to see him yesterday and the mri came back clear however because of what he felt they suspect my bowels and lower area are involved and it could of been missed first time. So while doing the lap they are putting a camera up my back passage to have a better look around.

I have all the normal symptoms plus extreme pain going to the toilet around my period, painful ovulation, pain during sex, rectal bleeding during period, shooting pains up front and back and diarrhoea and constipation linked to my period.

Just wondering if anyone has been in a similar position?

I’ve also agreed to have a coil fitted during lap.

So worried they won’t find anything and I’ll continue getting worse as this seems to be the case at moment every period gets worse and worse xx

[asoullessstatic]

MRI is not normally diagnostic for superficial endometriosis, my understanding is they use it to attempt to spot deep invasive endometriosis so the MRI coming back clear is pretty much normal for endometriosis.

Ultrasounds are not diagnostic either, and unless the lap was by an endo specalist, especally with bowl involvement they often don't go deep enough to see it. General gynae surgeons are often not spealised or skilled enough, good job for going to see a bsge specalist!

I have exactly the same symptoms and after years of being told nothing was wrong I am finally on the wait list to see gynae but I have the same fears. Hell I had a panic attack the other night because I had managed to convince myself they would find nothing when I go to the specialist and I wont get a diagnostic lap and I’ll be ignored again. So I think the worry is normal, it’s…hard to leave the mind set of “they’re not going to find nothing anything” with endo because literally no tests show it. The gold standard for diagnosis is a lap.

Yet, the new GP I have who has been wonderful, kept telling me “bleeding from your rectum on a period is not normal and you should not think it is.” I mean, logically my brain is like, “you know what bleeding out my ass really isn’t that normal,” and the other half is like “you know they’ll find nothing again.” But, it really is not normal and I’ll be very surprised if they find absolutely nothing with the severity of symptoms we have.

Good luck, let us know how it goes. Good Luck! <3

[Sarahlouisex in reply to asoullessstatic]

Thank you so much for replying. I think sometimes it’s just nice in your head to know your not the only one going through it and speaking to people who understand and are going through the same thing.

Because he felt the nodules I think he thought he would see them on the mri which was reviewed by the bsge specialists however the ultrasound wasn’t.

I’m exactly the same as you in the fact I worry when I go to bed at night that nothing will be found because I know living like this with these symptoms is not in my head and there’s something wrong.

I’m so glad you’ve found an understanding gp that’s pretty difficult. I once saw a woman gp because I felt she would understand more only to be told ‘I suffer with heavy periods too’ it’s so much more than that.

Rectum bleeding is a new symptom for me only been having it for the past 2 months. My bowel symptoms seem to be the ones progressing the most.

I’ve convinced myself I’m in the best hands and if anyone is going to find it they will. And if it isn’t endo then they will look for other things so I feel reassured in that way.

Thank you so much, it’s a week Monday so fingers crossed all goes well.

Good luck with your refferal hope you get some answers xx

[KH1991]

Hey, I am glad ive come across your post because I am in a position where I had a lap and nothing was found like yourself, however im not concvinced and now I feel like maybe I should get a second opinion also! I had my lap in Jan 2017, they made 4 incisions so I thought surely they would have found something if I had endo. I had the coil fitted during the lap, to help with the pain. I havent had pain for around a year but Ive noticed all my symptoms back again and I feel as though if I go to my GP again nothing will be done and I will be sent away and looked on as being dramatic! Its a horrible feeling knowing somethings wrong but without a definite diagnosis!

Well done for pushing on and visiting a specialist! I just wanted to share my story to show youre not alone in feeling like its in your head or anything, because its not, its a horrible thing to go through and I hope you get the results you need to help you move forward xxx

[Sarahlouisex in reply to KH1991]

Hi lovely, it’s good to talk with people on similar situation. So thank you for replying!

I found with going to the gp I had to be very persistent. Mine weren’t interested at all. In the end I went onto the bsge website found a consultant local to me. And then went to my gp and asked for a private referral to him as unfortunately you can’t self refer to most private consultants. The fee for my consultation was £200 and it’s the best money I’ve spent. Everything else has gone through his nhs clinic. You may be able to be referred by your gp but mine told me they can’t choose a consultant and I could only have a general gynae referral through them.

Hearing the coil worked for a year for you is good to hear as I’m going to have one put in during my lap.

Thank you I hope you do too. Keep pushing it’s not normal to feel like this xx