Pre laparoscopy

[Dellz1996]

Hi I am due to have my first lap next Friday and I am wondering if anyone had an ultrasound that didn't show endo but it was found during their laparoscopy? I am so worried that they are not going to find anything as nothing was seen during my ultrasound. I don't want endo I just want to know the root cause of my pain. So if they don't diagnose endo then I am back to square one of investigations.

[lemon_mint]

hey Dellz1996 it is pretty common for endo not to be found on ultrasound or even on mri. I had both scans, none showed anything. But a simple two hand (a bimanual) exam done by my gyne revealed a nodule in the area of pouch of douglas - but that was my case. I then had laparoscopy to remove it. People have endo in different places though and a bimanual exam might not show anything. Laparoscopy is the gold standard for finding it. Ideally if they find it they should also treat it at the same time to avoid multiple surgeries.

[Dellz1996 in reply to lemon_mint]

Thank you for sharing with me ☺️

[SeaHorse6]

Hello, yes I had a similar feeling before my laparoscopy last month - nothing had showed up on pelvic ultrasound, but I was desperate to know what was causing all my symptoms. It turned out I did have endometriosis - found and excised during the laparoscopy & confirmed by biopsy.

If endometriosis is not present then maybe you can try other investigations (depending on the type of symptoms you have), for example in my case my GP said she would send me to urology for tests if nothing found by laparoscopy as there are some other conditions that can cause chronic pelvic pain. Keep pushing for answers. Good luck, hope all goes well

[Dellz1996 in reply to SeaHorse6]

Thank you for sharing with me. My GP has said if I am not diagnosed with endo that they will refer me to the gastrointestinal department as I've already been under urology when I had my kidney stone 3 years ago and they said they've already done all the investigations they can and my kidneys, bladder and urethras etc are all normal and functioning well

[SeaHorse6 in reply to Dellz1996]

Sorry to hear you have been through all that. Really hope the laparoscopy finds & solves your pain, it sounds very likely they will find something

[RosieFalkor]

I had 6 ultrasounds that showed nothing, and then on my 7th there was a “possible Endometrioma” which is how I got a laparoscopy. My laparoscopy found severe Endo which has spread basically everywhere, even my diaphragm! So yes, it’s definitely possible to have Endo not show on ultrasound. 😂

[Loveneige in reply to RosieFalkor]

Hi just jumping in here as I think I have it in my abdomen and diaphragm. Can I ask if you had symptoms? Did they treat it?I've had an mri and I have endo in every possible place in my pelvic area. But I have pain near my liver and under my ribs.

Thankyou

[RosieFalkor in reply to Loveneige]

I sometimes have odd chest pain but not very often. I had my heart checked and all ok. They haven’t treated it yet, was diagnosed a few months ago.

[Dellz1996 in reply to RosieFalkor]

Thank you for sharing this sorry to hear that your endo is so severe I hope theyve managed to remove some of it and that you are feeling a little better. Your story has definitely helped ease some of my anxiety.

[LUCY001]

Hi Dellz, I'm sorry I am no help at all but I just wanted you to know that I am also waiting for my lap and feel exactly the same! I have had multiple ultrasounds and nothing has ever been found. I've seen so many posts on here now with people feeling exactly this fear, so I just wanted you to know you aren't alone. Good luck on Friday, and let us know how you get on. Hopefully they are able to find the cause of your pain so that you can start moving forward. 💓

[Dellz1996 in reply to LUCY001]

Thank you for your kind words its definitely very reassuring to know what I'm feeling is shared with women who share the same symptoms and who have had the same examinations/scans. I hope you're laproscopy goes smoothly and you get the answers you've been hoping for ❤

[TennisCourt]

Heyyy I have mine Tuesday 19th: we are in the same boat!

My last ultrasound was 2.5 years ago and was “clear” but I didn’t even know what Endo was.

I’ve never been offered an MRI.

In August I went to a specialist and she listened to all my symptoms said sounds like Endo let’s get you in for surgery. I asked what if you don’t find it and she said “I don’t put you ahead for surgery if I don’t think I’ll find it” I also asked like could it be anything else and she said no.

So I absolutely get your worries I’ve had them too but I’m just putting trust in my surgeon.

Are they a specialist and not just a general gnae?

Try not to worry. I’m sure you won’t get this far without someone not finding it! Xx

[Dellz1996 in reply to TennisCourt]

I think they are specialists I had my first face to face appointment in gynaecology department at one hospital but my surgery will be at another where they have a ward/theatre specifically for diagnostic laproscopies after reading a lot of the stories on here I am really hoping they are specialists. I've never been offered an MRI either. My ultrasound and internal examination didn't show up anything. I had some swabs done at my GP to check for infection and she noticed some grazes on my cervix which I recently had corterised as it was suspected that may have been causing my bleeding after sex as I am not at the moment I dont know whether that worked for that symptom or not. I just seem to be getting more and more anxious the closer its getting to the surgery date

[TennisCourt in reply to Dellz1996]

Bless you. Try to stay calm. Worst case if they don’t find endo, at least we can rule it out and we move on to finding out the next thing. But trust your gut, my gut absolutely says this is endo. Good luck hun xx

[Labrador50]

I have my first lap next week too. My ultrasound didn't show any endo but my symptoms are suspecting. How long have you had symptoms for and is your pelvic pain fairly constant or just over periods? Endo seems to have a number of symptoms! Hard to diagnose without a lap it seems

[Dellz1996 in reply to Labrador50]

I've had my symptoms started 3 years ago I have constant pelvic and right side pain around where my kidney is the pain gets worse during my period the week before it and the week after so I only really have one week per month where the pain levels are low. Yeah I had a kidney stone 3 years ago which I had surgery to remove so they thought that was the cause of my pain but it never went away so urology recommended I ask my GP to refer me to gynae who then recommended the mirena coil which I had fitted in February and it has made no difference. I've had an ultrasound and internal examination done which didn't show anything. I've read a lot of stories on here where women have been dealing with similar symptoms for a lot more years than me and my heart goes out to them all because it has been an exhausting 3 years for me physically, emotionally and mentally and I am desperate for answers. Good luck with your lap hope all goes smooth x

[Labrador50 in reply to Dellz1996]

Sorry to hear this! It's so hard being bounced between different departments and specialists too. Hope all goes smooth for you on Friday too and you get answers 🙏 all the best x

[Sunset-lady]

Two ultra sounds which found nothing. Ultra sounds seem pretty useless to me. All I ever hear from the nurse is "you can see much". Then went for hysterectomy and my organs are fused with advanced endometriosis. So I don't think they can see much from the ultra sound. My surgeon admitted it was a complete shock to the whole team. They'd done an external examination too and it seemed fine. Good luck x

[Dellz1996 in reply to Sunset-lady]

Yeah the first gynaecologist i saw said same to me about not being able to see much I felt that she wasn't very dismissive of my symptoms and just recommended I get mirena fitted. I went back to my GP a few months after getting the coil fitted at my symptoms seemed to increase and asked for a referral to gynaecology at a different hospital after waiting a year I finally got a face to face appointment and was put forward for the laprascopy. Its definitely reassuring to hear that you were also told the same during your ultrasounds. I hope you are feeling better now you have had a hysterectomy and that they sorted out your fused organs x

[Sunset-lady in reply to Dellz1996]

They abandoned the hysterectomy- still all fused xxx

[Sunset-lady]

Sorry "can't see much" 😆

[BloomingMarvellous]

plenty of us. You’re not alone. ♥️

[Lofty1589]

None of my Endo was seen on scans and then they went in and found Endo on my left uterosacral ligament and a nodule on my left ureter. Hopefully will be having surgery next month to remove it

[Dellz1996]

Hearing that I am not on my own with the "clear" ultrasounds/scans is very reassuring thank you for sharing with me I hope your surgery goes well. Best wishes x

[Cocoacupid]

hi hun I like you just showed up simple cysts on my scans no real show of endo at all but my lap that I had back in April showed a frozen pelvis and deep infiltrated endo and effecting bowel and other pelvic organs but I don’t know to what extent as had an mri and from that am

Having further surgery to unstick my organs x I like you was worried I was going crazy with all the pain the fact I was heavily bleeding even when I have the coil in. But the coil had given me some release as other wise I would be up the Kernow smooch every month getting pain relief as crippled with pain during periods where I was bent over and couldn’t straighten myself because of the pain. I had tried different things before the coil the implant that made me struggle with my mental health as wfffected my mood had the injection that made me pile on weight coil was the only thing that really helps me apart from when I had the heavy bleeding earlier this year . I had a large wndometioma removed from my ovary which was causing the bleeding and large clots . Stay positive and hope you find the answers you need .

[ThisIsMe85]

Hello,

Yes, apparently very common for endo not to show up on scans. My scan was clear but doc did surgery as my symptoms warranted further investigation. He said that endo wouldn't show up on a scan unless it was very progressed. I had my surgery 4 weeks ago and like you, I was worried they wouldn't find it, but they did and removed all of it. Good to be on the other side of it now and hoping it improves my QoL going forward. Best of luck with your surgery.

[TennisCourt]

Hey! How did your lap go? Hope you’re recovering well x

[Dellz1996 in reply to TennisCourt]

Hi laparoscopy went well endometriosis was found in my pelvic area mainly on the left side but some on the right aswell they ablated it. I have 3 small cuts that are healing nicely and the pain has not been as bad as I had imagined it would be. I struggled with the gas pain in my shoulder for the first 3 days after the surgery but I managed it with cold packs, hot water bottle and peppermint tea and it is much better now. I have started having a sharp stabbing pain on the left side of my pelvic area and my belly button cut is quite sore still also but overall things seem to be moving in the right direction 😊 thank you for checking in x