No endo found in Lap, feel deflated :(

[BlackcurrentSquash]

This is my first time posting, so hi!

I have been having severe pelvic pain and lower back pain since 2019 now.

I’ve had many investigations like ultrasounds, internal ultrasounds, blood tests etc, all coming back normal.

My GP said it’s normal and “every girl gets period pain”, I’m 19 and I have been off work for a month because of how debilitating the pain is, not to mention the constant bleeding and excruciating pain during sex and also when I use the toilet.

I knew something wasn’t right and I went privately to see a general gynaecologist who suspected endometriosis after hearing my symptoms. She booked a laparoscopy which I had 2 weeks ago.

As soon as I woke up she said she found no endometriosis but found adhesions all over my bowel. I felt so gutted no endometriosis was found- sounds ridiculous that I WANTED them to find it, but I wanted a reason for my chronic pain.

She has referred me to a bowel specialist- possible endometriosis on the bowel, but surely this would have been found in the lap?

I feel so defeated as I’m in the same pain I was before surgery, I had hope that I would be finally out of pain.

has anyone had a laparoscopy that found nothing but had a second opinion where it was found? I am convinced it is endo, nothing else can explain the severe pain I get.

Thank you.

[PBGV24]

did they take any biopsies?

Sometimes endometriosis can be that small it’s microscopic.

I’d also want to know what has causes these adhesions also.

[Trekkie84]

Hi, thanks for sharing. I don't understand this passage 'As soon as I woke up she said she found no endometriosis but found adhesions all over my bowel.' I thought adhesions are caused by endo and if it's not endo why are those there? In any case they may be the cause of your pain?

[Ps-endo]

I had a lap that didn’t find anything in 2021 with general gynaecology (nhs though) and a second one a month ago with an endo specialist who found it in a few different areas and adenomyosis.

Do you know if any biopsies were taken?

I completely understand how you’re feeling, it’s deflating. If you feel a second opinion is the best option for you then keep pushing for answers

[white61]

I had surgery and they told me no endo was present, I felt like I’ve been grieving for ages being told nothing is there when I’m in severe agony and I have all the symptoms so I can completely relate. I pushed to have an MRI scan which showed a cyst and now I’m going to have an ultrasound scan to see if the cyst has gone by itself or if it is an endometria cyst which would show that I have endometriosis, so we will see. It’s a constant battle and it’s so depressing being in agony but not having an answer for it.

[Endofitall]

You deserve an explanation for your symptoms and these adhesions. General gynae often don’t know what endo looks like unless it’s really classic appearance but it can look different. Try to push to see a BSGE endometriosis specialist. Those adhesions didn’t come from nothing.

[BloomingMarvellous]

I suspect the issue partly lies with “ general gynaecologist “. They aren’t endo specialists and can really miss the presentation of endo. It can be done with the best of intentions but you require specialists and even then it maybe missed. The adhensions on the bowel maybe another cause other than endo but I suspect not enough was done via tissue biopsy to confirm or deny that. Adhesions on the bowel maybe endometriosis and adenomyosis can be difficult to spot if it’s a diffuse form. Adenomyosis related to endo can also cause similar problems within the uterus. They often occur together. Not all endo is found in the uterine or pelvic region either and a good specialist will explore beyond the pelvis.

If I were you I’d put “no endo” back on the shelf as a maybe option for now but go for unknown etiology instead. Get a specialist to explore the problem. Find Lindle on here and sign up for her FB information page based on UK Specialists to help find the appropriate folk to help out.