Has anyone been told they found no endometriosis in lap, but ended up having endometriosis and it was missed?

[Sky342]

I am extremely stressed and upset that I still have no answers. For the past 2 years I’ve been told that I potentially could have endometriosis and I fully believe I do. Although, it’s not something I would want to have at all, but I definitely have most symptoms of it. I had prepared myself to be told I do have it and in a way I felt gutted when they told me they found nothing. My mum said it’s a bit silly saying that, but I just wanted an answer to the pain I have been feeling. Please if you have ever had a lap done and told it was all okay and healthy but found out later you had endo please let me know.

Also, I am not happy in the slightest with the gynaecologist who carried out my laparoscopy. He wasn’t an endometriosis specialist as I’ve read up and saw that that can make a difference in the diagnose.

Thanks😊

[Lindle]

This very common, especially with a general gynecologist who shouldn't even be doing a diagnostic lap in the UK if endo is suspected. Did you have a scan first?

[Sky342 in reply to Lindle]

I’ve had 3 ultrasounds over the last few years, my recent one was done in august which was normal. But that’s it. The gynaecologist has not rang me and he barely even spoke to me after surgery. He came in and said he found nothing and that was it, I’ve read peoples stories of the gynaecologist helping them and giving them advise and I didn’t get any of that.

[CCWildSwimmer]

Hi and so sorry to hear about your pain! Yes, I had a laparoscopy on 2020 and they found adhesions and scarring, that they though was a result of pelvic inflammatory disease, however they didn’t find any endometriosis until 2 weeks ago when I had a hysterectomy and at the same time they were checking for endometriosis as a MRI showed that I had this deep in my pelvis and bowel. They found it this time and shaved what they could see. Did they send any samples off for testing when you had your lap? Also, have you had an MRI? An MRI isn’t 100% conclusive, however it may show endometriosis in areas that can’t be seen if deep within organs? Also, has adenomyosis been considered which is like endo, but in the lining of your womb rather than the outside?

[Sky342 in reply to CCWildSwimmer]

I haven’t had an mri I have asked and they have said no. And I really don’t know if they sent samples off. I’m going to ring tomorrow over to the GP and see what the next step is. I’m only 19 so they have said no to mri, even though I don’t know what age has to do with anything. And no again for the adenomyosis, no doctor or gynaecologist has ever mentioned that to me. Once they said endometriosis it was all they stuck with and now they are saying it’s just IBS.

[CCWildSwimmer]

you are very right - they said no to an mri and ct scan for me initially as I was of ‘child bearing age’, even though they knew I didn’t want any more children!! I really, really hope that your gp can help you and if they don’t, don’t be scared to go to another gp until you find one that does - there are some really good ones out there. I hope you get the help that you need x

[Sky342 in reply to CCWildSwimmer]

thank you, I won’t stop until I do even though I feel like giving up trying to be heard after every phone call with the doctor😕

[Tttt4444]

when I had my hysterectomy and endo surgery two years ago I was still having pain after recovering the doctor told me it would be from microscopic endo which can’t be seen during surgery, I’m pretty sure they usually prescribe birth control to control the symptoms when it’s not visible, maybe your doctor isn’t giving you a diagnosis but still treating it ….did they prescribe birth control

[Gem657]

I had a bsge specialist and was treated appallingly no answers or diagnosis had surgery notes shoved in my face in recovery by the consultants lapdog

[Sky342 in reply to Gem657]

Where did u go from there? I’m stuck on what to do next.

[Sky342 in reply to Gem657]

Also so sorry you had to go through that and get treated that way!!

[que2021]

Hiya Sky342, I hope you are well at this time. I have had 3 laps. The first one when i was quite young and they found nothing. The 2nd one I was diagnosed with Adenomyosis (which is like the cousin version of endo) and the 3 years later (3rd a charm) got the endo diagnosed. Yes having a endo specialist perform the lap probably would help. Defo no disrespect to you mum but I know you mean having an diagnosis give you an answer to all the pain (and other symptoms) you are having. Otherwise you are sometimes made to feel that you are making it up or exaggerating. Keep pushing for answers.

[Sky342 in reply to que2021]

Thank you!! Hope you are well.