'Completely normal' laparoscopy, could I still have endo?

[JellyBean00]

I had a diagnostic laparoscopy done at the beginning of April as a Gynecological Consultant suspected endo. My surgery was done by a general gynaecologist, and her findings were "no abnormality seen or gynae pathology". She told me everything looked completely normal.However I have so many symptoms that fit with endometriosis - debilitating pain every period and middle of cycle even with opioids and NSAIDs, bloating that increases my stomach by 10 inches, blood in urine and stool (with no urine infections and a clear colonoscopy), random pelvic pains, pain during intercourse and even when using a menstrual cup, constant fatigue and nausea, IBS symptoms that are worsened by my cycle, heavy bleeding...

I had the Levosert coil fitted while I was under. I came round with cramps that needed two rounds of Oramorph and IV paracetamol to bring down to a level that was even close to bearable, which prompted one of the recovery nurses to be very kind, and another to suggest I had a very low pain threshold which did not help the feeling that I was not being taken seriously.

I had an abdominal and transvaginal ultrasound to rule out PCOS about 6 months ago, so the lack of cysts/endometriomas is no surprise. But being told there was absolutely nothing wrong with me was!

Has anyone been given an 'all clear completely normal' diagnosis but ended up having endo/adenomyosis after all?

[Lofty1589]

A lot of people have laps with a general gynae that are negative and then go on to have another lap down the line with a specialist or someone with a special interest in Endo and it is found. This was the case with me. Push to see someone with a special interest in Endo because many general gynaes do not recognise Endo or look for it hard enough. That’s the sad thing about this disease, we never stop fighting to be heard because otherwise we’re ignored.

[JellyBean00 in reply to Lofty1589]

Thank you, it's an awful boat to be in but I really appreciate your experience and reply

[curlyjo]

I think adenomyosis is quite hard to detect (as it is in the womb lining) so you may have this and the surgeon didn't have the expertise to spot it. After my lap the consultant showed me pictures of my womb lining taken during the lap and said that it 'looked like' I had it. I had endo too which was more obvious. But interesting that she, as a top level surgeon in the field (I found out later), said this. Look after yourself and perhaps try the endo diet to keep inflammation and pain at bay.

BTW after my coil was fitted I was doubled up on the sofa with the worst cramps ever. I think this is fairly normal. Unhelpful comments by nurses that don't have knowledge of endo pain really add to the emotional draining this disease can cause us. I'm glad you're on this site and can get some support. Take care.

[Simo7]

Go to an endo specialist as suggested above. Also, just a thought but you could ask for the photos that were taken during your surgery and then upload them to Facebook site Endometropolis, there are surgeons on there that are brilliant at spotting things from photos that general gynaecologist have missed. If they do spot something then you could go back to you GP and ask to be referred to a BSGE clinic. I don’t know if it’d work as it depends on what they see but worth a try & you may be directed to the service that you need instead of another general gynae’. Good luck x