diagnostic laparoscopy showed endometriosis in pelvic area & two liaisons on my diaphragm

[Eclair2]

Hey everyone.

I have just had my laparoscopy which found endo in my pelvic area and on my diaphragm (this was suspected on the diaphragm because of the pain I was having).

I had signed to say anything they found that the consultant could remove and treat while doing the diagnostic laparoscopy with the exception of the diaphragm the consultant advised she wouldn’t be able to treat that and I’d be referred to a specialist to do the surgery for that part…

I’ve woken up and briefly been told that they found it and haven’t treated anything at all and I’ve to wait for my follow up in 6 weeks?

I’m just confused why it was suggested they would do the treatment in other areas of found but nothing has been done? Does anyone know why that could be?

My discharge notes don’t go into details of what was found but the nurse who looked after me waking up from surgery said my notes mentioned they had found endometriosis scarring…what does that mean?

The consultant mentioned speckled endo in my pelvic walls? I’m just really confused and concerned I’ve got to wait 6 more weeks to know anything 😔

has anyone else had a diagnostic lap and no treatment at the time when it was suggested they would? Do they book you in for surgery at the follow up?

Anything anyone could tell me of your experience is appreciated!

Thankyou!

[Lindle]

There are very clear guidelines on what level of gynaecologist can treat what. First of all for anyone to do a lap they must have at least a special interest in endo requiring additional training. In secondary care (normal hospital) a surgeon can only remove superficial endo limited to the pelvic lining (peritoneum). Anything beyond that (stage 3/4) must only be treated in a specialist endo centre by advanced experts in a multidisciplinary team.

As endo progresses it forms dense scar tissue called fibrosis so this is likely what they are referring to which would suggest disease beyond what they were qualified to treat. Also diaphragmatic endo can only be treated in a centre. So they were right to leave it alone for your own safety.

I would suggest that you apply for a copy of the lap report which they should get back to you within 28 days - that way you will be armed with information at your review. This is the BMA guidance:

bma.org.uk/media/1868/bma-a...

[Eclair2 in reply to Lindle]

Thankyou so much!That makes sense then I was just really confused and it’s such a long wait for the follow up not knowing anything isn’t it!

I will definitely request a copy!

Thankyou!

[SL01]

just curious what were you symptoms for diaphragmatic endometriosis?

[Eclair2 in reply to SL01]

I get really bad pain in my neck and right shoulder a few days before my period and then for a day or two into it. Sometimes it radiates down my arm into my elbow and sometimes it can be so painful to lay down to go to sleep I have to sleep sat up. It can be really hard to move my arm and other times I get a weird feeling just below my right side of my ribs with the only way I could explain it was as if It was bleeding inside of me (before I knew that you could even get endometriosis on the diaphragm).