Burnt out/old endometriosis or active/aggressive disease ?

[PPSN_JudyB]

The following quote is by Pr R Garry ( retired ) about H Reich, one of the pioneers of laparoscopic gynaecological surgery.

“ I had considered myself a bit of an expert on treating endometriosis for I had a couple of lasers and I knew that endometriosis was red and black spot lesions that could be vapourised out of existence with my guns. The hard material found alongside the endometriotic spots I knew to be just reactive fibrosis or BURNT-OUT disease. It was difficult to remove and could be safely left behind.

“ This changed the day I saw Dr Reich painstakingly removing all this ‘non-disease’ and placing it in 19 separate pathology pots. When challenged about the need to do this he told me to visit the path lab the next day and I was shown the specimens. Every one contained active glands and stroma and now I knew this was not burnt out endometriosis – this was what endometriosis is. This was a painful realisation for me and sent me on a long and very difficult road of trying to learn the skills to remove this dreadful disease".

"Burnt out " disease was decribed in my medical records as "old endometriosis ". It was left during 3 laparoscopies by 2 surgeons. Pr Garry read the letter about my surgery (which I had a copy of ) and told me this "old" endometriosis was active/aggressive/deeply infiltrating disease. This was proven by the pathology reports. I often wonder about women who would have been told that there is no active disease and how they have got on in the long term. It takes a long time for practice to change"

[Eggcustard]

Very,very interesting thanks. I was told twice that I didnt have endo and then it was found on my third lap. I really believe that surgeons have the best of intentions and do the best they can but some dont know what they are looking for/at and dont seem to believe in deep infiltrating endo. Please also post this on the endo board, everyone should know this, thanks.

[fatefulserendipity]

I have just had my consultant appointment after hysterectomy and asked if they found anything he said Old Endometriosis, I suppose i should have asked more questions but still had everything off after internal. Is it something i should ask him when i see him in another 2 weeks ?

[PPSN_JudyB Pelvic Pain Support Netwo]

Yes, I would definately ask him what the pathology/histology report showed. What was the hysterectomy for ? fibroids, endo, adenomyosis ?

[Simo7]

Hi Judyb, I came across this as I recently had a registrar record this on my notes following a lap'. Alarm bells rang & I asked if she had ablated it. She replied she hadn't. However upon questioning my consultant he assured me it was ablated except for some on an ovary in case I wanted more children. I have to say that I didn't believe him. That could be very unfair of me, but I'm still in pain. I feel the need to complain & the thought that he continued to practice this way horrifies me, I don't want anyone else feeling the despair that I have. Sorry! I'm ranting because I just wNted to thank you for posting something that I can use to highlight why he shouldn't be working with an 'old inactive' practice! Thank you X