Second laparoscopy revealed chronic inflammation - not endometriosis!?

[Melissa1406]

Hi All

Still feeling very low after my new consultant (one of the most recognised in the country) gave me the results of the three biopsies taken during the laparoscopy at the beginning of the month.

He had already informed me there have been some women my age (20) where chronic inflammation has been found, rather than endometriosis, although as I had my first laparoscopy at 17 and was diagnosed with endo and had it lasered at the time, I'm still shocked to know I've been given treatment - Zoladex injections, mirena coil, evorel patches etc. - for the last 3, almost 4 years for something that I now know I might not even have!

The consultant said as I've been on Zoladex for 18 months (he was surprised I had been prescribed it for so long as it is only licensed for 6 months) the treatment could've supressed the endo to the point the biopsies didn't pick it up so he's unsure if it could be chronic inflammation or endo, even a combination of the two. He is reluctant to do the excision I was expecting to have at the end of this month as it hasn't proven effective in other cases of women my age where chronic inflammation was suspected. (Fibrosis was also mentioned although with all the other information I was given during the consultation I can't remember exactly what this is until I receive a letter from him confirming the results.)

Scar tissue was found near the pouch of douglas and 'abnormalities' around the peritoneum, although he said fallopian tubes, womb and ovaries appeared healthy. Unfortunately he didn't have my notes as the courier hadn't delivered them in time so I was unable to see the pictures...

I don't know where this leaves me as he's suggested letting my body recover for 7-8 months and my periods to return before I need to go back to him for a second laparoscopy, where he will consider doing the excision. In the meantime I've been told PAINKILLERS are the only form of treatment which is devastating as I've been taking them for years already just to get by every day. Pain during intercourse is excruciating and the thought of waiting up to 8 months is devastating.

I guess in some ways the results are positive in the sense that my womb, fallopian tubes and ovaries appear healthy and the dye ran through the tubes and the mirena was removed at the time of laparoscopy, although I feel in a worse position now than I did before having the second laparoscopy as I don't know (neither does the consultant) exactly what is causing me all this pain and discomfort.

Melissa x

[Jillanovitch]

If you've been diagnosed in your first larascoptomy then you do have Endo, this can be tiny minuscule amounts and still cause a lot of pain, it doesn't have to be lots. Sounds like its on your Douglas pouch, endo will grow and spread its been known to shrink during pregnancy and whilst having certain injections and medications etc but unless removed properly it will come back. I have had all kinds of diagnoses I.e IBS etc and it's not, it's the endo. Sad fact is not a lot of people in the medical profession know much about it and the symptoms from pain can be confused with other things, don't accept this conclusion luv, It is good news that your womb and ovaries look healthy, but stick to your guns and keep seeing the doctor, no one should suffer like this. I think once you get your results you should know a bit more. Good luck luv xx

[Melissa1406]

Thank you :o) I'm determined to get to the bottom of this! As the first consultant I saw lasered the endo the second consultant wanted to look for himself rather than go by someone else's diagnosis as he said just because something was lasered, doesn't mean it was endo, which I can understand although as endo hasn't been confirmed I'm unsure what to think while the 7/8 months go by before I can see him again.

I have medical insurance which expires at the end of the year and so was wanting to get treatment etc. sorted by then. Just feel so disheartened not knowing what's going on inside while I have this constant pain. Inflammation makes it sound as though I'm making a fuss over nothing. Sounds silly to say I wish he had confirmed endo as it's such a horrible condition, but I wish he had at least found something that can be treated rather than knowing he's found abnormalities that can't be treated at the moment, only managed by painkillers.

As the consultant I'm seeing now is private and I specifically asked to be referred to him due to his recognition and expertise in endometriosis, I don't know what to do as I felt if anyone could help me it was him.

My GP suggested physio before, so maybe I'll look into that for the time being.. anything is worth a try!

Melissa xx

[Suz-ed]

Hi Melissa sorry to here what u have been going thorw i have had a laporoscopy they thought it was endometriosis but did not have it they took biopsies come bk chronic inflammation the pain i get is allway there but can have bad day's were pain is bad 😢 my belly gose massive & heard as if I am ready to drop a baby 😮 & i am the same like u there no way can have sex the pain is unbearable & vary red & sore inside vagina a shape feeling I get witch comes & gose 😢so now I have just gotta wait for letter from gynaecology. the gynaecology sent me to a specialist nurse for physio she said not ready 4 that i should of had biopsies from vagina when had the laporoscopy so she has referred me bk just waiting on MRI scan as well now see what results our on that.can't wait to see them because i feel lost don't know nothing about chronic inflammation hope u get sorted out love XXX