2nd Laparoscopy and am confused by results??

[DeterminedSurvivor79]

HI. I had my 2nd laparoscopy on Thursday. My first one was March 2013 where my diagnosis was found.

This time, with a different surgeon due to a referral from 1st gynae surgeon who decided I "only had minimal endometriosis when she went in and removed it and cut all the dense adhesions so cannot be in any pain and cannot do anything for me as nothing is wrong now". Yes I kid you not!

Anyway, both MYSELF and surgeon thought I may find I have some more adhesions or ENDO spots but he wanted to have a good look because of shoddy work done by 1st doc.

A 1he slot turned into a 3hr slot under anaesthetic. I was poorly after so he couldn't speak to me, so rang me on the ward the next morning. He said and I quote "found lots of ENDO in there, big chunks of it, on bladder, top of vagina, back of womb, bowel, pelvic cavity, ovaries." He said he burned it all away (diathermy-helicare) and was hopeful after post option recovery I shouldn't need more surgery and should be in much less pain, if not hopefully none at all, but will see me in 2 months and will continue to monitor me until he is sure one way or another. He had to do quite a lot of work in there and said to expect a slower recovery time than last time.

Now, recovery and pain right now all makes sense. Fine.

BUT what I don't understand is how did I go from a few spots of ENDO on ovaries and peritoneal wall, to 1yr 5months later when he found such a lot? What does his wording of "chunks" of ENDO mean? I didn't even know you could get it at top of vagina, but bladder etc as well? Only place the same is ovaries. There was no adhesions this time so am guessing that's due to the little between ops. What happened is what I don't get. So far spread, big - use if words like chunks to describe me both confuses and alarms me - and if he used diathermy then surely it will come back again?

Any help or advice will be helpful right now plz. Internet searching isnt coming up with much good right now.

[Kayleigh88]

I've often wondered if it can spread like this, I was only diagnosed with stage 1 and they said they removed it all.... But this past couple of months I'm in absolute agony so been worried it's gotten worse but not seen any posts about it progressing through the stages and had no luck with google sorry this doesn't offer any answers x hope you recover and it helps you x

[Yazza]

I also had lap done July 2013 they found minimal endo on my ureter (which wasn't treated) but am now waiting to go back in as the pain is ridiculas!

My concern is it's the same gyni doing the surgery reluctantly so I'm not convinced it will be treated properly but can't get a referal to where I've asked to go stress !!!!

Which area do you live? X

[DeterminedSurvivor79 in reply to Yazza]

Hi. I live in Worcestershire if that is of any use? If it is I am more than happy to highly recommend my new surgeon who just did my 2nd laparoscopy.

[Yazza in reply to DeterminedSurvivor79]

I'm in surrey and have found a very good surgeon not to far away but the gp have told me that they cannot refer me it has to be done by my gyni! Oh yes I know I'll insult my current surgeon way to go NOT! X

[lm330]

Hi there I'm sorry to hear what you are going through. It sounds so familiar. I had a lap in 2011 and was told the same as you. All gone. Nothing we can do for you. Your pain is not endo. Been fighting for 3 years to have another lap and finally had to go private. I too have realky bad endo abd had part of my bowel, bladder and ureters removed along with a cyst. I will need a hysterectomy after I have children caus my womb is in a bad way. Good for you for fighting. I think some of these doctors are still pig ignorant of what endo really is and unwilling to empathise or help. Your first surgeon and mine sound like the latter. I was told on all my previous laps there was none on my bowel despite that being one of my main symptoms . At my lap three weeks ago it was found it's covered. It may or may not hZve spread given the small time lspse. It's more likely it was missed last time. But your new surgeon is unlikely to say that I guess. Obviously there are many treatments to slow endo re growth but the most successful and with least side effects is to my knowledge total radical excision of the endo. What treatment are thry planning to put you on? Hopefully you will feel much better onow after that op and don't be afraid to stand up and demand another lap in the future is you think it has come bsvk. Wishing you a speedy recovery x x x

[dolly26]

Hi I am in the same boat as u my first consultant said on my go letter minimal endo and a 2nd lap 2yrs later and my new surgeon has said there was a lot of work to do I will find out more at my review on the 3rd Sept

[Hidden]

Hello.

Unfortunately the only surgical way of removing endometriosis, is by excision or cutting it away. Any other surgery including burning will not remove the Endo completely and so the Endo will regrow.

The best option us for ladies that have endometriosis, is to be referred to an Endo specialist centre and having excision surgery.

Latest research suggests that we are born with endometriosis and these areas become activated when we start to have periods. Research says that by the age of 25 all spots or areas of endometriosis should be visible to a skilled surgeon. And at this stage they should be excised.

So by this research, endometriosis doesn't spread it's just not "active" or (more likely) been missed by an inexperienced surgeon.