Diagnosis

[Jay1302]

I have had a laparoscopy today and the consultant said I have “small amount of endometriosis” tried to ask the consultant but I was a bit out of it, was jus wondering can it grow/ get worse?

[Faith27]

Hi, as far as I'm aware it can progress unfortunately. It doesn't sound as though you had a very detailed conversation with the consultant but do you know if the small amount they found has been removed? This means it may take a little while to grow back or progress.

I know your probably worried right now but take time to get yourself better and recover from your operation. Hopefully you have a follow up appointment booked in at some point soon? Or can have a follow up convo with your consultant maybe?

Well done for doing the surgery and I wish you a speedy recovery!

P.s I've not been diagnosed- I am awaiting my own laparoscopy but gave done piles of research!! Hopefully others will share any personal knowledge with you here too.

Take care xx

[Jay1302 in reply to Faith27]

No he’s never been very informative unfortunately! Yeah it was removed, I have a follow up in 2 months I wasn’t fully with it when I saw him after surgery then he left.

Thankyou very much good luck with the laparoscopy hopefully not waiting too long xx

[JulesUK]

I always think it’s unfortunate they come speak to you when you’re out of it! You have so many questions the follow up is a long time to wait. Glad they only found a small amount but the size doesn’t always equal the amount of pain or problems it causes some people have a lot of endo and don’t even know it. My point is don’t be fobbed off by a doctor (not saying you are but it’s common!). It can come back but when and how much differes from person to person. When you see the doctor for your follow up ask him about preventative treatment to find out what’s best for you. Rest and take it easy don’t push yourself too much you’ll need time to recover. Best wishes. x

[Louiseboo77]

Hi. Sorry to hear that you have it . Yes sorry it will grow and get worse. I was the same as you now I am stage 4 with adenymyosis too. Your consultant or go should talk to you about it. Or there are loads of reasearch studies online you can read. Look at some stories on here from real people. Should help you to understand it better. Hope you feel better soon and take care. Xx

[Jay1302]

Don’t feel I got much aftercare help either I don’t know when I can shower, when I can take the stockings off or how they treated it feeling very sore and bit down today although I’m glad to finally have a diagnosis just 2 months seems a long time to answer my questions or know what happens next!

Thanks for the well wishes x

[Jad537 in reply to Jay1302]

I didn’t get any aftercare either !! Was a nightmare

[Jay1302 in reply to Jad537]

It’s not nice I don’t know what’s normal or not I’ve never had any kind of surgery before x

[Jad537 in reply to Jay1302]

Was my first surgery ever . I didn’t have any endo removed they just had a look around. I went out and bought waterproof dressings . I didn’t get my stitches wet for the whole 2 weeks . Then they were ready to be peeled off. (Make sure you don’t pull the scabs off if they are not ready)

Do not carry anything heavier than a kettle for about 4 weeks.

I still haven’t lifted anything heavy and it’s been 6 weeks for me post surgery but I’m all healed now

[StefaniaJW]

Who performed the laparoscopy? A well-performed laparoscopy with an endo specialist will excise any endo and you will be fine for at least a year afterwards (it does grow back, but it takes a few years after excision).

It sounds like they did not perform excision surgery on you and I don't even know if this was a serious endo specialist.

As I've said before again and again, getting surgery without removing endometriosis can be extremely counterproductive and only make it worse as the cutting and restitching can cause endo growth and adhesions.

[Jay1302 in reply to StefaniaJW]

My consultant apparently he’s an Endo specialist did it he said he treated it but not said how or anything he came to see me after when I still out of it so I can’t really remember what he said

[StefaniaJW in reply to Jay1302]

Ok. If he has excised everything, it will likely not grow back for a while. If your endo surgeon is good but not excellent it might come back after a few months. It all depends on how well surgery was performed

[Deluminum]

Hey, i had a laparoscopy a year and a half ago and my doctor said the same thing, I had a small amount of endometriosis. The amount of endo you have does not correlate to the amount of pain you experience.

I have dreadful pain that leaves me bedridden but only a very small amount of endo.

Focus on recovery for now, while it is a chronic illness endo does not always come back after a laparoscopy. The best thing you can do is stay positive and once the recovery period of over monitor any pain you have.

I downloaded a pain tracker app (pain tracker and diary) that lets you rate your pain out of 10, draw where you’ve experienced pain and make notes on it. This way if you feel the endo has come back you have evidence for your doctor.

I had a year of relatively no pain after my laparoscopy before it came back, so you can hope you’re the same.

Please message me whenever, we are all lost and feel alone in this. I’m only 18 so I understand how stressful and confusing it is.

Stay strong x