Endometriosis UK
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Endometriosis Confusion

Hi there, I'm 17 and yesterday I had a laparoscopy where they found only a small bit of endometriosis. The doctors never explained much to me and my notes I got from hospital say nothing on them. I was told the amount of endo found was not enough to cause any pain. I'm confused with what the next steps are and if I am a endo suffer seeing as there wasn't much and they got rid of it?

Any help would be greatly appreciated, thank you

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This happened to me back in 2014 small piece of endo found in pod didn’t think that was the reason for my pain and said I should go back to my gp if pain continued as they thought it could be from another organ and nothing to do with endo. But had no symptoms after that surgery and was pain free up until last year and now I’m waiting for my 2nd lap so don’t feel too down about it because even people who have only tiny amounts of endo can be in more pain than people with severe endo xx

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Thank you for your reply, I am just confused as to whether they should have told me where it was found and if my notes should have said more? I feel as if it was quickly dismissed and I never got things explained to me properly because there was only a small amount.

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I didn’t get any info either and I didn’t even see the picture of my endo till 2 weeks ago 😂 I’d go to your gp and ask where it was found etc because that’s how I found out where mine was I didn’t have a follow up or hear anything else from the hospital after my op

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Okay thank you:) you get a picture of it?

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I got shown the picture but you can probably ask for a copy I think they should of took one I think they do with every laparoscopy x

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Ahh okay, I'll ask my doctor and see:))

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Hiya I hope you’re feeling okay and recovering well from the lap. First of all it’s nonsense for doctors to say that the more endometriosis there is the more pain you are in. I’ve only ever had very small flat lesions removed and I was in agony, but magically all symptoms disappeared after both laps!! Some women can have huge amounts of endo but are totally pain free and only discover the endo when being investigated for something else.... if they’ve removed it then fingers crossed your symptoms will disappear :) you should be getting a follow up appointment though with the consultant so do chase if you don’t hear anything! They should also write to your gp with what they found. You have a right to know what was done and what they found in your body so don’t be afraid to push. They should also discuss with you whether you want to opt for taking the pill etc to prevent recurrence. Just don’t get pushed into this unless you are comfortable with it - I personally couldn’t tolerate the hormones so it was the wrong thing for me, but lots of people are fine on it. Please don’t let anyone tell you - even consultant gynaecologists - that you don’t have endo worthy of removing or trying to prevent recurrence. If they found endo, however small, you have just as much right as everyone else on this forum to be supported in treating and managing the condition. I appreciate it’s very hard to stand up to them because a lot of doctors are incredibly dismissive and ignorant of lots of aspects of endometriosis. Good luck and all the best with recovery x

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Thanks for your reply, I have heard a few people say that but wasn't sure if it was true or not. I was told I wouldn't need a follow up appointment? I phoned my gp for stringer painkillers aswell and they never said anything? I've been on the depo and the pill for years now but have opted in for one of those research things where I can only be on the depo, so that is all sorted:) thank you, I have noticed alot of doctors are very dismissive especially at a young age. My gynaecologist tried to talk me out of getting a lap saying I was too young!

Thank you:)x

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Oh dear, I don’t know what to suggest - if they’ve found “a little bit of endo” then you have endo and they should ideally be discussing with you how to manage the condition. You should at least be seeing someone to check wounds have healed okay etc.... when I was treated on the nhs I didn’t see the surgeon afterwards for a follow up but I was given a number for an ‘endo nurse’ if I had any questions. You’ll probably be seen more quickly if you see a gp though....

Yes I’m afraid you get treated appallingly when you have endo but even worse the younger you are. My first consultation with a gynaecologist when I was 17 too consisted of her not even looking up from her desk when I walked in, followed by a thirty second consultation where she said “you’re too young to have endometriosis, there’s no point in me examining you, just take paracetamol” when I pointed out that paracetamol did nothing for the pain she just said “well there’s nothing I can do for you then”. Stay strong and just focus on your recovery for the first couple of weeks before worrying about follow up appointments etc. Is there anyone (parent or sibling maybe?) who can do some chasing on your behalf? You really should just be focusing on yourself right now xx

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Yeah that's what I thought. Do you get follow up appointments? I know that it can grow back over time so do things just get worse again and you go back to the doctors then away for another op or how does it work?

Yeah it's horrible! That's exactly how I was treated too and I think it is so wrong as we are proof that you can have it at a young age! My gp thought I had mental health issues at one point and the gyno tried to blame it on that saying I was making it up for attention or something!

I'm nit really sure as my parents, boyfriend and all that don't really understand it either. I barely understand it tbh. But I don't think they realise how serious of a thing it can be so they think that's it, everything's fine now and we can forget about it:/

I am feeling alot better now though, how long does it take for periods and that to start feeling better or is it different for everyone? I had mine a few days after my op which was still really sore but then I don't think it helped that I was still sore from my op. Xx

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I always have yes... privately it’s two or three weeks later, but nhs they forgot all about me so it ended up being about six months after 🙈 so keep chasing - I had to remind them about four times!!

Some people have surgery and it doesn’t recur. I just went away after the first one completely symptom free for 18 months and then it came back (but we know it hadn’t all been removed properly), second time I was put on norithisterone to stop my periods completely, but again it hadn’t really been removed properly, I started with pretty mild symptoms to begin with so copable with for a bit but later on today I’m having number three, excision, having everything thoroughly and properly removed. It depends - you might never have symptoms again or you may decide to go on a hormone treatment to slow any recurrence. It just depends on the person :) don’t think it will definitely come back - to be fair I had it in an awkward place so it wasn’t removed properly the first two times. I am hopeful for this op though :) yes but pretty much, they leave you alone until you are worried that something may be back. They don’t check in on you to see how you’re doing or anything as nice as that :)

Oh I know what you mean - they’ve tried to put me on anti depressants so many times because of the fatigue, been told to just take paracetamol as I’m exaggerating pain... I’m afraid it’s a fairly common story. You just need to be strong, do as much research as you can so you feel confident and well informed when you talk to the doctor. And talking to ladies on here has helped me hugely!

I think you need to talk to your parents and partner properly so they fully understand. Or can at least try. People just think endo is painful periods and it affects you a day or two a month, when it’s not! It’s day in day out!! If they don’t understand it’s not because they don’t care, but even my parents and partner who know all the gory details still support me as best they can but do say that they will never know fully how awful it is living with endo, but to let them know what they can do to help. They often feel pretty powerless especially when you’re in so much pain etc. I would definitely try talking to them and explaining, and that it’s a chronic condition that you have to learn to live with, but what worries you/ what you might need help or support with.

What I would say is, do try and forget about it - it might never come back, it might come back in three years, but you can’t spend the time you feel well worrying about the endo returning. Easier said than done but just make the absolute most of life when you’re feeling well and fingers crossed it won’t come back :) and if it does you’ll just have all the fab stuff you normally do to look forward to once you’re better again :)

Ooh it varies - first op my first period I didn’t even need paracetamol, second op I was munching through the codeine like nobody’s business for my first couple. I think it depends what they do and obviously on the individual. But after that I never even needed paracetamol for periods until the endo came back!

Good luck and enjoy feeling better :) xx

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Ahh okay I have an appointment with my nurse Tuesday so I'll speak to her then make an appointment with my doctor:)

Okay that's good to know then, fingers crossed it doesn't come back:)) good luck for your op! Hope it all goes well and you finally get it sorted:))

It's so bad, things like that will scare some folk off from trying to get a diagnosis.

Yeah I'll have a chat with them and see:) but my dad says I don't know for certain yet that endo is what was causing my pain and i won't know for a wee while until o see if the pain is gone.

Yeah I will try:) for now it's still a worry but I guess that's because it's new and once I get used to the fact o have it it will be better:)

Haha I guess I'll soon see then:)

Thank you for all your help and good luck again with your op! Hope you're feeling well again soon:)xx

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