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Endometriosis UK
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Frustration ,confusion and more confusion

I had my first Laparoscopy in the 1st October. I went in as they wanted to remove a dermoid cyst and explore any other issues . When I came out of the surgery and saw the consultant he said it was definitely a dermoid cyst and he found endometriosis and he burnt it away . Also when I left hospital hospital they said I would have a post op appointment 6-8 weeks time I still haven’t got a letter. I had a letter from the hospital for a follow up appointment in a years time ( great). I rang the consultant secretary about post op she said she’ll chase it and also spoke to her about whether a report will be sent to my doctors she said only if the consultant feels it’s necessary. Are you kidding me !! Surely you have an operation a report should be sent to your doctors of what happened. I feel so angry and upset right now and a little bit lost .

Xx

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Oh dear sounds awful :(

You definitely need to chase stuff up; a letter should be sent to your GP regarding what's happened so should you need to go there for any additional stuff they'll be informed. Mine was sent to my GP and CC'd to me in the post so I had a copy too.

Regarding follow up appointments; say you need one... as they discuss future treatment, next steps etc and go through what they've done. Mine had a follow up 2 weeks after op to see if my signed off time was enough and go through what he did during the op. Then another booked for 4 months and that should be the all clear until next time.

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Thanks you for replying .

At the moment all my doctors have is discharge notes .

Maybe I need to be patient . If it was just the cyst I think I would be ok as they went in to remove it . Obviously with the Endometriosis I wasn’t prepared for that at all . I have been reading up on it , which might be a bad thing with all this time off . I just want to know what stage is it? What is the plan of action etc . Did you wait long for a letter that was CC ‘d to you ?

On Monday it will be 3 weeks off work but not sure if that’s enough time off . I’m ready to go back to work mentally but not sure I feel like I’m ready physically . X

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The stages is more an American thing, mine is just severe and lists all the places they found it / removed it. Stages do not relate to symptoms either so my specialist isn't keen on it as it means we start to compare and everyone's different.

Even as an outpatient the should still write up notes to send to your GP as you may need after care / painkillers etc.

If your endo was found and removed there should be notes to say where it was found and how much was removed. Your plan of action varies that's why you should push for doc appointment, even if it's with your GP as they may be able to help / know another doctor you could talk stuff through with.

My letter was CC'd, and I received it about 5 to 7 days after my op, so pretty soon. But my specialist is hot on this stuff.

I needed two weeks off after my first op and then five after my second (my period came at the end and was horrible (expected) so I needed a little more time. Book an appointment with your GP before your sick note expires, so this Friday, should it need extending. It's better to have continuous sick leave notes from a HR point of view.

happy to help with any advice xx

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Thank you very much that helps me out a lot . I feel better now and a better understanding . I’ll contact my gp ASAP xx

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make sure the GP puts the same or similar as on your current sick note - mine was "post operative" so that HR doesn't have an issue - it is still post op related. Remember your time signed off is up until the last day, I got confused by this; for example if your sick note says 2 weeks from Wednesday then on the third Wednesday you're back in as it'll only run up to the second Tuesday. If in doubt and to avoid confusion ask them if they can put a date as between two dates means the day after you're back in; that was soooo much easier when my GP did that.

Just take your time, you'll need longer off than you think, it's the mentally exhausted feeling because physically you're still healing.

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Thanks again . I spoke to drs , got a telephone call with a doctor tomorrow. I’m constantly tired at the moment .

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you need more rest by the sounds of it, that's how I felt and they extended my sick note, but I had to go in to docs so they could do my bp and talk to me.

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Most definitely,hopefully they will see me in person x

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Hi,

I had my first lap on the 11th to remove a dermoid cyst and my surgeon also advised that she had burnt off some endo. So to this point we've had very similar experiences. However, she advised that she'd taken samples for testing and I will receive my results by the end of next week as that is when I am having my first post-op appointment.

Like the other ladies who've responded, I'd push to be seen again by your specialist and, separately, see your GP.

Hope recovery is going well. Keep us updated (especially me as it seems you are living my future???).

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Thanks I’ll push for seeing the specialist good idea . It’s like being in limbo , telling me you removed endometriosis but not talking to me about is frustrating.

Of course I’ll keep in contact , it’s good to talk to someone going through the same thing . Recovery is going ok my external wounds healing well . I’m just exhausted at the moment and keep getting hot flushes . How’s your recovery ? X

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Hi,

I had surgery this past Monday and I feel your frustration! They didn't find endo. but I want further testing done. I would definitely chase all your concerns up because that's your body and you deserve to know about it. I was promised a follow up appointment with images and I think further treatment planning (whether or not anything was found) and when I rung my GP the other day about it she basically said I won't have a follow up because gynaecologist doesn't think it's necessary. So I'm currently in the midst of switching GPs and getting a referral / 2nd opinion from another gynaecologist wiling to test for another condition called Adenomyosis which requires and MRI of my uterus.

Keep the faith and be encouraged, I know it's hard but don't give up! You know your body and it's you're right to have answers about it, especially if they're documented.

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Oh man sorry to hear that they are not giving you a follow up. I feel like it’s important to have a follow up for my mental well being or even a letter.

People don’t realise how important it is. They give you a quick chat after surgery and that’s it . And you get a discharge form that says “dermoid cyst and endometriosis treatment “ so much detail.

I’m glad you are getting a second opinion.

I will keep the faith . I’m sure you will too !!xx

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Could not agree more! and thank you for your positive thoughts!

Will keep praying for us all :D

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