Diagnostic lap NHS - ablation? - Endometriosis UK

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Diagnostic lap NHS - ablation?

meg73 profile image
13 Replies

Hi All,

I have a diagnostic lap this Friday through the NHS. I have read just about every post possible about how to prep and what to expect, etc. My main concern is I think a lot of the posts and advice I can find is from people who have went private and ended up having endometriosis excised if it was found.

From my understanding, as I have not been referred to a specialist and am going through general gynae, excision is unlikely to be available to me if they find endo. For information, I cannot get referred to a specialist currently as I have had no clear signs on endo on scans, etc and I cannot afford private.

I guess I just want some information from anyone who has had a diagnostic lap through general NHS. Did you end up having ablation? How was the communication of your results? Did you get a follow up consultation?

I just want to make sure I am asking the right questions, and getting the right help so I am not just having a pointless operation!

Thankyou!

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meg73
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13 Replies
laura98 profile image
laura98

Hi Meg, I’m also interested in knowing what the answer to this is, as I wasn’t aware that they wouldn’t perform excision in a diagnostic lap.. I’ve been waiting for nearly a year just to see the gynae, just interested, how long after your appt with gynae did your laparoscopy appt come through? Hope you’re managing ok x

meg73 profile image
meg73 in reply to laura98

Hi Laura! I wouldn't say that they definitely won't because you may get someone who can perform it but I think it can be quite rare unless you get someone who specialises in endo! I'm not entirely sure though - this is just based on a lot of reading various threads haha!

It was about 6 months for me between my referral and getting a letter with a date for my surgery (8 months between referral and surgery)

laura98 profile image
laura98 in reply to meg73

It’s mad how you learn so much more reading these threads than you do from your GP isn’t it.. it’s sad really! Ah right, that makes sense and I’m glad I saw your post because honestly I had no idea that’s how it worked! My hospital isn’t an ending specialist so I’ll be in the same boat as you when I finally get an appointment. I hope you get things sorted and good luck for Friday! Xx

meg73 profile image
meg73 in reply to laura98

Thank you! Good luck to you as well!

meg73 profile image
meg73 in reply to laura98

Hi Laura! Just thought I would come back to tell you how it went. I saw the surgeon and anesthesiologist before going to the theatre and both were lovely. In the end, the surgeon I got actually did do excision technique so that's what she did. She said she couldnt excise anything that was deep infiltrating and that would go to a specialist if needed. In the end I got an endo diagnosis and had it excised from my pouch of douglas and behind my left ovary. Although I'm in a lot of pain now, it was such a relief to know that it wasnt in my head and also that I probably will get some relief following this when I thought it would be purely diagnostic!

laura98 profile image
laura98 in reply to meg73

Hey Meg! Oh my goodness I’m so happy for you, that’s been a brilliant outcome! I bet it feels amazing to have a diagnosis and to have also had the excision done which will help the pain for you. That’s amazing news! Sounds like the op went smoothly too. Are you back home now? How is the recovery going so far? Xx

meg73 profile image
meg73 in reply to laura98

Thank you!! Yes, went home home on the day. I was first in the theatre in the morning by 8:30 and left by 5pm.

To be honest, the pain post op was a lot worse than I had expected! Not to scare you as still definitely worth it but i just think amount of times 'day case' and 'minor surgery' gets said I was expecting to feel okay and be on my feet pretty quickly. In reality, I couldnt get up until 3pm and that was quite a struggle! At home, my partner has to help me get up off the sofa but I'm moving around a bit better now. I'm sure I'll improve with time but do remember when you have it to give yourself plenty of time to rest!

laura98 profile image
laura98 in reply to meg73

Oh bless you! You know what when I read about people on their feet within the next few days I do wonder haha. I hope they’ve given you something for the pain and fully use your partner to your advantage while you’re recovering! Xxx

meg73 profile image
meg73 in reply to laura98

Haha I guess everyone is different! One girl on the ward with me was up more more quickly and feeling fine now! So I guess you just don't know what you're going to get!

Jane884 profile image
Jane884

Hi there, I was in the exact same position as you under NHS care. I decided to have a diagnostic only laparoscopy, and if endo was found, for it to be left alone and then be referred to a specialist that carries out excision. My consultant was happy to agree to this, she didn't think I had endo anyway.

I have stage 3 endo and my bladder is involved, so as it happens I would have been referred to a bsge centre anyway. But I image she would have ablated any endo that she could, if I hadn't stipulated not to. I'm currently waiting for an appointment with my new consultant at a bsge accredited centre.

You're right to be concerned about having ablation rather than excision. By the time many of us are finally getting a lap done we just take what we can get, were so desperate for a solution. I highly recommend holding out for excision. You will speak with your surgeon right before your surgery, so can use this opportunity to tell them what you want. If for some reason you aren't seeing them before surgery, demand to.

It infuriates me that they don't even tell you that there's a better method for removing endo, but they're just not qualified enough to do it. You have to find out for yourself and then have the confidence to question your consultant.

Good luck x

meg73 profile image
meg73 in reply to Jane884

Thank you so much for sharing. This is what I am consisering: whether to ask for them just to not do ablation if they find any endo. After you had your surgery results, were you able to use that as a referral to a bgse centre and to see a specialist or did you have to go private?

Thanks for your help and I hope you get an appointment soon. X

Jane884 profile image
Jane884 in reply to meg73

After my surgery I was referred to a specialist on the NHS, by my consultant. The referral is for my nearest bsge centre, so I'm very happy with that, definately worth the wait x

meg73 profile image
meg73 in reply to Jane884

Thank you - that's super helpful. I'm thinking I'll probably go down the route of asking for diagnostic surgery only. It's just one of those things that's so tough because it feels like a big process to go through just for a diagnosis, when all we want is relief! But also don't want to make things worse..

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