Unclear outcome from lap

[pinktiger33]

Hi all,

I had my first lap 2 days ago, the surgeon told me he found endometriosis and that my ovaries were stuck to the back of my uterus. For everything else I asked, I got fairly ‘non- medical’ answers. He said he ‘blasted away’ all the endometriosis he could find, which I think he was referring to using diathermy, which I have discovered seems similar to ablation... much of the research on which deems it not very useful due to rates of regrowth?

When I asked if my endometriosis had a stage, he said he doesn’t ever give anyone a stage because it’s unrelated to pain and symptoms, but that the endometriosis he found was superficial. Has anyone else not been given a stage? Does anyone know if diathermy/ablation is more useful/ used when the endometriosis is superficial?

He also told me to ‘not expect it to be gone forever’ and that he has put in a mirena coil to deal with any symptoms. Should I expect to need another surgery in the future?

I was wanting to visit my GP to talk through my surgery and be a bit clearer on exactly what they did and what to expect going forward - does anyone know if the GP will get the notes from my surgery and if so, when this will be by?

Sorry for all the questions and if anyone could help at all with any of them I would be very grateful - my mind feels a bit muddled after it all!

Thanks in advance.

[luthien]

Hey, it's good that you now know what's wrong.

I wasn't given a stage for my endo initially for much the same reason also stages are an American definition. However I mentioned that when I'm chatting to people we talk about stages so my specialist gave me what he thought was the stage - 4. If you have a look online there will be definitions for each. I think it's most useful for working out how extensive your endo is rather than symptoms.

It sounds like you had ablation which is like sanding / air blasting. Much the same as diathermy (heat or laser) they take the top layers of endo off, which means recovery is quicker, and can be done by a general gynae. However it does mean there is the rest of the endo underneath left so regrowth is quicker. If you research a bit more then you'll find both on here, the web and books that excision is best; this cuts out all the endo and some of the healthy tissue which means it's regrowth is less as it'll need to start again. This is only usually done by an endo specialist. It doesn't matter where or how deep the end is; excision should always be the norm, unfortunately this means we need an endo specialist, so more waiting and referrals.

It's good that they've thought about long term and given you the coil, but it does have side effects so it may be worth checking those out / asking on here. I'm not on any hormones, so can't help with that. Usually you'll be on a trial period of about a year for hormone treatment. The idea is to control your symptoms, you may have some which are lessened due to the lap.

With endo we all need future surgeries as it never goes away nor can it be shrunk, we can control the regrowth through diet amendments, some exercises, reducing stress, hormones (for some). We can control symptoms through all the above plus pain medication and alternative therapies. Some women can manage after one surgery as docs say that if excision is performed expect symptoms to reduce by 50% and regrowth to occur after about 3 years. Obviously it's different for each women and after each surgery.

Your GP should get the notes about a week or two after your lap, you can request them directly from the specialist secretary (quicker) or your GP (after about two weeks). You should have a check up with your GP / specialist about 2 weeks after your lap to see how recovery is going and then another about 5 months to discuss next steps etc. If you haven't got the 5 month one booked in contact your specialists secretary to request it booked in as quite often they do the surgery then don't check up which isn't right.

Happy to answer any further questions! Hope recovery is going well x

[pinktiger33]

Thanks so much for your extensive reply. I really appreciate you taking the time.

I’m quite frustrated with the outcome as I don’t feel like my options regarding the treatment during surgery were explained to me, either before the surgery or even after.

I rang up the surgeon’s secretary and was told that I do not need a follow up appointment. They also said that the notes and photographs from surgery would not be sent to my GP; they will only receive a copy of the discharge letter. I’ve contacted the NHS subject records request line and have been told they will email me an application for requesting my notes, although the person I spoke to said ‘I’m not sure if the surgery notes and photographs will even be on there though’. I’m feeling quite lost and not really sure what to do going forward!

Thanks again for your help xx

[Eva127]

Hi!

I was diagnosed with endo in 2014 and had diathermy carried out. Since the operation I have improved massively, many of the worst symptoms have gone. I just wanted to give you some positive aspects to focus on during this time of worry. Although there is a chance of this returning to how it was, I have had 5 years so far of not being constantly ill and no signs yet that it is getting worse

I was told they had to leave some cells that were near my bowel, so it shows that it doesn't always return aggressively even when it hasn't all been removed. I did feel the same as you post surgery though, I felt like I hadn't had much explained to me. I was on here and also the internet searching for answers. It drove me mad worrying myself over it coming back to the same level etc. I didn't have a coil and can not go on the pill, so it wasn't being prevented from returning with hormones either. I realised after my first few cycles that I needed to stop freaking myself out and just listen to my own body. Try to be patient (I know it's hard) and give yourself and your body time to recover and see how you are feeling. Ask your GP to refer you back to the specialist if you need more answers though .

I really hope that you feel so much better than before the procedure. Good luck with your recovery

Eva

[pinktiger33 in reply to Eva127]

Hi,

Thank you so much for this reply, I haven’t actually seen any positive posts from people after having diathermy so this really means a lot. I’m so happy for you that lots of your symptoms haven’t returned!

I think the not having everything explained to me fully is making things worse, but you’re probably right in that I should try and be a bit calmer and just take things as my body goes. Thanks for helping give me some perspective on this too. I hope you continue to be as pain and symptom free as possible xx

[Eva127]

I did exactly the same as you and researched constantly. Literally to the point of making myself paranoid. But at the same time I understand why you’re so worried, so please don’t think I’m saying don’t research at all. Just don’t make yourself ill with worry is all I’m saying I think part of the problem is a lot of us tend to feel loads better after the op and stop coming to sites like this. I only came across your post because of an email reminder off this site.

Glad I could ease your mind a tad, it’s a truly horrible and misunderstood condition. Get well soon!