Laparoscopy experience

[alicexmae]

I have been referred for a diagnostic laparoscopy for suspected endometriosis, and was just wondering how long others took to recover before going back to work etc?

[GrittyReads]

Strictly speaking, a 'diagnostic' lap team should only have a really, really good search around to find any Endo tissue that may be there. The team should be very experienced and thorough and they should be able to search in all areas of the abdominal cavity ... checking all outer surfaces, of all organs: diaphragm, bowel, intestines, uterus, etc. etc. - even the hard to access places. Plus, they should be able to identify the different types of endo tissue.

Sadly, not all initial laps are this good and detailed. Even worse, some teams may remove endo tissue, instead of leaving it to a more experienced 'Endo removal' team. Often this means that only partially removed endo may grow back in a few months - often much worse.

BSCG 'Endo Teams' are the gold standard teams for removing endo tissue, and if you have any of the more dodgy types of Endo, or if you have endo in dangerous places - eg on the bowel - this sort of endo removal really should be left to specialist Endo teams like the BSCG groups.

Based on my own experiences I would insist that this is just an 'exploratory lap' and that they should then discuss your options for removal of Endo, after this first look round. I had endo removed in - what I thought was - just a 'look-around'. Although I did have a couple of pain-free months, the endo quickly grew back, and I was in far, far more pain than before.

Try to read up everything you can, and be firm but polite with the team.

Sorry it's a bit of a negative response, but if you read around on this website, you will see that for many women, things often become much worse after initial laps where tissue was removed. If things look bad on an initial exploratory lap, then they should refer you to more experienced endo-removal teams.

[gettingusedtoendo in reply to GrittyReads]

Hi GrittyReads, do you know how one should go about getting seen by a BSCG surgeon?

[GrittyReads in reply to gettingusedtoendo]

My understanding - unless things have changed in the last year or so - is that initial laparoscopies in NHS hospitals are only supposed to be 'exploratory'... That is, they are not supposed to start removing any endo tissue that they find. However, I understand - from occasional posts on here - that they will probably ask you, once you are admitted, whether you do want them to remove any endo they find. This is up to you, but many of the cases, on this site - of women who have said 'yes' to removal there and then, have had much worse endo return, (and often quite quickly - and much worse) after endo removal during an exploratory lap*. If it is only supposed to be an exploratory lap, then that's what I would choose.

It's up to you, but based on my own experience, I would say 'no' to removal, until you know what the full story is, after the exploratory lap.

I understand that - officially - they are not supposed to deal with any endo tissue that is in dangerous areas - such as on the bowel. Also that that they should not remove some of the more difficult types of endo.

After the lap, my understanding is that they should tell you everything they found, and if there is anything dodgy, and if you want to, you have the right to go back to your GP, discuss it all and take time to understand it, and then ask for a referral to a BSGE Clinic/Surgeon if the type of /amount of/ position of the endo warrents a BSGE team. Your Gp can/shouls do this - eg: refer you to a BSCG unit - if the report suggests there is difficult Endo, or endo in difficult to get at places.

As others on here have said, a mirena coil may help you, but it does depend on the type and situation of any endo tissue,

* [NB: This is what happened to me, although admittedly it was back in about 1998. After a few months the pains came back - but much worse - and I ended up going back on the pill and staying on it, on and off. That was until I had a mirena coil fitted, about 8 or so years ago, just to see me through the menopause. ]

It is all very difficult, as there are so many stories on here (the whole 'Endo UK' site) where women have had tissue removed when they were not expecting it.

I really would read around everything on the Endo Uk site, and also talk to the advisors at 'Endo UK'. Better still, see if there is an 'Endo Support Group' in your area. Although the women who run these have to be careful in what advice they can give, other women in the Group may be able to tell you who they found to be 'good' endo Drs or advisors, and how to access BSGE teams, in your area.

Good luck,

Gritty

[gettingusedtoendo in reply to GrittyReads]

GrittyReads Wow, a lot to digest. My endo is already ‘diagnosed’ via MRI so the NHS endometriosis specialist I spoke to has every intention of removing the tissue/adhesions during my lap. He didn’t mention this at all. But then he is referred to as a endo specialist in my letters so perhaps better qualified to undertake than a gynae surgeon? I guess i will contact my gp. Thanks so much for the help as ever. And sorry for hijacking @alicexmae

[lawrins]

I have endometriosis. I was sent into hospital for a laparoscopy, while I was under I was given a DNC and had the Mariena Coil fitted. I then got the coil removed a year later as we decided to try for a baby. After 3 months, I got pregnant. Once I had my baby, I got the coil back in and again took it out after a year to try for 2nd baby, again got pregnant straight away. After 2nd baby was born I got the coil back in. The coil this time didn’t agree with me and was making me moody and snappy so I said to my hubby I’ll get it out, have a break and get the pill. We didn’t want any more babies as we were happy with two. Had coil out for about 3 months and couldn’t handle the pain of the endometriosis so decided it was time to give the pill a try. Sometimes it takes longer for your fertility to come back after using pills but that wasn’t a worry as we were happy with the two we have. It's really hard to get an appointment with a doctor. I couldn’t get one after a week of trying. I gave up and thought I’d try again closer my period, period didn’t come, yip pregnant again currently 6 weeks. I believe that having the DNC give me a good clean out and then by having the coil fitted kept everything at bay which left it easier for me to get pregnant. This will be my last now so soon as this one is born I’ll be getting the pill ASAP. Pros of the mirena coil is once it is removed your fertility comes back straight away. The twice I got it removed my period came within the fortnight and then came every 28days after that. Good luck everyone, I feel for you all as it is hard enough dealing with the pain without trying for a baby also. Xx

[AtomicHair]

Hi alicexmae, when I had mine I was off work for 2 weeks. Had hoped it would be one, but I really needed the second week, as I was still sore and very tired. Felt like they had just poked and angry bear!Mine was also only diagnostic, but I did have the coil fitted at the same time, so that might have caused some additional pain during healing.

Good luck.

[Lucyloo02]

I’m thinking the exact same. I’ve just been booked in for my first one, but haven’t a clue how much time to tell work I’ll need off! Hope yours goes well!!

[alicexmae in reply to Lucyloo02]

Thank you! Good luck with yours!

[FluffyPink]

Hi there, I was signed off for two weeks but the surgeon extended it to three just to give me extra time to heal. I had Stage 1 endo and the endo tissue was removed while they were in there. The only really painful part was where there was just one stitch from the small incision - it hurt if I laughed/ moved too quickly! Once this was removed (after a week I think) it was much more comfortable. Overall I was given loads of pain relief so it was really fine - make sure you leave hospital with plenty of pain medication to get you through the first 2/3 days.

You will need to rest up & just take things easy after the procedure. Enjoy being waited on if there is someone who can do this for you! xx

[alicexmae in reply to FluffyPink]

Thank you for the tip! X

[sarahemmahughes]

I’d advise two weeks to be on the safe side. ♥️ I’m self employed and went back after a week but I could work from bed but anything more strenuous than that would have been exhausting whilst recovering x

[GrittyReads]

Hi alicexmae,Sorry, I thought I was replying to you, when in fact I replied to laurenhtn.

However, I've now seen your replies to various posts, lower down, where women are saying about how much time to arrange to be off work, after the lap. Please see * below.

I had one exploratory lap in my 30s, where nothing was done as the endo tissue was minimal (despite all the massive amount of pain I was in, every time I stopped taking the pill). At that time I was just advised to go back on the pill. I was fine after a day or two, and soon back at my desk, but spent most of the next 10+ years on the pill. Later in my early 50s, I had another lap, and the surgeon removed a lot of scattered endo (at that time I still wasn't asked if this was what I wanted). I was pain-free for a few months, then it all came back, but much, much worse. I then spent more years on the pill, as to stop taking it was agony. Then a lovely (private) gynae arranged for me to have a mirena coil fitted in my mid-50s and I was pain-free after that, and am now post-menopause with the coil removed.

As to your question:

If they don't remove any tissue, you may only need a day or so off work. If they remove tissue, yes, you may need a couple of weeks. However, please read what I've said to laurenhtn, as if they are not a specialised endo team, I would be dubious about having it removed. For an exploratory lap they should ask you - before the op - if you agree to them removing any endo they find, or not. It's up to you, but it does depend on what sort of endo tissue they find, and where it is. Personally if I was having to live through all this again, I would want to have it all done by a BSCG, team.

* NB: You say you are expecting an 'exploratory lap'.

My understanding of this is that they are just looking for the presence of Endo, and thoroughly checking out the entire abdominal cavity, to see if there is any endo tissue anywhere in the cavity ... as well as checking what sort of endo it is.

If you only 'suspect' you have endo, then I wouldn't expect them to remove any endo tissue - at all - on a first lap:

You should be offered a form to sign, before the operation, to say if you only want a diagnosis and a report of what is there, and where it is ... or if you agree to them to removing any endo tissue that they find. It's up to you, but I really would talk to the advisors at 'Endo UK' who run this site (details on the right).

[lem00003]

I had a laparoscopy just over three weeks ago privately at a BSGE approved centre. At the initial consultation my surgeon said two weeks off work would be the minimum and a longer time off would depend on what he found and what was eventually removed.

In the end, I have Stage 3 endometriosis in many places which he removed through excision (mainly) and diathermy on my ovary (if I remember correctly). I was signed off work for 4 weeks - in hindsight there is no way I would've been able to go back after 2 weeks. It took a good week to ten days before I felt less bloated, bruised and generally less fragile. Doing much better now but still tired in the afternoons and needing to rest.

I would say to keep an open mind on an exact time. It might also be a good idea to ask for a little longer (if you can) to cover your first period. I now have my first period since the Lap and am grateful I wasn't due at work at the same time.

[alicexmae in reply to lem00003]

Thank you, hope you're feeling better!