Should I go ahead with this surgery?

[laproscopyadvice]

I've suffered on and off over the past 3 years since the birth of my youngest DC with severe period pains to the point my symptoms often mirror endometriosis (severe pain on using the toilet to the point I'm crippled and crying out in pain, unable to stand at times, almost vomiting etc). However, some periods are much more bearable, so it's not every single one, and the bad days of the worst periods last for 2-3 days a month tops, then I'm fine for the rest of the month. So when it's bad, it's horrific and debilitating, but it's short lived and not every month.

Here's my dilemma. I'm finally at the top of a year long waiting list for a laparoscopy, and my surgery date is a few weeks away. I have a pre operative appointment with a consultant this week to discuss it further and weigh up pros and cons etc. But just thought I'd turn to MN for advice from anyone with experience either of endometriosis or a laparoscopy? I don't want to take the decision to go under a general lightly, partly because of the recovery time needed off work, partly because I'm scared, and most importantly because it means I'd likely struggle to look after my toddler for a while.

For context I'm 39 (if age is relevant) and have a partner who could support me if needed whilst I recovered, but it would mean he'd lose overtime shifts that we could do with...

Any advice??

A laparoscopy is quite a minor day surgery operation and you’re possibly quite lucky to get it, if you leave it (like I did) you might develop much worse pain and then have a very long wait to try again. I know so many people desperate for laparoscopies so my judgement may be clouded!

Yes, you obviously need the surgery, it's a minor procedure, a day case. You need to know what is going on and the sooner the better. Hundreds of people are having minor operations every day, the risks are very low and you might get some answers.

The straws you are clutching at to get out of it are very flimsy, you are just worried - go to the pre op and let them reassure you it will be fine.

The recovery time is minimal. It's day surgery, and you need to rest a little for maybe 24 hours afterwards. There can be gas pains in the shoulders oddly, from the gas they inflate you with to see around in there. I wouldn't put it off.

have a partner who could support me if needed whilst I recovered, but it would mean he'd lose overtime shifts that we could do with...

It's not a lengthy recovery!

I had to get uterine surgery and I’m too heavy for GA so they gave me an epidural instead.

I wouldn’t recommend an epidural but if it’s a GA giving you anxiety you could ask for it to be done via epidural instead?

It's very difficult to say, what the recovery time will be, as they won't know until they actually put in the camera if you have endometriosis or not and what degree you have it and therefore what treatment you'll need.

Sometimes, they'll put in the camera and find that there isn't very much to see and sometimes they'll put it in and find that there is a widespread issue and you have to stay overnight.

I think you'll need to bite the bullet and have it done though, if it gets worse, you'll end up right at the bottom of the waiting list again, having to start again.

If you decide to leave it now - whatever it turns out to be - it could get worse and past the point where laparoscopic surgery is an option. Avoid that situation by dealing with it now.

I had endo, def get the surgery. The bugger spreads and spreads, so if you dont get it removed you end up in a much worse state. I ended up with a total hysterectomy and sapling oophorectomy via the vagina and some keyholes (i know i spelt that wrong!). Best decision of my life. No more pain, and HRT (just estrogen) means I am going to have a nice even gradual menopause when I decide I want to.

Don’t minimise the pain you are in. 2-3 days a month is 10% of your life spent in pain – and that’s not counting the time you spend probably worrying about it and anticipating it.

I've got severe endo and was diagnosed in my late 30's. You need to have the surgery so you know exactly what you're dealing with. I know it's generally shrugged off as no big deal, but if it becomes severe it can damage your bowel/kidneys/bladder and in my experience pain levels can increase very suddenly and I went from pain I could cope with to pain that had my husband calling an ambulance overnight. Happy the say more about my disease/treatment if people are interested.

It may well not be 'mirroring' endo, it could be endo. You have the symptoms. If this is NHS treatment I would also say, given gynae waiting lists right now, if you've got a surgery date then do it.

Recovery from a general isn’t bad at all. I had one a few years ago and was terrified even though I’m a nurse. Was just a bit sleepy for the rest of the day then woke up the next day fine.

id go with it and get it done because if you don’t and it gets worse you’ll need a re-referral usually and be right back at the bottom of the waiting list and it might not just be a year next time depending on length of waiting lists

I’ve had three laparoscopies- it’s very minor day surgery! One incision in the belly button and one or two in the lower abdomen depending on what is being looked at or done. I’ve had my ovaries removed via laparoscopy.

The wounds will be very small and should heal quickly. I’ve once had a minor infection in one which a dose of antibiotics cured.

There can be some discomfort afterwards in the shoulders because of gas.

It’s very straightforward - nothing to worry about.

Get it. The incredibly long Gynae wait list beside, you can't know the extent of endometriosis (if you have it) until they take a look.

I've had 4 GAs over my life (3 aged 11/12, 1 aged 31). Waking up you might be a little bit groggy for a few hours, but at worst, a good night's sleep will put you right.

Pain wise, it's 2-3 small incisions. Some soreness is to be expected, but nothing on the order you'd get with an open procedure. Regular painkillers will help, and I wouldn't anticipate you struggling to look after your toddler.

clearly a lot of PPs had a much better recovery than me and I have a high pain threshold due to chronic pain! Others on FB groups I am on for endo are more my end of the scale too. Just so you know it’s not a walk in the park for everyone.

I did have quite a lot of excision done and a cyst removed and I think it depends a bit on that. Had to stay in 2 nights in the end. Lots of pain for at least the first week (on codeine). It was two weeks before I would have been able to look after a toddler for sure and I felt nauseous constantly for about that long too. Would your lap be diagnostic only?

my (very respected endo specialist) consultant put 4 weeks on the fit note and described it to be as “major surgery”.

If your partner needed surgery, what would you say to him?

@dinmin I've had 3 laparoscopies so far, all different, all with very different recoveries, so it really does depend on what they do while they are in there, so to speak. (have had 2 long and difficult recoveries, so you are not alone!)

Yes of course you need to have the surgery. If there is endo present they may be able to remove some/all of it with ablation then your symptoms will settle. If you don't have it you risk it getting significantly worse over time and being back at the end of the queue for the gynae referral - currently 1yr plus in my hometown and that's just for a consultation!

I can't comment on the procedure itself but hopefully can reassure you about the GA. I had one 3 weeks ago, unexpectedly, and I have a BMI of 45. It was totally fine.. felt fine afterwards, went back to the hotel (we were on holiday) and had the best night's sleep I have had in years and was then in the theme parks the following morning.

Obviously you may have a longer recovery time due to the procedure itself, but the GA is very likely nothing to worry about.

Thanks everyone. I know it makes sense to go ahead I'm just so anxious. I'm also on a Facebook group for endometriosis and many women post on there after their laparoscopies and seem to be in a lot of pain, and the scars as well.. that worries me.

I know it sounds minor but I'm quite active and enjoy running and weigh training and I'm worried I'll not be able to do that for a while, I need that for my mental health. Does anyone know how long I'll likely be out of action for?

I realise I'm lucky to have a date for this as lots lf women are waiting years, I've waited just under that, about 9-10 months I think. So I do understand that I'm fortunate to have the option and should probably go ahead.

Also - I'm really anxious about nausea - is this a side effect from the GA?

From what I understand it is sort of a side effect but more common in gynae surgery. You can get anti sickness meds and peppermint tea etc help. You can also adjust pain meds if codeine etc makes it worse. For me I wasn’t actually sick at any point not really felt I was going to be so didn’t have that horrible fear feeling, jusy felt nauseous if that makes sense!

I used to work on a gynae day case unit. It is considered very minor surgery, as it’s keyhole. You will only have three small incisions that heal very quickly. You may feel sick after a GA but there are very effective medications available to treat this. During surgery, they put air into your abdomen. You will probably have some pain from this after, but painkillers and keeping active will help.

From what you’ve said, I gather this laparoscopy is purely investigating what’s going on. Therefore, it won’t cure anything or make you feel any better.

You will go home the same day and will feel fine in two or three days. Sometimes a GA can make you feel groggy for a few days.

Go for the pre op appointment armed with all your questions for the consultant. You’ll have all the information then for a fully informed decision.
Then, as a doctor said to me, hope for the best plan for the worst, so have everything in place for childcare, meals and someone to look after you for a few days should it become necessarily.
And as a pp said if you’ve got symptoms now are they realistically going to get any better without surgery?

( and I had keyhole surgery couple of months back—- the care was superb, lovely staff, felt crap for a few days but I’m nearly 30 years older than you. Now I’m so glad I had it done, feel better than I have in years)

Is there anything specific that's making you anxious? It's normal to be a bit nervous about any surgery.

It's worth bearing in mind that the women who regularly post on endo groups are often in a bad place with the disease which is why they're spending a lot of time trying to find support online, and it isn't like that for everyone. Lots of women have surgery, get their disease under control, and move on with their lives. I tried a few online groups when I was first diagnosed and trying to come to terms with it, but don't look at them now because it's not helpful.

No-one can tell you what your recovery will be like because it's a piece of string question, I'm afraid - this is something you need to discuss when you have your pre-op assessment (and also make sure you understand what their plan is - what are they intending to do?). There are also different types of laparoscopy. Diagnostic involves a cut in the belly button to insert a camera and taking photos of any disease they find and then working out a treatment plan, or they may suggest attempting to treat in this first lap (usually ablation) but be aware that they may find disease they can't treat.

Nausea is manageable and you might not suffer with it. There are meds they can give you to manage it if necessary.

I would recommend having a look at the NICE guidelines for endo management. It's worth being aware that there are different types of surgery and that not all gynecologists are endometriosis specialists. If they find endometriosis in your bladder or bowel, this needs to be dealt with by a specialist at a BSGE centre (these are NHS endo clinics where the gynaes are trained to carry out excision, which involves cutting the lesions out, rather than ablation which a general gynae may offer. Ablation involves cauterising/burning the lesions if they are small, and doesn't always work). Some general gynaes claim they can manage severe endo when they can't and shouldn't.

www.nice.org.uk/guidance/ng73/chapter/Recommendations

I'd tell him to go ahead with it, no hesitation.

I just feel really anxious and worried about being 'out of action'. Doesn't help that I have a really busy job and a toddler, I'm used to being up and about and active, so it's just massive anxiety about being less able and feeling vulnerable, if that makes sense. But it's seems to be a minor procedure from what others are saying, which helps to put my mind at rest. Hopefully I'll get a chance to ask the consultant some more questions this week at my appointment.

Side effects vary from person to person. My aunt suffers from nausea after GA, it is only temporary. I have had 5 GA and haven´t suffered nausea EVER.

If you tell the anaesthetist that you have problems with nausea and ask him or her to add in more anti sickness that will help.