Laparoscopy recovery

[Lausmi]

Hello everyone, I have recently had a laparoscopy and been diagnosed with endometriosis. The surgeon told me they were only able to take some of it away due to some being attached to other places that weren't safe to remove such as my 'tubes' to my kidneys. Since being diagnosed with endometriosis no-one has really gave me a whole lot of information on it or explained how to live with it. I had the laparoscopy last Friday and whilst I know it hasn't been that long since the op, I wasn't expecting to still be in this much pain. I was wondering how anyone else was feeling after surgery and where can go from here.. many thanks x

[Sez73]

Hi Lausmi, I feel for you having been in that very position myself. I was probably in a similar state in 2013 when I had my first diagnostic lap and the surgeons found a nodule of deeply infiltrating endometriosis on my left ureter (kidney to bladder tube). As with you, the surgeons wouldn't remove the whole nodule as they felt it too risky re damaging the ureter as it was very close to the uterine artery as well and they obviously didn't want to risk further complications. However.... by not removing this nodule fully, symptoms soon came back, probably no more than 6 months after surgery. But I did have a very severe case of aggressive endometriosis - it had blasted both ureters, uterosacral ligaments, both pelvic sidewalls/cul de sac and this nodule was trying its best to bury into my ureter, so my post surgery journey may be very different to yours.

Firstly, I'd say having the lap just under a week ago, it's fairly normal to still be in quite a bit of pain, I certainly was anyway. Any work on the ureters will make you feel vulnerable and sore to pee etc. My ureter was damaged badly so I had to have a stent put in for 3 months until the ureter was able to heal more after surgery, but it sounds as if you're ok on that front which is good.

Please don't underestimate what excision for endo involves. You will be very sore and battered and without knowing the extent of the excision work done, I think it's fairly normal to be feeling the way you do. It will take time, you will be quite inflamed after surgery as things will be very angry inside. Don't underestimate things when you may look healthy on the outside, because you don't see the rawness of your insides, you think you're ok. You must give yourself educate time to rest as you'll be very tired after surgery too as your body fights to heal. You should start to notice improvement in pain levels after the lap, however, as I found, if endometriosis is left behind it can still cause problems. After my initial lap in 2013, I tried IVF a year afterwards and that was enough to give the remaining endo a right old blast of hormones which sent me into freefall and I felt awful once again. I'd suffered with terrible symptoms for over 15 years before I finally got doctors to take note and when I did have a diagnostic lap, I was riddled with 20 odd years worth of active aggressive endometriosis. Unfortunately, a year after the lap, and after 2 rounds of IVF I felt I was back to square one. THat's often the case with endo, 2 steps forward one step back.

I sought the help of a far more experienced surgeon in 2015 and had 2 operations with him. The first to remove all the adhesions which had formed since my first lap 2 years previous (my ureter had stuck to my ovary, cervix and bowel since the first lap). He also removed some chocolate cysts. More importantly, he was able to remove the nodule on my ureter which at last gave me some respite from the lower back pain I have had for years. After that surgery, I then saw him for radical excision of endometriosis, this is a very specific operation (which unfortunately is eyewateringly expensive and not many do) where all the peritoneum is removed (this is the skin which surrounds the pelvis and which covers your internal organs). The surgeon found that this "skin" grows back normally and free of endo. In normal endo excision, surgeons just excise the bits of endometriosis they can actually see, but unfortunately endometriosis can be microscopic and not seen to the naked eye, which is why this radical excision is more effective. That operation was over 8hrs long and very traumatic, however, it was the first op to give me some respite. I felt great after about 5 months, it is a slow recovery process and brutal surgery, but I found it worthwhile. Unfortunately after that I through 3 further cycles of IVF at myself which I'm now paying the price for!

Thats' the thing with endo, if you can get it excised and on to adequate treatment to keep it at bay, that should help. Unfortunately, for fertility reasons, I needed to stay off contraception and in turn my natural cycle and hormones each month flared up the endo quickly and of course IVF blasted it good and proper!

I'm 43 now and while only diagnosed officially aged 38, it has still robbed me of an awful lot of life as I had near on 18 years struggling with the most horrendous chronic fatigue/back pain etc where GPs didn't believe me.

You're right, there is no where near enough vital information out there which makes this forum, and others like it, so valuable. Ask whatever you need to, as you will usually find someone has gone through similar and can maybe advise. What I unfortunately have found is how you feel very lonely in this process and don't get the help you need easily, I feel the medical industry fail us terribly and the sooner the scope of endometriosis is recognised the better as it ruins so many lives, yet so many don't even know what it is.

The best advice i can give is read, read read and get informed as possible. Knowledge is power. I found GPs etc completely lacking in knowing exactly what endo was and it was important for me to be in control of it rather than the other way around. You do have to adapt life when you have endo, I made myself worse as I was desperate to conceive, but if that is not relevant to you, there are good ways to manage it and keep it at bay.

Post whatever question you need to and hopefully the lovely ladies on this forum can help. I'm sorry to have prattled on but I hope I have been of some help. It can be a very lonely journey, so try and find out as much as you can and never be afraid to ask any question. If a GP or surgeon isn't right for you, then change them and find someone who has your best interests at heart who can advise you well. You can live with endo, you just need a combination of the right help (medical), the right surgery if applicable, the right support from family/friends and a desire to not let it get the better of you.

Feel free to message me with any further questions and I'll do what I can to help, and I'm sure others will too. All the very best with your recovery. Be kind to yourself and don't push yourself and I'm sure you'll start to see some improvement soon. Sxx

[Lausmi in reply to Sez73]

Thank you so much for you're reply. I'll apologise I'm not able to reply in full, feeling very tired and sore today. But you have hit the nail on the head, it makes you feel so lonely. No one understands it, that hasn't gone through it or going through it. You're made to feel like you're being over dramatic and making it out to be more than it is. I feel like I can't talk to my partner properly as he just doesn't see things the way I do. He keeps telling me it will be fine and no point in worrying, but that's all I seem to do. It really does help knowing there are people out there, that understand and whilst no 2 people's experience is the same, they can relate to and sympathise. I'm not 100% what to do yet, I have been told to book in with a family planning centre to get a coil fitted. Guess all I can do is go and see what they advise. Again, thank you for your reply.x

[Sez73 in reply to Lausmi]

You're very welcome, you rest up. Completely understand it can feel lonely and it is a totally underestimated illness. I had a 9hr operation & just because it was done by keyhole & I only had 2 nights in hospital, family thought it was no big deal. They think I overreact when I say I've suffered trauma post op, no one will ever know who hasn't been through it themselves. Lots of people on here know exactly how it feels. Happy to answer any more questions, just let me know. All the very best for a speedy recovery and onward journey xx

[Marcia71]

Hi Lausmi, its not unusual to feel pain still after a week, depending on what was done it can take several weeks to recover from. I'm 5 weeks post lap and pain has subsided now but I'm still really tired. i had endo excision. Did you have excision or diathermy?

You need to be referred to a BSGE centre as they deal with the type of endo your consultant has diagnosed. If they haven't already referred you, your GP can, but most GP's haven't heard of them so take info with you:

bsge.org.uk/centre/

If you're on Facebook join a group called Endo revisited UK as you can get help on surgeons and other treatment options too.

Best of luck

[Lausmi in reply to Marcia71]

Many thanks for your reply, I haven't been advised of anything else to do really. I was just sent home with a letter vaguely stating what had been done during op, so any advise is greatly appreciated thank you. I'll take a good look at the link you have provided. Many thanks