Anyone had a laparoscopy for endo?

[SpongeCake23]

Just that.

I'm thinking that's what the GP is going to offer. I'm terrified

Ooo, following. Being refered to gyn for suspected endo and definite adenomyosis. Mine was picked up on US tammy

That’s useful to know, thank you Tammy. I have never been told outright that the pain I have is possibly psychological but after 16 months of pain, the last 4 so bad I can’t work, I’ve had to push for investigations! If my lap is normal, I’ll ask about an MRI.

If your lap is clear, try and get a second opinion from a specialist if you can. I had to pay privately for the consultation, but then they put me on their NHS list (you can request to be referred to them out of area, but my gp refused as I'd already had a clear lap). In terms of MRI, you have to have someone very skilled in this condition looking at it, as it takes knowledge to interpret the results. Endo shouldn't be missed on a laparoscopy - in mine there weren't even enough incisions to enter the necessary instruments to examine the full area, and I was in theatre less than ten minutes. My specialist looks around for 45 minutes at least before he even starts treating (oh and gives you a DVD of the treatment!). From this DVD I know that my endo has an atypical presentation (yellow and clear rather than red or black) so not surprised it was missed with a cursory look.

I hope you get sorted quickly - took me 10 years to get a diagnosis, which is sadly not uncommon. I had to stop working six years ago and am now self employed. It's tough. are they giving you adequate pain relief?

Thanks. The nearest specialists are over an hour away so I’m going with a local Gynae consultant to see what he finds and will take it from there but I know who to ask to be referred to if appropriate.

In terms of pain relief - just about! I’m on paracetamol, 60mg codeine 4 times a day and pregablin 200mg twice a day. I can’t take anti-inflammatories. I was on the codeine and still in agony. I had to see 3 different GPs at my practice before I got the pregablin. I am generally okay but functional, the drugs make me fuzzy so I’m loathe to up them much more.

It's tricky. If your pain is so bad that youre off working I'd be asking for that codeine to be replaced by a stronger opioid / opiate until your pain is better managed. I had to battle for a long time to get appropriate pain relief and I've been on morphine or an equivalent for over 10 years now. Not ideal obviously but a damn sight better than being in uncontrollable agony and ending up in A&E unconscious multiple times a month! Glad you know where your nearest specialist is - I travel 3 hours to see mine, totally worth it!

Yeah it’s mostly manageable with what I’m on. Oramorph made me really sick so they were wary of going any further up the opiate ladder but the neuropathic drugs made a big difference. Only 6 more days til my op so I’m happy to stick with what I’m on til I have the op and then see what the outcome of that is!

I ended up with a colostomy bag after a routine hysteroscopy ended up with a hole in my uterus and bowel so it's not always straightforward.

Crikey Dancing! I know there’s always the possibility of finding something unexpected that needs to be sorted or of complications from the surgery itself, as well as anaesthetic complications. I’ve worked in theatres for a year and most ops go as planned but I’ve learnt to expect the unexpected.

I've had 3 for gyne adhesions and they were straight forward and helped (adhesions can come back).

Minimal healing time with a lap. You will be fine and they'll get to have a good look around in a way they can't with an ultrasound.

Yes it was fine, easy recovery, and I conceived the next month

Also, regarding your colostomy bag question, the one time I had it done, they had me in the night before and put me on powerful laxatives to make sure my bowel was empty and lower the risk. If this concerns you, it might be worth bringing up your fear at your consultation, they can ease your mind.

dancing

There is an awful case in bristol, in the news at the moment. Poor woman has terrible complications after endo surgery.

I am not scared of surgery generally, but this frightens me;

www.independent.co.uk/life-style/health-and-families/health-news/woman-suffocating-faeces-kelly-yeoman-endometriosis-bowel-disease-gofund-me-bristol-st-michaels-a8079396.html

Update to that though

www.bbc.co.uk/news/uk-england-bristol-42322076

Faith - no, wasn't due to any previously undiscovered conditions. Holes made by poking surgical instruments through uterus and into bowel.

Ouch Dancing, that’s the last thing you want! Surgery to investigate and they end up making you worse! I’ll admit to being a bit nervous about it all.

Faith - my experience was pretty far removed from what should be expected so unlikely you will have to deal with anything like that

@DancingHipposOnAcid that sounds terrible. Can you sue for that?

Some of these stories, including the article posted are frightening me and putting me off. I already have IBS and GERD, I don't need any other issues!

I know there is probably no other way I'll get pregnant at this rate though oh the things we women have to endure!

And I'm still terrified of being put under general!

Well I thought I’d update. I have had my laparoscopy. Op went fine. Only problem with the anaesthetic was finding a vein for the cannula because my hands were so cold! I was dopey, then I’m asleep then they were waking me up in Recovery. I do have endometriosis and they have treated it. After years of pain on and off, with awful pain the last four months it is such a relief to finally know and have some relief from the pain. I am tender and sore but already can tell I’m better than I was. Once again Spongecake23 don’t worry until you actually know you’re having an operation and remember anaesthetics these days are very safe.

I’m glad you have some answers. Hopefully you will improve but it’s very important that you get all the details as to how they treated the endo. If they ablated/burned it the chance of it coming back are very high. If your symptoms don’t improve or come back quickly then go and see an endo specialist that can excise the lesions.

Thanks Welsh, after years of pain on and off its great to finally have a diagnosis! I had diathermy to the endo. I’m back to the GP in the New Year and I will ask about referral to a specialist. The closest ones to me are over an hour away but now I have a proper diagnosis I will be asking to be referred.