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General health

Anyone had a laparoscopy for endo?

46 replies

SpongeCake23 · 12/12/2017 14:55

Just that.

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

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HelloGabriel · 12/12/2017 14:56

Me Smile

You might be referred to gynae though as it's not something a GP will likely diagnose.

Ask away.

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IncidentalAnarchist · 12/12/2017 14:58

I’ve had three. Ask any questions :)

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BuckysRoboticArm · 12/12/2017 14:58

I've had a couple. They're not so bad, honest. What are you worried about op? Talk to us Smile

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MumOfTwoMasterOfNone · 12/12/2017 14:59

Had a laparoscopy for suspected endo but it wasn't. They did sort out my other problems while they were in there, but it could have been done by hysteroscopy which is much better, which is what I had this time.

It's unpleasant but you will be fine. The worst part was the pain in my shoulders from the gas, but it's nothing to get worked up over.

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SeaToSki · 12/12/2017 15:02

I had one this summer. Very straight forward and Im glad I did it as it has sorted out a lot of the pain and heavy periods. I also had a mirena put in as well to reduce /slow the chance of it reoccurring.

Do you have any specific questions?

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dontquotemeondailymail · 12/12/2017 15:05

Same as PP, had a laparoscopy for suspected endo but turned out not to be the case. The procedure is fine, in & out in one day but yes, agree that the shoulder pain was the worst part.

Limited scarring, and fairly quick recovery time.

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welshweasel · 12/12/2017 15:05

Yes. I’ve had four. I would caution you that if you get a diagnosis of endometriosis then you need to get clued up on treatment fast. Don’t accept ablation or hormonal treatment. Excision is the gold standard and if done by a skilled surgeon has a very low recurrence rate. I can recommend joining the Nancy’s nook Facebook page - it’s American but there’s quite a lot of UK ladies on there and there’s a wealth of useful information to get yourself up to speed on the disease.

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TammySwansonTwo · 12/12/2017 15:09

I'm up to six laparoscopies now. I doubt your GP will suggest one but hopefully they'll refer you to a gynae who will do one if you have symptoms of endometriosis. Feel free to ask if you have any questions. The recovery can be very quick if it's just a diagnostic lap or with minimal treatment, to much longer if you have lots of disease cut or burnt away (ideally it should be cut away for maximum efficacy - it's called excision, worth asking the gynae you see if they do this).

The thing that always surprises people is the gas pain - they inflate your tummy and the gas gets trapped under your diaphragm and causes shoulder pain, but there are things you can do to reduce it.

It's really not that bad x

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SpongeCake23 · 12/12/2017 15:11

I suspect I have endo on my bowel and in TTC so I know something needs to be done. I've read stories where people have ended up with colostomy bags after because their bowel has been damaged by the surgery.

I'm also terrified of being put to sleep under general anaesthetic. I've never had one before and I don't like the idea at all Sad

Do you think they'll do it under local or epidural/spinal?

I'm also scared I'll wake up (if I'm out to sleep) or after the op and they'll say "I'm sorry we've had to remove both your ovaries and Fallopian tubes as it was too extensive and you now can't have a baby" Sad

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SpongeCake23 · 12/12/2017 15:12

@TammySwansonTwo How long is the recovery time for the more extensive endo you mentioned?

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TammySwansonTwo · 12/12/2017 15:20

It varies so much by how much work is done, where it is etc. I've always had severe pain but only mild to moderate endo. The most extensive surgery I've had, where they had to cut out some deep nodules and separate a lot of adhesions, it took me about 5 weeks to get back to work. After my first diagnostic lap (where they missed it completely!) I was fine in less than a week.

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SpongeCake23 · 12/12/2017 15:24

@TammySwansonTwo Thanks. I fear I've had so much time off work for various ailments including a month off recently for stress, that they won't look on it favourably Sad

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welshweasel · 12/12/2017 15:25

You can’t have it done under spinal. You need a full anaesthetic but don’t worry, it’s very safe. They won’t just remove your ovaries or tubes without telling you. Ideally I’d go for just a diagnostic laparoscopy. That way, you then know what you’re dealing with and can research the best treatment/best hospital to go to.

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TammySwansonTwo · 12/12/2017 15:25

Honestly, just because you have bowel symptoms doesn't mean you have endo on your bowel - I had terrible bowel spasms, diarrhoea and rectal pain for 10 years, it was caused by endo in my pouch of Douglas and adhesions on my bowel. Separating those completely resolved the problem. I've had a bowel prep before most laps but have never had any endo on my bowel. It's extremely extremely rare that such extensive bowel work would be needed that a colostomy bag would be required and they'd usually have to close you up and schedule a surgery with a colorectal surgeon for extensive bowel endo.

Please don't worry about them removing things - you can refuse to give consent for this, I have done at pretty much every surgery. Basically this means that if any reproductive organs need to be removed they'd have to stop and do it at another time after it has been discussed. This is absolutely a last resort though. I had one very scarred and adhered tube and there was no question of them removing it - they freed it and at my next lap they did a dye test and it was working fine.

Try to remember that with endo the symptoms and extent of disease don't always correlate, in fact they often don't - so even if your symptoms are very severe it doesn't mean the damage is severe.

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welshweasel · 12/12/2017 15:25

I was back at work within 2 weeks of all my laps, even the very extensive one.

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TammySwansonTwo · 12/12/2017 15:26

If you're near or can travel to Oxford, there's an excellent endo team at the John Radcliffe and some very skilled fertility specialists too. I live a few hours away but have had most of my surgeries there.

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FaithEverPresent · 12/12/2017 15:50

I’m having one next week. I’ve had bad periods pretty much since they started. Now I’m struggling with chronic abdo pain - all scans/tests so far are normal which is why I got referred to Gynae. I’m at the point where I’d rather have the surgery and be better than continue to live with this. I’ll let you know how I get on.

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AttilaTheMeerkat · 12/12/2017 15:53

I have had this type of surgery done and this was my first operation too under GA. I was also somewhat apprehensive to say the least when I was advised that I needed this surgery but in my case the fear of it was worse than the reality. Extensive endometriosis was found and removed via laser; mild to moderate disease can cause a lot of pain. They are not going to remove anything without your consent and endometriosis is not something where organs are removed.

I would ensure as far as possible that you are given a follow up appointment a week or so post lap to discuss the lap findings. This is important. You do not want to be spoken to about this op whilst you are in the recovery room; this is bad practice on the part of the hospital and surgical team if that happens. I can give you a list of questions that may be useful to you to ask them about the lap findings if you so wish. Also you do not want any more surgery than you absolutely need; if a lap is to be done then I would ensure as far as possible that it is not just a diagnostic lap.

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TammySwansonTwo · 12/12/2017 15:56

Agree with Attila - many places just want to do diagnostic first as they can schedule more this way, but this isnt what's best for you as a patient since you want as few surgeries as you can really. My last one was almost 3 years ago and my symptoms are awful but I'm holding it since I struggle more after each one.

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stilllookingforthehills · 12/12/2017 15:59

Yes I had it just before I started IVF treatment

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bengalcat · 12/12/2017 16:27

have you seen a gynaecologist who's recommended one ?

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FaithEverPresent · 12/12/2017 16:39

Please do bear in mind that anaesthetics are pretty safe these days. I work in this field and I’ve seen very few complications from anaesthetic in the time I’ve been there. Literally only a couple. Both were patients with complex health problems prior to the op, both were okay and went to the ICU for a bit to recover.

Don’t get too worried about it all yet. See what your GP says and then Gynae (assuming you’re referred).

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welshweasel · 12/12/2017 16:41

I agree diagnostic then treatment is not ideal but most patients don’t have the luxury of having an endo specialist (that can do excision surgery) doing their initial lap. If you do, then brilliant, crack on and have treatment. Sadly I didnt and (despite being a surgeon myself so I really should have known better) ended up having ineffective ablation that actually ended up making my symptoms worse, and they completely missed most of the disease. I then found an excision specialist and had full excision of severe disease and remain endo free many years later. My suggestion to get a diagnostic lap first assumes that the OP is not seeing a highly regarded specialist.

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FaithEverPresent · 12/12/2017 20:38

Would anyone who was diagnosed with ‘something else’ be willing to share what was found? I’m being investigated for endo because they can’t find anything else essentially.

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TammySwansonTwo · 12/12/2017 22:17

When my first lap was "clear" I was told there was no other possible physical cause for my pain and therefore it was psychosomatic. They just didn't know what they were looking for. I also have adenomyosis which can't be visualised on an ultrasound or laparoscopy but was seen on an MRI scan.

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