Pre-op lap meeting left me deflated

[saha84]

Hi everyone,

I had my preop appointment yesterday for a diagnostic lap as well as potential treatment of endo if that's what they find. Lap is scheduled for 21st August.

I was expecting the pre-op appointment to be with the consultant but it was actually with a nurse and was much more basic than I was expecting. It was more of a "check your vitals/walk through of what to expect on the day" than anything else which is fine but not what I expected. I had some questions written down and she took me through some stuff but when I asked her what to expect post op in terms of maybe getting the coil or changing my pill etc to stop the endo from coming back, she basically old me that once they laser it off, I'll pretty much go back to normal and they won't do anything else or need to see me again. She said I would just need to see what my next period was like and take it from there but she would expect me to recover from the surgery and go back to happy, healthy me. Although this sounds great, it kind of goes against most information I've found for myself and I now feel a little disconnected from my treatment if that makes sense.

So far, I've seen about 3 different doctors at my surgery (one of which has been especially good with me and another that specializes in women's health who gave me a referral to a gynae really quickly). Up to this point, despite the fact that I had seen 3 different doctors, I felt that my symptoms were taken seriously and I was referred much quicker than a lot of people seem to have been so I was feeling pretty lucky. I then saw the gynae who seems pretty sure endo is what I have and was really good with me. I then saw this nurse who has made me nervous about what happens post surgery and knowing I will have another consultant doing the surgery, I now feel like I'm being passed from pillar to post and like no one is really following my case all the way through. I'm worried I won't have enough time on the day pre-op to speak to the surgeon and also post-op to make sure I get all the details of my diagnosis and where I go from here.

My symptoms have been present for around 4years though I only recently (end of 2014) started to put them all together and come to the conclusion it was something like endometriosis but since the end of 2014 to now I have had quite a dramatic decline in my health - exhaustion, constant abdominal pains around my pelvis, bowels and stomach as well as chronic constipation, poor concentration and being overly emotional and depressed. It's therefore really important to me that I feel in control of what is happening and that I feel there is going to be a positive outcome post surgery. Don't get me wrong, I know each case is different and I would have to be extremely lucky to have this lap be the end of it, but I want to feel positive about it rather than worried and nervous about the future.

Can anyone offer me some advise about what to expect in terms of time spent with the consultant on the day of the lap? Do they go over your symptoms again or discuss any developments from the initial referral? How do I make sure I get the most out of the discussion post op to know what to do next?

I am planning on having a notepad and pen for my partner to take down some info in case I'm still a bit out of it from the anesthetic. Is there any other advice or information from your own experiences you can give me?

Many thanks in advance

[Mabes]

The pre-op assessment sounds normal - it is usually a nurse (occasionally a doctor if someone is a high risk for the operation/anaesthesia) who performs it. It really is for them to check you are healthy enough to be operated on and if you have other health problems for them to plan how to take those into account for the anaesthesia and surgery. It's not really to do with your actual endometriosis. I can understand how confusing and off putting it is when the experience is not what you are expecting.

I'm not sure about other's experiences, but with my laparoscopy, when I met the surgeon he was a completely different person to the consultant/surgeon who I'd last seen and who I had been told would be operating on me! I'd not been informed that the original guy had left. I literally had about a few minutes during which the new surgeon explained that they would be doing a diagnostic lap, would excise any endo found, and the associated risks, and that they would also insert a Mirena. I then had to read a consent form and sign it. That was it. It was VERY quick. I was lucky that I knew of this new surgeon and he was actually an endometriosis specialist.

I did not get any aftercare information - I just went by what I knew from on here. I saw the surgeon in recovery. As I had read many horror stories of women going home knowing nothing because they'd been too out of it in recovery, I remember taking every ounce of strength to wake up and ask him questions! (It's actually quite funny as I must have seemed quite mad). After telling me what he'd found and done, he told me he'd see me in clinic in 6 months (turned out to be 8 months). I didn't see him again until then. Your partner won't be with you in recovery, so unless the surgeon visits you afterwards you may have to try to do the same, or ask a kind nurse to read your notes and tell you what happened.

I was kept in overnight for various reasons, and the next day one of the gynae team came to see me before I was discharged. I asked him a few questions but he was hopeless as he basically contradicted the surgeon on the thing I wanted to know/discuss... So that was pretty pointless.

A few things leapt out at me from your post:

Laser - it doesn't get deep endo deposits so unless they are very superficial the endo tends to eventually come back (sometimes quite quickly, sometimes after a longer period of time). You could ask for excision surgery, but I guess the surgeon needs to be comfortable and capable of this and allow enough time. You might want to check that before your surgery date.

Your consultant/surgeon - whoever is doing your surgery, are they an endometriosis specialist... Check they are not just a general gynaecologist as general gynaecologists are prone to missing endometriosis or not checking all the secretive areas it can hide such as the pouch of Douglas or between the bladder and uterus.

Hormone therapy - most women tend to opt for some form of hormone treatment post op. If you are considering the Mirena, you would probably be wise to get it inserted during the operation while you are under anaesthesia (as it can be painful otherwise). If not, then look at the progesterone only pill, or the depo provera injection etc.