Terrified of surgery in few weeks to removed endo sticking my bowels to my cervix. So scared

[little_fins]

I had lap last August which confirmed the tears of pain and so tol IBS I had is infact endo. I have been referred to a specialist back in January and am booked in for surgery in a few weeks time (I had to delay surgery due to teacher training). My surgeon has said I will also have a bowel surgeon present as they need to cut out my endo and unstick my bowel from my cervix and cut some endo out of my vagina where is has grown through too. He said it is quite invasive surgery.

I am terrified. I keep having nighmares of dying during surgery. I have had several surgeries in the past to remove my appendix, gallbladder and hernia repairs and never been worried but this time I can't get these negative thoughts out of my head. I'm so scared something is going to go wrong I broke down in tears the other month saying I wanted to cancel the surgery.

I suffer from fatigue caused by the endo and keep getting aching joints and tightness in chest and very cold hands in feet. I'm scared there is something wrong that could cause a problem in surgery. Is it normal to have this fear of dying before surgery? Has anyone had similar surgery. Please help I'm at my wits end. I'm in tears most nights over this.

[Cloudyrain]

Ah honey, I know how you feel I was exactly the same before surgery. I think a lot of it is normal feelings, made loads worse by the emotional affects of pain and exhaustion.

How are you sleeping? The best thing i found was sleeping tablets. I was getting panic attacks in the run up to my surgery and having terrible nightmares, and threatened (very dramatically) to run away. My GP suggested sleeping tablets and i thought "what a load of rubbish, I need super strength Valium!". However, a couple of days later after giving the sleeping tablets a try I felt a million times better, my anxiety massively reduced, and although I was still anxious it was so much more manageable.

You need to try and remember that what is extensive surgery for you is everyday stuff for surgeons and the team involved. They would not do it if they thought there was a risk. Also, I felt so much more relieved by the fact that it was a lot of people in there, I think I counted about 15 last time, it's not just one person looking after you, it's loads of people, and they all do it every day.

On the day tell the team how you feel - I didn't before my first surgery and threatened to bolt from the pre-op room, literrally got up in my backless gown and started for the main doors! Once they realised how I felt they sat me down and went through everything with me to explain who everyone was and what their jobs were. The second op I learnt from experience and before I even checked into hospital I told them I was petrified and my consultant can to see me with the two anaesthesiologists, and the assiting surgeon, and the lead theatre nurse!

Hope that helps a bit, but go and see your GP honey, they can help x x x

[Chrissie66 in reply to Cloudyrain]

Snap! LOL! x

[Chrissie66]

Hi little_fins

I think it's entirely normal to be terrified about surgery. And I think it's even more understandable when you're already so down because you've been fighting endo for so long that you just don't have any reserves of anything left.

Your gynae hasn't helped by telling you it's "invasive" surgery. Of course, it is, and of course he had to tell you that - but he does invasive surgery every day. He could probably do it with his eyes closed. You on the other hand don't spend your days undergoing invasive surgery so of course it sounds scary and alien to you.

The problem with this kind of fear is that once it's taken root there's not a lot you can do to shift it, but try and bear these things in mind. You've had surgeries before that you haven't given a second thought to and and you've come through them perfectly well. And those surgeries, by the sounds of it, were more 'general' surgeries, probably done by general surgeons. You're getting two specialists this time! It's like Gold Standard surgery, the Rolls Royce of surgery. You're probably better off this time around than you were in any of your previous surgeries. They will get together and plan it all and be ready for all eventualities, and between them they will have seen all eventualities before.

And if anything does go wrong - which is highly unlikely, because if you were going to have any reactions to anything involved in surgery, you would have had them by now - you're in absolutely the best place for it to go wrong, right on an operating table!

I completely understand why you're getting wound up about this, and I think the tightness in your chest and the cold hands and feet are probably more to do with nerves and panic than endo. They will check you over thoroughly though before they do anything and if they find any problems, they'll sort them.

One last thing which will either help you or cause you to think I'm raving mad - I had my last big endo surgery about 10 years ago when I would have been 37. I took my teddy bear down to theatre with me. When I woke up, he was lying on the bed beside me with his head, one arm and one leg bandaged, and a hospital tag on. I have NO idea what they did to him while I was asleep, I didn't sign any consent forms!! The thing is, they are human in there. Don't be afraid to tell them that you're scared witless. The nurses I've encountered pre and post op have been the nicest nurses ever, they see panic every day and they know how to deal with it.

I promise you that you're going to get through this and be absolutely fine. Pick a date just after the surgery and imagine that by then, it will all be over. The surgery day is just a day out in the meantime.

Please don't spend any more nights in tears about it. Go and buy your own teddy if need be

Lots of love and hugs

C xxxx

[onewish]

Hi l had what sounds like the exact same surgery as you in April, and lm pleased to say it all went very well. my op lasted nearly 4hrs, as l had a lot of endo in different areas including near my bowel, l was like you very scared, but you must try and think about the bigger picture, it could help solve your pains and give you your life back. l have been to see so many different specialists over the last five years with horrible pains and they all sent me for internal scans which never picked up all the areas which were affected, and lve had 3 laps during this time, but its wasnt until the last specialist sent me for a mri scan for my pelvic area that they found l had endo near my bowel under my bladder and on my right ovary, anyway lm praying that they have finally sorted me out ( wont know for sure until my 3 month prostap injection runs out) but lm staying positive that's all you can do. Good luck lm sure it will all go as planned xx

[charliecat]

Hiya.I've just joined tonight and can't believe I've lived with this condition,alone for nearly 20 years.all the comments I've read,is like going back in time and I wish I'd know all these people years back.I'm also due in for opp on 18th June and this time I'm very nervous.not sleeping at night and very emotional all the time.just cryed at the teddy bear comment,it ment so much to know that these nurses and doctors,who u only usually meet just that day,are actually looking after u as u sleep?I've always thought it was just a job to them.mine endo is also on my bowl and at some point during a brief consult with gyno doc,he mentioned about maybe having to remove part of bowl,and I could wake up with a temp bag?was petrified.however at preopp,antithesis doc says it was just if something went wrong ,while cleaning bowel I'd have that done.felt better on hearing that.still I'm petrified at opp and not incase I don't wake up,cos see that as well I wouldn't know anything about it,but terrified at waking up in huge amount of pain.I did 10yrs back with similar opp.this time though I'm older and wiser and will be asking for all pain relief that they will give me.also from my experience,if ur nice n polite about ur pain n just wait for nurses to come to u,then u get abandoned.I also think u always need someone there with u as much as they will allow them to stay on the ward,cos like I said u can just get left to fend for urself,which isn't easy when u cant move.I'm also nervous about this as my mum has passed away,dad is nearly 70,partner works away and is off week after,and don't really won't to burden inlaws.but in the end we will get through this like so many times b4 and I'm also going to plan something for after opp and keep thinking of that.wish u well and I know exactly what ur going through.xxx

[chelle68]

I am having the same surgery this October (after about 20 years of being told had IBS) and have to say pretty apprehensive about it too, specailly when told that would have to have a bowel surgeon there too! Having read the above comments and all the positive things being said I feel better (a bit) about this now although I am sure will be pretty nervous when going down (that's the bit that scares me the most, just making sure they knock me out enough!!). As said above by Cloudyrain, this is a daily thing for them and are there to make sure we are going to be okay. I think I am more nervous about after the op and how I will feel and how long will take to recover (have a problem sitting still for 5 minutes). Well wish you well hun and a speedy recovery xx

[little_fins]

Thank you everyone for you encouraging comments. You are all right, the docs do this everyday. Charliecat, I too have been told I could have a temp bag after the op.i point blank refused to consent to this until my consultant explained its purpose in more detail. Still not happy. I suppose im scared for several reasons. What if I have to have part of my bowel removed (told theres a small chance)? What if they cant un stick my bowel from cervix? What if the disc of endo they cut out of my vagina doesnt heal so hurts with sex after? What if this doesnt cure my pain? What if, by delaying surgery (my choice) its spread and I cant now have kid's (been told ok so far)? I just hope the 2 stone in weight ive gained since last august goes and I can start exercising again and not be in pain. I hate endo! I have to start a new job 6 days after this surgery.

[Chrissie66 in reply to little_fins]

Eek! What new job are you starting, lovely? I don't want to scare you even more, but 6 days is a really short recovery period, even for less invasive surgery than yours....

[little_fins]

Hi Chrissie66. That's the problem,I start a teaching job. I have just completed training and although the first few weeks are more training, going on my past surgeries I know 6 days is not long enough. But I am using it as my goal to get through all the emotions lol