Paranoid

[durdledoor]

5 days untill first lap and am getting increasingly more paranoid that nothing will be found, googling anything I can think of to try and determine whether it's something else, driving myself mad! Am I the only one that's this crazy?

[avelvetcrowbar]

No! You're not! I've got a cystoscopy booked at the end of this month And I've literally been googling it for hours, searching forums, trying to determine how much it will hurt, what it will be like after , what will they find? What if they find nothing.

I think for people like us- it's extremely hard to not over worry and panic because we're so used to having to face these stressful procedures. I think every time if anything I'm even worse!

I'm positive though that it will go absolutely fine for you. And that you will hopefully recover really well. Hot water bottles after - painkillers and lots of rest and demanding people to make you cups of tea!

Lots of love.

Jordan.

x

[durdledoor in reply to avelvetcrowbar]

Thanks so much for your response, relieved my worries a little.

Sometimes I just wish it was an illness we could see, feels like a guessing game half the time.

Good luck for your appointment, thanks for your support!!!

P's. I'm liking the idea of having a tea slave xx

[avelvetcrowbar in reply to durdledoor]

I've had 2 so far and I remember how scared I was for my first one! I was literally absolutely in a right state! I'm a really anxious and nervous person anyway!

It sounds so silly but incase you have to be kept in ( I was last time as I couldn't wee afterwards)- I copied Disney films to my phone and took my headphones so that I could watch them during the night as I can never sleep in hospital! Also super baggy bottoms and big pants! Nothing too tight! it's quite sore for the first few days But it gets better each day as your body heals! Just make sure to take painkillers as soon as you feel you need them and gets lots of sleep- fluids, and nap if you feel tired! and try to minimise moving too much and over-doing it!

Let me know how you get on and if you're worried about anything or have any questions feel free to send me a message!

Lots of love.

X

[durdledoor in reply to avelvetcrowbar]

Thanks so much for your kind words, it means a lot! I have pants and clothes sorted but the films is a brilliant idea, will get my partner to do that for me just in case.

Thanks so much, xx

[emmary]

I feel like that too! I'm constantly thinking that its probably nothing and that I shouldn't be worrying, or that its going to turn out to be something tiny....

I google it all the time trying to figure out what else it might be, but so far- no answers.....

And this is several months before I even see a specialist, let alone surgery!!!!

Lets just remind ourselves that if every single one of us thought this way and never got diagnosed, we'd have a problem wouldn't we?

I've heard it over the radio, tv, posters on the walls; and it was drilled into us at school that you should always check with your gp straight away if anything is wrong. Take it seriously. Which is ironic since the gps don't seem to take it seriously!!! ;-D

[durdledoor in reply to emmary]

Hahah I know, maybe the gps don't care but it won't kill us! But what that don't understand is, is that emotionally it does kill us! Why have you got such a long wait? Have you had any gynae appointments at all?

It's easy to say Google hasn't got all the answers but at the moment Google seems to be my best friend haha!

[emmary in reply to durdledoor]

I've only just managed to convince my gp that it might be endometriosis. I've had a private scan done, courtesy of my lovely grandad, which showed nothing, and been checked for all sorts of things, and I'm on medication for other things like irritated stomach lining which are not helping. I can't afford to go private (can't ask my grandad to pay for it again) which means a long wait at the end of the waiting list! I've never had a gynae appointment before so I don't know what to expect.

Yes google and this forum are currently my two bestest friends!!!

[durdledoor in reply to emmary]

Bless your grandad, at least you have the right support from your family. What symptoms do you have that makes you think it is endo if you don't mind me asking? Are you able to still work? You just need to hassle your GP and then hospital once you have a referral to bring any appointments forward, it is hard work but being off work seems to help them want to help more x

[emmary in reply to durdledoor]

Thank you, yes my family have been great! Here is my first post on this forum which tells you all the symptoms: healthunlocked.com/endometr...

I do correspondence school, and my student adviser knows what I've been going through. She told me not to stress out about school and just do what I can when I can. She's been really nice about it.

I've finally found that propping myself up with three pillows at night (otherwise I would feel sick) really works and I'm finally getting some sleep!

[durdledoor in reply to emmary]

I have read your linked post a few times, really good to hear that you have a found a way to get some sleep, I also sleep with several pillows to prop my hips up at the sides. Hope you will find some answers soon, have you got a date for a gynea appointment yet? X

[emmary in reply to durdledoor]

No date, but thanks for reminding me that I must phone my doctor today to find out if the referral has been sent in yet.

[emmary in reply to emmary]

My grandad was actually the one who suggested endometriosis when I started feeling ill. I didn't pay it any attention because I didn't know what it was, and at the time, was too sick to care. Since then, I've researched it. When I read the symptoms, I was like "oh my goodness I have that!!!" Thats exactly how I feel!

It makes sense. But again, I won't jump to conclusions until its diagnosed.

[durdledoor in reply to emmary]

I felt exactly the same when I first had symptoms and then told myself that I was being stupid for believing Google and then there u go I'm having my first lap in a few days time so your Grandad could just be right! X

[emmary in reply to durdledoor]

Well I guess we'll see. You're lucky to be getting it over and done with soon. I wish you all the best and will be eagerly waiting to hear the results of your lap.

[victoria044]

Hi durdledoor, your not the only one who feels like this. I did before my first larparoscopy and they found severe endo,in fact my old gp actually said she didn't think they'd find anything wrong with me!! Keeping my fingers crossed for you and pls let me know how you get on hugs xx

[Tboag]

No I'm the same, mine is in 7 days and I'm so nervous that nothing will be found, and then we will have to go back to the o so familiar stares from GPs thinking your making it up, and trying to explain to love ones, with no name or diagnosis,

Not long now and we will both no for sure if it endo,

I can't wait, not really that worried about the op itself are you???

What are your symtoms that lead you to this point,

I'm in constant pain now, aches around pelvic area all day, and then pains in groin hip down legs back up bum, anywhere really from hip to knees,

Good luck xxxx

[durdledoor in reply to Tboag]

Hi T, thanks for replying, glad I'm not the only one. I'm not worried about the actual op at all, although I haven't actually ever had an operation in my life. I'm only worried about the outcome and having to go back to work with no positive outcome will just be an absolute nightmare for me to be honest. My symptoms started with a really bad back ache during a period, I was getting black blood, pelvic pain hip pain but back pain was the worst, no one listened to me and I was being treated for mechanical back pain until I had an unexpected painful episode of intercourse, I went to docs next day and begged for a referral.

How are u managing your pain at the moment? Xx

[Lil_Me]

I do recommend thinking about what you will do/feel if they don't find anything. I wasn't prepared at all when I was told I have no endo and it can be the worst feeling in the world. I felt completely fobbed off and I wish I'd been in a position to articulate my frustrations at being discharged back to GP.

[Tboag in reply to Lil_Me]

Hi lil, so have you got anywhere yet, what did your Gp don next after your lap, and nothing found.??

I'm due mine in 7 days, and am panicking about nothing being found.

[Lil_Me in reply to Tboag]

Hey, I went back to my GP with the full intention of getting my mirena taken out and came away with a load of laxatives!! Her logic was sound in that whilst my bowels aren't regular it may be causing the pain and so she wanted to rule that out before taking the mirena out. They haven't helped lol, but it was worth a try.

I've also had a huge number of blood tests checking thyroid, liver, kidneys, anemia, coeliac disease plus the usual full blood count and others. I guess it's all the simple tests to see if anything gets thrown up.

I've got another appointment on Wednesday where she has promised she will take the mirena out. I may consider leaving it if she finds something on the bloods but I'm not hopeful.

She's also suggested anti depressants and CBT since I feel so down and rotten with everything going on.

[durdledoor in reply to Lil_Me]

Very valid point actually, what would you suggest I do if this does happen? What what was the next step for you when this happened? X

[Lil_Me in reply to durdledoor]

I'm back under the care of the GP, looking at ruling out possible bowel issues using laxatives, and blood tests to cover thyroid, kidneys, liver, coeliac, anaemia and other stuff.

In terms of preparing for the possibility of not finding anything a lot will depend on your symptoms and also what they find/ suggest. In my case I have bleeding most days despite having a mirena and the only thing that controlled the bleeding was 15mg Norethisterone. On top I have low level chronic pain most days which peaks at ovulation and period, and I'm exhausted all the time too.

I was told to ask for a referral to the bowels team which may have explained my pain, but I pointed out that it was unlikely that my bowels would cause vaginal bleeding. I asked him if I was expected to stay on the Norethisterone indefinitely only to be told that if it was working then I should carry on with it! The next suggestion after bowels was to the pain clinic to 'manage' my pain. No interest in finding the cause.

My preferred outcome would have been going back to the gynae unit at the hospital. They're the ones who referred me to surgery as one line of diagnosis and I feel as though they should explore all other avenues before I get shafted off to another team.

In a bittersweet way I hope they find endo that they can remove for you xx

[durdledoor in reply to Lil_Me]

Many thanks for your in depth reply, sorry you have not yet found any answers but hope this will come soon for you. I agree that aain clinic or referring to another team would be very frustrating and a way out for the gynea team. All the best to you and please let me know if you find any more x

[Davina-Canning]

Hi,

I'm feeling exactly the same as you my lap is in a week and half and I'm terrified they'll find nothing. I'm even more terrified cos I've gone private and paid a fortune for it. I'm praying they find out what's wrong with me cos I'm in agony on a daily basis now.

I completely see where you're coming from, you're not alone and you have support if you ever Needa chat.

Lots of love xx

[durdledoor in reply to Davina-Canning]

Thanks very much Davina!! What caused you to go private? Was you getting no where with the NHS? Xx

[Davina-Canning in reply to durdledoor]

I was getting nowhere on nhs and the pain was too much so I went private xx

[lisaevs]

oh bless I've recently been in your situation I had a lap a week last Thursday and they found no endo but I havnt been just discharged from gynae as she lnows I have horrendous painful periods every month she has started me on the combined pill even though I'm to ok but I have low risk factors don't smoke not obese etc and I've tried cerazzette and mirena and they didn't help at all the lap itself wasn't to bad I was a nervous wreck going in but everyone was lovely my wounds have healed we'll you will be a little sore but take the analgesia regularly I have had a bad reaction to the gas they use I have had very rumbly painful belly which didnt seem to be improving so went to gp he thinks and as they didn't find any endo that I have ibs as people with ibs have lots of problems with the carbon dioxide he has given me some antispasmodic medication which is helping a lot I was like you worried they won't find anything and what would I do if they didn't but even if they don't there are still options op obviously I don't know your circumstances I wish you all the very best and a speedy recovery as we'll

[durdledoor in reply to lisaevs]

Thanks so much, hope the pill is helping you x

[lisaevs in reply to durdledoor]

It only been a week so not sure yet got to take it for three months back to back to stop periods we will wait and see stay calm and relaxed hope all goes we'll x

[tasnim]

Hi girls,don't think any thing unnecessary or for no reason it will increase ur blood pressure.then they will cancel ur operation u will be back to square 1 .Think positive and go.with me it happened because of all silly thoughts my BP rised ,first dignostic lap was cancel.then it took eight months to get the next lap date.

I was is sever pain for 1year nhs scanned me twice but coun't find any thing.Did private scan found 2cyst on left ovary,with this private report dr decided to do MRI,report showed my Fallopian tube was blocked as well.Finally was operated on 9 march my left ovary and Fallopian tube has been removed.so please don't panic it's better to start the treatment immediately.

[durdledoor in reply to tasnim]

Oh blimey you are absolutely right, I have heard amazing things about my consultant and do have faith in her so I will try to stay as calm as possible, thank you for your advise. I'm so shocked to see the difference in your scans when you were paying, that is really sad to hear, hope you are recovering well? X

[Music1]

I wouldn't worry driving yourself mad with looking for alternatives. They should find something - an answer, a suggestion ... something. I went in looking for an 'answer' and they came back with Endo stage 4. Until this point I'd seen my GP and visited hospital in much pain on many occassions to be told it was probably IBS, something I'd eaten, or I wasn't good with pain. Find someone you can have faith in and trust. You know your body better than anyone else. I hope you get some answers. Hoping all goes well for you durdledoor. x

[durdledoor in reply to Music1]

Thanks so much, I luckily have a so called very good and knowledgable consultant so only time will tell xx

[kmykalw]

I just had my lap about a week ago, and I was feeling exactly the same way before my surgery. Up to that point, I had been misdiagnosed many times, told that my pain was normal, and that there was nothing wrong with me. I think most woman with this disease go through similar situations. After being told time and time again that there's nothing wrong with me, I had a really hard time convincing myself that there was-- even after my surgery date had been set. Like you, I spent hours on google trying to figure out what else this could be. You're not alone!

During my lap, they were able to take out some of the endometriosis and remove a massive cyst on my ovary, and now I realize that I had no reason to doubt the diagnosis.

I know its easier said than done, but try not to focus on the doubt or paranoia. Either way, after surgery, you will know more than you did going in! And believe me, it makes a would of difference just knowing what all of your pain and discomfort is coming from.

I wish you the best with your surgery!