Lap done, no endo, no answers, just IBS :(

[x_b_x]

Ok so yesterday I had my Lap finally. I was really nervous but excited that I was finally going to get some answers to only get none.

I got to the hospital for 9am as they stated they got me in my gown, stockings and everything, then only to be taken to a room where things were dumped old blood pressure monitors, bedding all sorts, and at the other side of the room was a few chairs, as they didnt have a bed for me at that time I had to sit there.

10am came, midday came, 1 pm came and nothing, surgeon came at 1.30pm came to speak to me and sign papers only to be told he wont be doing it and some other person would be who I had never even met and spoke to, she just came in and smiled and went out again.

So I wont back to this waiting room bit sat back in my chair, finally 4pm came, after 7 hours in the same chair I finally went down. I came back round at 5.30pm and took back to the ward at 6pm.

The lady surgeon who I had came about 30 mins later, just came in said all looked fine, I would suggest its IBS, I told her the gastro cleared me of all IBS and any food allergies or anything and she just said just go back to your GP say its your bowel and also go for sexual councelling, we wont need to see you now so you wont need to come back and then left.

Soon as she left I just broke down in tears, couldnt stop crying. I have been getting all these symptoms I dont have a life anymore and in so much pain just to be told its nothing and they wont help me no more, so now I am back in the same position and I really do not know what to do, I keep a diary every day and each day I am in so much pain, I cant even have sex anymore, every time I go to the toilet i am in tears, I dont have proper periods, always getting urine infections, I cant even walk far or exercise anymore I walk 10 minutes and im in agony. I have reoccuring chest pains, every morning I have coughing fits and coughing up flem constantly, I have anxiety and contant headaches and she is standing there telling me nothing is wrong. I didnt even get a chance to ask any questions by the time she said I wont need to be seen again she was gone.

The nurses were really nice assured me that it could be just something else and its not all in my head, but to honest I feel like now it is, who is going to want to help me now, I have no form of pain treatment or anything offered to me I am just in the same boat as I was over a year ago.

Sorry for the rant ladies I am just once again sat here in tears and I do not what to do, where do I go from here, feels like I have gone through all this pain for nothing I know in a way nothing was found but really does not help as I dont have those answers that I really needed.

Anyway I got discharged at 10pm they didnt want me to go as my heart rate was high and I was very pale but I begged them to discharge me I couldnt stay there a second longer and wanted to get home to my own bed.

I really do not know where to go now

[worth71]

So sorry you're feeling like this. Just because they said they didn't find any endo doesn't mean it's not there, we all have read of mis diagnosis even on here. We hear of surgeons who just aren't experienced enough to know what they're looking for, or just miss it. You will need to get back to your gp as you've been cleared of ibs, and they've now cleared you of endo, so the investigation needs another route that's all. You have pain, and it's not normal to live with pain on a regular basis, and it's not in your head but I know you will feel like this, I've felt it many a time trust me.

The main thing at the moment is to get yourself well again, so get plenty of rest so you get over the lap procedure. Take care and if you want a chat just message me xx

[x_b_x in reply to worth71]

thank you for replying to my blog.

Its just hard right now, I am worried about going back to the doctor and saying they have cleared me and they dont want to see me again, will be worried she wont want to help no more and think its just me and I am making it all up if that makes sense.

Yeah I need to recover alot I got back home at 11pm last night could not sleep though soon as I lay down i was in so much pain is better to stand to be honest or to sit up when I lie completely down it hurts alot more and can here all the water in my belly going round, my belly button was bleeding alot to but she just put another plaster to cover the bloody plaster before I left.

I feel so sick today just have such a chesty cough and feel so run down, just feel like I have gone through all of this for nothing, feel like I have wasted everyones time and now no one will want to help x

[worth71 in reply to x_b_x]

Have you got anybody who is there with you? You need to find a comfortable position to either sit or lay down, you need to rest - I was in a lot of pain after my lap, I spent the first three days in bed apart from going for a wee.

There's nothing I can say to stop you feeling that you've wasted people's time, but you haven't, as I said you are being investigated for pain, the investigation won't stop here, maybe make an appointment to see your gp early next week, if somebody can take you there. Before my lap I saw my gp and expressed my concerns about them finding nothing, she said its a process of illumination, and if they find nothing then we will start on another path, and that's what your gp will have to do.

Now please try and get some rest, it's crucial you do for your recovery, the more rest earlier the better xx

[lillyflower]

Hi I'm so sorry to hear you haven't found an answer yet but this is not the end! As worth says you must rest I laid in bed with several pillows so I was slightly sitting upwards and slept likethat as more comfy. I was very emotional and the anesthetic can make you feel emotional so you will find as that wears off over the next few days your head will feel gradually clearer. Don't panic just rest and then go to doctors and tell them everything. I went to docs yesterday and was surprised at how helpful she was even though she couldn't give me all the answers she did help talking and have new pills to try for pain and to try and lift my mood too. So there is hope they will keep looking and just because they didn't see it as worth said it could still be there hiding. All your symptoms are real not in your head and they will have to investigate further once you feel better. Rest, sleep and get better soon xx

[doubleL]

Hi,

really sorry to hear it didnt go so well, I had my first lap done a few years ago where they found nothing and my most recent one says its stage 3 endo? not sure what it means but dont give up hope they said mine was IBS and no chance of endo but now its been diagnosed, its a massive weight off my mind.

Dont feel like you have wasted everyone time thats what they are there for to help you, you just need to keep going back I know its hard and you get so dis heartened with it all but you will eventually get the answers it just takes time. Really hope you feel better soon just try and relax for a few days and get your head straight xxxx

[x_b_x in reply to doubleL]

Hey

Thank you for replying, I am sorry you went through the same thing to. I just feel like thats it I am not even having a post op appointment either they just closed me of there and then so I feel like now I cant go back and discuss with the first gyno I saw about where I can go from here and whats going to happen and if they can do other tests or anything I feel as though they have just given up on me.

The fact she told me that I probably needed to go for sex therapy counselling as well upset me alot, I love my partner so much and I really want to have sex to him I am attracted to him so much in that way i really want sex with him but the only thing stopping me is the sheer amount of pain it leaves me after, I need pain relief and help not counselling.

What did you do the first time when they told you there was nothing, did you have a post op appointment to discuss things properly or did they also sign you off right there and then? x

[doubleL in reply to x_b_x]

No i didnt have a post op appointment they told me it was IBS and i was constipated, which i knew anyway and have been for years but due to the fact that I have know found out i have endo on my bowel, they also told me to get pregnant as this solves all the problems in the world!!!

I really wouldnt give up - i went to all of the doctors in my surgery i bet they hate me there but i honestly was not prepared to give up i knew there was something and it wasnt just in my head its taken nearly 4 years but i finally got there in the end.I know its hard but dont give up you just need to find somebody who knows what they are talking about i saw a lovely doctor in a & e ( been there quite a few times cos of the pain ) and she was horrified at the amount of time it had gone on for and put me forward for a colonoscopy and thats when they found the endo guess i was just lucky really.

I know its not much help but things will get better xx

[x_b_x in reply to doubleL]

Hey

Thank you again for replying all the advice is really helpful.

I have most of my problems with the bowel, I get a lot of other symptoms but my bowel to is what plays me up the most. Maybe I need a colonoscopy maybe that will be better then the laparoscopy.

I have already booked an appointment to see the GP again x

[samovar in reply to x_b_x]

So sorry to hear about all this maybe private CT scan of u abdominal will point to other problems or abdominal ultrasound of blouder etc .

Wish u better God Bless .

[squidgy]

Oh hun I am so sorry to hear this! Must be so frustrating for you. Like everyone has said it is not in your head, you know your own body and nobody in their right mind would want to feel like this.

It could be adenomyosis which wouldn't show up and has symptoms quite similar to endo as I understand. Speak to your GP about this. Also find out if the surgeon who did the Lap is a specialist in looking for endo and how many Laps they have done. It may have been it was there but they are not as experienced for seeing it. Not that I am wishing endo on you at all.

I hope your recovery is quick from the Lap. x sending you big get well hugs x

[Impatient]

It doesn't mean you don't have endo, but may be you genuinely don't.

Have you considered adenomyosis a similar condition to endo but it only grows inside the muscle tissue of the uterus and would not be seen by a lap op.

It does the same as endo and bleeds insde the muscle and it hurts too. Some ladies do have both, some just have endo or adeno but not both.

Adeno is also thought to be able to grow in the muscle walls of the bowel and cause IBS like symptoms in the bowel. An MRI scan when you are on a period should show up if you have adeno active in the muscle walls of the uterus ot the bowel.

adenomyosisadviceassociatio...

I would suggest that is also checked out next, and if that MRI shows nothing then it is more likely but not excluively likely to be a nerve problem causing pain or an intollerance or food allergy aggravating the nerve endings

Have you been checked out for coeliac?

IBS doesn't mean anything specific, just your bowel is irritated, but something is irritating it so you need to check foods you eat, by a process of elimination, what is upsetting the system, though for coeliac that can be checked through an endoscope etc.

Don't give up, it is not in your head unless you have an astonishingly vivid imagination.

And I don't believe any of us would actually imagine the levels pain we get so much that they then become real. It doesn't make sense to me than apparantly sane people would do that, and not show any other symptoms of mental ill health.

[x_b_x in reply to Impatient]

I have been checked for Coeliac and the gastro also cleared me of IBS and any food allergies I had all tests done for those, and cut out dairy, gluten, wheat for a year and still had the same symptoms so he cleared me saying this is nothing gastro related.

I think my next step would ask to see a bowel specialist like doubleL they told her there was no endo on the lap but then in a colonoscopy they found it, so maybe that may be my next step to I have all tests done and seen so many specialists over the last 2 years that I am getting tired of it now, getting tired of people now not believing me thinking I am making excuses, I cant take it anymore to be honest I just need to get to the bottom of it, every day I wake up and I am so ill and have so many symptoms, but now who is going to want to help me x

[lillyflower]

Your doctor is there to help you!! As you have appointment booked then you can tell them its not ibs as already checked and sugest endonomiosis as the symptoms are very similar from what I've read. The gyni has discharged you but that just means the doctor will have to check other options until they find the source of your pain. Don't loose hope there are several on here that weren't diagnosed straight away I know it must be so frustrating and feel like your back to square one but your not! You've had lots of tests and they will have to keep looking they won't just leave you in pain. In the meantime ask about trying stronger painkillers to help and if your feeling down tell the doctor too. I have just got some new pills to hopefully help with pain and lift my mood. I didn't think doctor would do much but she listened and explained why these tablets would be good so rest and let your body heal and then have a very honest discussion with your doctor. Until then sleep watch some rubbish tv or watch a film to distract you and make you rest. We are all here for you so your not alone xx

[x_b_x in reply to lillyflower]

Hey

Thanks for your reply, I am glad I can just come on here and have a moan or come here for advice. To be honest I am not taking this very well, I know I should be relaxing and everything but all I have been doing is worrying to be honest, I have just been thinking is there something really wrong or are they all right is it really all in my head, do I go back and waste more of there time or just try and put up with the pain and get through it on my own.

I am recovering slowly from the Lap I am waddling around ok I changed my dressing last night and even managed a little walk to the shop fine, just trying to get back to normal just so upset that I have got more and more waiting to do feel like I am back to where I was right at the start, took one step forward and now taken five back. My throat is ever so sore and coughing up flem a lot which is getting annoying.

Just annoys me that I thought I was getting the specialist who I had been speaking to all along and then on the day I get some other woman who I had never even spoke to just seen her passing and he was like she will be doing your Lap, then afterwards she just spent a quick minute of two with me I had barely came round she just said nothing there its IBS try going to your doctor and getting sex therapy, then left I didnt even ask any questions, think she was just in a rush to get home to be honest, x

[lillyflower]

I was very emotional with so many different thought running round my head but as the anisthetic gradually wore off by about day 5 my head felt a little clearer, so that's not helping you at the moment. You must feel very fed up but once your back on your feet you must go back to doctors so they can help you. You can't just put up with the pain they may try new pain drugs to help while they look at other possibilities. I had a different doctor who did my lap so I was a bit suprised by that too. And as for sex therapy you know its the pain not your mind so she doesn't know what she's talking about! As you hadn't spoke to her before she won't know what you have been going through so try to ignore that. I know its hard not to worry but you need to get yourself recovering so please try and rest so you get your strength back and get to doctors. I definitely think I would be asking about endenomeosis have you checked your symptoms with that? Please please don't give up hope it may be the start of another long road which right now seems a nightmare but we will all support you along the way xx and remember they don't always see endo first time so its still possible its there just hiding.

As for your cough and sore throat I had same and had the cheap glycerine and honey cough syrup which helped as I couldn't have any with more drugs in! Strepsils helped my throat too or hot chocolate !

Try and watch a film or read a book to give your mind a break and take your mind off everything for a while and I'm going to say it again rest, sleep and rest!! Xx

[synnova96]

Hi so sorry you've been through this. Were you seen at a specialist endometriosis centre? If not ask to be referred. You could ask for a second opinion- show your GP this bsge.org.uk/ec-history-endo.... I was recently referred to uclh after an ineffectual lap last year. I still have bowel problems and bleeding from my bum (tmi!!!) and the consultant said women with endo symptoms should really only be seen in specialist centres as often gynae surgeons just don't see enough endo cases and don't know where to look. Focus on recovering from this lap then arm yourself with information and go back to GP. Don't give up. x

[x_b_x in reply to synnova96]

Hey

Thank you for your reply, all this advice and support is really helping me and giving me a little bit of hope to go back to the doctors and show them how much these symptoms are affecting my life.

I just dont see how this can be IBS to be honest, I didnt go to a specialist just the local hospital who did the Lap, the lady who did the Lap I was told is a specialist in doing Laps but not in endometriosis I dont think I never even met her till afterwards where I didnt even get the chance to ask her anything, now they dont want to see me again x

[jen1982]

Hi,

I can completely relate to this, as at my first lap no endo was found either. I eventually got referred to an endo specialist who was absolutely sure he'd find endo and guess what, there it was. I had another lap in October where none was found again. I just had a lap on Thursday and endo was found again! It is such an odd disease.

I just wondered if you're taking any hormones? I was on the pill both times when endo was not seen. This last op I decided to come off the pill, and it was then seen everywhere. It could of course be something else, but I wouldn't give up as there are plenty of people like me who are living proof you can have it without it being seen. It is certainly not in your head, whatever it turns out to be you are not imagining it. If you are in pain then you need pain relief and I really hope your GP will see this at least and start the ball rolling.

I can highly recommend seeing an endo specialist if you are able. I was totally convinced they wouldn't find endo in me, and was shocked by what he found and how much he knew about it all.

Just wanted to say don't give up the fight, I know it leaves you in absolute despair when they find nothing, but it really doesn't mean there is nothing there.

Hugs x

PS I was also told mine is IBS and my gastro ruled it out too, as did my endo specialist

[stevieflp]

Hi, yes I too wondered about the hormones as when you have been taking hormones, the endo can shrink and might not be detected, particularly by someone not a specialist endo consultant (or one who is in training, you did not see the main consultant!). An endo specialist would recommend waiting several months after stopping any hormones so that the true extent of endo can be seen.

Endo can be unseen under the surface. The gold standard in endo surgery is 'total radical excision'. This is where the whole lining of the peritoneum is removed (all keyhole) thus separating organs that have become stuck together and removing seen and unseen endo. Many consultants do excision surgery but it does tend to be removing patches of seen endo rather than the whole lining which takes everything seen and unseen in one go.

I also wonder about recto/vaginal endo causing such pain with intercourse (I believe this is the Pouch of Douglas) and not sure if this would be seen in a peritoneal lap.

I wish you all the best and it really is a case of getting to see the right consultant. I definitely would agree with the advice to ask to see an endo specialist rather than a general gynae. There is such a degree of difference in the levels of knowledge of endo between the consultants (particularly general gynaes who do not always specialise in endo but GPs refer you to them anyway. I have even seen ladies told that although they do have endo, there is nothing that can be done as dangerous to remove and they have been sent to see a pain management specialist - when they should have been referred onwards to a more experience endo surgeon.

Don't give up and be disheartened by this. I had not the best of advice from my first consultant and got a second opinion from a REAL endo consultant.

It might well be that your GP will have some suggestions of what else it could be and you will go down a different route of investigation. Whatever, I so hope you will get the help you need.

All very best wishes x x

[missteal]

Hey hun, so sorry to hear about the way you've been treated. Drs in hospitals really need to work on their beside manner, do they honestly think you'd pt yourself through an operation just because you felt like it?

I have had 2 laps, in the first they said I had mild endo and in the second they said I had no "active" endo but adhesions and a sticky ovary. I then demanded a follow up (over a year later) to be told that because the norethisterone I was on was helping my pain then it must be gynea related so it could be adenomyosis!! They did not however write this in my letter to the gp so now he think i made up what they said and have been sent to a chronic pain team. I must say though that they are the most helpful people I've met in the nhs, they look at you as a whole not just bits of body stuck together. They have taken my pain seriously and said in no uncertain terms that it is not in my head and i am not deluded!! Maybe ask to be seen by a pain management team?

big hugs to you hun xxx