Had a colonoscopy on friday worst experience in my life
Posted , 4 users are following.
I had this operation done on friday it was the most dreadful experience ever still yet I have severe back and groin pain it just wont go away anyway had a lot of polyps burnt off and sent off for pathology and histology. I still think my pain is due to my fibroids and ovarian cysts so why the hell am i being sent from a gynae to a gastroenterologist ive had enough of living in constant pain I cannot lay down therefore I never get any sleep......when i went to the doctor a month ago about this pain ive had since january he said i quote "what do you want me to do about it" in a very angry tone....i left very upset but did complain....now yet again my doctors are on the front page of our local newspaper with a girl saying they ruined her life they have a very bad history and no other doctors are taking on new patients the girl in the newspaper has been chucked off her doctors list for complaining! The doctor I saw was very moody seemed angry with me for having a private scan and when i asked if I could have a hysterectomy (as if anyone would want such an awful operation by choice) he laughed at me! What to do where to go I just want to know what is causing this severe lower back pain travelling around my waist into my groin area i have read on google that it can be caused by cysts or fibroids the cysts pressing on nerves that would explain why its most severe when i lay down for a while i wake up at least every hour all night long yet nobody can find out whats wrong with me im starting to give up on life as living with this pain is unbearable........helpppppp x
0 likes, 61 replies
caroline25937 melissa39479
Posted
I totally understand Melissa. Frustrating when you are treated like an idiot and not listened to. I get it. It's awful !
I too have been ill and in pain since January. Had 7 hospital admissions since March. Had CT scans, ultrasounds, MRI scan and blood tests... All they found were cysts cropping up mainly on the right side and I also have small multiple fibroids the largest being 12mm ... So small. They consultants do not believe the fibroids or the cysts have been responsible for me becoming ill and in severe pain. Currently according to a MRI scan I have no cysts as I have been put on microcynon pill to try and control my cycle.
To cut a long story short I had a laparoscopy done in May by a gyne surgeon who said my pelvis looked fine as did my ovaries and all he could find was adhesions scar tissue all over my appendix and right side. This has hinted at a problem appendix... So therefore he has referred me to a general surgeon with regards to having the appendix taken out. They think possibly I had an appendicitis and now the appendix could be dodgy. I'm having it removed Friday and scared to death as its yet another laparoscopy !!
When it all started I had severe right sided pain low down also in my side going round into my back. Pain also bladder n frequency and pain almost groin/vagina area. Felt like it could have been cysts causing it but they were not sure. Now it's possible that the appendix has caused it all !! They'll know more once it out and they do tests.
As I say fibroids are small so they think
Not causing me the overall pain.
Not sure if this helps at all but maybe just maybe get your appendix checked out...
Caroline X
melissa39479 caroline25937
Posted
Hiya Caroline x
I have been up A&E too many times to count even morphine two viles of it didnt work and a paracetamol drip didnt work on the pain i have no idea whats going on they took my blood as you i suspected appendicitis however they said my blood showed that i didnt have that however when i saw the consultant in a room with my witness a friend the consultant said my bloods came back fine....but he hadnt even read them yet!!! I said to him well i can see on the computer im red flagged and you havent read my results yet! He then looked at them he didnt seem to know much I had to point out my white blood cell count was high as it always has been for the last two years......he then sent me down to a very rude junior gynae who said to me what are you doing here you should have gone to your doctors when i went to my doctors he said what are you doing here you should be in hospital i cant win i cant do right for doing wrong......i truly give up this pain in my back is like as if its in my kidneys however they reckon (dont trust what they reckon) nothing wrong with my kidneys but their levels of blood tests and my levels or rather googles levels dont match up they allow far higher scores on the bloods than recommended therefore i no longer trust doctors especially GPs they are absolutely stupid one doctor called me ODD for having a high white blood cell count.....i have swelling just below where my appendix is but they said I would be dead by now if it were my appendix.......i dont know i really give up.....im not surprised you are frightened and its also a myth you dont need your appendix its actually vital you keep it unless it really is so inflamed or about to burst as you can actually die from this....they reckon if you have appendicitis you would be on the floor in pain well i have been on the floor in pain i have had gas and air via paramedic ive sat up A&E many times and still nothing same as you since about January but i also went to the doctor who called me ODD last year saying i feel my spine is going to snap in half when i lay down she said i can assure you your spine cannot snap in half.....gosh where to go from here seems like im gona be left this way however after my colonoscopy on friday im sitting here waiting for 3 weeks to find out if i have cancer 3 bloody weeks!!!.....I feel for you hun I would defo make sure they got it right because they seem to love taking out appendix for no sure reason I hope you are ok and try not to worry i know a lot of people who have had this done no problem or hardly any pain at all after are you having keyhole surgery? x p.s. thanks for your reply much appreciated
caroline25937 melissa39479
Posted
Hi Melissa
A problem appendix be it appendicitis or a chronic grumbling appendix, it doesn't have to show up on scans nor in blood tests for you to have a problem, honestly ...my surgeon has already told me that.
The only time in all my times in hospital since March... The only time my bloods came up with something was the once, where my WBC count was raised and I also had high temperatures in the hospital. All the other times nothing else has appeared in my blood tests and nothing has shown on the scans.
My appendix has quite obviously been a problem because it was covered in scar tissue... So that means it's been trying to heal itself. I keep getting the pains, had them again yesterday ...and it almost feels like it's flaring up.
You do not have to be dead on the floor to be having a problem with your appendix !!
They can tell by removing it via laparoscopy.. Yes I'm having keyhole ....so they know once it's out by looking at it and by then doing histology tests on it. It shows if it's inflammed or an issue on the tests they do on it.
I fought and fought with the doctors as in March in hospital I was in a lot of pain and they assumed I had a kidney infection... Wrong !!!
Then I was under the gyne dept who then said it could be cysts etc ,,, then was told under no circumstances would cysts cause that pain.
Now I've had the laparoscopy at least I know the findings and they were adhesions right side abdom wall n smothering my appendix ... This is why they feel it could be my appendix causing my pain etc. It all ties in really.. Right sided pain.. Sometimes stabbing ... Bloating... Pressure in lower pelvis.... Bladder pain if it flares.
The surgeon told me if your appendix isn't happy then it can cause symptoms and pain in nearby areas .. Such as bowel and bladder, rectum and back.
I've learnt a lot over the last few months and it has been lonely and depressing and highly stressful. Not actually knowing what's wrong with you.
So appendix only has been flagged because of the lap I had done in May where he could actually see inside.
All scans etc haven't shown a problem !!
X
melissa39479 caroline25937
Posted
omg Caroline x huni you have really made me think now...i didnt realise this didnt show up and they basically lied to me saying i would be dead by now! Stupid comment to me they are idiots I even told the gastro why is my groin swollen i found it in the shower when washing myself its still there now......im so bloated i look like im about 8 months pregnant......you have left me wondering now there is no definite test for appendicitis or inflammed appendix? Gosh this is a shock to me if I find out all this time i have been through all this to only find out its my appendix which will take them another 4 years to work out coz they all seem a bit thick i will go crazy about it .......I cant believe what you just told me perhaps this is what is causing my pain yes right sided stabbing pain constantly bladder problems i.e. bladder weakness having to wee every five minutes driving me insane no infection in bladder according to them but who knows they cant even read a blood test i also have a high white blood cell count my doctor once rung me to tell me this and he seemed worried about it.....the other doctor said im ODD for having a high white blood cell count....ODD? lol....are they serious........the stupid paramedic told me if i had this like i said earlier i would be on the floor almost dead but as I have just read from your comment that is not necessarily true what the hell is wrong with these doctors.....i wont go up A&E any more they just give me morphine a blood test then send me home on a bus to walk another mile down a hill with great difficulty....I hope you get better soon and hope your op goes well im glad to hear its keyhole so your recovery will be quicker you poor lady i know exactly what you are going thru and you have alerted this to me so I dont know what to do about this next.......im thinking now it is my appendix coz of the constant pain and where you describe your pain is like mine.......they never even bothered to scan my appendix they seemed to not know what they were doing im getting past from pillar to post here after that awful colonoscopy on friday im so angry if this turns out to be my appendix i will freak out if thats my diagnosis finally I cant lay down I cant sleep and my doctor said to me when i asked him for sleeping tablets (i never take prescription drugs in fact i usually refuse them) he said sleeping tablets dont help you sleep......what? Say that again doctor moody lol.....he was such a terrible awful angry doctor I made a complaint on their website horrible man how dare he say to me after i told him of my pain and how its so unbearable because its constant i never get any relief from it "what do you want me to do about it"........in shock still they dont care and now im watching the news and apparently doctors GPs are being told not to refer anyone for basically bugger all any more so no wonder im sitting here in agony yet again......i dread laying down tonight after all these months same old same old I can only sleep on my sofa for a while my bed is too soft....so appendix does cause lower right back pain they said it wouldnt they are stupid ive had enough of the lot of them...good luck with your op dont be worried its a very common op and you can guarantee whoever is doing this has done it thousands of times before they could probably do it with their eyes shut good luck huni and thanks for your feedback you got me thinking now x
melissa39479
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caroline25937 melissa39479
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Hi Melissa
You must have it looked into and really you should have laparoscopy.
I too had/have sweating n fevers in the night.. They tried treating me for menopsuse and I'm not even menopausal... Tests r negative !
The bladder issues started when it all kicked off in January. No infection. Just wanting to pee more and pressure on the bladder. I've had a cystoscopy to check the bladder... All normal !!
I have learnt lots about the appendix and in a chronic form how it behaves.
You also get the bloating. I get this also plus bowel pain and gas pain.
When it all started back in January I looked pregnant. My tummy was almost hard and my appetite was shot. I felt nauseous and fevered. Bladder issues there most of the time.
This really does sound very similar to my case I must say
X
melissa39479 caroline25937
Posted
Sorry for late reply somehow i signed myself out and forgot my password as havent been on here for so long......im looking into it and im starting to think this is it some stories on google did frighten me coz people just thought the pain would go and ignored it then ended up nearly dead........how can they not know about this pain and why ive got it and just dismiss appendix? They must see this all the time in fact im sitting here sweating now i feel so hot its like im being microwaved my stomach just became massive and if you feel it its a solid mass not fat at all....where did my six pack go? lol........I feel nauseas some days I suggested appendix to A&E and like I said they all said I would be dead but like you said in your earlier post it doesnt mean that at all.....if ive been living in all this pain all this time and they see this every single day but cant work it out then im very angry about it tbh thank you and i wish you luck for friday x Let me know how you get on x
sanya11314 melissa39479
Posted
Hi darlings, hi Caroline!
May I just say, weigh in from my experience only, (Caroline knows what is coming ;-) ):
that I rather have an appendix out than in,
if there is the smallest risk it could cause the pain (and be not disappointed, if it wasn't).
In contrary to ovaries, the appendix with its maybe lympocyte/immunesystem-help is everywhere else enough throughout the guts, the cecum - where the appendix attaches- is full with mucosal lymphatic tissue -, that the appendix might have sitting in it. There is back-up for an appendix. (I am pretty sure the appendix will disappear within 1000yrs in humans anyway. Appendix is like wings of the ostrich and the eyes of blind fish living in the darkness. Purely evolutionary rest in my eyes. Hugely discussed in other eyes. But since people live to very old age without appendix...I would not hang my heart on it.)
My daughter has her appendix out, the pain continues and yet I am GRATEFUL it is out (without a stump left, please have no stump left) to be sure, it cannot be the appendix, that might rupture at a point when she is actually rolled up in a ball on the floor.....
The appendix is often macroscopically (that's what the surgeon will tell you how it looked like) ok but microscopically not!
The appendix is often microscopically (histologically) normal and still 11% of those people feel BETTER after removal when they had appendicitis like pain.
Appendectomy is usually state of the art, when either white blood cell count is clearly raised and/or CRP plus the fitting symptoms.
It might not be the answer, but having those pains, it is one thing less to consider, one thing less to worry about, when it is taken out.
Yes, during an acute appendicitis with rupture one can die from it, of course, you would be dead,
but no one dies during a chronic grumbling appendicitis. The literature is full of it.
For me under the line: if pain could relate to appendix problems (and where the pain sits, depends in which direction your appendix points! It's not always classical right illiac fossa pain with this. Rebound tenderness, Rovsing's sign....there should be many clinical assessments done).
Also during diagnostic lap and appendectomy other issues could be seen.
(also benefit: never ever will you get an acute appendicitis during travel. When signing up for 3rd world country work, it was actually highly recommended, to have an appendectomy done prior starting work and flying off. Yes, really, just to exclude that life threatening risk of developing an appendicitis with rupture in a country, where you could die of it due to no surgery close by)
Wishing you all the best!
It's so, so frustrating
and Melissa, is there a different hospital you could go to?
Do you have print outs of your blood and imaging results?
You are entitled to have them. Hospitals usually send them to your GP and you can pick them up there.
caroline25937 melissa39479
Posted
It's ok Melissa. Hi again.
You need to get this checked out ASAP. Let me know how you go.
I'm nervous as hell about tomorrow but putting a brave face on. Just woken up and the nagging pain is there on the right and I'm boiling hot... Like you, it all just ends up driving u mad !!
Oh .. And listen to Sanya too. She has been a great friend and support to me on here over the last few months and she knows all about my story. A wonderful lady ..very helpful
Take care lovely and let me know. Keep your fingers crossed for me X
caroline25937 sanya11314
Posted
Hi Sanya...
I'll update you from hospital bed ...Lol 😆
Of course I'm dreading this but getting on with it.
Thank you for your continued support and help...
X
sanya11314 caroline25937
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sanya11314 caroline25937
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I hope so for you, that this 2nd lap will improve symptoms for you.
Wish you a good sleep and hassle free recovery!!!
sanya11314
Posted
I love this forum, too!
I rather should go and cook dinner though now. Byebye, oh sorry, should not talk of food probably. ;-)
All the best ladies!
We marked the one year anniversary just yesterday when emesis, abdominal pain, headaches started intermittent.....
next year at this day I would love it to be just a bad memory.
caroline25937 sanya11314
Posted
I guess I shall only know by having it removed. It probably is too risky leaving it in, especially that this week the pains have been flaring again.
I just need to toughen up abit, just scared that's all..
Thanks again Sanya and I'll be in touch and I truly hope you start to get somewhere with your daughter, It seems to be such a struggle... we keep saying the word 'frustrating'... its just awful, nothing worse than fighting to get help and answers.
Health is just so important, its number one !!
Catch you very soon.. I hope
keep your fingers crossed for me.
XXX
sanya11314 caroline25937
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melissa39479 sanya11314
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melissa39479 caroline25937
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Try not to worry yourself too much Its better out than in lets hope that once its gone you wont be boiling hot (like being microwaved) and in pain any more.....I hope you get the results you need after all you have been through I really understand you are scared please keep us updated as to how you are feeling after your op and let us know you are ok....much love and good luck for tomorrow x
melissa39479
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caroline25937 melissa39479
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Thank you Melissa. I am now getting very scared...
packed a bag and the usual... yes, not sure I'll get much sleep tonight but then to be honest I havent really slept since January when it all started..! I can't get comfy no matter what position I'm in...
I shall update you from the hospital bed
and Sanya...plus any news I get from the doctors and my surgeon.
PETRIFIED... but have to be brave and do it..!!!
So strange that you have the same things going on as me.
I believe you will need to have a laparoscopy soonish... and first and foremost a CT scan or MRI, mind you saying that my appendix hasn't shown up on any scan at all... as i've already said, the LAP was the thing that has given a red flag about my appendix...
perhaps you need to go and speak to doctor and see about a scan and about a LAP...?!!!!!
Take care for now Melissa & Sanya. I shall be in touch...
Hugs.
XX
caroline25937 melissa39479
Posted
All the other times no recording at all of elevated WBC...did have elevated temperatures though.
Another thing... before i became ill all of a sudden in January... months prior to that and leading up to Christmas.. I had an awful ear/sinus problem and my doctor said it was some form of sinusitis.
I had another bout of this a few weeks ago, terrible streaming cold that lasted 48 hrs and then sinus and ear symptoms back on and off since..!!!!
One doctor has told me that a chronic/problematic appendix can cause rundown feelings and sinus/cold issues are one of those things. She even told me about a friend of hers that had a similar thing to myself and her appendix was removed and hey presto.. she got better !
She suffered with ongoing sinus issues and rundown feeling.
melissa39479 caroline25937
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melissa39479
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Oh and i forgot to tell you I now have a phobia of going to my GP due to their lack of care and treating me like im annoying them for being ill...my answer to this is they get £100,000 per year so they should at least great you with a smile lol.......however the last doctor i saw was soooo moody I couldnt believe it my mum was with me and said she never would have believed it if i went alone and she didnt see the way he treated me with her own eyes as i said he said to me "what do you want me to do about it" well he is the doctor im the patient he should tell me not other way around...i wanted to smack him in the face! xxx
melissa39479 caroline25937
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caroline25937 melissa39479
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Haha. I'm
Not sure I could make a great doctor but I know someone that could ... Sanya!! Lol.
I have to arrive at hospital 730am ... 🙄 So as yet I'm not sure what time my op is. Could be early but not sure yet. I'll find out when I get to hospital I guess.
My stomach is churning now and I am on edge. My parents have been over and it made me even more on
Edge lol...😬
I will message you after the op when I'm with it, not sure what state I'll be in.
We ought to keep in touch because I want to know how you get on with a doctor.. They all sound horrendous your docs ?!! But you do need to be scanned and a laparoscopy looks to be on the cards for you I reckon.
All day I've been moving about and pain is there on the right, nagging gnawing achy weird ... Not easy to describe. Just feels almost like something wants to go BANG!!!! Seriously !! It's the only way I can describe it. Like a throbbing weird pain. Scary really.
Xx
melissa39479 caroline25937
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melissa39479 caroline25937
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caroline25937 melissa39479
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Yeh got that message.
Cheers Hun. I shall let you know. Try and get some sleep if you can..😅😆
Impossible I know !!
Speak soon
Xx
sanya11314 caroline25937
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but mind you, I truely hate ligaments and veins, yours sincerely doc martina.
sanya11314 melissa39479
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We had the luck after being turned away multiple times at ER (obviously not dying, hence sent home), that our gastroenterologist had enough, said this was not normal and if I agreed to a 'diagnostic laparoscopy'. HE called the hospital, HE called the gastro-surgeon,
without his help, we wouldn't have had a lap at all.
Because of the diagnostic lap being done by a gastroenterological surgeon anyway, I asked, if in there, they could not only inspect, but also take the appendix out no matter how harmless it looked and they agreed that they usually do this with these symptoms anyway even appendix looked normal.
There were adhesions, there was a blood filled cyst.
After lap, after appendectomy, after adhesions divided, after cyst gone...the pain still is there.
Still very happy the appendix is ruled out for sure.
Do you have a gastroenterologist to talk to?
melissa39479 sanya11314
Posted
Hiya Sanya
I see you have the same problems as me being sent home multiple times to suffer in silence.....it seems to me they dont care about people any more.
Yes the gastro sent me for the colonoscopy I kept asking him what is this pain going through my back and into my groin and abdomen area and he blanked me pretty much......then he sent me for that awful colonoscopy last friday I wont ever forget it! I asked him why my groin was swollen and he said dont worry about it! Ive just been to the pharmacist and i told him my symptoms and asked him could this be my appendix he said he couldnt really comment have i seen my doctor this is all just a joke now...beyond real its as if they want you to drop dead he did say oh maybe you have a trapped nerve i said what for 8 months? He said well it could be but i cant diagnose you.......I give up with these so called professionals nothing professional about their behaviour. I really am at a loss of what to do. I would like to know its just a trapped nerve or something like that then I can rest my mind.....ive read just about every illness on the internet that can cause this pain still none the wiser. I wont go to A&E or call an ambulance again as the last paramedic said he wasnt medically trained lol if he isnt medically trained then how comes he has a fibrilator in his ambulance? It gets worse once up A&E the last time they were all scratching their heads I was just thinking if they dont know whats wrong with me what to do next. Im sick of being prodded needles blood tests and they didnt label my smear test properly up the hospital and said I now have to have another one however my doctors dont do this at their surgery. Im sick of being fobbed off I told you the last time i saw my GP and told him of my agony he said "what do you want me to do about it" me and my mum were stunned he wrote me a pain prescription took 3 of them over 3 days and was as sick as a pig! He is a moody ignorant pig and was hurrying me up as if he wanted to get rid of me no bedside manner he was nasty nasty nasty and made me feel 100 times worse. I just wana cry in fact last night I tried to sit up until around 4 a.m. because i just dread laying down as I sit here right now im not in too much pain but as soon as I lay down im in excruciating pain that no pain killer can touch.......so it looks like we have to be our own doctors to no avail. I dont care if they take out all the organs i dont need just to be on safe side but this costs money and this money they wont spend. They have been told not to refer people any more even if they suspect cancer the only reason I was referred to gastro was the gynaeocologist up the hospital thought it was gastro related so I went through that whole procedure and now have to wait 3 weeks to find out if what they found is cancerous! Its a disgrace I have complained officially about 3 times now to get nowhere I feel like going to the newspapers but one girl at my surgery did that and they threw her off their books poor girl she now has no doctor that will take her x
sanya11314 melissa39479
Posted
I understand you very well.
I come with a list of possibilities to appointments
and which one they were willing to look at next and what they thought about it. I am no clinician, I don't have the training and experience, and I say that to them, so I ask, try to work together, show a case study, that looked similar and its outcome.
So when you are asked 'what do you want me to do about it?', take it as an offer (even if it was not meant that way), not offence and throw out the list, that you can suggest be it MRI for pelvic congestion syndrome or diagnostic laparoscopy with prophylactic appendectomy or whatever you can think of.
I am frustrated, when blood is taken and I am not allowed to privately pay for some more tests within the same sample, that is already right there in front of the lab (it needs doc to cross on, I don't understand) and enough serum or plasma left. This does drive me into almost 'rage', but it is useless and counterproductive.
I am frustrated, when an MRI is finally done, but half heartedly, the wrong protocol knowing this was not excluding 'everything'.
I liked a surgeon I met at hospital who willingly admitted, when it came to the huge field of abdominal pain,
that not everything was known,
that sometimes they just don't know what was going on.
And I like that attitude, because it does not dismiss one's pain,
but points out the limitation of examinations and knowledge, that is frustrating for caring docs too.
We actually do see a pain specialist for neuropathic pain treatment right now (when nerves get squeezed, damaged due trauma or diabetes or fire too much pain sensation unnecessarily/hypersensitivity after a trauma or infection.). This treatment takes months to work, if it worked. Hasn't for us so far.
Nerves can get squeezed and no one will be able to see it in e.g. any MRI or ultrasound unless really obvious. Yes, it can be years in that condition.
Sometimes some physical examination (and it's no fun since it's also intravaginal to press against certain structures) can reveal a certain nerve being the culprit, but then again what to do? A nerve block injection that will wear off?
Sometimes blood vessels are either constricted (ischaemia) or too wide (see pelvic congestion syndrom). Those could be seen in very special MR angiograms and venograms.
I do understand that first things are first,
blood work has to be done, repeatedly, and if 10 times the same: electrolytes, red/white blood counts, inflammation markers, liver, kidney; it's an absolute must and repeated since they can change very quickly.
One just hopes that additionally other tests like tumor markers, vitamines, hormones, antibodies get checked and added as symtpoms persist, too.
Celiac has been ruled out for you, right?
I would love to have the complement system checked (C3,C4, CH50), few certain autoimmune disease antibodies, some genetic constellation (FMF, collagen gene for Ehlers-Danlos syndrome), but so far was dismissed...but will bring it up again and again whenever the next treatment idea failed and indication rises for other tests.
One needs to stay persistent, which is also an indication for doc (and explanation to government.) to progress in search.
From there (basic tests) they go to ovaries, uterus (adenomyosis? - quite hard to diagnose actually since it is not just a solid growth), ultrasound- to gastrointestine area with scopes. Again if nothing obvious is found, then comes the rarer stuff, be it porphyria or - as we trialed 3 times - abdominal migraine.
Diagnostic laparoscopy might become an option, too. It's expensive and invasive (what if patient experiences a complication? The doc has to justify as to why it was done in the first place), hence later on the list, if life was not in obvious immediate danger or symptoms indicating.
Sometimes the trial medication given is diagnostic in itself: if it helped or not.
We trialed a lot to no avail, but giving clues that it can't be this and that therefore.
There is a capsule endoscopy (swallow camera) that can assess the small intestine by sending pics. No scope goes through all your small bowel.
Now this seems never to be given first thing, only when symptoms go on and on...for months and years and after conventional scopes were performed.
Due to duration and nothing obvious to the blind eye, we help ourselves as much as we can, with food diaries, that never revealed any problem (than nuts, grains physically to cause more pain),
with the contraceptive pill to avoid further blood cysts to form (which is an absolute blessing having no spikes on top of constant pain),
with acupuncture and cupping and chinese herbs,
with silica water and magnesium malate since aluminium loading seems high (hair sample),
with proton pump inhibitors for acid reflux and warm bottles, castor oil warm treatments on belly and a squatty potty at the toilet. Probiotics.
With osmotic laxatives daily to avoid constipation.
Embracing every treatment trial offered and note down if it helped.
I am at ends with the waiting times and 1000s of dollars it costs, if it only helped.
But we will hang in there
and will return to those docs, we liked and not to those, we disliked.
Those we liked haven't found the reason so far either and are puzzled, but willing to help each time another bit, another step,
not all at once as I would wish,
but bit by bit since they can justify the next step simply by the duration and persistance of sickness and exclusion of basic other reasons.
Docs do get pressure from government massively not to order too much of this and that, when government has to pay. It is a business calculation, accounting that is behind it, not neccessarily doc's fault. But the longer symptoms go on, the more they can issue and do.
If you start threatening the docs and staff in the middle of unknown causes in the middle of investigation, I fear it will backfire, since they are humans with pride and dignity, too. On the other hand they HAVE to help.
You need to voice when you feel unheard, but in a constructive way, that they will be willing to continue seeing and work with you.
The girl who voiced in a way she was thrown off, I quite don't understand, since every doc could be fired by 'failure to render assisstance'.
Or this place is really better avoided. Do you have another option?
Voicing is better with a backup, with a proof what went wrong in hindsight. Once one is in the clear and the mistakes or improvements obvious.
The ER is really only responsible for immediate danger cases.
Since we had been living with a condition, that didn't kill us for months, it doesn't fall under their responsibility. In theory I get that.
In practical life it's just too much waiting and time passing. Tests that could have been done within first weeks are done after months...
Wishing you all the best!
May the biopsy results all be benign.
When will you have a check up on cysts and fibroids?
It is so frustrating and yes, we understand you very, very well!
melissa39479 sanya11314
Posted
Hi Sanya thank you for your reply I see you are in America which is slightly different from over here as we have the NHS which is free but taken from taxation unfortunately the NHS has been cut to the extent whereby now they are trying to juggle people around and only give them pain killers not getting to the bottom of the pain. I blame my current government for this. Each patient at my Gps surgery which you call physicians in America is only allowed £138 per patient which is obviously nothing!
I am still waiting for my colonoscopy biopsy for another two weeks to come back to see if my polyps are benign or not!
As for my fibroids and cysts no further investigation is being done and I have been shuved on the sideline and left in this mess.
Had another awful night again last night in excruciating pain after wakinig up and sitting up for a while downing some pain killers I start to be able to be more mobile so this has something to do with me laying down what that could be I dont now...someone suggested a trapped nerve I dont know whether I agree or not as I do already have disc degeration in my spine but it all started in my neck many many years ago and gradually became worse now im wondering if i might have a disc or two out arond my lumbar region.
So frustrating as every time I go to my GP they tell me to go to the hospital when I go to the hospital they tell me to see my GP.....going around in circles getting dizzy with it all!
I wish this would go away I can hardly bend and have taken to using a walking stick around the house which i cannot get on with at all especially going up the stairs.
Sanya im at my wits end my friend tells me im not assertive enough and the doctor who said what do you want me to do about it seemed very moody and angry me and my mother left there quite shocked by his bad attitude all i think because he was running late. Not my fault each patient only gets 10 minutes with their GP (physician) and they will not allow you to go over time I have told them about where my pain is how its ruining my life how i never sleep (even trying to sleep upright is a nightmare).....I have run out of ideas but I know there is something terribly wrong with me. This could be a simple cyst pressing on a nerve thus the hip and back pain and groin pain which is how it started but since you both mentioned appendix i felt where it was last night and it is definitely inflammed it is swollen and sticking out but weirdly on both sides mirroring the other side but I was told by my gastoenterologist NOT TO WORRY ABOUT THIS. If they actually listened to me without making sarcastic comments we might actually come out with an answer.
It took me years to get an MRI on my back due to cost and cuts to the NHS I cannot afford to go privately for this. The MRI I eventually had picked up loads of problems things pressing on nerves etc I was quite shocked to read my report and have my scans here at home as they said they had nowhere to store them! hahaha I think they dont care despite them earning over £100,000 per year! My doctors surgery is under so much pressure as they have taken on too many patients 18,000 patients for 6 doctors! Im lost I dont know who to turn to and im sick of going up A&E you have to sit there for hours and hours and hours only to be told after pain relief to go home they chucked me out at 6 in the morning once and i sat in the freezing cold outside waiting for a bus for another hour. Nobody cares if they dont know they will just send you on your merry way.
Thanks for your advice I have tried to apply this before but it got me nowhere I dont know how much longer I can go on like this im going to have to wait for the results of my biopsy then go down the appendix/ovarian cysts/fibroid route! Its all too much after all this time, I even remember going to my doctor last year probably about June time saying I felt like every time i lay down my back feels like its snapping in half she sent me for an xray and nothing showed but then again I was told doctors cannot read xrays or can they read blood tests as I later found out for myself.
Whats happening with you at the moment where are you at with your pain and what treatment are you receiving? If you dont mind me asking x
melissa39479
Posted
caroline25937 melissa39479
Posted
Hello Sanya and Melissa
Well I'm alive ladies. Still in hospital and they may be keeping me in tmrw aswell. Appendix is out.
Had terrible night with dreadful op pain ... Worst pain I've ever experienced ...they had me on morphine injections all night and yes that with the anasthetic has indeed made me feel pretty ropey to say the least.
Anyway ..my appendix was stuck down onto my bowel and scar tissue had to be freed so he could then get hold of the appendix and remove it.
The appendix has been sent off for histology testing. So I'll hear on that in a couple of weeks when I meet with the surgeon again to go over. He said there was also some bloody type fluid around the uterus.. So I have no idea what that is from, but he didn't seem concerned ?! I'll find out more detail when see him again.
I'm now just on the hospital bed trying to relax abit and also get up and move abit, it's painful .. Can't laugh or cough without my whole abdomen hurting but I guess that's gonna be like that for awhile.
I'm exhausted but just wanted to get back to you two. Thanks for your support xxxx
sanya11314 caroline25937
Posted
Hi Caroline, Caroline!!??
!!! You are amazing to have written back already, so soon.
Yes, everything must be sore from surgery anyway, every movement hurts and getting to the toilet is the biggest effort of the day. Vibration hurts for weeks often (car rides a real 'fun'
. It shall pass, but no fun for now.
Poor you!
Oh is it good that this stuck appendix is out. It was glued to the abdominal wall? What a nasty little worm.
Out, gone, not suspicious ever again. GOOD!
The 'fluid' in small pelvis (around uterus) depends on amount.
We girls are constantly dismissed with it (like my daughter), when it is in ml measures and not half a liter. When a blood filled cyst ruptures it might be brownish free liquid, when the iron is absorbed it looks greenish/yellowish even without bacterial infection. It looks horrid actually (have pics of our free fluid around uterus). It get's sucked away, that's all they do.
Just ask how much it was roughly, if more likely from last operation or from cyst ruptures. It should not cause concern if it was not much.
We got always dismissed with minimal free fluid.
What startled me, that I always got drains, after any laparoscopy tumor removal, but my daughter got no drain after adhesion cutting and appendectomy and told us, that she might have quite some pain for weeks due to the bleeding, the free fluid...? hello, shouldn't it be drained? Nope, it will be minimal bleeding, body could handle it. Uh.
All the best for your recovery!
And Melissa, I hope someone does some sort of scan, go again and again, be annoying by persistance!
Best of luck to all of you
and that we soon can look forward to normal lives. I need no fancy (but please functioning) car (mortgage paid would be good though) or holidays, I just need a normal painfree life for my girl to enjoy the birds singing and the rainbows in the sky, that are for free.
caroline25937 sanya11314
Posted
Hi Sanya.
Not a good night as I'm getting throbbing and stabbing pain as I want to wee and like shooting pains in that area....they want to do a dip test on the urine but to be honest it's likely to be all the op pain wind and irritation.
My incisions are very low literally at the top of my pubes lol one either side and then the other in the belly button... So he went in from quite low down to do his work. So I'm feeling it for sure. Weeing very slowly too as my all tummy hurts with any pressure 😒...
Still in hospital. Wasn't expecting to be so sore but I guess it effects everyone differently and depends what was actually done. Mine was stuck so I guess I'm rather raw.
Yes.. He just made comment about some bloody fluid around the uterus area and then said the maybe down to fibroids. Doubt that as my fibroids are inside my uterus and very small so I was told. So maybe it's abit of blood from the other lap in May,,no idea. He didn't appear concerned and said everything looked fine inside. He may elaborate more on that when I see him again. I was in a total daze and felt horrific from the anasthetic when he spoke to me. He did say he's taken lots of pics too and my appendix is in the lab 😑
melissa39479 caroline25937
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melissa39479 sanya11314
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sorry for late reply......I do need an MRI scan but no doubt like in 2011 my doctor wont give me one due to the expense what he doesnt realise is all my visits to A&E via ambulance sometimes are costing the NHS more money than just finding out what is wrong in a scan! Ive been on my doctors website today and there are 8 pages of complaints from patients and like I said they were on the front page of newspaper last week I cant count how many times they have been in the newspaper. These doctors are intent on fobbing you off they are grumpy moody and dont even look at you let alone examine you they treat people like vermin. They are acting like they are underpaid when truly they are overpaid and they are giving people terrible treatment pain killers are a fob off they dont want to know whats wrong with you because they simply dont care! You are right about living a normal life no fancy cars or holidays just to be pain free I use to lay in my bed and watch the stars and moon i no longer do that as i sleep on my sofa as my mattress isnt very firm and I cannot afford a new one I only bought this bed last year however before that bed I had a much firmer bed but still had excruciating back pain. Never thought in my younger days I would end up disabled its a shock to me having to use a walking stick that I keep on dropping.....given up tbh I wish everyone a healthier happier pain free life if you dont have your health you have nothing
caroline25937 melissa39479
Posted
Hi Melissa
Well it's 5 days since my op and I'm
Still very delicate 🙄 And tummy still swollen. Feel like it's done 10 rounds with Tyson!!!
It would appear appendix was stuck and he also said that the bowel in that area was abit stuck to abdom wall, so not hanging freely so to speak. So adhesions I guess kind of gluing things there. When I see surgeon in afew weeks I'm taking a list of questions with me...
By the sounds of things I've had a reoccurring appendicitis for a rather long period of time that kept healing itself and then the scar tissue kept sticking things and coming back. He did make a comment I'm sure about a faceicloth..not sure if correct spelling.. And this was in the appendix and that I also had a small appendix !!
I'm gonna know more when I speak to him properly as I was totally out of it after the op and pretty grim 🤕
Now resting at home. Think it may take awhile as it was more than just a straight forward appendix issue and I've been poorly since January. Plus already had a lap in may also. So I am feeling rather sore and I do look pregnant due to swelling !!😐
Bruise round my belly button is a lovely purple green yellow colour too.. Oh the joys !!!
Hope you are ok as possible ?
Xx
melissa39479 caroline25937
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caroline25937 melissa39479
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Hi Melissa
A faeicloth I believe is poo stuck in appendix. A hard bit. Lol. Sorry 🙄
I only had one appendix ...haha... But he made a comment that it was quite a small one.
I think the stickiness in that area is down to adhesions... So it's prob for the best that the thing was removed.. Months or maybe a year down the line I could have had it rupture totally.. It's likely to have been a problem for longer than I realised and then started to make me poorly early this year. It's been brewing away basically !!
I'm gonna get all the facts off the surgeon when I speak to him and ring his secretary today to try and get a definite appointment down, hopefully sooner than 4-6 weeks !!!
Let me know how you get on with tests or scans etc. You do need to get something more sorted though as you can't go on as you are.
I'm still resting. It was 6 days ago but feels like it was yesterday still 😖!!
X
sanya11314 caroline25937
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Could it be 'fecalith' 'stercolith'?
caroline25937 sanya11314
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No idea 🙄 To be honest I'm not quite sure what he said as I was drugged up to the eyeballs and out of it. Not totally sure.
I'll know for sure when I see him and he can explain properly.
I'll let you know.
That's the thing about operations. You are always too groggy and out of it to listen or take things in fully.
caroline25937
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Think it was fecalith yes. Lol. I'm sure he said that...
melissa39479 caroline25937
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caroline25937 melissa39479
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Hi Melissa
Poor you too.... You really do need to be seen. Like you say though an awful lot of these doctors don't seem to have a clue or don't really care!!!
You do need to see somebody though as you just can not go on like this.
The fluid... Surgeon didn't appear concerned about it... Just said it was like abit bloody around the uterus area and then he said he cleaned it up. This could have been fluid from my last lap in May possibly as I'm pretty sure it's nothing to do with the fibroids in my uterus..as they are small and inside the uterus. So I don't know. I do know though that this has nothing to do why I became ill early in the year, with all the right sided pain and high temps and elevated wbc. I know this for sure.
The appendix had to come out for sure by the sounds of things and if it was left then who knows, probably more adhesions and hassle or even a total rupture !! My only wish is that it had been removed in May first laparoscopy... Would have been easier than going through all this hassle and another lap so soon...
Hence the reason I feel sore and bloated I guess 🙄🤕😐. My appt letter has come through with surgeon for follow up chat 25 October so just afew weeks away, they are gonna see if can bring it forward for me and give me a call.
I've already made a list of questions to ask him.
X
melissa39479 caroline25937
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caroline25937 melissa39479
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Hiya
Well it's a week today since the op and I'm still sore bloated and exhausted but able to move abit more every day. Had a snooze this afternoon. It just makes you feel totally whacked out!! Mind you I haven't been able to sleep since I became poorly in January so I guess my body is just trying to sort itself out!
Appointment is 4weeks away so not too bad but they are gonna try and move it forward abit.
It's just going to take time I guess. Keep getting spasms of pain on the right but I guess that's healing, feels all tight 🙄😖
Have you any news on what's happening with you now ? Are you seeing anyone about scans ?
X
melissa39479 caroline25937
Posted
Anyway huni be brave and keep resting but also try to keep moving about just a little walk here or there around the house because of blood clots as this happened to my friend and they blamed it on her not moving....take care wish you better x speak to you very soon x
caroline25937 melissa39479
Posted
Hi Melissa
Yes it's just a slow process but it is just over a week so I guess I need to be abit more patient 🙄😐. I've been sore and had issues in that right side with adhesions etc, for months n months now plus that lap in May... I guess I must be raw.
Just wish the bloating would get lost !!😖 I have painkillers yes ... Just every 4 hours.
Anyway you really must find a doctor that is going to listen. This just seems ridiculous. Mind you saying that I know how hard I've had to fight and struggle with the doctors since January. It's no fun at all as most of them just don't listen. I ended up getting annoyed many times. Very frustrating !!
You can't carry on as you are in pain like that. It has to be looked into properly.
X
melissa39479 caroline25937
Posted
I was asking you how are you feeling now any better? Hows the pain?
Im seeing my doctor tomorrow as I saw the out of hours doctor about my dentist saying i have mouth cancer and also about my back .....they actually rang me for an appointment i didnt ring them when i saw their number come up on my phone i went into panic....they want to see me as the out of hours doctor seemed very annoyed with my doctor when i left her she was so nice a Lithuanian lady she looked in my mouth and then contacted my doctor which she doesnt have to do its not her job anyways I will be telling him tomorrow how I cannot go on living with this pain any longer.
Ive also had a letter in post yesterday from the colonoscopy department asking me to book an appointment for further treatment....now im terrified as they dont do that unless they have found something wrong with my biopsy on my polyps....my god im falling apart. Why do they do this send you frightening letters no phone calls nothing. Im now getting the guts up to ring them for my results but they wont tell you over the phone if there is something wrong which there obviously is. I feel sick to the pits of my stomach I would not need further treatment I am now feeling the C word coming at me. Anyway let me know how you are and I will keep you updated on everything. There is no way im having another colonoscopy again so they can stick it where the sun doesnt shine x
sanya11314 melissa39479
Posted
Melissa! Hello,
sorry you feel so bad.
But look, you were pushed away constantly, not taken seriously. I am waiting for the day when we finally had a result to go from with treatment and if it meant cutting out a part of the intestine. So desperate to find a culprit and jump on it.
When you see your GP (?) he is definitely allowed to tell you everything as to why the colonoscopy department wants to see you, he should have the results, you can get them printed, it is your result.
I couldn't wait for the answer either until 'an appointment' with the colonoscopy department.
Via doc you are entitled to have the result explained and given.
Don't fall apart please, it's a start, finally, finally.
Even if it was colon cancer, it can be treated, I have at least 3 people around me with that diagnose, treated, one actually falling apart completely and at a point his family couldn't cope with his crying anymore, but...he is healthy now and 5 years post op and chemo happy as a bumble bee.
Please please stay positive, you have so much pain, it was unbelievable that nothing could be found or treated.
This is a start, not the end!
ALL ALL THE BEST and I wish you could get the out of hours doc again, really, it makes such a difference how you feel in their hands (almost: mercy) even the diagnosis was the same.
Take care!
caroline25937 melissa39479
Posted
Hi melissa
Sorry for late reply,
I'm not doing too badly thanks, it will be 3 weeks tomorrow since the op. Still healing and still have a bit of swelly belly, but it has gone down lots over the last two weeks. I'm seeing consultant in afew weeks to go over everything so I will know more then.
Anyway...poor you. You have some serious crap going on I know and it is awful and scary having more tests etc, but in a way, this is a good thing. You have to go ahead and have them all done as this is the only way you can move forward Melissa.
I know its easy for me to say 'Don't worry' but please try not too, this will only add to all your anxiety.
Its natural to always think the worst.. human nature. Whatever it going on with you, they will get to the bottom of it.
Contact me whenever you want and let me know how things pan out, OK.
Hugs
C x