IBS or something else

[PAMEI]

Hello this is my second post Hospital says I have IBS but I am still in denial and if I do it’s IBS C.I have severe pain in my pelvis in my private area just above my man hood my bum cheeks hurt and I have severe back ache which burns.my thighs and hamstrings are really tender I can not stretch them are these symptoms of IBS

[Luisa22]

What you are feeling doesn't sound like IBS to me, but IBS can affect people differently. It sounds like you've got pain in the pubic bone area? And the other symptoms, bum cheek pain and back pain, legs etc could be nerve related maybe, kind of like sciatica or similar?

It can get difficult to 'go' with discomfort from sciatica, and that can often cause constipation.

Have they given you an x ray or MRI of the lower spine/pelvic area?

And have they checked your prostate? A swollen prostate could cause issues.

I am guessing your bladder is okay as you didn't mention?

I'm not a doctor and don't know... but IBS ??

[PAMEI in reply to Luisa22]

Hello thanks for your reply I agree with you pubic bone area problem is I have had severe pain everywhere,I had sciatic nerves into both hips well 6 in each hip when by bowel was impacted at the time for 30 days with no passing of gas my bowel was impacted for around 60 days before colonoscopy so I know that feeling I have had no scans of the lower area I was going to try get this done last week but I had a consultant in the gastro who had no time for me I have had both cameras and an ultrasound and an abdominal ct scan the ultrasound was not done properly it did say my prostrate appears to be altered in texture but normal in size an out of hours GP felt it and said it feels normal but for 11 week before I started having issues I had pain in prostrate gland when crouching between anal and testicles I did not know what it was at the time I thought it was a strain due to me doing lunges and squats whil exercising has for my bladder I told the lady who did the ultrasound I had to go for a wee in the practice and offered to drink more water and wait but she did it regardless the reported my bladder was inadequately filled I do not think I have IBS I think the constipation and pain is being caused by something else I will carry on fighting to get more tests done first and when I have exhausted thes avenues then I will accept the diagnosis the problem I have found is if nothing is seen on cameras or ct scan and biopsy’s a consultants answer is put it down to IBS and no further investigations and that’s wrong

[Luisa22 in reply to PAMEI]

Oh I see. Yes, it can work in reverse too. You have a history of impacted bowel. Oh my gosh, that must have been awful for you! Yes, that could irritate the sciatic nerves and cause some of the problems you mention.

Now I am beginning to see why they diagnosed you with IBS. Because of the impacted bowel.

I am so sorry that GI specialist had no time for you!! What?? It's incredible. They have no idea what it's like to be unwell like that. An impacted bowel for 60 days must have been sheer torture.

Have you found anything at all which eases your constipation? Did your doctor prescribe something for it?

It does sound like maybe something else going on too, but that's just my uneducated approach. Possibly the bowel affecting the nerves or vice-versa

(What came first, the chicken or the egg, scenario.)

I hope you can get more tests done and get to the bottom of it, or at least find something that relieves symptoms.

[PAMEI in reply to Luisa22]

hi thanks for your reply I have not been able to get near a GP I have had a terrible last 6 months you would have to read my diary log to believe it, it really is unbelievable and shocking

[Luisa22 in reply to PAMEI]

I can imagine, how horrible it's been for you. Not being able to get near a GP is just plain shocking and terrible. I wonder if they want to kill us all off sometimes!! Not just those with IBS but as many various sick people as they can! Are you in UK? If so, you need to get onto NHS 111 and if you have any 'red flag' symptom, emphasise it. It's amazing how quickly you will get a call back from your GP.

Now, I am older than you -over 65, so us oldies ring bells when 'red flag ' symptoms are reported, and the 111 people are pretty good. I am hoping that might also apply to you at age 45. I do hope so. Goodness sake -they don't want to be accused of murder. That is not a good look.

[PAMEI in reply to Luisa22]

hello I have changed my GP practice this week and got a phone call then an appointment yesterday I explained about the pain and the burning and all I can say is I won’t be going back to see them.GP says pain in my thigh is a muscle injury even tho I have not been able to do anything for 6 months and I know about muscle injuries has I usually played football 4 times a week and run the other 3.Has for the burning he spoke about my mental health and said my mind can play tricks on me,what a stupid stupid man utter waste of time maybe I should have smacked him in the nose repeatedly and said to him your not bleeding and the pain is in your head I left there flabbergasted and feeling worse.Yes I am in Uk I rang 111 maybe 2 month ago got a phone call back 10 hours later..I have been in a GP practice once in 20 years and I think after yesterday it will be another 20 years more and unfortunately for me I will have to keep going to the A&E until they start to pull there fingers out and start to do further tests I can mentally cope if I do have IBS but my body burning all over constantly needs to be investigated and for professionals to disregard what I am saying is shameful

[Flyonawall in reply to PAMEI]

what's your diet like?

[PAMEI in reply to Flyonawall]

hello hope your ok sorry for late reply I work non stop decorator through day and work in restaurant at night my diet for 35 years was terrible no fruit no veg no white meat and no fish not enough water intake I have never been a big alcohol drinker.my diet would consist of cakes biscuits curries Chinese food from restaurant Greggs and 8 coffee a day 2 sugars in each cup and pop I will hold my hands up and say absolutely terrible.I have now changed my diet 360 with what has been happening and I am still trying to make it better it’s just very hard to get a minute to think at time with working a lot 3 kids and 2 dogs and I won’t forget my wife😀

[Flyonawall in reply to PAMEI]

That very busy life,providing for your family with little time to think or rest,although normal for you, I imagine will be very stressful underneath it all.

It is difficult to feel so lousy and to also accept that "it's only IBS" and I'm not minimising it at all,because I have it.It's important to be sure it is nothing more sinister.

If it is IBS then you have to evaluate EVERYTHING you eat,which is a whole added stress for you and your family.

I believe the best starting point is the Monash University fodmap guide.

If things are getting "stuck" try a generous srving of porridge for breakfast,use non dairy milk.And if you don't like porridge, get to like it...

And the next thing is to consider the quality of that food.The less processed the better.

For your health and your family's well being you need to find a little time for you to breath, to think and look up.

I know how hard this can be...

All the best

[PAMEI in reply to Flyonawall]

hi thanks for your reply I am a person who never asks anybody for anything I never want anything so for me to say something is not right I am 100% .3 years ago as a family we had a situation with our oldest son Myles who was then 16 is health started to go down hill to the point he collapsed the GP did not do enough for him messing about playing God.We had to go down the route of ruling out Lymphoma Cancer he eventually got diagnosed with extensive IBD he had a flare up for just short of 6 month and GP was a joke and I am now experiencing the same fighting a system that should help you.I really do appreciate your advice and everyone else’s and I do take it on board and will fully digest it when I stop to breath I am cleaning the house at minute before my wife comes in from work this is after a hour out with my 11 year old Isaac at football life is busy and it flashes you by.I can accept if I do have IBS has I may not like it like yourself and everyone else all we can do is accept and deal with it but for me and everyone else who is in my situation or a lot further down the line with IBS all we want is to have every test done which I believe we all deserve.we all contribute into the NHS if a consultant or GP was on holiday or in a a restaurant they would expect a certain standard and it’s the same for all of us on here we expect and deserve a certain level of care standard and empathy from those who are paid to look after us and in my situation and I guess alot of people on here it does not get met I really do appreciate yours and everyone’s input and advice

[Flyonawall in reply to PAMEI]

There are good GP's, finding them is the hard part.

There's a consistent theme here of arrogant Dr's.I have had a taste of this.Very disempowering.

I don't know your story but it sounds very difficult. I have some understanding of your self reliance,that's your strength,a good thing...

Don't give up .Do what you can yourself,try stuff like fodmap if you have not.

All the best

[PAMEI in reply to Flyonawall]

hello thanks for your reply I totally Agree with you and I will try the fodmap I will wish you a lovely weekend

Paul

[Dolly38]

Good morning

You poor thing. Constipation is painful and makes one feel dreadful. To have it for that long is quite distressing. I suffer from constipation and read endlessly on foods and things that help. When I do not pay attention to drinking enough I haven't a hope of opening my bowel. Do you drink enough my dietitian recommended two and a half litres of water and take plenty of exercise.

I was also diagnosed with coeliac disease so eating now challenging. Pain is complex but my advice is try to treat the symptoms of constipation and seek help with this symptom from your doctor. Good luck but never give up hope from getting this sorted out. Walking helps too. Kind thoughts to you Lally

[PAMEI in reply to Dolly38]

hi thanks ever so much for your reply I am trying my best to keep fighting but fighting a system really gets you mentally exhausted along with not being well it gets me so down I have been to doctors once in 20 years I know my body and I know when something is not right

[Kezz63]

Hi 2 years on and I am also refusing a diagnosis of IBS. I went to the hospital last week and he said he thought I had, had food poisoning which had damaged the lining of the stomach mmm we'll see and possibility a lactose intolerance.

I'm seeing him again in 2 months time and in the meantime am doing a lot of reading about viral infections, fungal infections etc., and eexperimenting with different types of food.

I'm also keeping a food log and bog log if you know what I mean 🙂 I definitely haven't got a lactose intolerance.

My bowel was impacted 2 years ago I took laxido and it worked a treat.

If it isn't IBS I'll let you know

[PAMEI in reply to Kezz63]

hi thanks for your reply I also do food log I started on laxido laxitives and suppositories after 21 days of bowel impact and no gas and after 60 odd days they were not working it was only the bowel prep that cleared me and over the 60 odd days I was an utter mess

[tomc]

In a word. NO. I had a complete Ileostomy done, and the only symptom I had was a heavy blood from the rear end NO PAIN at all.

Although, I would see the specialist and they will put your mind at rest re IBS.

Sounds more like a nerve problem, I am not an expert on medical matters.

[PAMEI in reply to tomc]

hi thanks for your reply my bowel was impacted for so long my nerves are all over the place

[Breathless1943]

hi there sounds very similar to what I’ve felt for the last 10-11yrs.

I think I’ve had every scan,test,diets,there is out there. But I believe once you’ve been labelled IBS,it’s on your records for life,it’s a cop out. I did find a gastroenterologist who sent me to see another specialist who reckons it’s the Perineal nerve,which can cause all your symptoms. He also told me that’s one thing they can’t see on a scan,so really it’s all pot luck.

[PAMEI in reply to Breathless1943]

hi thanks for your reply I totally agree with you it is a cop out I get mor empathy and sense out of people on here

[behj]

in all my years of researching ibs- I have never seen or heard of the symptoms you describe as IBS. I would get 2nd opinion? Good luck !

[PAMEI in reply to behj]

thanks ever so much for your reply I am in the process of fighting the the GP and hospital system it’s madness

[behj in reply to PAMEI]

total madness -bureaucratic incompetence! Best of luck!!!! Behj

[PAMEI in reply to behj]

hi thanks for your reply I understand what you are saying

[behj in reply to PAMEI]

👍

[Flyonawall in reply to PAMEI]

I agree that none of your symptoms sound anything like ibs.

They could be from multiple indivudal causes,all overlaying each other.

My understanding is the uk health system is a shambles and grossly overloaded.

You have a history of being very active,of having a spinal problem(sciatica)perhaps a groin strain from lunges.Re the prostate, did you have a psa test along with the other inspection?

Are you still having major constipation problems? Do what you can to address this if you haven't and drink several litres of water a day and up your fibre intake e.g. porridge. Try giving yourself enemas,but learn how to do this. Maybe go to someone initially for this.

If the food going in isn't coming out the other end you're going to be in a living hell.And I agree with your simple question ...

Why?

All the best

[Clara25]

Hi PAMEI, I am a 74 yr old female and have the same symptoms as you. I haven’t been diagnosed with IBS, my last Gastro dr visit was in July. I was hoping he would arrange a colonoscopy, but because other tests (FIT Test & C125 blood tests ) were clear, he refused to do it. His words to me were, “It’s an IBS kind of thing”. In my opinion, I am receiving no help from NHS at all. I had a consultation with a Gynae/urology clinic on 9th August. I was hoping for the bladder camera but that didn’t happen, instead I was given 2 internal examinations and told they could find nothing and they sent me to have another C125 blood test, this is a cancer test. . However, I was referred for an Ultrasound & Vaginal Probe . As previously said, this was on 9th August and to date I haven’t had any blood test results, no letter sent to me and my own GP surgery regarding the outcome of my visit. I have received nothing regarding a date for the ultrasound etc. I telephoned the consultant’s secretary and was told as I was seen on the day by one of the consultant’s team, my ‘letter’ is waiting to be signed off by the actual consultant. 5 weeks I’ve been waiting and still nothing. I’m at the end of my tether and my anxiety is through the roof. I don’t have one hour of the day without sheer discomfort/pain and feeling very sickly. I’ve been like this for 2 years now. Heavy bearing down feeling low down, pain at the top of my legs and around groin area. Hip & lower back pain. After a bowel movement I can either feel extremely dizzy/sickly , stomach cramps which remind me very much of menstrual cramp, if I stretch my body the pain at the top of my leg (always left leg) is quite bad. I feel as if wind/gas is making it much worse. I’m now beginning to sometimes have difficulty in passing urine and this affects my lower area a lot. I’ve had 2 ultrasounds in the last 2 years to check ovaries and they were clear. My fear is, that whatever is wrong with me and has gone undiagnosed for this long time, has /will turn into something more serious. I very often have difficulty walking because of the discomfort down below, makes me want to tip toe. I live alone (widowed) and don’t have family near me. I’m just not getting the help I should be getting from NHS. Since Covid everything has just gone to pot. 😢

[PAMEI in reply to Clara25]

Hi Clara I understand your frustration and totally get where your coming from with your he support I am sue most on here would agree there is a lack of support from the so called professionals.I have had to chase results has I have found they get lost or not sent I know it must make you feel terrible it does me.I have been so well mannered and respectful towards people but I am at a point now where I am diflated I bet you are too but keep going I know it’s tiring.I know you feel like your talking to a brick wall and if you ever feel so low you are always welcome to speak to me privately or on here

[Breathless1943]

I can totally empathise with you😢. You’ve practically just described myself,apart from the sickness part. First thing in a morning for about an hour I feel as though I’m carrying a large bag of potatoes on each hip,I feel weighed down from my hips,but that passes after a while. I also used to tell consultants,GP,Ect it never affected my urinating ,but it does now.

One thing I find strange though is it never wakes me up,but the minute I get up it starts all over again. So I’m trying to put some of it at least must be nerves,stress,or even passed stress that’s coming out now. But I was told there is no machine that shows a problem with nerves,so it’s just guess work.

I’m no different from a lot of folk,in thinking the NHS has gone under since covid. And to get to actually get to see a GP is like begging.

So you see that’s why I can totally empathise with you,because I’ve been dealing with this for around 10yrs now,so good luck to you all.

[IBSsucksallthetime]

Ibs-c is horrible that must have been horrible for you. I’m from USA so I’m not sure if you may have access to magnesium citrate? It is horrible to pallate but if you drink enough hopefully it can help clear out the Constipation? You guys have drugs over there that I have never use so I am not sure if there’s a link to the ones that you have already tried or not. Just trying to help if possible, good luck!

[Luisa22]

It's shocking that your GP isn't taking these symptoms seriously enough and the standard of care from someone who is a 'professional' is sadly lacking. We wouldn't get that from any other profession. If we took our car to be repaired we'd get a better standard of care!

Or a solicitor, a reputable roofer, or anyone else.

The 'it's all in your head' line is quite disgusting in my opinion. They just put you in the bin with that remark, and you're dismissed, like saying 'there's nothing I can do for you, don't come back.'

No suggestions...no medicine...no pain relief. Well that's shocking.

You must feel gutted because you actually changed doctors hoping for a more intelligent approach.

I've forgotten if you mentioned this before or not but will they refer you to a gastroenterologist?

Yeah...I suppose they would have to if you insist, but the waiting time doesn't bear thinking about .

It would be obvious to me if I was a doctor that you needed help, because I'd look back at your notes and think -this guy goes 20 yrs without coming to the doctor, so he's not some kind of medical head case, and there must be something really wrong to bring him to the doctor now.

I wonder what's happening to the standard of medical care nowadays.

I can imagine that if you haven't eaten healthy for a long time, then you start to eat healthy food, that can be a bit of a shock for the system and could cause some pain and gut upset at first. so go steady introducing new foods. Do it gradually at first.

Years ago someone visited my hubby and me, and he always ate takeaways and never much veg. We cooked him a lovely healthy dinner, and he was up all night with pains in his gut. I felt really sorry.

[PAMEI]

Hello thanks for your Reply you are on my wave length we must be telepathic twins you have really nailed it with what you are saying you are so true..I am one of the straightest most honest people any of you could ever meet and honestly read my 44 page diary log since May it’s shocking what has happened and gone on it’s unbelievable.The new GP Practice for me was a fresh start to get sorted and it left me feeling worse I am really fighting a system and I have no choice now to go to st James hospital tomorrow and tell them once again the whole of my body is burning my spine my lower back all of my legs into my feet between my shoulder blades it feels like I have been hit with a shovel and I can not stretch my thigh or hamstrings out and anyone reading this it really is happening. My name is Paul I am from Gomersal West Yorkshire I have a 44 page complaint into PALS and I am crying out for help, and I will not stop fighting I know my body and something is not right I may have IBS but I feel I have a lot of symptoms going on which don’t go with IBS. my bowel was impacted for 60 days it may have caused nerve damage or it may be something else but something is not right and it definitely is not in my head and your right it’s insulting and degrading.Has for a gastroenterologist when the surgical consultant had the last meeting with me he said there would be no point but he could not even put the correct information on the discharge letter it say I deny any weight loss the 2 stone that I have lost must also be in my head what an utter shambles.there has been times in the last 3 months where I have woke up and not wanted to carry on it has not just been the pain but more on the way have been treated I have mentioned above my name is Paul my number is 07741 554052 and anyone who wants to read it I will what’s app you it because it’s disgusting and shocking

[PAMEI in reply to PAMEI]

I also have pain in my lower pelvis in private’s area and in my lower left quadrant and on the bends of the transverse area of colon