Today I woke up and my bladder hurts terrible. I have this constant feeling of pressure on my abdomen and sharp pain on the right side. It feels like I want to rip my bladder out and I'd be happy to.
It is nothing but trouble. I just dont know what has happened to it. It's so painful. I've asked my mom what to do as it's unbearable so uncomfortable. Painkillers don't work. The frequency is still there, in fact worse now.
I think I'll go get a catheter in as I just can't stand this awful pain any longer.
It feels like my bladder is about to explode.
I'm only passing small but frequent amounts like before I had this so called procedure (Urethral dilation and cystoscopy) but now it's worse than ever as I have a constant feeling of urge sensation and stabbing pains.
I know that I've got urinary retention as I was retaining 300 mls on my last check before this procedure. Goodness knows what it is now! Feels like I'm retaining a lot more.
I feel so frustrated and have nowhere to turn. My urogynaecologist doesn't know what it is or how to treat it. He is mainly guessing (again, like all doctors seem to do).
He is making me wait another 4-5 weeks just to see him for the follow-up which I think is awful. I can't hold on that long! It's rediculous.
I think it's time for the emergency room. Does anyone else maybe think that's a good idea?
Anybody got any ideas. This is just no good at all. I can't carry on living like this anymore. I've already suffered long enough...
Is there a possibility you could see a different doctor? I've found that a LOT depends on which doctor you have, how patient they are, and how willing they are to listen to you and accommodate you.
Re the procedure you've had done. How long ago did you have it? Did the doctor tell you how often you may need to repeat it (if at all?)
Are you on any meds that could affect your condition, or following a specific diet?
There is a possibility but it could take a long time as the waiting list could be a bit as it is the UK...
I had the cystoscopy and urethral dilatation on Wednesday. He did not mention anything about it that much. He just wanted to look inside my bladder I think that's all. He never mentioned repeating it or anything.
I am not currently on any medications or following a specific diet.
I am definitely considering getting a catheter fitted as I feel it is the only way currently I can help myself and get a bit of a sleep as it is keeping me awake as I have to go to the toilet about 6 times! I'm so tired of it now.
Now I have just had a call from my doctors and I cannot have a catheter put in due to a stupid letter from my consultant who does not care that I am in pain and have chronic retention...
I hate my doctors anyway and this is just the LAST straw....
I quit... I can't stand this awful suffering any longer... It's just not on in this day and age.
I don't know what to do and just want to curl up into a ball and be in pain no more from this retention. I'm in tears...
Sorry you are suffering so. I've had incredible spine issues this past week and understand what despair is.
So did you ever get that lumbar puncture that your dr. said was being scheduled? Hard to rule out spine problems here; poster had asked you about Cauda Equina which takes in other symptoms. Have you looked this up either on the spinal cord board or on internet to see if you have other indications? I am going to take a look at that board today for my current symptoms and maybe you should post your spinal findings there to see if any input.
How much water and liquids do you drink everyday and what types?
I feel as if doctors do not care or know what it is like to have to suffer like we do everyday day in day out with chronic health conditions. It actually makes me want to cry. It's so sad and frustrating all at the same time.
I feel that I just cannot and do not want to trust doctors anymore as I have had so many bad experiences that it is frightening to say the least. It is understandable why so many people do not bother seeing their doctor as it is a waste of time anyway and hurts the person's morale in the process.
I am beginning to think I am totally on one big loser and wonder if there is anything I myself can do that does not require so-called medical professionals and doctors? Sort of like self treatment for chronic urinary retention that does not hurt me like self catheterising does.
I have not heard anything yet about the lumbar puncture. Not sure when it is being done as I have not been told and the neurologist did not say how long I would have to wait. Probably ages too. No surprise.
I did look up Cauda Equina and it is a possibility even though the so-called spine surgeons said there was 'only degeneration' of my spine and that 'it is normal to have this' which I think are both stupid statements in my opinion. I have some of the symptoms, such as numbness in my crotch/pubic area, bladder and bowel problem, etc. Definitely would not say that it wasn't this. Though I think it would be too late to save me as I've had these awful symptoms for ages now (8 months+) due to the doctors not bothering with me and brushing me off to one side.
I don't believe it's normal to have spine degeneration at grade 3 which started at 17 years of age with a virus. Yet they think it is! Strange...
I drink mainly water and milk. I have limited my tea to only one in the morning and that is all. I only drink drinks that I know would not irritate my bladder, though if I drink any drink I immediately have to go! It just fills up so quick due to the urinary retention which STILL has not been treated even though I'm theorietically under a consultant!
I drink around 5 cups of fluid every day, sometimes 6 if I can. Though now since having this awful chronic retention, I am trying not to drink that much and once only drank 3 cups of fluid a day as I am trying to avoid going to the toilet as much as it is also keeping me awake and I just cannot stand it any longer. It's making me feel down as I'm so tired all the time. This is actually what doctors don't realise as they are so fortunate as to not have had to experience anything like this.
I don't honestly know what to do anymore as if I can't get a catheter fitted what do I do? I can only suffer and thinking I'm going to suffer for so long is making me feel life is just full of suffering.
Many thanks for your help and informative replies.
been researching 'Fowler's' on the net. A new condition (1985) so everything in the study stages, sadly.
To cut a long story short, please check out the institute of neurology which is in Queen Square, London. This site will at least inform you.
Please do not see yourself as too young for this as many of us have had diseases, illnesses, and conditions that started at your age and younger. Remember what I said about unsweetened cranberry juice (or concentrated capsules) and get to it! The bacteria cannot survive in an environment that is being treated with pure cranberry. You don't need to add further damage to your taxed bladder and you said you don't want to be on antibiotics all your life and you have a condition, the symptoms of which, need your attention. I've had bladder infections since age 12. Don't be afraid to get on board with doing what you are able with this terrible and dibilitating condition you have.
I hope I don't sound too harsh and I know what you mean when you say this is not a popular board for answers for you. Don't give up here, as you can be of help with your experience as you wait for help yourself. I guess when someone says bladder infection, I immediatly want them to get relief.
I have dr appointments today and not sure when I'll be back so am giving you 'my all' for now.
yours while managing misery, but focusing on life,
choc
Thanks for your rely and helpful advice and support. It's much appreciated and no you don't sound harsh.
I've read the research and other information on Fowlers. Though it does say that a sacral neurostimulator is effective in this condition and help to either restore voiding function completely so that I wouldn't have to catheterise or at least not as much.
My consultant, from what his secretary told me, is recommending I see Professor Clare J Fowler at the institute of neurology in Queen Square, London, not sure whether it is to get or try a neurostimulator as she worked for Medtronic which gives me a clue. I would certainly give the neurostimulator a go as it is better than having to catheterise up to four times a day which is very uncomfortable or actually for me quite painful.
I will get some unsweetened cranberry juice and capsules to hopefully prevent or treat these infections if possible. Do you know if there are any natural antibiotics like certain foods or drinks, etc?
I'm currently doing a home course in health and social care with the view to working in healthcare. I will one day get my life back on track. I just need the right healthcare professionals to give me a helping hand and the best possible chance of a normal life.
I wish to thank you for being there when I've needed it most as I've found it extremely difficult to take it all in being told I've got a chronic life-long condition.
I totally agree, I would immediately want them to get relief if someone else had a bladder infection as they can, left untreated, cause other problems, maybe even going up to the kidneys which would require me to go to hopsital as an emergency. I've got to have my antibiotics in injection form twice a day (usually they are four times a day but it is impossible) for three days at my doctor's surgery next week as I cannot tolerate oral antibiotics due to my stomache being sensitive as it has had so many oral antibitics that it disagrees now. It has left me with chronic diarrhoea and more frequent BM of all problems - now an added one.
I also agree, I am happy to share my experience and help as much as I can on these boards and any where else.
Good luck with your doctor appointments and I look forward to your next reply.
I am so glad you are being referred to someone who is specializing in your condition with the stimulator to possibly try. A little relief for a condition you have to deal with will be of some comfort, anyway, and will help your stress and quality of life, hopefully.
I know of no other foods for bladder infections other than trying to eat well most of the time to keep immune system able to fight infection and I try herbal immune system builders like echeanaca and oil of oregano, but not on a daily basis. Vitamins that are known fighters like vitamin C are worth a try. Plus I try to eat garlic when possible. But if you try the cranberry in small amounts every day or every other day (what I do), I would guess that it won't be a problem. You might want to pose your question on the vitamin board as I am not well-educated in this area. Aren't we glad for these boards and the help we give/receive?
Thanks for your reply and helpful support. As I said before, it is much appreciated as I am kind of finding life hard to come to terms with right now and my parents certainly aren't making things any easier either as they are arguing with me and picking on me which is making me even more stressed than I need to be. It's no wonder I probably got these health problems in the first place - probably due to stress as I don't really get on very well with my dad as he picks on me and decides to always have an argument of some description and then my mom decides to stick up for him, not me when he is being a nasty man. They have to disagree with things, stir it up a bit, etc. It is just so tiring I cannot cope. They seem to be always on my back trying to prove me wrong or trying to annoy me in some way. It's like they think it's a game! *Sighs*
I'm considering leaving home but have no where to go. I'm stuck with two parents who like to stick up for each other and are against me. What's the point in me being here with them?
Why did they have me if they just want to upset me and treat me like a play thing. It just doesn't make sense at all. I would only have kids if I knew I was going to love them forever no matter what and not pick on them for everytihng they do, even if it's wrong.
I just can't be bothered anymore. I see nothing good as of currently. I feel like an orphan frankly.
I too am quite happy that my consultant has decided I see someone who specialises in what I may have. I certainly wouldn't mind a little relief from this condition that plagues me day in day out, as I know you understand as you too have to deal with a similar thing. I totally agree, it will at least help relieve some of the stress from the actual condition but it's my parents I could do with perhaps having a little break from too. That would also help and maybe I could try and get back on track again.
I think I'll try some of those foods and supplements that you mention and also post the question on the board that you told me to as it would be useful to not have to take antibiotics, only occasionally if the natural ones would not be able to kill the bacteria off. It would help to restore my stomache back to how it used to be as the natural ones do not kill off any of the good bacteria in my stomache like antibiotics usually do.
I am certainly glad of these boards. Don't know what I'd do without it as there are people who help each other who have a similar goal - to try and cope with their condition or even cure it.
I'm so sorry to hear about your situation. Both the medical problem, and the one you're having with your parents. Not knowing your age, or financial circumstances, I can perhaps suggest that maybe you could stay for a little while with a good friend (even if it's just for a week or so) - if that's at all possible? You mention you have nowhere to go. Do you have any siblings? or even perhaps another family member who might be able to let you stay with them for a short period? Obviously, the best thing would be for you to be able to get out of your parents' place. Are you working?
Could you discuss your home situation with your doctor? He/she might be able to prescribe something to help you feel better. Anti-depressants can be of a great help, provided the correct one is prescribed, and the patient uses them correctly. I have even heard of them being used by people with bladder problems, like you. There might be some sort of support group available in your area, as well.
I am 21 and am not in a good financial situation currently due to being unemployed with my health problems. Unfortunately I don't have any more close relatives nearby and my friend would not be able to have me over as it's just not possible. She works every day and her mom would certainly not want anyone over at her house. I don't even get invited to their house, used to but not now, not sure why.
I have had very bad experiences with doctors and do not get on with them too well as they have never understood or been sympathetic to me when I've had these health problems so I do not trust them anyway as they misdiagnosed me too on countless times.
Antidepressants I have heard only mask the situation and can also cause worse side effects so I really would have to be on death's door to be resorting to antidepressants. They are known to cause urinary retention too which is what I already have so it would not be a good idea due to this as they are contraindicated for people with chronic urinary retention. I could do without more problems than I already have. I do know they are used for people with bladder problems but not for retention though. They are said to help make the bladder capacity larger due to their muscle relaxing properties but I would still have urinary retention though.
I have had a look for some support groups but there seems to be not many in my local area around at the moment. I may look on the internet as the internet has more things like that.
I am hoping to get a neurostimulator fitted if I can convince my surgeon to do it as I know that is the best way to restore my bladder function.
I wish to thank you for your advice and help and it's much appreciated.
Sorry I have not been on for a couple of days. I had to have antibiotic shots due to not being able to tolerate oral antibiotics to help clear my urinary tract infection from my chronic urinary retention and feel like a pin cushion! I have so far had three in my legs and one in my shoulder and am due another two tomorrow and that will be the complete course.
I am not really sure on whether or not the NHS would cover me for the neurostimulator. I suppose I could research it...
I have got to ask my surgeon if I could go for a trial yet as he does not seem to know about these new treatments.
Hi Niad,
I'm so sorry that you're suffering. Have you been tested for Interstitial Cystitis? I had many of the same symptoms last summer that you are describing now. I had a cystoscopy with hydrodistention and was diagnosed with IC. Less than a year later, with proper treatment, I feel normal almost all of the time. I hope that you find answers soon.
I had a cystoscopy under general anaesthetic but he did say it was inflamed but wasn't sure if it was infection as I suffer with frequent recurring urinary tract infections.
I also have chronic retention, keeping at least 300mls in after going to the toilet. Is urinary retention actually interstitial cystitis? I didn't think urinary retention was connected to interstitial cystitis but not sure.
I have been told by his secretary that he suspects it to be Fowler syndrome which causes retention like I have but really I don't know as he wants me to go down to London to get some more advice as he doesn't really know what it is and says there is nothing he can do to help me with regards to the symptoms.
Though it does seem strange for it to be inflamed on cystoscopy. I know that is a sign of interstitial cystitis but he said I do not have the 'classic' symptoms of it. I would perhaps need another cystoscopy to see if it is still inflamed maybe.
I have no idea what to do to relieve my symptoms as they are awful and just keeping me awake by disturbence of requiring the bathroom constantly. I'm so tired...
If you don't mind me asking, what sort of treatment did you have to help with yours?
Many thanks for your help and support. It's much appreciated.
Did you have a cystoscopy with hydrodistention? If you had only the cystoscopy only, it would be hard to determine whether or not you have IC. The hydrodistention stretches out the walls of the bladder and exposes potentional hemmorages, cracks in the bladder wall, and ulcers. When I had mine, I had glommerations and inflammation. My symtoms were awful: constant bladder pressure and frequency, and burning -- not urethral burning, just the feeling that my bladder was burning on the inside. The inflammation causes all these symptoms.
The first thing I did was to start the IC diet. You can perform an internet search to find it. I also began to take Elmiron, which replaces the lining of the bladder. It takes several months to kick in, though, if it helps at all. I also took Hydroxyzine (an anti-histamine which soothes inflammation), Urelle (soothes bladder spasms and has pain-relieveing and anti-septic properties), and Cystoprotek (a glucosomine condroitin supplement). Later I began using Desert Harvest Aloe Vera, which also helped with inflammation. My first line treatment, however, were bladder instillations of Elmiron, Sodium Bi-Carbonate, and Lidocaine.
With all these treatments combined, I began to feel better. But, keep in mind that internal organs can take up to 120 days to heal from inflammation. I began to slowly get better and now, almost a year later, I feel practically normal most of the time. I though I would NEVER feel normal again, but it does happen. It took a lot of hard work and support from my parents, but I made it. I actually just got back from a two-week vacation in South America, which I though I'd never get to experience. I just want to let you know that there is hope and you can get better.
I'm not sure if retention is a specific symptom of IC, as all the symptoms vary so much. But, if you have inflammation you may have spasms, which could then lead to retention. Even if you don't have IC, it's been proven that you do indeed have inflammation. It wouldn't hurt for you to start following the IC diet. This means no caffiene, no citrus, no coffee, etc. It can be hard, but please give it a try...and stick to it for a few months to really see if it helps. It definitely helped me. Now, my IC only flares if I drink red wine or eat something really spicy. I can even eat "forbidden" foods and drinks now if I take Prelief supplements beforehand, but it took me a while to get to this point.
I'm not certain of all the rules on this forum, but I want to let you know that there are some excellent IC support groups online. Please search for them. The "IC Network" helped me immensely. The "Interstitial Cystitis Association" also helps many people. You can contact them and speak to someone on the phone. The manager of the IC Network will also speak to you on the phone if you contact them. Please don't give up -- you can find relief and get your life back!!!
Last edited by sugarbear11; 06-11-2009 at 09:40 AM.
Thanks for really informative and helpful post. I found it to be of great interest and appreciate people's help a lot as I do find I sometimes lose quite a bit of hope as no one living with me probably really knows what it's like to suffer everyday none stop. It's quite nice to be able to speak to people who know as they have either experienced it or are currently experiencing it. I certainly have to say that I wouldn't wish it on anybody as this problem is just so painful and I am cutting my fluid intake to just three cups a day of water as not drinking at all seems to help me a lot. As soon as I drink I'm off to the toilet in no time at all!
I am due for a lumbar puncture and I just don't know how I'm going to be able to lie down for 24 hours without moving as I'll have to go to the toilet every half-hour to an hour. I have thought about requesting they catheterise me for the procedure so I can at least rest for a bit without having to get up as I've heard that if we get up too much or too soon after a lumbar puncture we can get sickness and one hell of a thumping headache which I really want to avoid. The other problem which is going to make it much worse is that apparently we are supposed to drink a lot of fluids, in particular caffeine to prevent headaches but my bladder will be a right pain and I will refuse to drink anything as I'm not going to want to go to the toilet every half-an-hour. How could I request a cetheter as I know I just won't be able to lie flat on my back for even half-an-hour without?
He did mention double-fill (not sure what that is) with the cystoscopy in the letter on his plans. Is a double-fill another term for a hydrodistention? The only thing he said was that I had inflammation and he didn't know why! Then he walked off without saying anything else.
What I did notice about five days after my operation is that I had had an injection in my shoulder which must have been some sort of medication, perhaps an anti-inflammatory? Not sure. He did not say anything about this when he came to briefly see me after the operation so am not sure what this was. Never had any injections like that before whenever I've had any operations. I noticed it as I was lying on my bed studying and felt a bruised feeling in my shoulder than looked at it and it was yellow and had a small pin hole, where the needle went.
The IC diet sounds a good idea, and as you said it won't hurt anyway. I have a stomache problem so cannot take oral medications which all of them usually are so am a bit stuck there. The instillations should be ok but he is not doing anything and is referring me onto someone else.
Wow, I didn't know that internal organs took that long to heal! Perhaps that's why he saw the inflammation as I had an infection in February and my cystoscopy in May so perhaps it could have been left-over inflammation from that as I've now had three infection in my bladder in about a year.
At least seeing you feeling much better with all these treatments gives me hope that there is something that can be done, the only problem, as I mentioned earlier is that my stomache does not tolerate oral medications so I may have to have them another way but am not sure if that's possible.
I have just had a course of anti-biotics via injection route due to my latest infection after my cystoscopy and have found that my stomache was not effected so it just goes to prove that it is my stomache and if taken by injection or not directly into my stomache it does not effect my stomache. It must be my stomache lining or something? Not sure.
I'm pleased to hear also that you had a nice vacation in South America. I bet it's quite pretty over there as I've seen it on TV but never really travelled there. I'd never manage it at the moment.
The part where you mention the inflammation may make it spasm makes a lot of sense and my consultant never even suggested that. That's a good point, sugarbear. I may actually mention this to him and see what he says and if he may be able to request I have some anti-inflammatories via another way apart from oral as last time I took these they also gave me a bad stomache.
I am lucky that I don't really like spicy foods. I have found that caffeine is certainly a no go and also fruit juices are pretty good at making it worse as I think you mentioned somewhere as they are acidic/citrus.
I'll look the IC diet up and see if I can at least cut some 'trigger' foods out. I once had to do this for my miegrains as I used to suffer from 'cluster' miegrains and always seemed to have one. Had them since I was 11 but have now not had one for quite a while. Think the last time I had one was when I started college at 16. I used to find that idf I got stressed or anxious I would get one. I think that was my 'trigger' for them.
I'll go check out those IC support groups you mention.
I would like to thank you once again for your support. I have found lots of people on these boards of much help and were there when I needed them and I knew I could talk to someone.
Many thanks
Kind regards
Niad
Last edited by Kertie446; 06-12-2009 at 04:57 AM.
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