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LornaLee

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Reply with quote  #1 
About 7 weeks ago, I started noticing one day that I was needing to pee more and more, every few minutes practically, I had pressure in my lower abdomen and such, so just thought it was a basic UTI. The first doctor I saw didn't take a urine sample immediately, and instead gave me medication for an overactive bladder and sent me home. The pills didn't work, just got worse, so went back and this time he gave me an antibiotic. It worked at first, after 2 days the symptoms eased and I felt great, sadly it only lasted a day and a half before it all came back with a vengeance. Went back again and was then asked for a urine sample (this after a week of antibiotics), and this sample came back negative of any infections, so he said there was nothing I could do, end of story.

I ended up going to ER a few days later, where I was given a quick CT scan and both a blood and urine test. The CT scan was fine, the urine was negative, though the blood test did show slightly elevated white blood cells. So I was told that likely I did have a UTI that had been cured, but just my bladder was taking time to heal. So I was given another antibiotic and sent on my way. Same as before, after 2 days, the symptoms went away, and I assumed this time for good, but it only lasted just over 2 days before it returned again....

Went to the urologist where yet again I had to give another urine sample for a culture, and a third time, showed up negative of infection. I was then given a cystoscopy, where he determined that my bladder was completely fine, I was sent for another CT scan, and yet again was told nothing was wrong with me (though they noted my ovaries were a little larger than normal, but since I have PCOS, this is expected). After the results, the urologist decided to give me yet more medication for an overactive bladder and told me to go back in a month.... This was over 2 weeks ago and the pills aren't working.

I asked the urologist about Interstitial Cystitis, but he claimed he saw no evidence of it when my bladder was checked.... The more I read about IC, the more certain I am it is what I have, but the urologist just doesn't agree with me.

I've been doing my best to stick to an IC, anti-inflammatory and alkaline diet, and I have noticed that foods like tomatoes and chocolate have had a bad effect on me, so I've cut them out completely, along with other known trigger foods, though naturally my diet is far from perfect.

I'm just frustrated about what this could be, if I'm right or not. The symptoms I have are that I feel the constant need to go to the bathroom. I don't have urgency, I've never had to quickly run to the loo, it's just a constant pressure. I also get bloating in my lower abdomen, sometimes to the point it feels like I have a band around my pelvic region. I also have odd pulling sensations going from my groin to my stomach. And on top of this, I also get occasional sharp pains in my clitoris. I have used a cream to combat possible yeast infections caused by the antibiotics, but it hasn't helped those issues completely. I just feel bloated and anxious, but I feel I need more help than sticking to a diet.

Does anyone have any possible advice for me? I have also been taking D-Mannose a few times a day, though don't know if it's been helping or not. And sometimes I take a little coconut oil. I've only been drinking water, I've avoided everything possible that could irritate my bladder.

I have also been to see a gynocologist to check my hormone levels, I just had blood tests yesterday, as having PCOS, I'm sure my levels are all over the place. Could this be causing my problems? Or at least making them worse?

I'd love any advice or help that anyone could give me. Thank you if you've read this far, and sorry for going on. It's just been a horrible 7 weeks, just want this to be over.

Anyway, look forward to hearing from you. Thanks [smile]
Moderatorsusan

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Reply with quote  #2 
Lorna

I'm sorry to read that you have experienced so much in the last 7 weeks. At least treatment options have been quick but sadly it hasn't resolved things.

OAB medications take time to build up in your system but I'm leaning towards the view you may have a low grade lingering infection that simply hasn't been cleared up by the right antibiotics.

I'm not sure which country you are based in but I would go back to your GP and ask for another culture to be sent off. If you are US based then United Medical can offer a broth culture which is much more detailed culture than standard testing. Patients can send samples direct both from the US and internationally and will receive results showing the antibiotics susceptible to and resistant to the bugs in their bladders. Your GP hopefully can then prescribe high dosage antibiotics to clear the infection for a period of time.

If UK based there are two specialists that can be consulted about infections and the COB office can send you full details if you call them in the morning.

Hormones can play a major part in bladder issues particularly for those who are perimenopausal or menopausal. As you have PCOS you may want to monitor when bladder symptoms are worse. Before ovulation and leading up to your period or throughout the month. Your gynaecologist should be working with you to look at ways of possible hormone supplementation. I'd get bloods done to check on your hormone levels. Ladies normally supplement with localised vaginal oestrogen such as Vagifem as the urogenital tract needs this as you get older and tissue thins leading to increased infection risk and weak bladder. However with PCOS treatment may need to be different. I assume a full pelvic MRI or scan has been done to rule out anything that may be putting pressure on your bladder such as fibroids etc?

Diet will help and can keep things under control and you have identified triggers. Certainly anything sugary if you have bacteria in your bladder will feed the bugs and tomatoes will cause a flare due to the high acid content. Again the COB office have diet sheets they can provide you. But for the time being avoid alcohol, all fruit juices, anything sugary and anything spicy, cut out all sodas and caffeine as well. I know it's dull but you need to die down the inflammation in your bladder and this will help.

D Mannose is really useful for those with E. coli infections and can be taken up to 8 times a day when in a flare. However it only works on coli forms such as D Mannos so you really need to identify what's going on in your urine. Azo is a useful OTC medication to help and also baking soda can reduce the acidity in your urine. A teaspoon a few times a day in water.

To help with pain amitryptaline or Nortryptaline will calm the nerve endings in your bladder. Taken at night and in a very low dose they will help with sleep but will to start with make you feel groggy in the morning so start with 5mg and work up.

An excellent lifestyle book to get hold of is that written by Angela Kilmartin. COB should have a copy and it is available via online retailers. She was a pioneer for ladies with bladder issues and her advice has been followed by many over the years. It's no nonsense and down to earth.

Finally this forum is UK based but there are US based associations - The IC Network or the ICA who have excellent websites.

Hope this helps.




LornaLee

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Reply with quote  #3 
Thanks so much for your response, I really appreciate it. I'm in the Netherlands right now, but I am from the UK and will be returning there in the next few weeks. This is one of the reasons I've been rather nervous about getting this resolved. I could get medical care in the UK, but I will likely have to go through all of this again, and at a much slower rate. As you said, things are very speedy here, which I have been thankful for.

I've had 2 CT-Scans, but no MRI, also 2 ultrasounds to check my bladder and also my uterus etc. I was told my ovaries are a little enlarged, but this is to be expected with PCOS. Other than that, was given a clean bill of health.

I'm actually seeing my urologist tomorrow, so I will bring up the broth culture with him, I also had advice from someone else, saying to ask him to search for Mycoplasma hominis, Mycoplasma genitalium, Ureaplasma urealyticum, and Ureaplasma parvum. I just hope he agrees to do it.

I'm also in the midst of getting my hormones checked, I had blood taken yesterday, and today and tomorrow I have to collect my urine for each day and then provide the samples for further testing. I'll be getting the results for that in 2 weeks.

I've also been sticking to an IC, anti-inflammatory and alkaline diet. I stopped drinking anything other than water about 6 weeks ago. Also no sugar, citrus (in fact, most fruits, just in case), sugars, spices etc. And indeed, it's been a boring diet lol But I'm willing to just to feel better.
cherrypie

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Reply with quote  #4 
Hi,
Have been reading your story with interest as although things have been happening much more rapidly for you than they have for me, my symptoms have been taking place over a number of years rather than months, many aspects of your story are very similar to my own especially the last few months. Like you I am trying to adapt my diet and identify triggers as I really want to help myself. I also take a spoonful of sodium bicarbonate in water morning and evening to help the inflamation in my bladder. I do drink herbal tea and decaffeinated coffe as well as water but nothing else. Alcohol was cut out at the end of last year and caffeine earlier this year.

I have described the feeling in my bladder as a vice around my lower abdomen so I suspect that I am experiencing similar discomfort to you. The need to go to the toilet so frequently is less some days than others now. I have been taking Betmiga 50mg for six weeks now. I was told that it could take up to eight weeks to really take effect so am plodding on. You have not mentioned which OAB medication you were given but I suspect that it will have been something similar. I do not know if you are still taking it but if not I would suspect that you did not give it long enough to work if not.

I was advised by other members of this site to keep a diary not just of food and drink but clothing worn, exercise etc. One member even suggested that I note down the weather. I have now started to do this. Like you I am really frustrated as I have had no diagnosis! Back at the urologist tomorrow!
Lindilou

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Reply with quote  #5 
I know exactly how you feel.  AND it's bloomin awful.[bawl]  I've started Oil of Oregano, have you thought of trying this, it's advertised on this website in the shop section.  It's antibacterial, antiseptic and anti fungal.  

I was watching an old Ray Mears programme the other night, he was talking about 'Natures pharmacy' and to remember it and to use it.  I think he was in Africa on this particular programme.  Some day a lot of these drugs we use from the doc etc are not going to work anymore, some of them have arleady reached this stage.

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LornaLee

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Reply with quote  #6 
I was actually given Betmiga to begin with. The frustrating thing about what happened when this started is that the GP I saw diagnosed me as having an Overactive Bladder rather than an infection. He did not ask for a urine sample, he just said 'take these, it isn't an infection'. So I left, took Betmiga over the weekend and I felt so much worse. Thankfully I have not felt that bad since, but I felt as though my bladder was going to burst. Sleep was impossible. When I returned to the doctor on the Monday, the first thing he said when I walked into his office was "so you think it is an infection then?" and then prescribed me antibiotics, again, without asking for a urine sample.

It was only when those antibiotics failed (although both sets of antibiotics I took worked for a couple of days before the symptoms returned again) that he requested a sample. I later learned that taking antibiotics can greatly affect the results of the sample, even though my GP denied it. This is one of the reasons that I'm taking a urine sample with me today, while I'm still taking OAB medication (it's Oxybutynin, hasn't really helped except give me a bone dry mouth and throat), I'm not taking antibiotics, and haven't for almost 4 weeks now, so hopefully this means the urine sample will be better than the previous 3 that I've given.

I heard of the bicarbonate of soda method, I haven't tried that as I am taking medication for high blood pressure (linked with my weight, which is slowly coming down, and also tied up with my PCOS), so I didn't want to risk raising it. I have taken coconut oil, and actually have read many accounts of how good it has been for other women with either UTIs or IC, so I'd highly recommend looking into that.

I also tried D-Mannose for a time, though I expected it would not benefit me, and it didn't. D-Mannose is only helpful if you have the e coli infection, which 90% of women get. Just typical that the ones that need it the most, do not have the e coli infection.... However, it is still handy to have around, as it can get rid of a UTI before it really takes hold, without resorting to antibiotics, so my hope is that it will be useful in the future.

I have also heard about the wonders of apple cider vinegar. I tried that two days in a row, mixed with warm water (as was advised), it was certainly not the most pleasant experience [tongue] I drank it with a straw, since the vinegar has been said to damage tooth enamel over a period of time. I probably should have continued this, it certainly didn't bother my condition, and actually the days I took it were some of my better ones. Perhaps worth revisiting, but I admit the taste stopped me in my tracks.

I'll be going to see my urologist in just under 2 hours! I shouldn't be this nervous, it is my health after all, but I just don't like that I will need to force this issue. I even translated my symptoms in Dutch (I'm from the UK, so I tend to converse in English since I'm not exactly up to speed yet with Dutch medical terms etc), just in case he misinterpreted anything I did say in English. My husband will be there to help with any misunderstandings, thankfully. I'll update on what he says once I return home. Fingers crossed! [frown]
cherrypie

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Reply with quote  #7 
I have not considered the Oil of Oregano yet I must admit. I did try the D-Mannose for a while but found no improvement but I may well not have been using it for long enough. Unfortunately about three weeks into this bout my Father-in-law passed away so attention was rather removed from my condition. Now that things are calming down a bit I am trying to concentrate on getting back to some semblance of normality again. I have not managed to work for a couple of months as my symptoms have not allowed it. It has been suggested by other sufferers on the site that although stress does not cause the condition it does aggrevate it so I wonder if the added stress of the family bereavement has made his bout so much worse than the previous ones. Have you noticed whether stress seems to make your symptoms worse? I also find that being on my feet for too long does not help. I wonder if you have noticed that too?
LornaLee

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Reply with quote  #8 
Actually I read many accounts saying that stress was the trigger that brought on the UTI or IC, and with me that may be the case too. Mine started up at the end of August, and while I didn't believe I was stressed at the time, it did come about just as my husband's health improved. He has epilepsy and had been ill with seizures from mid June until mid August. One of the worst periods he's ever had, and is now thankfully been given a new type of medication to stabilize his seizures. So it was just at this point where my husband was recovering that this suddenly started. It could be a coincidence, but I did wonder if that was my breaking point. It had been a terrible couple of months of countless sleepless nights, either because of his seizures or just worrying. I have to remind myself that while I may act calm on the outside (mostly for my husband's sake), that's not necessarily what's brewing on the inside.

We also just found out a few weeks ago that my poor mother-in-law has bone cancer [bawl] Another reason I've been desperate to nip this in  the bud right now. The last thing I want is this trivial little thing I have bothering me, while she needs our help.

In general, stress undoubtedly makes me worse. The days where I worry about IC and go searching hours online for answers are usually the times that I feel at my worst. Whereas I feel at my best when I have just wakened. I'm not sure if it is the same for you? I tend to feel worse as the day goes on, so I think that has something to do with stress, strained muscles etc.

Standing too long could also be a factor, though they say sitting too long as well! It's finding a happy medium that should help. I haven't had such problems with it, but then again, I've been making sure not to do either too much. I have read of other women speaking of having terrible flares after exercising, whether going for a run or whatnot, so there is certainly something to that as well.
cherrypie

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Reply with quote  #9 
Like you my symptoms do get worse as the day goes on in most cases. If I start the day badly it usually means that I am in for a rotten day whereas if I start in a better place I feel as if I am in with a fighting chance. When at work I am on my feet all day and my job is very busy and often stressful. I found fairly early on that work does make my symptoms worse which would suggest that both stress and long periods on your feet do not help.

It sounds that you have had a pretty miserable couple of months just as we have which is almost certainly adding to our symptoms. Like you I want to be able to feel a bit more on top of my symptoms to be able to support my husband following the death of his Dad and to be able to help with the care of his Mum. She is 81 and housebound unless we take her out. The last thing I need at the moment is to be fighting a condition like this at this time, not that I think that it would ever be easy.

Although I am glad to be going back to see the urologist tomorrow I am also pretty nervous for fear of being fobbed off again as I felt that I waslast time. I am 53 and post menapausal and it seems that my condition seems to be blamed on that. The GPs at my local surgery have told me that they can give me no more help, it needs to be dealt with by a speacialist. I feel that if I get no positive help tomorrow I will have nowhere else to go.
LornaLee

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Reply with quote  #10 
I'm just back from the urologist. First of all, he had never heard of a broth culture when I asked for one... Could be a language issue, but he looked it up. He did however accept to test the urine sample I provided, saying I've to call on Monday about it. Not sure if it's going to make a difference. He already commented based on the appearance of the sample, he didn't think an infection was going to be present???? Didn't realize he had microscopic eyesight, but fine.... He said that based on the fact that the sample appeared to be 'clear'. Other than that, he's also set up an appointment for me to get a biopsy to check my bladder. Is that done under local or general anesthesia? I'm not comfortable with having the latter, I actually prefer to be awake for everything.

Overall, he still thinks my symptoms lean towards overactive bladder rather than IC, though he did admit that some of the things I answered in the questionnaire did make him think IC was a possibility, so I'm glad he actually said that. I think it also helped that I wrote out in translation every symptom I've had since this started. He understands English well (I'm from UK, live abroad), but he kept thinking I had urgency, which I don't. So he seemed to have a better grasp of what's going on thanks to that, and thanks to my husband being there to add things.

I'm a bit nervous about having this biopsy just days before I'm meant to travel. I'm really crossing my fingers that despite what he said, an infection will be found. He did agree that since antibiotics did help for a time, it does indicate an infection... Really going back and forth with opinions. So for the time being, we'll need to wait and see. But it certainly did help that I came prepared. Also showed him my food diary, though the more I look at it, I'm starting to doubt if changing my diet did make a difference. I'm going to keep it up longer, just in case though.

cherrypie - have you looked into your hormones with all of this? I'm having my hormones checked since I have PCOS, it could also be contributing to what's going on. I'd been advised by someone else who had my symptoms to have my estrogen levels checked. She had hers cured by getting an estrogen suppository infused with coconut oil.
ModeratorKate

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Reply with quote  #11 
Hello Ladies

I am reading through all your wonderful support and suggestions, to assist each other,

Can I just offer a little advice to please not  insert anything into your very tender parts without medical advice.One can so easily and unintentionally, in desperation, cause further irritation.Also as we always say, what can benefit one person can be devastating for someone else.

See the notes below on the use of this Forum including
Specific medical advice will not be provided & The COBF strongly advises that you consult your GP/Consultant/Urologist for professional advice.

Kind regards
Kate


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LornaLee

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Reply with quote  #12 
Naturally. The woman I mentioned was prescribed her estrogen suppositories by her urologist, they were specially made for her condition by the pharmacist, it's not something you can concoct at home, and even if you could you most certainly shouldn't. Always check with your doctor, which is why I'm seeing 2 different ones at the moment.
cherrypie

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Reply with quote  #13 
I have been reading the results of your visit to your urologist with interest Lornal Lee, especially as I have an appointment at the uroligsts tomorrow. Unfortunatly my husband is working so I am going alone. I was hoping that someone could come with me as your husband did as I think that it is less easy to brush off two people than one. Like you I am going prepared with a list of questions I only hope that I get the chance to ask them. Both previous experiences of the urology departmentof my local hospital have not been great, it has felt that decisions have been made regarding my condition and possible treatment based on my age before I have even been seen.

Like you I will take a urine sample and get it checked as as usual I feel as if I have a UTI. Like you I suspect that it will prove to be negative. I have seen a number of people mention hormone problems as adding to their symptoms. So far no GP or urologist has mentioned any tests just that I could have uretral stenosis as I am post menapausal. A dilation of the bladder was suggested to help with this but following my cycstoscopy no further mention was made. The regestrar doing the test put me on the Betmiga and told me that if it did not work botox injections into the bladder wall, I think, could be made to reduce the sensation. Only problem with this treatment I was told is that there is a 20% chance of ending up with a permanent cathater!

I have no idea which of the two courses will be followed tomorrow.
vallee

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Reply with quote  #14 
I am having Cystistat treatment ,have had a bad couple of weeks don't know what set that off, except the nurse put the catheter in the wrong place and it went out instead of in, and am sure she did not bother to do it again after all it is very expensive so I have been told.
I have the most awful pressure down below and it often feels like somebody is pulling my insides out, sleep is practically non existent from the constant cramping pain.
I wonder if some of you ladies having antibiotics so frequently are developing thrush ? that's what happens with me , plus I was told by my doctor they don't work on IC.
Seeing how many sufferers there are of this condition I am surprised not more research is being done.


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vallee
ModeratorKate

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Reply with quote  #15 
I am so sorry to read of all your ongoing problems,pain and discomfort.

Do read not only through the Forum threads on here,but also the COB website, here for example is some information on Reasearch,
http://www.cobfoundation.org/research.

The COB Advice line is always available 24/7 and as we are only a tiny Office, if you leave your contact details someone WILL contact you.
There is also a Monthly Live telephone day available for anyone to speak directly to our qualified continence Nurse,( you can read more on the website and of course we post each date here on the Forum.)

Also if you become a Member of COB, not only will we send you an informative welcome pack, and on request a special pack for your Doctor to read.You will  receive an info packed quarterly magazine, you will also have access to much, much, more articles, support contacts and detailed leaflets and information.

I hope that somehow, we can help everyone realise they are not alone with this so complicated and dreadful dis-ease.

We can but try and hope to bring some comfort.

Kind regards to you all, and do remember you are not alone, we will always listen and really do understand the pain and discomfort.

Kate








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