Help I'm scared

[Dayz]

My problem seems so small compared to most of yu wonderful people her but it is driving me mad! For just over a week I have needed the toilet much more than normal. I've seen two drs and had urine tests, both negative. They say it is anxiety related as I do have an anxiety condition. I could accept this as I do panic a lot about health and symptoms. However, it is very irritable and sensitive in that area. As the week has gone on I'm having lower back pain. It never feels that I am completely empty and i feel that I need to go all the time at certain points of the day. I am fine at night, no problems. I did get up and go on waking and then no urgency or anything for three hours until i had a shower then the irritation started and i need the toilet and its been like ever since. I'm very scared about this and uncomfortable. can IC start just like that? I have been treted for numerous infections and thrush this last year and have had similar symptoms to this at the time. Please help - I feel completely at a loss

[dg2901]

Did your Dr send the urine sample out for culture or just do an in-office dipstick test? A culture will rule out infection unlike the simple dipstick test. So thats where I'd start if I were you-call the Dr back and ask for the sample to be sent out/cultured. Should it come back contaminated then the proper antibiotics can be given and with any luck you'll be feeling better within a day or so. Should the sample come back clean then you could be examined more thoroughly.

Regarding your question as to whether IC symptoms can start suddenly--the answer is yes.

There are numerous other medical problems that can cause urinary symptoms. Even some GYN problems can cause uro problems---have you been examined recently by your gynecologist? If not, that might be a good idea.

Good luck to you
Diana

[Dayz]

Thanks for coming back so soon. They only did a sticks test at surgery - nothing in it. I have seen gyno last year for infections, erosion and had an interal scan for these infections etc, all is clear. This has just been this week. I know that Candida can cause simpilar symptoms. I'm just frustrated by the pain, inconvenience and worried that this is the rest of my life. My current anxiety state is not helping either, and probably making me more unable to cope with this.

[Sheltie Lover]

Hi Dayz, Sorry to hear about your issues. I have similar problems but mine started from a UTI. I will be seeing a gyn to see what might be causing this. I definately recommend that you see a Uro so they can do some test and rule out anything serious. I had some ultrasounds and urodynamics don so I am clear of anything serious such as cancer, etc.
It is very true that gynecological issues can cause urethra issues. Try to get that checked out as well.

When I first started this journey with my bladder issues back in Aug, I had really bad anxiety about the whole thing which does make it worse. You can always try immipramine which is an antidepressant which should help with the anxiety and some bladder issues. Your doctor will have to maker that call. i chose not to take them because it just was not right for me. I chose t take yoga to relax myself and the IC network helps to. You will always have cating people to talk to hear. PM me if you ever need to talk and please keep us posted on your issues.
Hugs,
Amy

[traceann]

Hey there! Dayz and welcome to the boards! Both the ladies gave you great advice already I just wanted to share (for whatever it's worth, lol) what I just happened to read here on the site today while catching up on my "IC news" lol. They found that the same chemical (hormone etc) that's released in the brain due to stress is also released in the bladder. I have always noticed when I am nerved up about something or stressed or scared - I have to pee more, most likely due to that very reason. Even before IC! So, at least I know I am not too crazy!! ;)

[Dayz]

Thank you :angel: I appreciate that support. Symptoms have eased off a little now at least but it just aches now. I think the fact is I'm making it worse by not going when i really want to, trying to 'hold out' so that i can at leaset last a few hours - don't know if this does more harm than good, especially if my body is irritated. Very tired now - this is definitely taking it out of me - literally ;) God bless

[July]

Anxiety/panic and stress definately makes my IC symptoms worse. I think anxiety can pretty much exacerbate any physical illness. So, working on relaxation may help out. I am currently seeking counseling because my anxiety is so high right now. I'll keep you in my prayers. Hope you feel better soon!

[Dayz]

Well I went to the dr, again, and there was still no joy. The buring and pain I'm feeling they could not find any sign of infection arghh. She did say that the fact that I feel irritation burning sensations will make me want to use the toilet more than normal. She firmly believes that it is all anxiety related and that when I have overcome my anxiety and the stress is gone I shall be OK again - me I'm just scared its not but I want to believe it is. I have tried to relax today - very difficult - anxiety very high and afraid now that I have vulvodynia and that is not curable and I've read such awful things that I'm beginning to wonder if I'll be able to cope and will my life be of any quality at all. As you can guess I'm feeling a little depressed too. I am trying to hang on to the possibility that it is strss/anxiety related as it started at the same time and my health anxiety is always bad. Anyway not a good day really. God bless :cussing:

[Sheltie Lover]

I know the feeling. had a bad visit with a doc myself yesterday! If you think it couldf be soemthing else, please see another doc. tahst the only way to get through this. Dont be scared. i know its hard but even if it is vulv, the sooner you get a diagnosis, the sooner you can learn how to treat it. this is the owrst partr, just not know what the problem is. try :kissing: to keep your chin up!

[Dayz]

Thanks Sheltie lover! Hope you get a diagnosis soon too. There is just so much out there to get through isn't there. In UK it is so difficult as everything has long waiting lists!!! I have found some info on vulv and how to go about easing attacks so may try it just in case. My dr said this is not IC - who knows. Must get on with my life - i have a hubby and daughter to think of as well as two cute bunnies and 4 fish.
God bless :bunny:

[Sheltie Lover]

The best defense it to educate yourself because unfortunately there are few doctors who do their job and help educate. they are really good at saying "I dont know what to tell you". We all have to have our little miniature medical degrees. My friend was diagnosed with vulvadynia and was put on a certain med and told to stay on a low oxolate diet. Just some extra info for you! She is also supposed to take a particular calcium pill too.

[Dayz]

Thanks - I'm just in major panic mode. Seen a counsellor today, off work at the moment too - teaching is very difficult when you need the toilet every hour or so. Don't know where to try next and feeling rather worried. Hope you have a good day. Its v hot here in UK and beautiful weather, just wish I felt like enjoying it. God bless :bunny:

[July]

Hi Dayz,
You might want to read a book called "The Vulvodynia Survival Book". It has lots of useful tips. You may want to also consider pelvic floor therapy with a physical therapist. I have IC and vulvodynia, and it helped me. While it is important to get educated about these conditions, one great piece of advise I once received was to not overload on researching, as not only can you come across some scary stuff, but it can be overwhelming and anxiety provoking. One step at a time, I guess. Plus, there is a lot of inaccurate information.

One thing to remember is that just because an illness is labeled, "incurable", does not mean that it is "untreatable". Both IC and vulvodynia have many treatments that lessen symptoms and even put some people in remission, and you can maintain your quality of life. Symptoms may flare sometimes, but once you know what treatments work for you, you are better able to treat them. It can take a little time, but you will find treatments that help you. Here on the boards, there are many people who do not post anymore because they are feeling better with treatment. :) Hope this helps!

Here are some things you may want to try to ease the irriation: Cetaphil soap, All Free and Clear Laundry detergent (wash underwear seperately and double rinse, white cotton underwear, Charmin ultra toilet paper, sleep without underwear (surprisingly helps a lot). :)

I'm beginning counseling for anxiety next week. I'm hoping it helps. I understand how anxiety can really take a physical toll on a person.

Prayers that you will have peace and comfort and healing,
July

[Sheltie Lover]

I have also been seeing a councilor since October. It is wonderful to talk to someone. I found my lady off of www.psycology.com You can do a detailed search and find someone helpful.

I was wondering what are some signs of vulvadynia and who should I see for a diagnosis? I have been to 1 uro, 1 urogyno, and a gyn. None of them have mentioed that yet my urethral discomfort that is off and on throughout the month go unexplained? Any thoughts?

[Dayz]

Thank you for all the info and support. Just had the worst couple of hours - in pain and needing the toilet every half hour. i just don't know what to do next. My dausghter saw me in distress and I feel so helpless. How can I get relief from the symptoms if no-one will even diagnose - I feel very frustrated and desperate - depression is setting in at the moment. Thank you July for the positive input, it made me feel that there is hope if only I could get a diagnosis. My GP said that this isn't IC as there was no blood in my urine - is this always the case? :headbang:

[Sheltie Lover]

Have you seen a Uro or gotten a refferal? Thats is definately where I would start. You dont have to have blood in your urine for it not to be IC or something else.
Sometimes when I have the burning I take a warm bath or freeze a bottle of water and just sit with it between your legs. That might help a bit. i would insist on seeing a specialist in this department before your convinced its all anxiety. I hope you feel better soon. Until then, I know its hard, but try torelax. Did your doc give you anything for the anxiety?

[Dayz]

I have not been referred but i am going to try and push for one to the gyno and urologist as I feel i need some help in finding out what's wrong. I am taking diazepam at the moment very little as i don't like it but i may go back and get an anti-depressant they just take a long time to kick in! I am doing a lot of research as to what I can do, take etc to alleiviate symptoms even though I haven't been diagnosed it may just help - I've got to do something. I'm off to bed now - very tired, emotional day :bunny:

[traceann]

Hey there Dayz, have you tried some home remedies to make yourself more comfortable? I do know that when you are needing the bathroom so frequently how stressed out it can make you. I remember my worst night was every 15 min all night long...ugh it was horrible.

It could be stress related, but it might not be as well, have you thought about seeing a urologist? I have to say I too thought my troubles were stress/anxiety related, but unfortunately they weren't - but they are postively affected by stress/anxiety, makes it worse. And it's my understanding you don't have to have blood in your urine to make it positive for IC. Mine was always clear when I didn't have a UTI.

There were lots of self-helps I learned from the gang at the ICN. Here's what I can remember:

Heating pad/Thermacare Heat Patches: I now have a heating pad with an auto shut-off so if I do fall asleep with it one, I am safe. The heat patches are wonderful for when your heating pad isn't feasible - like for travel or sleeping. Heat was my number one friend for my bladder!!!!

Cold pack/frozen water bottle: For the vulvar pain and for my urethral spasms cold worked the best. Depending on what was going on all urethral or all clitoral/vulvar etc, I would use either one. The frozen water bottle is fantastic for putting between your legs, it fits perfectly. (I discovered this trick on a horrible car trip, that the water my hubby bought me, when I held it between my legs my urethra calmed right down!) I would even half sit on it -- straddling it. It helped sooo much!!

Prelief tablets: These are tablets you can buy in your drugstore or online that help to reduce the acid in foods. You take them right before you eat. They have helped me to expand my diet and tolerate some things I wouldn't normally be able to tolerate. I get them at my local Rite Aid, I spend anywhere between 8-10 dollars on them, and that's for a bottle of 120. It's just basically a calcium supplement, but it's wonderful.

Baking Soda/Tums: If I had eaten something that did not like me, I would drink 1/2 -1 tsp of baking soda in a big glass of water. Tastes yucky but helps neutralize things, even used to help with my urethral spasms. But be careful with it if you have salt-sensitive health issues... Also eating a couple of Tums can help as well. I usually use that trick for travel than the baking soda in water.
Uristat/AZO Standard: These two are over-the-counter Pyridium. Basically an analgesic for your bladder/urethra. It numbs things up quite nicely, and they had helped me immensely with urgency and frequency problems! But, they are for short-term use only, it's not a regular every day thing. I think the directions say not to use more than 2 days in a row. I talked to my doctor and got the go ahead to dose more than it stated, but you do have to talk to your doc if you want to use it more often. Apparently from what I have read and understand, is, it can build up in your kidneys and cause problems. And it also makes your urine orange, so make sure you have plenty of panty liners, because any little drip and you have stains!! LOL

Voiding/Pain Diary: This was a HUGE tool for me. I recorded everything in a little spiral-bound notebook. Every time I peed - approximately how much I went and rated any discomfort/pain on the pain scale I found on the site. I logged in what day I was in my cycle as hormones can affect your bladder -- I found I always have some troubles around ovulation and right before my period. So, it was nice to be able to flip through when I couldn't figure out why my bladder might be acting up and see that it was most likely the normal hormonal kind of thing going on. I noted when my husband and I had sex, etc. Everything -- I logged everything. It was a great tool to have to turn to, and a great gauge of my progress. I would have never realized I was voiding 30+ times a day, and 3 times at least at night. With my diary I could see the numbers start to fall.... And those I would have not recognized either, since it was usually a decrease of one or two times a day.... Now, I am at maybe up to 10 times a day, and mostly because I constantly am drinking something, usually water water and more water, lol.

I too thought I was dealing with vulvodynia. Still not sure if it was or not, my IC was giving me all the vulvar pain I was dealing with. The ache was horrible as was the itching, it was maddening. As I got my bladder under control - those things were the first to go away. I really had a great relationship with my frozen water bottles, lol!!!

Hope you get some answers soon!!!

Hugs!

[July]

What a WONDERFUL, INFORMATIVE, COMPREHENSIVE post, Traceann!!!

[di52]

Can you go to a urologist and get diagnosed? I already knew I had IC before I went for the cystoscopy. I was not surprised to hear it. Just starting the IC diet to see if it helps might be a good idea. Hope you get some answers soon.

Dianne

[Dayz]

Thank you traceann for your informative reply - I will try all of that if I can. feeling a bit more positive today. Off to the dr again - to get signed off from work due to stress - the stress was there before this started happening but this has just made things 10 times worse. Last night was bad - at one point thought I would never be normal again, and didn't want to go on. I am going to try and get the dr to refer me to a gyno/uro -we can't just go and see one here it is not that easy - wish it was and it can take a long time to get seen, that's why i needed some info on self-help as it may be a while before I get seen let alone disgnosed with anything and start any treatment. Thanks a bunch for the support you offer here. :bunny:
Just an update - just returned from dr - another urine test has come back positive for infection - it took one week and three tries later they find something. I am now on antibiotics and hopefully that will sort things out. Been using the cold water wow that helps a lot. Dr doesn't think its vulvodynia but just aggravation from going to the toilet so much. She said that some infections take time to show up so here's hoping that's all it is. Wil keep you up dated and you are in my prayers , here's to a better day!! :bunny:

[traceann]

Thanks July :) and you're welcom Dayz! Oh (I know it sounds crazy,lol) I hope it's just a UTI, that way the right antibiotics and you are good to go!!! Yeah, most of ICers are always happy to hear it's a UTI and the pain can go away after a round of antibiotics!
;)

Keep us posted and feel better soon!!!

Hugs!

[Dayz]

Thank you for all the support - I have had one antibiotic tablet when I got back from the drs - I am so thankful that she did another urine test, she had to make me as i really didn't think it was worth it. Anyway, one tablet and over six hours later the pain has gone, I am not as irritated or burning as I was and I have managed to go 2-3hrs between going to the toilet, without feeling urgency. Using the heat pads like crazy for a while as the back pain was really bad but that has eased and so has the pressure in my bladder. I can't wait to take the next one! Here's hoping that it continues - I am trying to avoid bladder irritating foods as i want to eat again - didn't eat much for a couple of days and drinking loads of water only today. The dr was brilliant and really listened. Your in my prayers with thanks :bunny:

[di52]

That's great news...maybe you just have a UTI. What antibiotic did the dr. give you?
Let us know how you are doing....wishing you the best.

Dianne

[Sheltie Lover]

So glad for you Dayz. Make sure you really watch your diet during this time. I did not have a doctor that educated me with my UTI and I think all the stuff I was eating and drinking caused me some additional problems. Just take it easy and let us know how you feel! We are here when you need us! :)

[Dayz]

Hi all, the antibiotic is Themperim I think - 2x200mg a day. Dr say I'll feel the benefits in 48hrs - felt better earlier but now a little panicky again, my anxiety is kicking in and that's not helping. The burning and irritation is not as bad but still there and I've just needed the toilet twice - but I am drinking a lot more and i have eaten today, must stay focussed on the fact that I will get better. Difficult when you have health anxiety isn't it but at least i've found out the problem. Thanks for the support you've helped me through this! take care. :grouphug: :bunny:

[Dayz]

Hi a mixed day today - burning comes and goes, urgency and frequency comes and goes. Backaches and abdominal pain definitely improved. Started to eat again, have lost 5lbs due to not eating! I just wish I could start to feel normal again - I know that it will take time and i do feel a little better, I suppose I have to be patient and realise that I've had the infection for two weeks and I'm not going to feel normal in 2 days! The sample has been sent off to the lab, don't know if that's to check what the exact infection is, I've been given a general UTI antibiotic, may have to have a more specific one if they find out the exact nature of the bacteria. I think my main problem is that i am constantly thinking about this, when I'm doind other things, even though I still feel a little uncomfortable I don't notice so much - I am constantly watching the clock etc. I have to stop that and concentrate on others. Thanks for the continued e:mails, I'll keep in touch, just to let you know how it's going but I'm also concerned for you too - your in my prayers.

Well day 3 of antiobiotics and hoping I would feel better but I still feel on fire down below, ok until I shower then wham!! Everything irritates, starting to panic that this is not just an infection. Urgency ok but frequency still unpredictable - very confused and scared right now which is not helping my recovery! :loco:

[Dayz]

Hi everyone, oh dear not a good evening, I am on fire and very irritated, needing the toilet every 10 mins or so. Antibiotics are not working will be going back to GP in the morning.

[Sheltie Lover]

Dayz, Have you tried any of the methods to relieve the discomfort yet? This might be the time to try a warm bath with some baking soday and then addthat ice pack or frozen water bottle afterwards. Hope you start feeling better soon!
Amy

[di52]

Hi,
I'm sorry you are not doing well. Did you try a heating pad on your tummy? that really helps me alot. The baking soda will help you too. I think it's a teaspoon in a glass of water...but you may want to check with others first on that one. OH and if you have a valium or xanax that would help too.

HOpe you feel better soon!

[Dayz]

I have tried the valium, just gonna take another one. Its the not knowing is the worst. The burning is soo bad now and I'm leaking too at times. The dr has done another urine test. Really scared now! To top it all of my husband has been in a car accident today. Just want to stop the world at the moment.

[Dayz]

Well day 4 of antibiotics and i still feel yuck at times. The burning is bad - not in the night and i don't need the toilet much then, but in the morning after i go then wham. Dr did another urine test to see if the infection has cleared also took a swab. Have tried putting an emulsifying cream on the area and the burning has eased off. Still needing the toilet more than i want at times and also feel like I'm leaking a little too - don't know if that's normal with a UTI. Hubby is in hospital at the moment with some broken bones and lots of bruising - the car was a 'write off' - miracle he wasn't hurt more. What a day!!!!!

[vivig14]

i never heard of needing to see blood in urine to diagnose IC. get a second opinion.

[Sheltie Lover]

Dayz, Good to see you have a doctor that is at least trying to help. I hope they figure out what is going on. I know that is the worst part for all of us that just dont know. I am still pushing for you to se a Uro if they can no longer help. Best Wishes!
Amy

[Dayz]

Hi well last day of antiobiotics and my back pain is back. waiting the results from the tests tomorrow. Still need the toilet but since using the emulsifying cream the burning has gone. I'm not in pain really just feel a pressure in my bladder then i have to go its horrible!!
Even worse the doctor rang that after cultures were grown no sign of infection so we're back to square one! Still wanting the toilet, can't go out of the house for fear of not being able to get to the toilet or leaking, can't even go to the hospital to see my husband - feel a failure. Very low. have asked thr Dr to refer me to a urologist to try and get to the bottom of this frequency/urgency thing. Feel depressed and taking valium now - husband not here either - how bad can it get!! :help: