Not sure exactly WHAT I have!

[Turtlecat]

Hello everyone! I posted here back on 2004, and after a cytoscopy showed no cancer or anything, I left it at that and the problems went away. Well, I had it again this past January for about three weeks, and now again. Exactly the same as back in 2004. Would really appreciate some feedback on my symptoms and I didn't know where else to post this but here, even though technically I haven't be diagnosed with IC.

I'm 51, post-menopause. My gyno probably wouldn't want me taking any estrogen due to having surgery in January for a thickened endomerium. Estrogen is the major cause of that. I also have IBS-C, for which I take large doses of magnesium each night to avoid constipation.

I'm thinking vulvodynia, IC, or both.

I burn almost all the time, but no pain, except sometimes cramping in my abdomen and back (whether intestinal or uterine, I can't tell). I do not burn any more when I urinate than when I'm not. The area down there is red and sore. I have frequency, but not incontinent, and no urgency. I feel like I have to go as soon as I finish, but I manage to not go for at least two hours. There's no pain, but the constant burning makes be feel like I have to go all the time, and the urethra area is sensitive, too. Also, the area below my abdomen has a burning and odd feel sometimes. I can usually make it through the night without going, and end up voiding between 5 and 8 ounces in the morning. I have no pain or burning with I wake up, even with the full bladder.

Went to gyno and saw nurse practitioner. She noted the redness and said there was a little yeast. She gave me Diflucan, which I've taken, and a steroid-type cream. It burns a bunch when first applied, but then eases the burning quite a bit most of the time. Also gave me Detrol to try, but I haven't yet. UTI dip was negative, but they didn't do a culture. Should they have?

Can you treat yourself for IC without testing for it? I had the cytoscopy in 2004, and I can manage that again just to make sure there's no bladder cancer, but I don't want to do the IC tests. Insurance is one factor, as I don't have any right now. The other is I have major problems whenever I've had general anesthesia.

Any thoughts or suggestions? Does this sound more like IC or vulvodynia---or both? I've just spent the last two hours reading here and the information is amazing!

Thanks...and sorry for the long post.

Pam

[starflight]

I am a man and can say whether it's IC or not you are basically in the same boat IMO. The pain itself is real and very detrimental. Consider what symptoms you have and if they correspond to ICers current knowledge. I too will forgo the tests in favor of self-treatment, especially since they can promise no releif and are usually ignorant twats. Good luck to us both

[Skynard]

Have you tried the IC diet to see if you get ANY relief?

[sissygirl]

Hi Pam--

Seems like taking a urine culture and maybe a vaginal one would be a low-risk low-cost good piece of the puzzle for you. I'm like you in that I don't have an official diagnosis but don't feel bad enough to want to do all the uro tests yet. But something is up down there which is why I am here!

I have had symptoms similar to yours and was given a tentative diagnosis of atrophic vaginitis (low estrogen) by a good GYN. You may want to read up on that. I am on Estrace vaginal cream and I have been taking aloe and using vitamin E suppositories and am feeling better but not perfect.

[VickiB]

Can you treat yourself for IC without testing for it? I had the cytoscopy in 2004, and I can manage that again just to make sure there's no bladder cancer, but I don't want to do the IC tests. Insurance is one factor, as I don't have any right now. The other is I have major problems whenever I've had general anesthesia.
Yes, to some extent you can self-treat IC without a diagnosis. But what if it's not IC you're dealing with? I guess if it were me, I would be more comfortable investigating further with my doctors trying to determine what it is & isn't.

Still, the IC self treatments like diet can't hurt to try. Some find Cystoprotek or Glucosamine to be helpful too.

I have a catastrophic insurance which is like having no insurance at all until something major happens. So my doctor opted to do the potassium sensitivity test rather than a cysto/hydro to check for IC. Perhaps this is a test you might consider.

I hope you get some answers soon. This point you're at, where you know something's wrong but can't seem to find out what, is a rotten place to be!

Vicki

[Turtlecat]

I am a man and can say whether it's IC or not you are basically in the same boat IMO. The pain itself is real and very detrimental. Consider what symptoms you have and if they correspond to ICers current knowledge. I too will forgo the tests in favor of self-treatment, especially since they can promise no releif and are usually ignorant twats. Good luck to us both

This is what I was thinking. Although it's definitely good to know what you have, it's not like they can say, "Oh, yes, you have it, and here's a pill that will make it all better." Even the most drastic treatments don't offer a definite cure. As long as I don't have cancer, which a regular cystoscopy can tell, I don't want to go the route of these painful and expensive tests at this time. Now if my symptoms were a LOT worse, I would probably change my mind on that, though. My main symptom is burning, sometimes severe, in the vaginal/urethra area.

I'm leaning toward VV anyway at this point. Can a person with IC hold 10 ounces in their bladder with no pain whatsoever, no incontinence? That's what was there this morning after 7 hours of sleep; 8 oz yesterday. I woke up with no burning or anything, except I just had to go, and not in a major urgent way either. (I'm measuring just so I know I'm not producing excessive volume, as that could encompass a whole other set of possible medical issues.)

I haven't tried the IC diet yet. I was trying to get together something that could combine the IC and VV diets, but that's tricky.

Sissygirl, since I saw the nurse practitioner last week, I might call and leave a message for my gyn and ask about cultures, possibly lidocaine cream or Estrace, and see what she says. Probably a no on the Estrace, but maybe not enough will be absorbed into the bloodstream to matter. The Vit E and aloe vaginal suppositories sound like a good thing to try!

Thanks everyone for your suggestions and support!

Pam

[statesboro]

I know I can't say for sure what you have got. It could be IC for all I know. I don't know as much about vulvodynia. Besides, I am a dude as well. I do say it is good to be properly diagnosed.(as you have stated) Yep! We don't enjoy having IC, or any chronic illness, but I did get to view a picture of my bladder 12 years ago.(yucky)By the way, you can treat yourself for IC without the testing. Of course, you may not be right. We all know there is no known cure so far. (darn)I don't know how much my bladder was holding as I woke up. Hey! I have not been measuring. Ok. I managed to stay asleep without getting up until then.(even though I was told severe IC) Also, I have never had pain issues with mine. Maybe my IC is not typical, but I still pee enough while awake. Ok, then. You were saying "sorry" for the length of your post, but I have read some with more sentences. Yep! I don't mind. I type more than I plan to sometimes. Hey! We may feel the need to.(like writing a whole chapter) Some people just feel the need to vent as well. (and be somewhat reasonable) That is gonna be all now.

[musiclover]

Maybe you have pelvic floor dysfunction? That could maybe lead to some burning feelings when the muscles/nerves get set off. I think you should try to find a specialist and see what they say. Your chances of successfully treating yourself would increase a whole lot if you had a correct diagnosis. Without it you're grabbing at straws.

[Turtlecat]

Just thought I'd post an update. Had my third visit at gyno's office today. The burning has reduced quite a bit, although some frequency is still there. Although I disagree somewhat, she doesn't believe I have vulvodynia. But, she does say that because the same nerves connect all the areas down there, it can be really hard sometimes to figure out where the problem is actually coming from. I've had minimal burning today and most of yesterday, but really bad last night. It's not connected at all to bladder fullness, voiding, etc. Of course, I could have both IC and vulvo to some degree. Since I have some Detrol LA, she said I could try that, or just wait, since my uro visit is next week.

She believes at this point a urologist visit is in order, so I have one next Tuesday. Since my health insurance will be gone after the end of this month, diagnostic tests I will be able to afford after that are probably slim. For that reason, as well as other reasons, tests such at PST and cyto w/distentiom probably will be out of the question. I have read a lot lately in my research how PST is being used less frequently now because of the pain issue and false results either way; you have it and don't react, or you don't have it and do react. When other things like cancer are ruled out with regular cyto, I don't see the problem with treating based on symptoms. Many urologists feel the same way and I hope this one will be willing to work with me in that regard.

Although my symptoms come and go during the day, except for a few hours Sunday night, my only symptom has been feeling like I have to go all the time. But I don't, usually waiting at least an hour, maybe more. (On Sunday, I would look at my chart and realize I hadn't gone in four hours!) Unfortunately, it's not that good today!

Individual health insurance that would cover anything but catastrophic medical issues is unaffordable because of all the health issues I have (I know because I've had individual health insurance several times over the last five years. About 18 months ago, non-catastrophic insurance with a $5,000 deductible was $800 a month for just me.) I have to have a really high deductible and a non-underwritten plan. Hopefully within the next 60 days I'll at least be able to get that.

Some people have had some frequency relief with prescription and OTC antihistamines, so I'm going to try some OTC antihistamines now. And I'm starting the IC diet in full tomorrow, as I'm currently only avoiding caffeine, soda, and artificial sweeteners. Was going to try to combine the IC and vulvo diet, but decided trying one of them first might make more sense, then maybe combining them if things don't improve.

How fast do people usually see results from a diet change? How fast do antihistamines help, if they're going to?

Thanks, all! :hi:


Pam

[KristyKay]

Pam -

I wanted to respond to your question about the diet. I was diagnosed with mild IC about 6 months ago and am doing great! I was lucky enough to have a great PCP and uro who treat many patients with IC or suspected IC. I started the diet on my first visit (diagnosed based on symptoms and the PST Test) and I will say that I saw a BIG difference in about 3 weeks. I don't take any rx meds for IC, just strictly follow the diet and take a couple of supplements. So far, so good. At the time, my biggest issue was going to the bathroom about 15 times a day. I don't have pain or nocturia. At present, I am down to a more normal 7-8 times daily. I feel great most of the time, but the week leading up to my period is the most challenging time for me. I never had any issues as a child and do not have a history of uti's, no childbirth, nothing. Puzzling to say the least.

I do want to mention that I am going for a follow-up appt soon and I am going to talk to them about PFD. I am not sure if I have it or not, but when I feel uncomfortable, that is where i feel it. I can only describe it as a kind of tightness, almost like pressure. I also think that reading the book "Healing Pelvic Pain" would be a great resource for you also. Taking the advice in that book and doing the at home exercises for relaxation certainly would only do good for you...no matter what your issue ultimately turns out to be.

Whatever course of action you choose, I wish you well and stay positive! It's a bit of a roller-coaster with this IC thing, but at least there are highs to go along with the lows :smile tee

Be Well,
Kristy

[Turtlecat]

Thanks so much, KristyKay! That is very encouraging to hear regarding the diet. I've been very depressed these last few days. Last night it took me four hours to get to sleep because of the super-sensitive feelings I was having all down there. I thought I was going to go mad. My main insane problem is feeling like i have to go to the bathroom all the time. And sometimes the whole area down there just feels hypersensitive, for lack of a better description. I do get vaginal-area burning on and off, but I'd rather have that than the constant urge to go, or this other feeling!

Since I will not have health insurance past Wednesday, I'm hoping the urologist I see on Tuesday might be able to do at least a regular cytoscopy while I still have the insurance (might be too short of a notice, though). After that, I hope he, or some other urologist, will go by my symptoms on how to treat, since I won't have a way to pay for anything other than office appointments and meds (which can be expensive on their own). I keep reading on urologist sites that the PST is less and less a test that uro's perform now because of the pain and that a good percentage of people can have IC and not react to the test, especially if they're in the early stages.

I'll definitely have a list of things to talk with him about, including PNE and PFD, plus the diet and meds.

Pam---who is trying to stay sane, and sometimes doesn't feel like she's doing very wall at it!

[VickiB]

You're in a tough situation, Pam. The cost of medical care today is very depressing and the thought that people are having to go without proper medical care makes me angry! It shouldn't be that way.

Let us know how your appointment turns out for you on Tuesday.

Vicki

[sissygirl]

Sorry you are having a hard time still...hope your uro will do the in-office cysto while you still have insurance.
Did your GYN explain why you had visable redness and soreness down there? If you can get that under control, perhaps the whole area will calm down...

[DonnaA]

I have had symptoms similar to yours and was given a tentative diagnosis of atrophic vaginitis (low estrogen) by a good GYN. ... I am on Estrace vaginal cream and I have been taking aloe and using vitamin E suppositories and am feeling better but not perfect.

How long have you been on Estrace? Do you have to have regular endometrial biopsies? Glad you're feeling better, hope you keep improving. I'm new here, not yet diagnosed, trying to figure out if I have IC and to decide if I want to use estrogen cream or not (I'm 57; post-menopause). Thank you!

[sissygirl]

How long have you been on Estrace? Do you have to have regular endometrial biopsies? Glad you're feeling better, hope you keep improving. I'm new here, not yet diagnosed, trying to figure out if I have IC and to decide if I want to use estrogen cream or not (I'm 57; post-menopause). Thank you!


I have been on Estrace for a couple of months. I am 45, so in peri, also on a low dose bcp so I am getting a regular period. I am feeling a lot better and now trying to cut way down on the cream and using Vitamin E vaginal suppositories which are very soothing.

Check out the thread "Estrogen Cream Might be My Miracle" here and feel free to message me if you like...

[ICNDonna]

You could request a potassium sensitivity test. That would be far less expensive than a hydrodistention and could give you a diagnosis.

Donna

[Turtlecat]

You could request a potassium sensitivity test. That would be far less expensive than a hydrodistention and could give you a diagnosis.

Donna

Thanks, Donna, for the suggestion, but even if I could afford it, it's not something I want to do. PST is not a definitive test (some people don't react, but have IC; some people react and don't have IC), and I'm just not up for the possibility of more pain! :) My urologist didn't suggest either test (and he didn't know I was losing my insurance), and I'm fine with that, especially after research I've done. I've had blood tests, urine tests, urine under a microscope, the in-office cystocopy, antibiotics for a bladder infection just in case it's not showing up, antibiotics for BV, and meds for yeast because a tiny bit was showing up there.

I've been wondering lately that after doing all of this and nothing is showing up or improving, what else could it be (with the symptoms of frequency and occasional burning) but IC?

My urologist gave me information on the IC Diet, Prelief, CystoProtek, and Desert Harvest Aloe Vera, along with Enablex, hydroxicine, and Urelle. Someone here suggested a few things for the external burning, which I've ordered, and I'm ordering the CystoProtek today!

I feel fortunate that my symptoms are not that bad compared to others here--don't know how some people handle it.

EDIT: Forgot to mention the urologist did say although my pelvic floor muscles were not that bad, I did have a few very tight and knotted areas. If I don't see improvement in the current plan of meds and diet by the time I go back in two months, he said he might send me to PT for that.

Pam

[musiclover]

Hi Pam. If you have a few tight or knotted areas in your pelvic floor, it wouldn't hurt to take two hot baths per day. I did that for several weeks and it helped me a lot. It's best to take care of those things so they don't cause increased inflammation, which your bladder wouldn't appreciate I'm sure.

Stretching helps a lot, too. I do the stretches from the book Heal Pelvic Pain.

Anyway, I was diagnosed based solely on symptoms. I had a regular cystoscopy (not under hydro) and it didn't show anything at all. But since I have the symptoms and I don't have bladder cancer, nor a UTI or STDs, they say I have IC. I believe it now because some of these meds do actually help me. Particularly the combo of hydroxyzine/Cystoprotek, although I'm on many other things as well.

Take care and let us know how it goes.