IC and the "not-knowing"

[AthenasMommy]

I, like most of you, have been through the gamut of doctor-jumping, misdiagnoses, frustrations, etc. In all actuality, I still have yet to hear the doctor say with conviction "yes, you have Interstitial Cystitis." I know that doctors aren't gods (I'm married to one, although not a urologist), and I know that this disease is a hard one to wrap your mind around. However, I want to be honest with my struggle: my problem is dealing with the every day "not-knowing" of how these symptoms/this possible disease is affecting my life. I feel such anxiety waking up each morning wondering "will this be a 'good bladder' day?" and then the subsequent anxiety that comes with drinking each glass of fluid. For me, the symptoms include pressure and frequent urination. The pressure never lets up. If I press on my bladder, it feels like it's about to burst.

Question: what REALLY helps for the pressure? I've been on Ditropan, Detrol LA and now Enablex. I have GOT to have some hours each day not thinking about my bladder (I have a 7 month old).

Obviously, I'm very frustrated. All these symptoms started when my baby was 1 month old. They did NOT start right after delivery. I breastfed for 4 months and she's 7 months old now and I still have not gotten my period. One doctor I saw, a female urologist who specializes in female pelvic medicine, was convinced that my symptoms were hormone-related and that when my cycles came back, I would start feeling better. After that visit, I did get my levels tested and they were low, but heck it's been 3 months since that and still no change. My cysto/hydro showed the bladder filling to normal capacity and hemorrhages in only 5% of my bladder, which my urologist said could have been caused from the distension itself. He did not say I have an "IC" bladder. However, all the symptoms???? There are no infections at all, either. They already went that route.

Unlike most of you, I don't think I "flare." I feel in a constant flare with random days of freedom (although they are very few and far between). A lot of people say "ask your husband, he's a doctor." He's searched high and low and even though urology isn't his speciality, he's consulted plenty. In all his medical knowledge, he firmly believes (although sometimes I wonder if he just tells me this) that I don't have IC. Then..... the not-knowing. What the heck is wrong with me? Why did I feel normal my whole life and then boom, one month after she was born, this hell?

I feel like the last thing I can try is the Birth Control Pill.... even though I haven't started my period yet. I guess I could just start taking it. Has anyone done this or had a SIMILAR situation?

Thanks all, for letting me vent. It's getting the best of me.

[Preacher-Girl]

Dear Athenasmommy:welcome:

I am so sorry this is happening to you. This has happened at the beginning for most of us. Since I have just recently been tentatively diagnosed (pending a hydro distention) I understand your frustration and discouragement. This is what was suggested to me by my GP and uro/gynecologist who is at one of the most prestigious womens' hospitals in the country.

1. Change your diet completely. Start an elimination diet. Peruse the site and take notes. Speak to women here who have been on the diet for a long time. Find your chief offenders. Coffee and tea are the number one offenders hands down. Are you having those? Tomato products are a very close second. I started a one week flare recently with a mango. Yep. A high potassium stupid little mango. I will never eat another one. Ever.

2.Drink only water and milk for a few days. If that goes well (and it should) you can try some herbal plain mint or chamomile tea. Just a little. Flood your bladder with water to de-acidify your urine. Drink as much as you possibly can. I drink 60 ounces of water+/or mint and chamomile tea per day. I actually pee less than when I drank other stuff or hardly drank.

3.It was suggested to me that I take OTC Uristat. It is working well for me when I flare. My doctor said I could take it as much as I needed (3x per day) when flaring. Speak to your doc though before you take this.

4.I am shocked you don't have a period so late after having your baby. Are you breastfeeding? I am thinking no because you didn't mention it. My periods used to be extremely irregular. A few times I was given something to start my period. I am somewhat surprised your doc didn't suggest this since you are in such agony. When my period is one day late I go crazy...it really throws me for a loop and makes me extremely uncomfortable.

5.There are more drugs besided the OAB drugs you mentioned. Elavil - an antidepressant and Atarax - an antihistamine just to name a few. I have mostly pressure, frequency and this awful symptom - it feels like I have a living thing on the inside of my bladder that is tickling me. It makes me feel as if I am going to jump out of my skin. Elavil stopped a flare in just 3 days. Then I started the diet. I cannot take the side effects of Elavil but for those who can it really works for these symptoms. It is worth a try if your doctor agrees. Elavil will keep you asleep at night. You may not function well enough to feed and change the baby in the middle of the night. Something to talk over with your husband I think. There is also valium. But I find it addictive and would rather not take it. I do take it when I flare - if all else fails. I hate it though.

Ooops! I wrote a novella. I just felt really bad for you because I know how awful you feel and wanted to help. You can PM me anytime.

Angela

[Goldfinch]

Hi, I'm sorry you're suffering and haven't found any answers yet, but it can take a while and it's terribly frustrating!

It sounds like the only meds you have taken are basic antispasmodics usually most effective for OAB. Do you have any leaking or trouble making it to the bathroom on time? When I first began having symptoms I was put on similar meds, and they didn't help me much; if you did have IC, simple antispasmodics won't be good enough.

You say you don't have flares, just the constant symptoms of pressure, discomfort and frequency. Have you tried going on a strict elimination diet? If you've been reading these boards and researching IC you know there is an IC diet, which is, in a nutshell, very low-acid, no soda, no coffee or black teas, no citrus (especially cranberry!), no tomato products, no alcohol, no fermented or aged foods. Even if you don't have IC your bladder is clearly irritated and might benefit from a bland diet. Although people with IC vary in their sensitivity to foods, most of us are sensitive to at least a few foods. It can take up to a month to feel the benefits of changing your diet, but it can help a lot, and it can be diagnostic if it helps.

And unfortunately going to a second or third urologist seems par for the course. I don't have experience with the cysto w/hydrodistention, but the fact that there did not seem to be a lot of hemorrhaging is a really good thing. A good definition of IC is hard to come by. You could make a case that IC is simply a spectrum of symptoms, ranging in severity and nature as well. I wish that was more helpful!

[Briza]

The ladies posted some excellent advice in the above posts and I will just second them on how important the diet is...especially given that it seems your most annoying symptom is pressure that is often a sure sign that something in the diet (often something we take for granted like coffee, tea, orange juice, that we eat or drink daily) may be causing irritation which often presents as pressure. That, along with drinking more than enough water, are by far probably the two most important things to try to relieve symptoms. And doing so usually gives results...sometimes results so good that no meds are necessary.

Another self help thing that I use more often than even my meds is a cold pack on my lower belly. Some prefer heating pad but for me the pressure feeling seems to be most often linked to inflammation in the bladder area and so that is why I think cold therapy works best for me. A good twenty minutes with a cold pack on my belly and/or between my legs is often all it takes to get things to calm down.

And again, like preachergirl said, I find that by drinking MORE water I actually have fewer symptoms and my urgency and frequency reduce greatly because water keeps my urine diluted and therefore less irritating to the bladder...so less pressure, less burning, less frequency and urgency. I can also drink milk and fresh brewed iced chammomile tea (no lemon, no sugar) without incident.

I did not have success with ditropan or dextrol either. That seems the case for many with IC, not all but many.

But definitely the things you DO have control over are what you eat and what you drink and doing self help things that give many much relief such as cold therapy, heating pad, drinking lots of water, and reducing stress as much as possible.

It must be esp difficult having a man in the house who is an MD but does not believe you have IC, which you may not, but I certainly hope that he believes you are having some medical issue that is disrupting your life!! :grouphug: I am sorry for what you are going thru right now, esp with a new baby, you should be enjoying yourself and the baby right now! So not fair! Please know, tho, that majority of us have been in your position to some degree or another wondering what is going on with our bodies and not getting answers from drs, baby or not. So we do understand.
But please try the diet and the other self help stuff because it cannot hurt and can only help!:)

[ICNDonna]

You might ask about having a potassium sensitivity test done. Not every IC bladder shows the typical signs when distended. Are you following an IC diet? If not, I think that would be a good starting point for you.

I hope you feel better soon.

Donna

[jaserk]

:hi:

I too am sorry that you aren't feeling well! I agree with the previous message though, I wasn't accurately diagnosed until that test was done. It was on that day within a half hour doctor's visit that I was told the best words in the world..."It isn't in your head" and diagnosed. Then started the hard work. I am doing the IC diet in it's strictest form and taking Elmiron, Utica-C, Elavil, and rescue instillations. Some days are definately harder than others and since I have IBS also I am really struggling to define when I am having an IC flare as opposed to an IBS flare. I hope that things get better for you soon! Congratulations on your little one!

[VCNJ84]

I am so sorry you are going through this.

I too am in the process of being passed around to a ton of doctors and it sucks. Finally this week a URO Dxed me with Vulvodynia...and told me he possibly thinks I have IC. As someone else mentioned, he did ease my pain a little b/c he said "There is definitely something wrong down there and we will get to the bottom of it, it's not in your head." I think it feels good for a medical person to tell you that, as a lot of us are made fun of along the way by jerky people especially ER workers.

I also really noticed what got this Uro's attention was my voiding journal. He was shocked at how little I peed at a time and how much I pee in a day. Although it is not as high as some others, he said it is way too abnormal for my age and being other wise healthy. Maybe you should do a voiding journal before your next appointment. It seems like when doctors have FACTS in front of them instead of just us complaining about pain, it draws a red flag. I was only told by an NP to do the journal a few days, but I did it for 2 weeks so the doctor could really see this is my everday hell, not just a fluke day or something.

So I still do not know if I have IC, and probably will not do the cysto / hyrdo until the end of May...but as the ladies have said and as this URO said...if even remotely think you have IC or any other bladder condition, the IC diet can only benefit you. If you have pain in the bladder region, the diet will help to lessen the bladder irritation. I have been on it for several weeks now and although I am still in pain...I really have seen some improvement in certain areas of pain and slight reduction in urination (hey even one or two pee trips less a day is something!)

Good luck and I hope you land in the right hands soon and get the help you need.

[ScrabbleMom]

Hi! My symptoms were the same as yours-- with the pressure making me want to just sit on the couch all day. Amitryptiline was my "miracle drug" for taking the symptoms away. I just take 10 mg at bedtime. I have no side effects and my symptoms have disappeared. Good luck!!!!!!!!

Oh, and for me, birth control pills had no effect.

[ScrabbleMom]

Oh, and you might be interested in knowing that my uro has seen people with IC who have perfectly healthy looking bladders. He says that no test will show everyone's IC. From what you said, It's pretty obvious you have IC.

[elamar]

I am much like you. I have had every test under the sun, all coming back negative for IC. I am labeled as "mild IC" just because I have some of the basic symptoms - mostly urgency/frequency sensations. I am coming up on three years now. It's very frustrating when you can't get a real diagnosis and tests never show anything wrong. I just woke up one day with this condition. I was perfectly heathly, only had one bladder infection in my life over 20 years earlier that went away fine with antibiotics. I just woke up and thought it was a uti and it's like it's never gone away since. One class of drugs I would recommend are the antispasmodics that turn your urine blue - urelle, prosed, or utira-c. I personally use the utira-c. I have been on it over 2 years - I ususally just take one per day to try to keep symptoms "manageable". I too have unpredicatable days and am unable to work since I don't think it would be fair to an employer being I feel different every day - usually miserable. Your doctor may have free samples of the above meds for you to try before filling a prescription. Hope this helps. I just got botoxed about 10 days ago in the hopes that I actually might have more of a pfd issue than IC. It's been pretty bad, but the soreness is starting to wear off. It has helped a bit with the urgency sensations. I start seeing a physical therapist the third week of May for assessment and treatment. Good luck to you.

[AthenasMommy]

I don't want to be in denial, but I like to hold on to the fact that my one urologist told me she didn't think it was IC. Maybe I am just truly hypoestrogenic and when my periods resume and cycle normally, this nightmare will go away. I like to think encouraging thoughts and not the negative since I frequently am challenged by my own mind with the negative. I truly don't want this to be it. My heart aches every day for all of us on here. Maybe I am holding on to a small glimmer of hope, but I wanted to share my story about being hypoestrogenic and the effect on my bladder. Maybe there is someone else out there who is hypoestrogenic, or a new mom going through the same thing as me. If so I hope there is some comfort in reading my story. :pray:

[ScrabbleMom]

I'm sorry-- I thought you were frustrated by NOT having a diagnosis. Good luck in finding whatever takes the symptoms away. I highly recommend Amitryptoline (just 10 mg at night along with the diet, and I have almost no symptoms). You know it's not cancer, so just relax and keep trying different things to help the symptoms. :)

[AthenasMommy]

Thanks everyone :-)

[Ja0107]

I was just diagnosed with IC earlier this year when my son was 8 months old.
I want to share my story with you because, just like you, the frequency did not start until I had my son. I also wish that I didn't have to be thinking about my bladder/pain and wondering how it will be affecting my day. Becoming a mom has changed my life completely. It is the best thing that could have happened to me but because of IC, there are some days that I feel I don't give the best of me to my son and my husband.

Prior to having my son, I had a lot of pelvic pain and felt constant pressure. I also had dyspareunia for years. I went to Physical Therapy for 1 year (prior to getting pregnant) for pelvic pain dysfunction and I was also put on Amptryptiline. I did great with this. It wasn't until some months after I had my son that I the pain came back but this time accompanied by the frequency and worse pain. Although I wanted to know what was going on with my body, when I was told I had IC, the now "knowing" what the diagonis was did not make me feel any better.

I stopped breastfeeding last month after my first hydrodistention. The hydrodistention did nothing for me other than cause pain for a whole week. But anyways, just wanted to tell you that the fact that my hormones are "normalizing" (for lack of better words) it's making a huge difference in how I feel. Now that my son is almost 11 months, it is getting to be a bit easier and I am less stressed. The decrease in stress, starting an exercise routine, STOPPING POP AND COFFEE, have made me feel somewhat better. For the pressure, I have learned that hot packs, a massage in the lower pelvic area with warming oil, amptryptyline (took it only for a few days this time), stretching exercises, and not holding it too long have helped.

I would love to go back on amptryptiline but my liver enzymes are elevated. I am still not sure what is going to be the treatment plan in my case but I'm glad that at least I am learning that self-care behaviors to make a difference.
Although you don't know if you have IC, I hope that some of what others have tried on this forum help you (If not, at least you can vent and get support). .....You are not alone. Try not to get discouraged and conintinue to seek answers. Even on the most challanging days, take a look at your daughter and it will give you the strenght to go on. I know if it wasn't for my son and my supportive husband, it would be even more difficult to cope with this. Wish you the best!

[AthenasMommy]

Thank you Ja0107 for your story.... it was really encouraging! :-) Hugs