Looking for a miracle

[MaryS]

Hi,
My name is Mary and I am from Connecticut. In found this site by googling IC. I believe my IC started after I had my first child in 1982. I started feeling urgency, frequency and painful urination. I went to my doctor and he said I had a urinary tract infection. He gave me antibiotics and the med that is supposed to help the burning symptom.It made your urine turn blue. I found that instead of making me better these meds made me worse. So went back to the doctor and I gave him another urine sample and this time it said negative. So now total confusion so then we started sending them out to a Lab.Each time we sent them out they came back saying positive and then the next one negative yet i was still feeling lots of discomfort. We tried lots antibiotics and all increased my symptoms. So he told me to drink lots of water and try to flush out my bladder. This did NOT HELP. So he sent me to a urologist at the hospital in the city. He checked my urine sample and said no urinary tract infection. He asked lots of questions but not once mentioned IC to me. He said he would do a hydro under sedation and also would widen my urethra. AFter the this was done he told me my bladder looked ok and that i could hold 21 ounces of urine with no problem.He told me to go home and warned me that i would be uncomfortable for a few days and also told me to call back if things did not improve in a few weeks . Well the procedure seemed to fix the problem. All symptoms vanished for many years. After my second child was born I started to have more frequency. But just figured it was from having children. So just did not focus to much on it.Life was busy with two kids and two dogs. I mentioned this to my obgyn during a visit and she asked me a few questions. Like did I notice it after eating or drinking things. When I thought about it I said yeah I notice when I eat Italian food or drink soda, tea and coffee. She then gave me some paperwork on IC and said it seems this might be my problem since my urine sample showed no infection. Well I started to cut back on things and realized it was food related. But I just let it go because there was just frequency, no pain or urgency. THen about two years ago I suddenly had frequency,urgency,severe pelvic pain . I had a feeling like I had a basketball in my Nagina and rectom.Horrible pressure. STill afraid to go to dr. I HATE GOING TO DOCTORS. .ut then I had this huge bulge coming out of my vagina. IT came out and went back in.My friend called it the alien when i told her about it.So now i am scared thinking my bladder is falling OUT. Went to urologist and she said she saw absolutely nothing wrong in there. But set me up for ultra sounds and blood work in order to diagnose IC. I asked her for something to help my bladder..ie oab med or anything that might help with urgency, frequency and pain and she said No I am not giving you anything. SHe said you lived this long with this whats another 2 weeks. WITCH with a letter B instead...I also went to gyno for complete exam and also for vaginal ultrasound and she also found nothing. I said WHAT? This lump that comes out was the size of a babys head during labor. Yet no one had an answer..she said perhaps it is hemms or rectal wall etc........went back to uro and was put on Elmiron, toviaz . These meds made my IBS rage out of control and also made me feel sick..headaches,,dizzyness woozy head feeling,nausea and constipation. She got mad an said none of her patients had any of these side effects so without asking me or warning me she just said I AM GIVING you a bladder instillation right now since you cant take meds. I just froze and next thing I knew it was done and she gave me pyrdium. ANd gave me a prescription for DMSO and said that we will try this and see what happens. I did 10 Installation treatments and NO benefit what so ever.Then she is getting mad all over again saying you dont have IC then since what i am doing is not helping. She said perhaps it is food allergies. i said really??? I am allergic to coffee, tea,soda, tomatoes, grapes, watermelon, lemons , peppers, spices, etc and she then shut up and said nothing. During treatments I said it wasnt helping at all an was there something she can give me to keep me confortable while we wait for installations to kick in and she said NO. SDo I had one more treatment and then went home . After going to bathroom I took a HOT SHOWER and while in the shower I had bad stomach cramps , nausea then i started feeling dizzy, my heart started racing and my hands and legs went numb and then i saw blackness and fainted in the showere. THIS HAS NEVER HAPPENED TO ME EVER. I knew it was the treatment and yet when i told her she said no way this was not the dmso and i said yes it was i had googled it and found two patients who had similar symptoms that somehow the dmso got into my system. We argued about it and I told her she was not helping me and she made me beg med treatments. So she said well i have done all i can for you and there is nothing left for me to do for you..in other words she didnt want to treat me because she couldnt figure out what to do with me. I guess I was a complication in her eyes. So , I said there are lots of things you had not tried like atarax, elavil etc..so again she went silent .I guess she was getting really annoyed because i always pointed out things that she had not thought of herself. So she said ok Mary what do you want i said the elavil and atarax and she said PICK ONE MARY. I remembered reading Jills story and said i want atarax as Jill said this was the one med that helped her the most. IT WAS MY MIRACLE PILL. I slept thru the night for the first time the night i Took that first pill. She suddenly left the practice . She bragged how she had been doing this for 12 years and never had any problems with patients prior to ME...then why did she leave and go into dermatology? The pharmacist said that field is a NO BRAINER..lol..anyways, i am struggling to figure this all out.......currently taking elmiron, atarax, elavil, vesicare and uribel. Patiently dealing with horrible side effects and worsening IBS. To afraid to complain to new urologist because I think she made me out to be a problem patient . I can tell she gave him an earful about me. She lacked compassion.......the first visit she made me cry by telling me i will neverget well and will have this forever and will never eat the foods I used to eat. anyways i wrote a book here and havent even told all of my story. This site was lifesaving to me..it gave me hope and determination to get well again..everything i learned was from this site not from the doctors..Donna you are amazing with all the help you give new ic patients.........you should be an IC doctor..you have the patience , calmness ,knowledge and compassion most drs lack. Mary

[MaryS]

Please forgive all typo errors in my first post I am a horrible typist. I also have IBS,TMJ,OCD and my eye doctor mentioned MS as I woke up one morning totally blind in my right eye. I had to go to the hospital every day for one week for IV steroid treatments and also on steroid pills. Regained my vision after two months of meds.I was told I was lucky because some patients never regained their vision.When I told my urologist about all these illnesses she said to me sarcastically are these self diagnosed??? I said no they are all diagnosed by doctors. I went for first test for MS and they saw white spots on the brain which made them think i might have MS. I was at that time dealing with IBS,OCD and IC and feeling overwhelmed so never went back for further MS testing. I figure if i have it symptoms will eventually appear and then i will go back for more tests. I just did not want one more diagnosis at this time. I find it sad that when a doctor gives you a medication then gets mad when you tell them about side effects. I told her the meds were making me severly constipated and she said that was not her field of expertise that I needed to see a gastro. Hell, right on the prescription sheet it says report any and all side effects to your doctor which I did and she gets annoyed. I told her about this forum and she yelled at me telling me I should not read peoples posts. I tried to tell her this was a IC support forum and then she tells me not to read stuff on the internet. Well she isnt helping me much so where do I get answers?? I asked her for the topical elavil because it supposedly has less side effects and she said there is no such thing so then i showed her paperwork from the ICA site describing this med and again she goes silent and hates me yet even more for making her wrong yet again. When she refused to help me with pelvic pain I tried to tell her Dr Moldwin believes in treating this with low dose valium and she said it is very addictive drug and doesnt prescribe it. So I went to my pcp dr and told him what was going on and he gave me the valium.i told him about the urologist and he said she is being very unprofessional. He knows me very well and I HAVE NEVER EVER asked for any type of medication other the IBS meds so he knows if i am asking for this that i am in pain. But the valium caused more constipation and I cut back to half a pill in the evening when the paid was at its worst. I of course told the urologist that i was put on it by my pcp and she got real angry saying he had no right to prescribe this type of med to me. God she is like freakin HITLER. So now with her gone i asked the new urologist about vaginal valium because it is supposed to have less side effects and his answer was I HAVE NEVER HEARD OF THIS. Then he gave me prescription refills and told me to come back in 6 months and then left the room. He didnt even say well let me look into that valium he just dropped the subject . I have never had problems with any of my doctors I love them all. But after reading posts here i realize that there are lots of urologists out there with this type of attitude...sad thing as doctors take oath to heal yet the stress i get from each visit makes me flare like crazy...thx for listening to my rants an raves..

[ICNDonna]

First of all, thank you very much for your comment. I'm happy when I can help.

It sounds like you found a real treasure of a doctor --- it's good that she has chosen a different field of practice. One thing you might do is talk to your primary care physician about a referral to a different urology practice. It can help to have a doctor intercede for you.

Another option is to scroll to the top of this page and click on "Professionals" to see if there's a recommended uro in your area. If there's a support group near you, they also can be an excellent resource for physician recommendations.

Valium suppositories have to be made by a compounding pharmacy so it wouldn't be unusual for a doctor to not be familiar with them.

I hope you can find a urologist you feel comfortable seeing. That can be so very important.

Sending warm healing thoughts,
Donna

[MaryS]

Looking for a Miracle

Hi Donna,
Thanks for the advice. I appreciate it. Yep that women was a she devil. Perhaps she is one of those women that get on better with male patients verses women patients. I did check that professional listing a long time ago and emailed a women who runs the support group. She gave me a name of a dr in the city. But it is in an awful section of the city. What you might call the slums or ghetto.
I dont like to travel on the highway and I wouldnt want to drive there alone either. My husbands job can be unpredictable time wise so i cant depend on him to come with me. That is the only reason I am trying to just tolerate this urologist and just do what i have to do to get by. It is just two visits a year so i will just suck it up and keep going. With my luck i MIGHT go from bad to worse if I left him. At least he is giving meds i want to try to see if i can get more improvement with symptoms. this was the urologist office my pcp recommended.There are 7 urologists in this group. I think they are the only ones in this town and all share one main office. I can understand doctors not knowing about the vaginal valium as it seems that women handled all ic patients,however, he could have said let me look into it right? But he just blew it off which I thought was sad. When i talk to my pcp about Ibs MEDS he gets this little thingy out and looks things up. But I will just see how things go and hope as time goes on we can form some type of patient/dr relationship. I am not annoying person and dont call his office bothering him. I just call for refills and nothing else. I have never complained once to him so I believe he formed an opinion of me based on what that she devil told him. He needs to just judge me for himself and I am hoping in time he will see I am a good person. Hell, I get on great with all my doctors> My pcp first words to me are how goes it mary and when my husband goes for his check ups he asks about me and says when is she coming to see me. He is the kindest dr I have ever met . HE really listens an takes his time with you. My last check was one hour visit. He is in his 60's and i keep telling him not to go and retire on me any time soon. Thx again donna.

[MaryS]

Donna,

I have been reading posts for over a year and i must say the thing that scares me the most is why a bladder wont heal totally and become normal once again.In your case you are such disciplined person when it comes to the ic diet. If you have pampered your bladder for 30 years and never eat foods that cause flares why hasn't your bladder healed and become normal again. I know most of us cheat and eat/drink things that flare us but from what i have read you dont seem the type to cheat on your diet and then suffer afterwards. So this just makes one wonder why it wont heal. If we get cuts on the outside of our bodies they heal with proper care then why wont the bladder do the same if we care for it properly?

[ICNDonna]

I wish I knew. It could be like my diabetes and it's not going away?

I do try to stick with my diet --- mostly because I don't like pain and I KNOW that some foods and drinks are going to cause pain. (I learned the hard way ). If I compare drinking a Coke to putting my hand on a hot stove burner, the decision is easy.

Long ago I came to peace with my two physical challenges (diabetes & IC). It did take several years. I recently added a third challenge and I'm still a little whiny about dry eyes and having to put drops in my eyes, but some diabetics have much more severe eye problems and my eyesight is very good --- and I'll get used to the drops.

I'm very hopeful that one day soon an IC cure will be found.

Warm hugs,
Donna

[Jinny Jean]

I heard that the reason why it doesnt heal is because there is little blood flow in the inner wall of the bladder. When we get a cut or scrape or burn on our skin our body works really hard to create inflammation that is HEALING and that it partly to do with good blood flow beneath the skin. When there is no blood flow it cannot have the same affect as it would on the outside of our bodies.

It sounds like you have been through SO much Mary, I hope you feel better soon!!!

Jenn

[earthlady]

That's an interesting bit of information JinnyJean. I had never thought of that before about the blood flow preventing the bladder from actually healing. How can remissions be explained I wonder? Some for 6 or 8 years at a time? Do certain bladders heal and then get bad again? Do some people have better blood flow than others? I personally know a person who had horrible bladder pain for 8 straight months and then it disappeared and never returned. This condition is so baffling and perplexing no wonder drs. don't know what to do sometimes. I remember when my pain was at it's absolute worst if I went on a long walk the pain went away. I kept telling my dr. I felt it had something to do with getting more blood flow to the pelvic area and she thought I was crazy.

[Jinny Jean]

You are definatley not crazy! When I work, and I waitress at a really busy restaraunt, my bladder dissapears for my entire shift. It has ALOT to do with blood flow in my opinion. I think when remissions DO happen, I really think that the bladder has had enough time to heal somewhat for sure! Then when we come out of remission, something triggers our bladders to become vulnerable again, because they are extra sensitive anyway. When people go in to remisions they ussually eat whatever they like etc ... and forget about IC ... which is natural, but then the bladder can only take so much abuse right? Whether it be hormones or a fall, an infection or food-- it can trigger that sensitivity again.

Jenn

[earthlady]

It's real easy to forget we even have a bladder sensitivity when our symptoms go away and even easier to get lazy about the diet and triggers. I'm still doing well so this was a good reminder for me to keep up my pelvic stretches, diet, and walking.

[MaryS]

Donna,
Kind of sad that this disease has been around for 35 years and yet still no cure. yet I know two people who had cancer and were cured with proper treatment. I guess the medical field does not consider this top priorty since it is not life threatening.Since going on all these ic meds i have developed dry eyes. In the morning i wake up and my eyes burn real bad. IF i cry the tears burn my eyes. During the day my eyes feel dry. dr told me to use soothing eye drops.I cant put them in so husband or daughter does it for me . So yeah I hear you about adjusting. I had IBS and OCD then came IC and now dry eyes to boot .sheesh.

Jinny Jean,
What you said makes damn good sense about the skin healing. Thank you for your well wishes. I have had a rough year between the pain and the witch doctor. Pity they cant find a permanent coating for the bladder instead of the instills which give you relief for short period of time.

EarthLady,
When I sit to long in a chair or in the car i get horrid pelvic pain and walking makes this go away. However when i go for a walk the pelvic pain disappears but then i get this horrible vaginal burning from walking. So it is a trade off in pain and I try to think which is worse..I love to walk and miss that part of my life ..we walked our dogs every day and I had to cut down on the walks. I have a pool and love to do laps yet that creates pelvic pain and makes my bladder flare........no win situation..one of my meds made me gain 20 pounds and i cant exersize to get it off and I dont eat much. Just eat mostly sandwiches so not like i eat alot. Hell i went from 120 pounds to 142 pounds in the past two months.

[MaryS]

I have not experienced a remission YET..still hoping tho. I have not had soda, coffee, tea or ic unfriendly foods in a long time..if i ever get to remission I shall keep in mind how long it took to get there and not do something stupid to put me back in pain.........

Donna do you ever have flairs? You stick to your diet so are you in remission right now? Or do you get flairs from something other then food/beverages?

[ICNDonna]

I'm one who is helped by hydrodistentions; when my symptoms return, I call my uro for an appointment to schedule another one. A hydro will knock down symptoms for me for a year or more. I do flare if I lift too much --- and I always urinate more frequently than other family members. I have said many times I will make my fortune by writing a restroom directory for the State of Oregon.

Donna