I am getting worse!

[RAS6]

I really need to vent. Normally my postings are upbeat and optimistic, but I am really getting worn out from this disease. I am trying everything I can think of, but feel I am not getting any better. I was diagnosed officially with IC in September, but have been following the IC diet since August (and yes, I read labels, cut out multi vitamins, and follow the diet strictly plus I do not smoke or drink any alcohal). I had a Hydrodistention under general anisthesia Oct. 6, but only had 6 days of relief. I have had 5 rescue treatments(several different cocktails) that only made symptoms worse and gave me incontinence. I have had two DSMO treatments that help, but only for a day or two. I have been on Elmiron now for two months, but am not seeing any difference. If anything I feel I am much worse that when I initially sought help for my symptoms. Now they have progressed- I have pain all the way around my pelvis, not just in one spot anymore, the pain is in my back and groin as well and I have horrible pain in my vagina and burning there as well. In the mean time I going to the Doctor's 2x's a week starting next week for peovic floor thereapy and 1 DSMO treatment a week. I am taking my medicine JUST as prescribed on top of all the other things I have mentioned as well as various self help techniques including using a heating pad almost constantly, hot baths, A&D ointment, water bottle instead of toilet paper, but nothing is helping. I am to the point were the max of Vicadin is doing nothing and I take the max amount of Ditropan a day to deal with painful bladder spasms. I keep the doctor's office up to date and while they are sympathetic they keep telling me I may get worse before I get better. The Doctor isn't even seeing me anymore, he is sending me to a "IC GURU" in another city, but I can't get in untill the 2nd of January. In the meant time I am losing my composure. I am "sick and tired of being sick and tired" to use an awful cliche. I cry every day. I can rarely be intimate with my husband anymore, I am peeing every 30 to 40 minutes, up to 8 times a night and I can barely work a very part time job. Keeping up with the house and two kids is almost impossible and little things like doing laundry or bending over to pick up toys off of the floor send me into horrible bladder spasms.
While I know that the Elmiron may take up to 6 months, I am so discouraged. Like I said, I have tried to be optimistic about all of this. I thought I was over the shock and depression of finding out I had IC and not just a kidney stone. But I feel like I am back to the beginning and I don't know what to do. While I did expereince good days and bad flare days (always related to food) at the begginning, I feel like it has all blurred togetherinto constant pain, frequency, uregency, and very painful urination. I keep telling the nurse I see that I feel relly depressed (not suicidal or anything, I just feel like I could take a break from everything and hibernate until the pain is gone) but they say "it will get better, hang in there" and send me home. I have no problem seeing a thereapist, but the Nurse never recomends it, so I am really doubting myself. I shouldn't, I majored in Psychology and work with mentally ill individuals, but I still wonder if I should seek help. Everyone I know, even dear freinds and family, not to mention Doctor's are down playing all of this, everyone says "it will get better" while inside I feel like screaming! I even wonder sometimes if it is really IC since the Doctor saw no Hunner's Ulcers and nothing seems to help. I know it's silly to think this, I just grasp at straws lately. Ironically enough while I was waiting for a diagnosis, I hoped it would be IC, at least I would have something tangible and I would know I wasn't crazy! Now even with an IC diagnosis, that is exactly what I feel, that I am losing control of everything!
Sorry this is so long, I just need some advise and wanted to let everyone know exactly what has been going on so I am not wasting anyone's time.
Thanks for your help.
-Rachel

[ophelia]

I'm so sorry you are going through such a rough time. I wouldn't let the doctors and nurses downplay what you are going through. I would insist on some help with pain and depression. I wish I could offer more help to you. I hope things get better for you and you find some relief. Take care.

[jjt001]

Has your doctor suggested Elavil? After five solid months of pain I am having lots of good day since starting the Elavil three weeks ago (my pain and discomfort was sporadic until earlier this year, when it became an everyday thing). Not perfect yet, but much, much better. What a relief! I really felt like I was going to be in pain every day for the rest of my life, and these pain-free days have been heaven. I know it doesn't work for everyone, but it's something else you might try while you wait to see if the Elmiron will kick in. I'm sleepy, but it's worth it!!

[ICNDonna]

:grouphug: I wish I could help.

Donna

[Freckles]

Rachel,
I have been where you are many many times in fact I'm there now and I've had this disease for 9 years. I'm so sorry you are in pain. I know how horrible it can be. I will say a prayer for you tonight. I hope that doesn't offend you. I agree with whoever said try the elavil, I think it does help. Unfortunately it has terrible side effects. If I take enough to help with the pain, then I feel very sleepy and disoriented most of the time. I'm now doing the fentanyl patches, cystoprotek, hydroxyzine, elmiron (when I remember), baclofen, elavil, neurontin. I'm probably forgettin something. I feel like a total drug addict and still with all of this medication I feel horrible. Are you on pain meds? If so what are you on? If not, why not? I would not want to live without mine. I know I couldn't take the pain, because even with them the pain is bad. I'm so sorry you are hurting. I wish I could take this pain away from all of us. I wish I could go back to the days when I was healthy. I cry just thinking about those days. I tried the diet and it did nothing for me. I do know that whenever I drink alcohol though I get much worse. My pain and burning never go away but red wine just kills me. I've tried all the medications and nothing has really done too much good. I am now doing the instillations and although it fills wonderful when the medication is in my bladder, I'm not good at cathing so it hurts horribly after I pee it out. Please PM me if you'd like to chat. I know what you're going through. I'm sure we all do. It can be very tough to deal with it all.
Karen

[RAS6]

Thanks everyone!
I talked to the Doctor this afternoon and it went very poorly. He will not call in any pain killlers. He said I need to start getting 2-3 DSMO treatments a week or another Hydrodistention this month (I had one last month and only 5 days of relief) I started naming specific medications I learned about in the IC survival guide and he just blew me off. He said Elavil will make me too tired and even after I told him I feel that is my choice he said he won't prescribe it.
He wants me to start at a pain management clinic, but it would mean 2-3 sessions of at least an hour each per week. Plus the clinic is an hour away. I am trying to get back on my feet and get a full time job. I do not have the time or resources (babysitters, gas $, etc.) to keep this up. His answer to everything seems to be "come in to the office" and of course pay multiple co-pays a week. I have decided that I am calling my GP to talk about my depression and my OB/Gyn tomorrow to try to get a refferal to a different Doctor. I have an appointment to go an IC specialist, but not until January and I can't have him as my regular Docto since he is 2 hours away from me. My Urologist admitted today that this isn't his specialty and he refuses to look into anything I suggest.
The pain is awful tonight and I am having a hard time focusing. I did have a good talk with my husband though and he suggested I try some other things that are on this board. I am going to buy a seat cushion and perhaps look into some herbs or something to hold me over for now.
Thanks for letting me know that I am not crazy!
-Rachel

[L. Thomas]

Even counselors need an objective eye..I am a counselor and I have had times when even I couldn't see light at the end of the tunnel..counseling even helps counselors!

[curlycue]

I hope you feel better soon, I have been there and its awfull.

[donnadb40]

Rachel, Im right there with you!! I'm so tired of pain!! Had my 3rd hydro/cysto 3 weeks ago and everything is SO MUCH WORSE!!! Can't take pain meds b/c they intensify the spasms!! I live in a "po-dunk" town and doctors and resources here are VERY LIMITED!! My doc doesn't have a clue what to do next and of course neither do I:confused: :confused: ... Anyway, Please don't feel alone! Hope you feel better soon!

[amber sevy]

:cussing: I have been where you are in fact i am there again. I wish I could :help: you with more then prayers. I put my IC friends in my prayers all the time because they are the only people who have a clue what I am going threw. just do not let docs get you down. there are some out there that will help you it just takes time to find them:grouphug:

[jjt001]

I would definitely take another look at some of the flare management techniques on this board to get you through, as you suggest. I have had some very awful days, but things do help, and you really have to try a lot of things to see what helps you. For the burning I can take 1/2 to 1 tsp of baking soda in a cup of water and it will really help (even if it's what I think is "vaginal" burning, often it is really my bladder, there's just so close together). Heat is a huge help -- I have just about worn my "bed buddy" (microwavable pack) out in the last several months. Sometimes if things are super bad a hot bath is very helpful. I've also found exercise (if you can tolerate it) to be really helpful, along with lots of water. I've learned most of this from this board! See what works for you, though I know you've already tried a lot of things!

Are you using any type of bladder anesthetic? I liked Prosed the best, but it's not being made right now, so I'm on Urised or Pyridium (I prefer the Urised). I wouldn't have gotten to sleep at all some nights without them. Also, it's funny that the doctor would say Elavil would make you too tired without your even trying it. Yes, I'm a little tired, but it's worth it for the pain relief! I just sleep a little more (hard to lose any personal time when my son is sleeping, but again, worth it!). Also, you never know till you try :-) Good luck, I wish you the best in working with the medical community. I'm lucky to be close enough to Stanford to go there, I went to an IC specialist from the get-go after my PCP brought up the idea of IC, at the suggestion of others on this board. It's made a big difference.

[lanaiwahine]

I am sorry to hear that you are suffering so much needlessly. I have had IC for 13 years. Here is my advise to you after every test, every drug, 2 organ removals, and suicidal pain. This is one of the most misunderstood, undertreated conditions. I have been to Urologists, they are all jerks in my opinion, they diagnose then want nothing further to do with you. I would go see a urogynocologist , sounds like you have vestibular vulvodynia, I have it too. Go see a pain management specialist, they will help you get your pain under control by using a long acting narcotic like MS contin. I would not recommend Oxycontin, I had bad side effects. MS Contin has helped me cope with this but I have had no luck with any of the other pharmaceuticals. 2 weeks ago, I read online here about the chinese herb mixture that had an 82% rate for some improvement. I went to a chinese medicine doctor who put together herbs for me for IC, IBS, Vulvodynia, PFD. Remarkably, they are working and I feel much better, less flu like all the time. I am still on MS Contin but hopefully I can reduce that. Also diazapam is helpful for bladder spasms, urethral spasms, and anti anxiety. Elmiron has a 12% success rate and all the Urologists push it on you hard. GOod luck to you, I hope you try the herbs and have as positive of an effect that i have had.

[braykittie]

I am so sorry that you are in sooooo much pain and angry that your doc is unwilling to work with you. I have been where you are now and would have done just about anything to get rid of the pain. I do have a uro (5 hours sway), but use my GP to if I want to try a new medication. I take in a print out of what I want, which helps her understand where I am coming from and what the med if for.
I quit ditropan fairly early in my disease process because it seemed to make the spasms worse and did not cut down on the frequency, but made urinating difficult. Ask your GP or Gyno for a script of Atarax you can use at night, Soma that will help with spasms, I take cytoprotec and I do feel that is the one drug that got me out of my last 6 month flare. In face my uro was discussing maybe dropping the elmiron, but said you could drop all the drugs, but stay with cytoprotec. Also I use pyridium or an over the counter (I think orzo) something like that and that really helps with painful urination.
I frequently go through the list of medications, over the counter and script,
just to see if there is anything new or maybe there is something that sounds worth trying. I hope you start to feel better, but I also think that will happen when you find a doctor or docs that are willing to prescribe some of the standard medications used for IC.
The best to you and know we are all here for you and know what you are going through.
Braykittie

[ICNDonna]

lanaiwahine: During the trials for elmiron, a 38% success rate was noted. Studies since then vary some from the initial trials, but I haven't seen any as low as 12%.

Donna

[Angelhrt]

I feel soooo badly for you right now and I am so sorry that you are going through all this pain. I think that it is downright awful of your doctor to not put you on pain killers or sleeping pills so that you can finally get some rest from this. If it is any help to you, I got worse before the Elmiron kicked in too. I find that my spasms are not as bad if even at all. I used to have spasm attacks every two weeks for three days, now I have gone two months and no spasms. The Elmiron is finally kicking in for something, but the pelvic pain, vaginal pain, back pain, leg pain, hand pains..yes hand pains. My fingers hurt, are not being helped right now and I finally see my uro in December so I can understand how you feel about finally getting to see someone. My pain specialist is also a oncologist (cancer doc) who understands pain and never hassles me about any medication that I want or need. I told her I couldnt sleep at night because of the pain and just because for some reason my body wakes up and she prescribed me Lunesta and told me to take one of those and a morphine pill before bed. It definitely helps and I take my tramadol probably twice a day. When she was out once before I had to see her partner and he treated me as if I was a drug addict just because I wanted my tramadol increased from 1 mg to 2 mg and I wanted something stronger. He said that he deals with cancer patients everyday who are worse off than me and I should be thankful. The last thing IC patients need is for someone to act as if we are not in pain or that we should be lucky because our disease isnt terminal. But what is worse, knowing that you have cancer and that you will die in 3-6 months or having a disease that you will most likely have to deal with for the rest of your life? I think the later. Today, I am at work and had to get up to go to Walmart because the kids are home today and go and "VOTE" and forgot my Elmiron and my tramadol. I am already tired and having pelvic pain from my "exciting" morning and I am stuck here now with no meds. We are all going through, but you must remember that in order to "get" through something we have to "go" through it first. The Elmiron, I hope, will finally kick in, at least for one of your symptoms if not a few so please, please do not stop taking it. I know it feels like all hope is lost, but it isnt. Keep praying, resting and taking your meds. Do not give up hope. We are all here for you.:pray:

[RAS6]

Hello everyone and thanks for the responses.
I just got back from a very good visit with my GP and I just wanted to cry when I saw all the responses (but for the first time in months happy crying!)
Not only do IC patients understand and are giving suggestions and explanations, but finally a Doctor is listening to me!
I woke up crying from the pain this morning and my husband begged me to go see my GP so I did. She reffered me to a different Urologist who is closer to me and accepts my insurance (which the specialist my regular Uro wants to send me to doesn't) She also gave me Loratab (sp?) with 2 refills. She talked to me about how I was feeling depressed and asked what I wanted to try. I brought up Elavil and Cymbalta. She thought Elavil was a good choice and told me that it makes people tired, but since I can't get back to sleep after my MANY night time potty trips, she thought this side affect wouldn't be a bad thing! I am going to post some questions over on the antidepressent board once I see how I feel after a few days on it.
So, I am trying these along with the Elmiron and ditrupan as needed and tomorrow I call the new Doctors. Even if they are not IC specialists they can let me know where I can go that accepts my insurance. (I live near two large cities and only Doctors in one city are covered by my insurance; it's complicated!)
I feel better now, like when I did when I first got the IC diagnosis: that I have options and hope and if a Doctor says I only have a handful of options I need to talk to someone else.

Thanks everyone for your prayers and messages.
-Rachel

[RAS6]

[QUOTE=jjt001]
Are you using any type of bladder anesthetic? I liked Prosed the best, but it's not being made right now, so I'm on Urised or Pyridium (I prefer the Urised). I wouldn't have gotten to sleep at all some nights without them. QUOTE]


My insurance doesn't cover Prosed (I heard it was off the market right now too) and the free samples I had did little for any of my symptoms. I tried Pyridium plus, but it made me violently sick, even if I took it with a full meal. I couldn't keep anything down for a day, even water and medicine. Also the yellow contacts, urine, and basically everything in contact aspect made it unappealing. What is the Urised? Is it over the counter or do I need a prescription? I was going to try the AZO standard (not the cranberry kind) but I heard it was similar to the Pyridium with yellow everything and stomach upset.

[kjd]

Rachel

I really feel for you and just wanted to let you know you are not alone. i feel exactly the same way as you do now. Infact after reading your post, I could of written it myself.
I am taking Elmiron and only been on it 3 weeks and its started to work. I dont feel sleepy in the slightest and it has definately taken away a little pain. (only a little though as it takes 3-6weeks to get into the system). I too started to think "am i going mad, is this all in my head" and cried all day fearing what my future would hold. Pain forever? Constantly going to the loo 10 times a night and every 20 mins??? This terrified me and still does.
i would seriously consider changing your doctor.
My first doctor wouldnt proscrible Elmiron as he said the side effects can be bad but then I ended up seeing a neurologist who said that this was a load of rubbish and that Elmiron is used widely for IC and most neurolgical conditions and some people stay in it for life. he wrote to my doctor and since then i have been proscribed it. I'm not taking anything else at current. Just wish I could control the freqency alittle more as I am constantly tiered and seem to be run down and get colds and flu once a month which makes me feel even worse

take care xx

[RAS6]

Hi KJD,
Thanks for the response. You mentioned Elmiron, but it sounded like you may have ment Elavil, just wanted to ask. Elmiron coats the bladder, Elavil is an anti depressent used to treat pain and inflammation as well and can cause fatiuge. I just went to see a new Doctor who upped my Elmiron to 300 mg's a day. He also told me to take 30 mg's of Elmiron instead of 20 at bedtime. It does make me tired, but if I take it before 9:00 pm I can still get up at 6:30 and not be exhausted all morning. It seemed to help within a few days. In fact, I skipped it on accident last night and I woke up 7 times to go potty.:toilet: I couldn't believe how well Elavil really helps me, when I take it I am only up once or twice.
Thanks so much for your kind words. I was doing very well the past few weeks and even went to a job interview!
I didn't get the job though:(, but I still felt great throughout the holidays. But between being intimate with my husband and VERY stressed out due to emergencies involving my mentally ill younger sister these past few days, I am flaring bad! I just pray this higher dose of Elmiron will help it be more effective for me.
Thanks again and my prayers are with you too! We need to keep our heating pads close and bottled water even closer when flares get bad!!
-Rachel

[RAS6]

KJD, forgot to mention that I flare when I get colds too. I am going to try Echenacea( sp?) Obviously everything is different for each IC bladder, but the nurse at my Urologist's recommended that b/c she said to avoid vitamin C supplements or multi vitamins right now. She said to be sure it is pure without addatives or soy. Just realized you are having issues staying healthy too and thought I would pass this info on.
-Rachel

[kjd]

Sorry Rachel my mistake, I actually meant I have started taking Elavil. It doesnt cause me any side effects at all.

I am so pleased you are getting back on your feet at last. Try to stay positive however hard it gets and remember you are not alone

xx

[kjd]

Hi Rachel

I am taking enchinea too. Been taking it for 6 months (capsules) but dont think its made much difference to be honest. i am going to keep taking it though as it is suppoed to be very effective.

Good luck in finding a job too rachel you deserve one. I am in a flare today as well and have been for 2 weeks so starting to feel very depressed.

I must have gone to the potty 11 times last night so very tiered today.

take care xx

[RAS6]

KJD, Sorry you feel so bad today. I have had nights like that where I was ready to just get a bed pan! Gross, but much easier that running up and down stairs all night long! What kind of Enchinea are you taking? I just want to find something that is low in bladder irritents. I work part time, but it is in the evenings and VERY stressful (I run a group for kids with emtional and behavioral disorders and we are underfinanced and understaffed!) I am trying to get a teacher assistant position in a local school as it would be during the day and I could spend more time with my kids. The school that is interested in me is where my 6 year old attneds and that would mean nomore buses for her! Plus the teacher would be in charge, not me! I need a break! It's just a matter of waiting untill the local districts have a position. Waiting is so hard to do....
Take care :)
-Rachel

[sami4]

Sounds like you are standing up for yourself. All Uro's are not created equal and if one is hard nosed and not helping seek another. Sounds llike your GP is a good ally and willing to work with you.
As you have read on the board; IC medications are most helpful if taken in a group: Elmiron, Elavil, Anti hystamines such as Atarax, pain pills. Each of these things trys to address a different aspect of this confusing disease.
Also sounds like you may have some pelvic floor problems going on also, which you are looking into.
I found the Elavil which helps with nerve pain to be a Godsend. My doctor lets me go up to a dose that controls my symptoms. I also found out that by cutting a 10 mg Elavil in half, it would help pain and pressure during the day but not make me sleepy. At night I take a whole 25 mg Elavil along with Atarax 30 mg. My new Uro also raised my Elmiron from one three times a day to two three times a day. All these things will probably be familiar to the specialist you are going to see, and if one treatment isnt helping you what ever it is stop it and try another. Not everyone is helped by hydros, not everyone is helped with Elmiron. You do have to take Elmiron at least 6 months and then my Uro raises the dose for another six before he decides it isnt helping. Elavil and Atarax both take a few weeks to really kick in also.
Good luck with your treatment regime and glad you got a good doctor in that woman.
Sammi