Scared Scared Scared

[Phyllis Ann]

I was officially diagnosed with IC yesterday after a year of tests and doctors. My Dr. said that on a scale of 1-10 my cysto and hydro pictures show I am about an 8. I am to start DMSO cocktails in two weeks. She said I was too bad to start on regular medications. I was wondering if anyone has had these and are there side effects? I read about the garlic taste and such but nothing about whether it will hurt..cysto was a killer.. I do have a wonderful Dr. but it seems yesterday she was a little flustered and I did not get all my questions answered. I am feeling really depressed because people at my work do not understand and I am afraid I may lose my job.

One other question. I have to take a 4 hour plane trip next week. Any ideas on how to manage the pain on the plane? I do have some toradol but that only sometimes works.

Please Please somebody tell me, will this be as painful as the cystoscopy? I am so glad to found this group and I look forward to talking with all of you.

Sincerely Sincerely Sincerely

Phyllis

[Pisces228]

My husband is one of the rare men who have this condition. He has had it for about 14 years, but wasn't "officially" diagnosed until he had the cystocopy procedure in 1999. I'm sure he will agree with you about the amount of pain that procedure caused him!

After that procedure, he did the DMSO treatments once a week for six weeks and they appeared to help him at the time. I would say though, that for him it was only a temporary solution. He is currently on Elmiron, the only medication specifically manufactured for IC patients. He taks this three times per day and it really helps bring down the frequency while strengthening the flow of his urination. I think urination, in general, is more difficult for him than for women because men have much longer urethra's to deal with.

Anyway, he also see a pain management doctor every month who prescribes him Oxycontin as a long-lasting pain reliever, and Dilaudid for "breakthru" pain. He also takes Valium for pelvic floor spasms.

I know it sound like a lot, but this is what it takes to get him through the day. I think you will find a lot of other patients on this board who will tell you that they take similar medications. What you much remember is that IC is an individual disease. Everyone's symptoms seem to be different. Some experience frequency far more than pain, while others (like my hubby) deal mainly with the pain. And there are associated conditions for others like irritable bowel syndrome and fibromyalgia. But just because other people have those conditions doesn't mean that you will develop them.

What you need to do is educate yourself on the condition. There are some books that you can purchase that may be very helpful to you and also in educating your coworkers. In the simplest terms, you can explain to your co-workers that IC is a condition where the healthy lining of the bladder erodes, causing severe pain among other issues. Direct them to this website or to the Interstitial Cystitis Website at www.ichelp.org. That site is where I learned how to best go about securing disability benefits for my husband who is unable to work. He now receives SS benefits and stays home to care for our daughter while I work. IC can turn your family life upside down, but if you have a loving support system, you WILL be able to adjust.

I'm sure I'm leaving some information out, but I want to get this off to you. There are a lot of wonderful people on this board who are here to give you support whenever you have questions or are feeling down about your situation. Being able to converse with other people who have his condition has REALLY helped my husband to deal with the ups and downs of life.

Best of luck to you!

[Sarojini]

I have had a total of 10 DMSO instills... at first, they seemed to help me a little, but after a while they quit working. I found them pretty painful... and they really, really got my frequency/urgency of urination kicked into high gear.

However, just because I had bad luck with them does not mean you will -- there are MANY MANY people on the boards have had success with DMSO treatments. You may have great luck! The best thing to do is give it a shot and see what happens. If you find it too painful, or you think it is not helping, you can always stop and pursue other treatment options.

Take care and good luck!! :grouphug:

[ICNDonna]

:welcome: to the IC Network. I'm very glad you found us.

I am one who is helped by DMSO treatments. I do have some advice for you about the instillations. First of all, you'll want to specifically ask that lidocaine or a similar substance be instilled before the DMSO --- it definitely helps with the pain. I started out with eight weekly instillations and found the first few were extremely painful. I had decided that I would stop the DMSO because of the pain when one night I slept all night without even one bathroom trip. That was enough to convince me to continue. I do suggest you ask for pain medications to take for a day or so after each instillation.

I am now on a monthly DMSO schedule and the instillations are usually just what I would call uncomfortable. I don't plan to do a lot on DMSO day.

The good news is that it really helps some people.

You might want to talk with your doctor about starting taking Elmiron. It can take up to six months or more to be effective so you might want to think about starting it soon.

Sending warm healing thoughts,
Donna

[~*~Christine~*~]

Hi Phyllis :hi:
You're also a member at the MSN group. Nice to see you here too : )

[kadi]

Hi Phyllis,
Echoing what Donna said, & adding-- have the nurse use a pediatric catheter. That really helps. I just finished the series of 6 cocktail treatments 2-1/2 weeks ago. I am definitely better. Though not symptom free yet, I'm so much better that it was worth it. Most literature says that you should note improvement before or on the fourth instillation. I got slightly better by then, but felt much better about 1-1/2 weeks after the series was over. I'll be having maintenance treatments once a month. There are different formulas for the cocktail. Mine was DMSO, heparin, marcaine, solu-cortef, & sodium bicarbonate. In terms of pain, check with your doctor & see if it's ok with them if you take Pyridium a few hours before instill, that helped me not have the bad urethral burn I get after catheters. I also took Darvocet to help with pain, but my doctor says that my need for that was rare. Don't care, it worked for me...

Wishing you better days soon!

[theclownster]

Hi there! I just wanted to add my warm welcome to the ICN. I'm sorry to hear that you have the IC diagnosis. It can be challenging, but once you find some meds that help life gets to be easier. You may also want to look into the IC diet listed in the patient handbook.

When I read your post, I was confused with one thing mentioned in your post - That your doctor said that you are too bad to take regular medications. I disagree with that philosophy and would encourage you to explore all your options to ensure that you get the best quality of care. As others have mentioned, IC is individual and symptoms will present themselves differently in each of us. I would like to believe that there is something you can try to help eleviate some of your symptoms in addition to the DMSO treatments. If your doctor is refusing to explore alternatives, I would encourage a second opinion.

When I had my in office cystoscopy it was extremely painful, during and about a whole week afterwards. I had severe pain fo the first day to two days. My doctor gave me samples of pyridium plus that I took which helped. It may even be something that would help you for your plane trip. You may also want to let the flight attendants know of your situation so that you can have ample opportunities to use the bathroom if needed.

Sending encouraging, warm hugs ~
Jennifer

[lindy lou]

I don't have much experience to share yet as I am a 2 week newbie. The only bit of advice is to read, read, read. Knowlege is powerful. Welcome to the most caring and wonderful support group you could imagine. They have kept me sane and hopeful for the last 2 weeks. Linda

[KatyG]

Hi. I'm also a newbie and want to welcome you. I also don't see why you have to wait to take any medications. Elmiron and Elavil will not interfere with the treatments and only get you started sooner rather than later to improvement. I would definitely start right away. My doctor gave me the prescription the day I was diagnosed. I had to mail it away for insurance purposes and couldn't wait to start taking the Elmiron since it takes so long for it to start working. Glad you found us. Katy

[Ginny]

Phyliss Ann,
I have had 32 DMSO treatments and 6 Elmiron treatments. You can not compare the treatments with Cysto's or Hydro. They are much easier which is why they do them in the office and awake. Have you ever had a catheder? That is what it feels like to have the actual treatment. They put the solution in with a catheder and then take it out. You need to keep the solution in for awhile. For me it was 20 mins but I have heard from others that this time could be different depending on the doctor.

After that time you will have to pee the solution out. That stings a little just like it would if you had a catheder in for another reason. What I did was take a pain killer right after the treatment. By the time it worked it helped with the stinging.

My cysto's were a killer also. They got so bad that I stopped letting doctors do them. The treatments were nothing like them. I also never smelled like garlic.

Plane trip - go easy on what you drink the day of the plane ride. Try to stick to water only. I am not familiar with the medication you mentioned but if it is a pain killer I would take it just before going to the airport. Don't tough it out. Take what is needed. I am not saying it will be uncomfortable. We have no way of knowing but why take the chance.

I think you will do fine with DMSO. I have had IC for 20 years and have not lost a job yet.

Ginny

[SharonA]

:hi: :welcome: Phyllis...so glad you found us.

The most important thing I can tell you right now is: there is life with IC. It may take time and a whole lot of work between you and your doctor, but there are treatments out there that can help you with most of the symptoms of IC.

When I was first dxd in August 2001, my pain was unbearable every day. I would wake up in the morning feeling fine and by noon, I was in pain. It would get worse as the day went on until, at night, I was in the fetal position panting like I was giving birth. Then I was prescribed Elavil and things turned aroung almost immediately. Now, I live a pretty normal life. There are even days that I forget I have IC and a bladder. Just like the "good old days" before IC.

Like I said before, there is life with IC. I hope you find the treatments that allow you to live a productive and happy life in spite of IC.

Good luck with your trip. Do drink lots of water to dilute your urine and wash out what might be lurking in your bladder. Watch what you eat and drink. Stay away from anything citrus and acidic. Try to find a product at a drug store called Prelief. It helps to reduce the acid in foods and drinks. I hope you have a seat on the plane that is on an aisle or, at the very least, near a bathroom. If not, try to change seats to one closer so you can feel comfortable knowing that relief is close to you. Do take what pain medication your doctor has prescribed for you.

The best thing is...relax and have fun. Don't stress out over what might be. For me and many others here, stress is a major factor in causing flares. :)

[rumbat]

Welcome – I promise you will find a lot of help & support here.

I started the DMSO treatments a month ago, and have had 4 so far. As you can see from other posts the effects differ vastly. I was terrified my first time, but no, it did not hurt as much as the cystoscopy for me. It did burn really bad while holding it, and I had to have the nurse bring my poor fiancé in to talk me through it. I had a terrible urge to urinate for about 2 hours after & couldn’t leave the bathroom (even though I really didn’t need to urinate). That car ride home from the Uro was terrible!

But – my second treatment they started using Marcaine in the cocktail. It helped so much! I did not spend hours in the bathroom after and the garlic smell was not as strong. It was also easier to hold in the bladder – I recommend asking if they can use that in yours.

So far I have not noticed any improvement, but they say it takes at least 3-4 treatments to tell if it’s helping. You may feel slightly worse for a few days after, I do for about 2 & 1/2 days. As I have more treatments they seem to get easier & my body becomes more used to them so I do not feel as bad. I sit next to a bottle of body spray & take one with me EVERY WHERE for a few days after for the garlic smell. I personally can’t smell it, but others can (I can taste it though, thank goodness for gum)

I also take my cell phone into the Dr. and call a friend to keep my mind off having to pee while holding in the cocktail. It helps =) If you don’t have anyone to call I’d bring a good magazine or book.

Good luck & hope they help you!

[Phyllis Ann]

Thank you all for all of your help and support. I do not feel so all alone. I am home today with much much pain but you have all brightened my spirits!!!!!!

Thank you Thank you Thank you

[kadi]

Yup, echoing the Rumbat! I took Guideposts magazine with me because it's so positive! And I got myself a netflix subscription for the 6 weeks of treatment so I always had a good movie to look forward to when I got home:) A warm shower afterwards really helps to relax.

[kadi]

Oh, and I took peppermint tictacs with me. Though my friends say I didn't stink, I could taste it, so I was never sure if they were just being kind.

[mayray518]

I did DMSO for one year and it helped and then my system became immune to it. This was in 1993 before they put the other cocktail meds in. I believe these help certain ICers also. Hope you continue to get relief.

[Sarojini]

As for stinking, it's very individual... I did emit a distinct odor after DMSO treatments, but My Husband the Weirdo said he was glad the house stank because LIKED the smell. LOL :lmao: He described it as cooked corn with a hint of garlic, and thought that was the greatest as corn is one of his favorite things. He didn't even mind if I climbed all over him the evening of an instill because I didn't feel good and wanted to be held. :)

I even asked people at my former job and they said it didn't smell too bad. However, often I could taste the DMSO. It would always start off 5 minutes after the solution was instilled as some kind of "milky" taste, and then it would progress to a metallic taste, and then finally it would taste garlicky for a few hours. I chewed a lot of gum during my DMSO series, let me tell you... :)

[carla_2004]

Sorry to hear about your diagnosis. Also, that it is so severe.

I do a fair amount of plane travel in my life, so I bring along IC friendly foods, bring water to drink, make sure all my helpful meds are handy- including the prosed ds and the pain meds. I make sure I hit the restroom at every opportunity- whether I need to go or not.

Only one time did I ever run into a problem- it was a coast to coast flight with turbulence, so they kept making announcements to stay seated. I really needed to go and was in alot of pain. I was closer to 1st class, so I headed there- turbulence be d@mned. The male flight attendant snarled at me to use the coach facilities, then told me I shouldn't even be up from my seat. He then announced on the plane PA for everyone to SIT down, plus that failure to obey flight attendants was against FAA regulations. I waited until he was finished, then quietly as possible, politely told him that I had a painful medical condition involving my bladder and that unless I used the restroom NOW, he would be cleaning up after me. He backed down at this point and let me use the restroom :) .

99% of the time, I don't have to tell anyone I have a bladder condition. I hope this is your experience as well when you travel. Oh yes, I also put on a thermacare and wear one during times of travel, too. Also, make sure you have adequate pain management for both travel and for after your installs.

Good luck!! Hugs, Carla

[nola_heart]

Hi, I wanted to welcome you too. My first time on was just the other day. There is so much support here and the ladies are awesome. I was just diagnosed 1 week ago yesterday. Please feel free to PM me anytime. I hope your doing alright and I'm glad that you found this place too. I hope it helps you as much as it's helping me. Take care, Jennifer