I've finally found relief from severe interstitial cystitis

[emilyjean]

I haven't been on here for awhile because I've finally found some relief! I used to check this section on IC remissions a lot because I wanted to read and do what people in remission had done to get there. Now I can finally celebrate cause I figured it out. I'm so grateful to the IC network for all the information they have posted that has helped me solve this difficult puzzle and I'm really grateful to all the IC network users (friends) that have answered so many of my questions that I posted and helped me in so many ways. THank you!

Here's a brief summary of what has helped me to recover from long term excruciating IC pain.

1. Physical Therapy (for all the straining i did while I was in pain.) Internal Myofacial release, ultrasound for blood flow, TENS unit, and soft tissue massage. From a trained women's health P.T. Cyclobenzaprine to help relax the tense muscles.
2. Elmiron, Aloe, Fish oil, a healthy diet, probiotics. All of these things helped calm the inflammation in my bladder. I also drink only water (arrowhead and evian, because they are less acidic then other waters.)
3. Benadryl (I couldn't tolerate hydroxizine for some reason)
4. Lyrica (a nerve medication) and Acupuncture (every 2 weeks) to calm the nerve pain that resulted from long term IC flares.
5. Ice, Ice, and Ice
6. A very bland diet and not a lot of heavy lifting or jarring movements. Lots of support in my shoes when standing for long periods of time.
7. no more straining ever.

This really has been a puzzle for me to figure out. I didn't realize that I was in pain from the inflammation, and the muscles being out of wack, and the nerves being out of wack. So I had to address all these different things. I'm rambling but I want to help others! I've started an IC relief blog, I'm probably not allowed to post it here. So if you're interested in more details about what has finally helped me, just message me, and I'll give you the blog address. Feel free to ask any questions too. I would love to help!

[kadi]

Hooray! Great to hear:)
My PT just put me on an exercise program & I'm really hoping it will help again. (I fell off the exercise wagon this Fall & am starting over now.)

[emilyjean]

Kadi, Good luck with your new exercise routine! and thanks for the kind word! I notice you also have found relief with flexeril (cyclobenzaprine), myofacial release, benadryl, and birth control. It took me 2-3 years to figure what meds worked. This site has been a lifesaver! (and my great doctors) Best of luck to you!

[leelee88]

Emily, this is great to here!! I do believe if you listen to you body like you have done you CAN find some sort of norm with IC..

Also we do have a bloggers section here on the boards.. Just look up at the top and you will see, User CP, Register, Blogs.. You can Blog there.. Just click and and start blogging!! As long as you are not giving direct medical advice and following the same rules as you do here on the boards everything should be fine..

Again glad you found what works for you!

[Briza]

emily
that is great news...I am so happy to hear you have found what works for you! It also took me a few years to to figure out my right combo of meds and what works for which symptom and THAT I found was especially important...as well as avoiding my food triggers, keeping well hydrated, and avoiding physcial and mental stress best I can.
I am happy for your success! I had a 10 month remission in 2008, no meds needed, and tho my symptoms are back here and there they are very well managed so I by no means feel that anything has failed, I am just dealing with it as I have before and best I can. I do feel very lucky myself for having the diligence to keep at it to find what works for me.
Again, thanks for sharing your success story and what has worked for you and I wish you continued relief in the years to come!! Please don't be a stranger, even if it is only to post your success story again some time in the future, so that those who may not read it now will see it when they need it!:flower:

[vm]

Emily - That is wonderful! Thanks for sharing what has worked for you. :)

[ICNDonna]

Thank you for sharing your good news!

:)
Donna

[SharonA]

Sorry I missed this until now. I really am happy that you found what works for you. Thank you so much for sharing your very good news. :):):)

[TexasHoney]

:woohoo: Congtrats, I'm glad you found the right combination of things that work for you. I hope your remission is permanent.

Best Wishes

[georgecoolname]

Yay, congrats! I tried Lyrica, but it caused urine retention for me, so that was out. I get that easily from meds. I'm still working on other methods, but we shall see. The sad thing is, I'm so used to it, that I just phase it out (but that can be hard to do too, yuck).

[dolphingirl31]

Hi, my name is Sherry. I'm new to the group,but not new to IC. I was diagnosed in 1996,when I was 19 years old, I am now 31. I have had about 10 bladder distention/cystoscopies. This was after the instills and various other methods that you all know too well. I have hit a rough patch. Have endo,fibro,IBS,vulvar vestibulitis,IC and migraines.thats about it,LOL!
Have tried all the common meds. Currently on nerontin and bc. Gyn wants me to try amitrypaline again,even though half a 25mg knocks me on my floor. I also have sensitivities to antahistimines.Both my gyn and urologist want me to have PT for pelvic area -----I go on Monday what can I expect.Thanks.Congrats on the combinations working!

[glassd18]

Congrats!!! I wish you continued relief!!! I unfortunately have not been able to tolerate many meds. They either flare my bladder, or do some other sort of weird thing. I would like to try Lyrica. I do have a positive attitude though, which I believe is a must when dealing with this crazy disease. Never give up trying because one day you never know when you will find the right treatment!!

[Shai]

I have just finished up my PT. I was nervous about going but it was great. I have discovered that a lot of my flare are due to stress. Also there is something going on with my hips being alligned properly? A bit confused with this. i was taught how to allign this by real simple exercises. We did a lot of kegels and back and stomach toning exersices. This is to hold everything firmly where it is supposed to be. I have graduated from PT about 3 weeks ago. I am currently having a bad flare and I know it is due to big time stress right now. Some things we can't control as much as we try. I am attempting to get through this by doing all of my relaxation skills and toning stuff. Good luck in PT, I am sure you won't be disappointed.

[jameson77]

Yay!!! I am so happy for you! How wonderful it feels to have relief after a long flare! I am in the process of figuring out what combo of meds works best for me and your post gives me a feeling of encouragement! Way to go!

[aleet7]

Emilyjean,
thank you for sharing with us. You have inspired me in a great way! So far I'm doing much of what you've listed and I feel that I'm getting better. I still do way too much heavy lifting. Thank you for being an inspiration to those of us still finding out what works for us!

Best wishes,
Aleet7

[emilyjean]

emily
that is great news...I am so happy to hear you have found what works for you! It also took me a few years to to figure out my right combo of meds and what works for which symptom and THAT I found was especially important...as well as avoiding my food triggers, keeping well hydrated, and avoiding physcial and mental stress best I can.
I am happy for your success! I had a 10 month remission in 2008, no meds needed, and tho my symptoms are back here and there they are very well managed so I by no means feel that anything has failed, I am just dealing with it as I have before and best I can. I do feel very lucky myself for having the diligence to keep at it to find what works for me.
Again, thanks for sharing your success story and what has worked for you and I wish you continued relief in the years to come!! Please don't be a stranger, even if it is only to post your success story again some time in the future, so that those who may not read it now will see it when they need it!:flower:

Thanks for your post! I appreciate your support! I also drink only water, nothing else and stay well hydrated! I stick to Arrowhead water and evian cause they are less acidic, and obviously it's a good idea to stay away from acidic foods if you're bladder lining is inflamed. I also had to figure out my food triggers. The T.E.N.S. unit helped to calm my pain cycle so I could figure out what was flaring me. My food triggers; any drink that wasn't water, citrus, vinegar, tomatoes, caffeine......

I won't be a stranger, I"ll come here often, I love the support here and i'm determined to help as much as i can because I know how awful IC can be. It almost ruined my life. Thank goodness i found help. Thank goodness for everyones support on this network!

[emilyjean]

georgene, I had a similar situation with other meds. I was on so many. I tried many many many meds before i found a combination that worked for me. I wish you so much luck. i hope you find medicine that works for you. I had to supplement my medicine with other treaments. I hope you find help!

[emilyjean]

Congrats!!! I wish you continued relief!!! I unfortunately have not been able to tolerate many meds. They either flare my bladder, or do some other sort of weird thing. I would like to try Lyrica. I do have a positive attitude though, which I believe is a must when dealing with this crazy disease. Never give up trying because one day you never know when you will find the right treatment!!


Hi, my name is Sherry. I'm new to the group,but not new to IC. I was diagnosed in 1996,when I was 19 years old, I am now 31. I have had about 10 bladder distention/cystoscopies. This was after the instills and various other methods that you all know too well. I have hit a rough patch. Have endo,fibro,IBS,vulvar vestibulitis,IC and migraines.thats about it,LOL!
Have tried all the common meds. Currently on nerontin and bc. Gyn wants me to try amitrypaline again,even though half a 25mg knocks me on my floor. I also have sensitivities to antahistimines.Both my gyn and urologist want me to have PT for pelvic area -----I go on Monday what can I expect.Thanks.Congrats on the combinations working!

I hope you find some relief. It's difficult to have so many overlapping conditions. Many of yours are inflammation related. I had similar overlapping conditions. I know it complicated. but fish oil (or avocados,olive oil omega 3s) were helpful with my inflammation. An elimination diet also helped me figure out what food were aggravating my IBs and other illnesses. I also use natural products cause chemicals worsened my symptoms. I wish you the best. I didn't find success with common meds either, I had to supplement my medication with other treatments (supplements, PT, acupuncture) I wish you the best, I know how frustrating it can be to figure out the IC puzzle!

[emilyjean]

I haven't been on here for awhile because I've finally found some relief! I used to check this section on IC remissions a lot because I wanted to read and do what people in remission had done to get there. Now I can finally celebrate cause I figured it out. I'm so grateful to the IC network for all the information they have posted that has helped me solve this difficult puzzle and I'm really grateful to all the IC network users (friends) that have answered so many of my questions that I posted and helped me in so many ways. THank you!

Here's a brief summary of what has helped me to recover from long term excruciating IC pain.

1. Physical Therapy (for all the straining i did while I was in pain.) Internal Myofacial release, ultrasound for blood flow, TENS unit, and soft tissue massage. From a trained women's health P.T. Cyclobenzaprine to help relax the tense muscles.
2. Elmiron, Aloe, Fish oil, a healthy diet, probiotics. All of these things helped calm the inflammation in my bladder. I also drink only water (arrowhead and evian, because they are less acidic then other waters.)
3. Benadryl (I couldn't tolerate hydroxizine for some reason)
4. Lyrica (a nerve medication) and Acupuncture (every 2 weeks) to calm the nerve pain that resulted from long term IC flares.
5. Ice, Ice, and Ice
6. A very bland diet and not a lot of heavy lifting or jarring movements. Lots of support in my shoes when standing for long periods of time.
7. no more straining ever.

This really has been a puzzle for me to figure out. I didn't realize that I was in pain from the inflammation, and the muscles being out of wack, and the nerves being out of wack. So I had to address all these different things. I'm rambling but I want to help others! I've started an IC relief blog, I'm probably not allowed to post it here. So if you're interested in more details about what has finally helped me, just message me, and I'll give you the blog address. Feel free to ask any questions too. I would love to help!

I was really hopeful that Elmiron would be a solution. After being on it for 8 months I almost gave up on it. Initially I had bad side effects with it but they went away after a few months. Thankfully I hung in there kept taking the Elimrion and worked on keeping my diet bland. Thankfully after a year of taking the expensive medication I saw Elmiron start to work. I think I needed to keep my diet free of acidic foods so that the Elmiron could actually work on my inflammed sensitive bladder. So hopefully this helps anyone that's about to give up on the medication. I know everyone's experience is different.

[Natalie41]

Congratulations:woohoo:

[aleet7]

Emilyjean,
I'm so glad to hear that you've found relief!!!! I pray that we all can be in this place soon!

Best Wishes,
Aleet7

[emilyjean]

I realized that there were a few more things that have helped me find relief that I didn't put in my original post on remission. I'm trying to be as helpful as possible so I'm sorry I didn't write these things initially. Hopefully they help! I was miserable so I tried everything and found some help finally! I'm so grateful for this website and all the awesome advice it has to offer. I wouldn't have found relief without the IC network.

*Arrowhead water is less acidic than tap water. So I mostly drink Arrowhead water.

*Ivory Snow or Dreft laundry detergent and using the 2nd rinse on the wash cycle.

*Prelief before you eat.

*Less chemicals in your life. (Including cleaning supplies, air fresheners, beauty products, and show products.)

*Gentle stretching

*Less lifting.

*Sitting on a cushion. Don't stand for too long. Always have good support in your shoes when standing.

*Avoid long car rides and long flights.

*Gently taking daily walks.

[Kieri]

Good for you! /cheer! So happy you have found relief. Someday I hope to have my own post here!

[emilyjean]

A lot of people have emailed me questions concerning physical therapy. I interviewed my physical therapist over the phone and in person to make sure she new enough about IC before I let her treat me. She works at a women's health clinic. I've personally found that women's health P.T. s know a lot about the pelvic floor muscles.

I had a previous physical therapist that didn't know enough about IC and used me as a 'guinea pig' to figure out what treatments worked best. I didn't like that and I felt like she made my symptoms worse.

My current P.T. had treated IC patients and seen success. She emphasized diet as well as medication and P.T. as all complimenting each other. She saw a combination of these things working for her patients and she was anxious to work with my primary care dr. and acupuncturist for the most optimal treatment. She is also good at reading recent research on IC.

One thing we did discover together is that the tissue massage and internal work she did always flared me initially but after the flare calmed down the work she did left me better than before I saw her. SHe started doing the work in smaller intervals and being less aggressive. She would also put a T.E.N.S on me immediately following treatment as well as ice to quickly calm the flare. Once we figured out this method I progressed much quicker. For awhile I felt like P.T. was making me worse. But when she got less aggressive with treatment and used a T.E.N.S. following treatment I didn't flare as much so I could move forward more quickly. I was really severe so she stopped giving me exercises to do until I was out of my severe pain cycle cause the exercises were only making me worse. Now that I am out of the pain cycle I can do the exercises gently without any problem.

I can now lift 3lb weights without flaring and am gradually increasing what i can lift without too many complications. Hope this helps! Let me know if you have any questions.

The internal work and tissue massage are beneficial because as an IC patient in pain I was straining a lot. It put my muscles out of wake. Diet was contributing to my pain but so were the muscles that were strained.

[sami4]

I too, have had great results with internal physical therapy. Here in Arizona we have several great physical therapists that specialize in internal massage, a few guys have a huge practice of men with "down south" problems.
If someone had told me how much the pelvic floor has to do with IC symptoms I would never have believed it. But most urethral burning, a lot of pain that the bladder gets blamed for, spastic frequency all can be the result of pelvic floor problems. IC and OB patients walk around with tensed pelvic floors trying not to leak urine or to sheild against chronic pain, and they dont even realize it. Sometimes those internal muscles feel like tight violin strings, and cause constant swelling and pain loops. Pain can be referred to lower back, buttocks, ovarian area, bladder, urethra, vagina, lower leg, intestine, its just amazing.
Did you also know that gas, stool, or intestinal spasms will cause bladder pain and spasms due to the pressure on these pelvic nerves some of which run in back of the intestinal area.
Sammi

[aleet7]

Hi Emilyjean,
I had pft for 6 months and found that it did help some but for the most part I was going home in a lot of pain and not able to do anything for a day or two after each session! I spoke to my therapist about her experience and she appeared to be very knowledgeable(sp) about IC. My problem is that I also have a cystocele to add to pfd and IC. I was told by several that if I had very tight muscles that I did not need to do kegals which the therapist had me doing daily! When I had my first pressure point therapy I almost leaped off the table( it was more pain than I'd ever experienced)! I learned to hold my breath to keep from screaming during this part of the therapy! The Tens unit was the next portion of my therapy which helped me a lot.

OK... my question to you is, do you think that kegals should be done on a patient with very tight pelvic floor muscles? Should I learn some time of relaxation exercise for this instead?

Thank you!!!
Aleet7

[emilyjean]

I had the same question! My first PT had me doing kegels right away but I read somewhere that it make things worse. So for my 2nd round of PT with a new physical therapist we spent 6 months on relaxation. After we got me out of my pain flare and my muscles were more relaxed then I could start doing strengthening exercises. But it I did at least 6 months of frequent physical therapy before I could do strengthening exercises. Hope this helps.


Hi Emilyjean,
I had pft for 6 months and found that it did help some but for the most part I was going home in a lot of pain and not able to do anything for a day or two after each session! I spoke to my therapist about her experience and she appeared to be very knowledgeable(sp) about IC. My problem is that I also have a cystocele to add to pfd and IC. I was told by several that if I had very tight muscles that I did not need to do kegals which the therapist had me doing daily! When I had my first pressure point therapy I almost leaped off the table( it was more pain than I'd ever experienced)! I learned to hold my breath to keep from screaming during this part of the therapy! The Tens unit was the next portion of my therapy which helped me a lot.

OK... my question to you is, do you think that kegals should be done on a patient with very tight pelvic floor muscles? Should I learn some time of relaxation exercise for this instead?

Thank you!!!
Aleet7

[aleet7]

Thank you Emilyjean,
that makes a lot of sense to me.

Best Wishes,
Aleet7

[Krisssy]

I haven't been on here for awhile because I've finally found some relief! I used to check this section on IC remissions a lot because I wanted to read and do what people in remission had done to get there. Now I can finally celebrate cause I figured it out. I'm so grateful to the IC network for all the information they have posted that has helped me solve this difficult puzzle and I'm really grateful to all the IC network users (friends) that have answered so many of my questions that I posted and helped me in so many ways. THank you!

Here's a brief summary of what has helped me to recover from long term excruciating IC pain.

1. Physical Therapy (for all the straining i did while I was in pain.) Internal Myofacial release, ultrasound for blood flow, TENS unit, and soft tissue massage. From a trained women's health P.T. Cyclobenzaprine to help relax the tense muscles.
2. Elmiron, Aloe, Fish oil, a healthy diet, probiotics. All of these things helped calm the inflammation in my bladder. I also drink only water (arrowhead and evian, because they are less acidic then other waters.)
3. Benadryl (I couldn't tolerate hydroxizine for some reason)
4. Lyrica (a nerve medication) and Acupuncture (every 2 weeks) to calm the nerve pain that resulted from long term IC flares.
5. Ice, Ice, and Ice
6. A very bland diet and not a lot of heavy lifting or jarring movements. Lots of support in my shoes when standing for long periods of time.
7. no more straining ever.

This really has been a puzzle for me to figure out. I didn't realize that I was in pain from the inflammation, and the muscles being out of wack, and the nerves being out of wack. So I had to address all these different things. I'm rambling but I want to help others! I've started an IC relief blog, I'm probably not allowed to post it here. So if you're interested in more details about what has finally helped me, just message me, and I'll give you the blog address. Feel free to ask any questions too. I would love to help!

I have been on the IC diet for a week and have also been on Probiotics for a week-I am actually feeling better. It usually comes back, so I am almost afraid to say it. thanks for the list-i am going to hang it on my bulletin board to remind me. krisssy

[HeatherP]

Always nice to hear success stories!
I am new to this, and want to try acupuncture.
Do you use ice on your abdomen? I've been using a heating pad!

[Krisssy]

Always nice to hear success stories!
I am new to this, and want to try acupuncture.
Do you use ice on your abdomen? I've been using a heating pad!

I use both. When the pain is very bad, ice helps more. Well, I have been on the IC diet for about three weeks-no pain for 4 days-so we will see. I am afraid to get too excited to quickly. Does anyone know about canned sardines, tuna and salmon? Thanks. Krisssy

[Noraisha]

I haven't been on here for awhile because I've finally found some relief! I used to check this section on IC remissions a lot because I wanted to read and do what people in remission had done to get there. Now I can finally celebrate cause I figured it out. I'm so grateful to the IC network for all the information they have posted that has helped me solve this difficult puzzle and I'm really grateful to all the IC network users (friends) that have answered so many of my questions that I posted and helped me in so many ways. THank you!

Here's a brief summary of what has helped me to recover from long term excruciating IC pain.

1. Physical Therapy (for all the straining i did while I was in pain.) Internal Myofacial release, ultrasound for blood flow, TENS unit, and soft tissue massage. From a trained women's health P.T. Cyclobenzaprine to help relax the tense muscles.
2. Elmiron, Aloe, Fish oil, a healthy diet, probiotics. All of these things helped calm the inflammation in my bladder. I also drink only water (arrowhead and evian, because they are less acidic then other waters.)
3. Benadryl (I couldn't tolerate hydroxizine for some reason)
4. Lyrica (a nerve medication) and Acupuncture (every 2 weeks) to calm the nerve pain that resulted from long term IC flares.
5. Ice, Ice, and Ice
6. A very bland diet and not a lot of heavy lifting or jarring movements. Lots of support in my shoes when standing for long periods of time.
7. no more straining ever.

This really has been a puzzle for me to figure out. I didn't realize that I was in pain from the inflammation, and the muscles being out of wack, and the nerves being out of wack. So I had to address all these different things. I'm rambling but I want to help others! I've started an IC relief blog, I'm probably not allowed to post it here. So if you're interested in more details about what has finally helped me, just message me, and I'll give you the blog address. Feel free to ask any questions too. I would love to help!
Hi there, I am so happy that you have found relive.I too have found relive through cytoprotek, aleo vera, prelief, almond milk, b12,b6.and quarter tea spoon of baking soda every day.The tricks for me is that I din't give up.It took me almost 8 months,before this stuff really works,and now I can eat Thai or Mexcian food once a week,and on week days I stick with IC diet.

[Jenwez]

I'd be interested in finding your blog...can you give the address?