Interstitial Cystitis

[livingwith]

It took me three years to get a diagnosis. I went from doctor to doctor.From specialist to specialist. I have changed the way I eat, having small meals and following the IC guidlines. I stopped smoking. In short I made all the changes I could and have had absolutly no results. I have tried drinking aloe and taken the homeopathic approach, I have completed my 7th bladder instillation and now I’m waiting for the hydrodystention.
IC is a terribly painful disease. The longer you go on with th...Read the full article

[sheda59]

I know exactly how you feel. I was 43 and the pain, leakage began, my gynecologist sent me to a Urologist.It was so bad I would literally go to my knees and craw to the bathroom. The Urologist found my bladder had dropped so he placed it in a hammock. For 2 years I was almost pain free. Then the pain returned & I was sure that the hammock had fallen. My Gynecologist examined me and assured me that the hammock was in tack. But when he pressed on my right side I came off the table the pain was excruciating. He sent me for an MRI; it showed a small stone in the left kidney & a tumor on the right. So he sent me back to my Urologist, he put me through a battery of test, each one he said looked good, but he was feeding me Percocet like candy. I went 6 months with hearing the entire test are fine. I finally went back to my Gynecologist and told him the pain was getting worse half the time the Urologist wouldn’t help even talk to me, I would go two weeks for results that were read in 48 hours I wanted a new Doctor. He recommended the one I have, I had all the transcripts sent to him, he took one look at the results & asked me what this Doctor said, and I told him. He said no these test are not fine, I want to do a Cyst copy Hydrostention on my Bladder. Within two weeks I was diagnosed with IC. He has continued trying everything to help me, I have done Bladder Cocktails 2 years in a row, second year it was for 6 months and they added my medication Elm iron. I see a therapist & psychiatrist for depression medication, but I jump from depression to just not happy. They can’t do anything about it, at times it seems to control my emotions then the pain slowly increases & I am mean or crying. I was active in the Church & community & slowly it ended. I get depressed thinking about it I loved working with the children. I have had so many Cystoscopy’s & Hydroestentions I lost count. I had to have the hammock removed, it caused my bladder to stop moving, I had the Interstym in place for a year and it wasn’t working, and it began sending electrical shocks down my legs and I would collapse my toes literally curled. I had the Botox shots both times, and I owe the hospital $6,000 because the insurance wouldn’t pay it. If it is out there for treatment I have had it. I am on the Elmiron with Percocet on the side. We have been called 12 different Pain Management Clinics along with attempting to find a Doctor to put a pain pump in, the minute my Doctor or I say the condition is IC they won’t treat me, I have nowhere to turn, but take try Tylenol until it gets so bad I have to resort to my Percocet. Now I either have diarrhea or nausea, due to the severe stages of my IC. I either lose weight or gain. I am far from active. I don’t garden anymore do crafts, & sadly no one noticed I was gone when I finally couldn’t sit at church anymore they didn’t care. Days I have faith but days I just cry. My husband is the only support I have the only one that takes me when I can’t drive to the Doctor, he is there for me. I am impossible when I am in pain and my blood pressure sky rockets. I feel useless, people will occasionally see me out, but never without my husband driving and say she's ok, but they don’t see me laying on the couch with the tears rolling down my face. I hope you find a way, I know there is a way. But it has gone on for 6 years for me and far as faith is concerned I can’t find it. I wish I could make you feel better, God knows I search for someone that will give me hope, but right now my only hope is that I am on the Pfizer list to be treated with medication used for Fibroyd mialgia. Also my bath tub has a whirl pool it helps some, but a hot tub would be better. I think it is the relaxation it causes; you are in my thoughts and prayers.

[grace429]

My heart goes out to you as I have had Interstitial Cystitis since October 2007. It came on me totally out of the blue with no previous bladder problems. I was 49 years old. Only those of us that experience it can understand It is an extremely painful disease. After seeing several doctors and absolutely no relief from the continous pain I finally got a diagnosis of IC but then was told there was no cure! I began looking on my own for something that would relieve me of the intense, continuous pain. My sister suggested a product that had Mangosteen Juice in it. I started taking that in January of 2008. I found 1 - 2 oz a day allieviated the pain as long as I continued taking it. I was so very grateful for the relief from pain but since it was quite expensive to me and not a "cure" I continued doing as much reading on the subject of IC and related topics as possible. In February of 2009 I stumbled upon a couple of books that have lead me to taking a different natural product that is less expensive and gives me relief again as long as I continue to take it. I am amazed at the tremendous relief I have found. From what I read It apparently will never be a complete cure for IC but it is an amazing nutritional supplement that is a sulphur compound that lessens inflammation. You might have heard of it as it is often included in a mix of other natural ingrediants for people who suffer from arthritis. I do not have any background nor experience with the medical field but I would suggest you first take a look at the two books I read that were helpful to me: "Inflammation Syndrome" and "The Miracle of MSM, The Natural Solution For Pain" . Our Public Library happened to have both of these books available. Each book mentioned IC briefly although the books are not about that disease. I knew IC was an inflammation of the bladder so what I read made sense. Normally the connective tissues of the wall of the bladder are protected from the urine by a coating of mucous membranes. With IC the membranes and underlying tissue become inflamed and irritated. So as a result of what I read, I spoke with my doctor to see if it was safe/okay to try this natural product. She had never heard of taking it for IC only arthritis mixed with other ingrediants but I did get her okay to try it so I started taking Pure MSM capsules not mixed with any other ingrediants. The MSM book mentions that each person has to find the amount that works to relieve pain for their own body. What I personally have found works for me is to take the capsules orally - one 1,000 mg capsule per day and find that if I divide the MSM powder that is in that capsule into 3 portions and take it 1 portion in morning, 1 mid day and 1 in the evening I can stay pain free!!!! If I forget to take one of the doses during the day I will start to feel the beginning of my IC pain so I know I am not "cured". Depending on your level of pain/your body, the amount to take may be different but that is the amount that works for me and it is truly like a miracle!!!! I would check with your doctor as he/she knows what other conditions you may have. I wanted to share this with you and hope this will make a world of difference for you and I pray that your faith in God will be encouraged.

[stillhoping]

Hi,

Just wanted to ask about MSM - what make did you buy? I want to try it. Was it pure MSM or with glucosamine?

My IC started about 25 years ago, one month after the wedding. It took a while to see that it was caused by any tomato-related food, intercourse, or hormone changes due to periods. Doctors were just laughing at me.. Lots of suffering but once I started birth control pills and divorced, I forgot about it for many years. 10 years ago I have moved to Vancouver and my sinus started, only to be followed by IBS, and two years ago, after another yet honey moon cystitis - fully blown IC... I can barely eat anything... My dear husband is wonderful, having so much patience and understanding and with very little intimacy :-( Went through DMSO instillation (burnt me alive), URACYST instillations (caused 2 regular UTIs)... Elmiron was helpful but could not continue because of my IBS. Some improvement was achieved by homeopathic remedies Magnesia Phosphorica and staphysagria... Got very good results with Singulair for my sinus. But IC got REALLy bad lately.

Yes, I can relate to becoming invisible - just cannot explain to everyone why I cannot eat like normalk people, why always in pain... Try to hide even from my best friends.

I have read a book by Larrian Gillespie and subscribed to her on-line help. She has suggested pure estrogen patches, but doctors here in Vancouver do not want to prescribe them, only estrogen + progestin what seems to give problems... There are days like today whan I would not really want to live.

God help us all!!!!

[grace429]

To "stillhoping"- to answer your question, I have used both Solaray "Pure- Ultra Strength" MSM capsules and Natural Factors "100% Pure" MSM tablets. There is NO Glucosamine in the ones I take. The tablets I crush into a powder with a spoon. MSM stands for Methyl-Sulfonyl-Methane. I hope and pray you find that it helps you too.
I have wondered if IC has any connection to hormonal changes as the start of my IC came at the same time as several perimenopausal symptoms. I will have to look at the book you've read by Larrian Gillespie. What about another form of natural estrogen like bioidentical cream that is applied to your skin? I don't think all doctors are educated about bioidentical hormones so you would have to find one that is familiar with them.
My mother had breast cancer when she was in her 50's and I have wondered if there was any relationship to her taking estrogen/progestin for several years. Progestin is not a natural substance to our human bodies. But I've heard Bioidentical progesterone IS identical to what your body produces. There is a test to see how low you are in both estrogen and/or progesterone. It is a simple saliva test done at home with a kit the doctor gives you.

[stillhoping]

Thanks for the reply! I have bought MSM today and hopefully it works for me :-)

Yes, IC is hormons related. Lack of estrogen causes bladder (and bowels) lining become thinner and less elastic etc etc.

Yes, many cases of breast cancer are considered HRT related...

What kind of hormones, bioisometric?, are you talking about?

I had a good day today when I had an appointment with the only woman-urologist in Vancouver. She is just amazing, very knowledgeable and kind. She will arrange for me to meet with nutritionist to discuss my horrible diet and after cystoscopy, hopefully, will recommend something else. But it was sooooo nice talking to a caring doctor, for a change... My hopes are definitely up.

Best regards to everyone!

[Uzes]

[quote="stillhoping"]Thanks for the reply! I have bought MSM today and hopefully it works for me :-)

Yes, IC is hormons related. Lack of estrogen causes bladder (and bowels) lining become thinner and less elastic etc etc.

Yes, many cases of breast cancer are considered HRT related...

What kind of hormones, bioisometric?, are you talking about?

I had a good day today when I had an appointment with the only woman-urologist in Vancouver. She is just amazing, very knowledgeable and kind. She will arrange for me to meet with nutritionist to discuss my horrible diet and after cystoscopy, hopefully, will recommend something else. But it was sooooo nice talking to a caring doctor, for a change... My hopes are definitely up.

Best regards to everyone![/quote]

I just joined the forum. I came out of the hospital in June 2009 with a "possible" diagnosis of either I.C. and/or gallbladder gravel. Like the rest of you I have seen countless specialists, had countless procedures and tests and they have come up with no diagnosis except fibromyalgia and IBS. I have had both for over 20 years and that pain is absolutely nothing compared to this excrutiating pain.
I will be going to the Vancouver "most knowledgeable" IBS Urologist, next week. I am not comfortable about seeing him for a number of reasons but at least I may get a diagnosis at long last. I did ask my GP to refer me to another urologist who is supposed to be compassionate as well as knowledgeable. His wait list is only 3 months. I would have loved to have gotten into see the female urologist that (I think) you are refering to. Her office told me that the wait was 9-12 months, unless your GP said it was urgent and then she would do it in 1-2 months. Could you tell me how long you waited? If your doctor said it was urgent could you tell me how urgent`` is defined.
I appreciate the MSM information and will ask my GP if it is alright for me to try it.
Could you all please tell if the cystoscopy is usually done under a general. I sure hope so as we are in such pain already I can't imagine going through that procedure awake!
Finally, I was interested in the comments regarding a hormonal componant. A year ago I was put on Vagifem suppositories as my the tissue in my vaginal canal was shredded. I don`t know what hormone would have been in this suppository but the pain started just around the time I started taking them, and it became steadily worse for the 2 months I took them.
Any responses would be greatly appreciated.

[stillhoping]

Hello,

My doctor's office put a stamp "Utrgent" and in the letter there was a brief description of my problems so was actually in within a month. But it was a preliminary meeting, now I have to wait for another cystoscopy with her in September. No, it is done under the local anaesthetic and it is relatively uneventful, if compared with any flare-ups.

Vagifem caused huge problems for me. I am taking patches, Estalis, they don't seem to add any probelms, although may be not that helpful. Larrian Gillespie, American doctor/book author advises to take only estrogen patches but they are not prescribed in Canada...

I have found on this forum additional info about long term antibiotics treatment, check:
http://livingwith.urologychannel.com/hc-forum/interstitial-cystitis_peer-to-peer_f110/the-story-of-my-cure-of-ic_t51651.html

I have sent Dr.Stothers fax asking her opinion about it since it is not that easy to really mail the tests to the US, and the author of this post, Peggy K, but no reply so far.

Regards,
Natalia