garden girl
07-28-2005, 01:47 PM
I hope that sharing some of my experience will help others to see that IC does not have to be the end of the world, even if it may seem that way at first. I have been so scared and depressed at times, but I found the inner strength to get the help that I need and I have been improving gradually ever since! :)
I want to share what I couldn’t (or just didn’t) read when I started on my journey a year and a half ago – people diagnosed with IC do improve! It takes time and some trial and error, but you can get better.
Like a lot of the stories I have read here, I had to travel a long and exhausting road to get my diagnosis. It all started a year and a half ago with a severe culture-positive bladder infection that did not seem to respond to antibiotics (I was given Macrobid for 10 days because we had been trying to get pregnant. The other time I was given Macrobid, it did nothing, too, but I was able to take Bactrim three days later – and then the infection was gone). I felt a little better after taking the old reliable Bactrim.
A month later, my husband and I had sex and it was so uncomfortable. It really scared me! I went back to the doctor and after a round of Cipro, she gave me Detrol LA and eventually sent me to a urologist. She told me that she suspected IC, which terrified me, because by that time, I had been to this site and others and read horror stories of lives ruined forever by IC. When I got to the urologist, I told him that my worst fear was that I had IC. He shook his head and said (without examining me yet, mind you), “You don’t have IC. If you did, you’d be up at night going to the bathroom and you would have bladder pain.” Since I hadn’t experienced either of those (my only symptom at the time was frequency and I could sleep through the night, no problem) and he was confident that my bladder was simply irritated after my infection and would get better, I left feeling pretty good.
Of course, that did not last! :mad: As my frequency continued and I spent my days searching the internet for something, anything that would tell me what was happening to me, I fell into a depression. I cried all day sometimes and wondered how I could go on. But somehow I managed to live a pretty normal life on the outside.
Eventually, the Detrol LA kicked in and my frequency was gone! (It took a good two to three months for it to work.) After a few celibate months, my husband and I attempted intercourse. It was painful for me because my muscles were so tight after all the clenching they had been doing. With each subsequent attempt, it felt better, though. Things were looking up. :)
Then, I had a burning sensation after going to the bathroom that would last for hours sometimes. I went to the urologist to have a urine culture done. It was negative. Eventually, the pain went away. Then it came back the next month and went away within a week. I started to notice the cyclical pattern and went to the gynecologist. After a few gynos and lots of unnecessary yeast treatments, which I know made things worse, my last OB/GYN suggested that I go to a pelvic pain specialist.
I found one at UCLA who has been excellent (she’s one of the leading experts in pelvic pain treatment). I asked for a referral to another urologist for a second opinion and she gave me the number of one in Santa Monica, who has also been wonderful. He sees many patients with IC, which I think helps him to recognize it more easily. I had been keeping good notes about my symptoms and what I had tried so far. I handed him a copy and immediately after he had read it, he was able to tell that I had IC. I cried right there because it was not what I had wanted to hear! I was devastated! My worst fear had come true! :(
I was given the potassium sensitivity test, which didn’t really bother me except for making my urethra hurt for days afterwards (probably because the nurse giving it jammed the catheter in without much notice, instead of being gentle like the doctor himself had been previously when taking a urine sample). However, based on my symptoms and my mild reaction, he was able to make the diagnosis. My pain symptoms have mainly been urethral sensitivity and vaginal burning. He told me that I have chronic urethritis, but that is a form of IC.
My pelvic pain gynecologist diagnosed pudendal neuropathy and for a while she didn’t agree with my urologist. I think she is coming around now that she has seen a letter I had to hand carry to her from him (they keep losing my chart at her office! :hmm: ). I guess these things overlap.
I’m now at six months with the Elmiron and it has been helping me very gradually. In fact, I think all of the meds and treatments together have been helping gradually. I tried weaning myself off the Detrol, but after two days without it, I was in such discomfort, I was in tears. I guess it was the spasms coming back. I went back on it and decided not to change any meds until my one year on them is over. At that time, we hope to start trying again for a baby. I’ve been reading the pregnancy boards with great interest because I want to know what I can and can’t do/take during a pregnancy. It has been such a comfort to me to see that women who have IC can and do have babies! (My urologist is all for his patients getting pregnant. He said that most of them feel good while pregnant and he thinks it is also very healing to the bladder and body, in general.)
Even though I have been doing better, my hormones continue to play a big role in how I feel (I always flare up after ovulation and feel great during my period). I also believe that stopping the pill to try to get pregnant may have left me susceptible to IC since the infection happened six months after stopping it. Every month I have the pain flare-ups – now that the Elmiron and others meds are working – they are down to three days from ten. I hope to continue to see improvement.
What has helped me:
Above all, prayer and wise counsel from my husband and a close friend who have helped me to see that God is in control and everything will be OK one way or another. God has brought me through a lot in my life so far and with each challenge comes a new chance to grow and develop my character. Each challenge is harder – I’m afraid to see what’s next! :) Nothing touches you that does not go through God’s hand first. I have found a lot of inner peace lately that is a direct answer to prayer. It has helped me to face what is happening and admit that I have IC.
Experience. Now that things are more under control, I know that when I have a flare up, it will not last long. I remember that things will return to a more pain-free state in time. My thoughts used to run away with me – my emotions were so attached to how I felt physically that at the hint of a flare-up, I would freak out!
Taking control of my healthcare, no matter how afraid I felt. I want to tell people: listen to your gut and find a doctor who will listen to you. Easier said than done, especially with IC, a problem that gets easier to diagnose the longer it goes on and more symptoms come to bear. I think I knew in my heart that I had IC when my PCP suggested it a year before my diagnosis, but because my first urologist told me I didn’t have it, my treatment was delayed because I chose not to look at the red flags surrounding him.
My meds: Elmiron, Atarax, Detrol LA and Neurontin.
My diet. This took awhile because when I wasn’t feeling as good as I am now, I would eat things on the “bad” list and not think they affected me since I was already feeling bad. As I’ve felt better, it is easier to distinguish symptoms related to eating the “wrong” foods. I’m still playing with my diet, though, and I find that some times of the month I can eat “bad” foods and be fine, while at other times of the month, the foods affect me.
Pelvic floor physical therapy – but only the kind that addresses my multiple trigger points. I had six months of PT previously that did not help me nearly as much as one session with my new PT. With the last one I did biofeedback (Glazer’s protocol), perineal massage and ultrasound. With the new one, I do internal massage as well as external trigger point therapy and stretching. I had no idea how much my abdomen and back (not just the lower back) are involved! She taught my husband how to do the internal trigger point massage, so now we do this at home a couple nights a week.
Acupuncture/trigger point injections/acupressure. I go to the UCLA East-West Medicine Center, which has doctors trained in both western and eastern medicine. I have gotten a lot of temporary relief from my treatments. I’m hoping to see longer-lasting results, eventually.
Counseling with a women’s health psychologist. I just finished nine months of therapy with her today! She said I had come a long way and agreed with me that it was time to at least take a break. I don’t plan to go back for another six months, if at all (I’ll be attempting to cut back on my meds to try to get pregnant in about six months). For now, I am content to relax and continue to let my treatments work! (I guess stopping therapy with her was a catalyst to come find support here when I need it!)
I’m sorry that this post is so long – I’ve never done anything like this before and to be honest, I was a little afraid to introduce myself. It’s easier to stay in the shadows and observe. But I hope that maybe someone who reads this will be helped by my experience.
D
I want to share what I couldn’t (or just didn’t) read when I started on my journey a year and a half ago – people diagnosed with IC do improve! It takes time and some trial and error, but you can get better.
Like a lot of the stories I have read here, I had to travel a long and exhausting road to get my diagnosis. It all started a year and a half ago with a severe culture-positive bladder infection that did not seem to respond to antibiotics (I was given Macrobid for 10 days because we had been trying to get pregnant. The other time I was given Macrobid, it did nothing, too, but I was able to take Bactrim three days later – and then the infection was gone). I felt a little better after taking the old reliable Bactrim.
A month later, my husband and I had sex and it was so uncomfortable. It really scared me! I went back to the doctor and after a round of Cipro, she gave me Detrol LA and eventually sent me to a urologist. She told me that she suspected IC, which terrified me, because by that time, I had been to this site and others and read horror stories of lives ruined forever by IC. When I got to the urologist, I told him that my worst fear was that I had IC. He shook his head and said (without examining me yet, mind you), “You don’t have IC. If you did, you’d be up at night going to the bathroom and you would have bladder pain.” Since I hadn’t experienced either of those (my only symptom at the time was frequency and I could sleep through the night, no problem) and he was confident that my bladder was simply irritated after my infection and would get better, I left feeling pretty good.
Of course, that did not last! :mad: As my frequency continued and I spent my days searching the internet for something, anything that would tell me what was happening to me, I fell into a depression. I cried all day sometimes and wondered how I could go on. But somehow I managed to live a pretty normal life on the outside.
Eventually, the Detrol LA kicked in and my frequency was gone! (It took a good two to three months for it to work.) After a few celibate months, my husband and I attempted intercourse. It was painful for me because my muscles were so tight after all the clenching they had been doing. With each subsequent attempt, it felt better, though. Things were looking up. :)
Then, I had a burning sensation after going to the bathroom that would last for hours sometimes. I went to the urologist to have a urine culture done. It was negative. Eventually, the pain went away. Then it came back the next month and went away within a week. I started to notice the cyclical pattern and went to the gynecologist. After a few gynos and lots of unnecessary yeast treatments, which I know made things worse, my last OB/GYN suggested that I go to a pelvic pain specialist.
I found one at UCLA who has been excellent (she’s one of the leading experts in pelvic pain treatment). I asked for a referral to another urologist for a second opinion and she gave me the number of one in Santa Monica, who has also been wonderful. He sees many patients with IC, which I think helps him to recognize it more easily. I had been keeping good notes about my symptoms and what I had tried so far. I handed him a copy and immediately after he had read it, he was able to tell that I had IC. I cried right there because it was not what I had wanted to hear! I was devastated! My worst fear had come true! :(
I was given the potassium sensitivity test, which didn’t really bother me except for making my urethra hurt for days afterwards (probably because the nurse giving it jammed the catheter in without much notice, instead of being gentle like the doctor himself had been previously when taking a urine sample). However, based on my symptoms and my mild reaction, he was able to make the diagnosis. My pain symptoms have mainly been urethral sensitivity and vaginal burning. He told me that I have chronic urethritis, but that is a form of IC.
My pelvic pain gynecologist diagnosed pudendal neuropathy and for a while she didn’t agree with my urologist. I think she is coming around now that she has seen a letter I had to hand carry to her from him (they keep losing my chart at her office! :hmm: ). I guess these things overlap.
I’m now at six months with the Elmiron and it has been helping me very gradually. In fact, I think all of the meds and treatments together have been helping gradually. I tried weaning myself off the Detrol, but after two days without it, I was in such discomfort, I was in tears. I guess it was the spasms coming back. I went back on it and decided not to change any meds until my one year on them is over. At that time, we hope to start trying again for a baby. I’ve been reading the pregnancy boards with great interest because I want to know what I can and can’t do/take during a pregnancy. It has been such a comfort to me to see that women who have IC can and do have babies! (My urologist is all for his patients getting pregnant. He said that most of them feel good while pregnant and he thinks it is also very healing to the bladder and body, in general.)
Even though I have been doing better, my hormones continue to play a big role in how I feel (I always flare up after ovulation and feel great during my period). I also believe that stopping the pill to try to get pregnant may have left me susceptible to IC since the infection happened six months after stopping it. Every month I have the pain flare-ups – now that the Elmiron and others meds are working – they are down to three days from ten. I hope to continue to see improvement.
What has helped me:
Above all, prayer and wise counsel from my husband and a close friend who have helped me to see that God is in control and everything will be OK one way or another. God has brought me through a lot in my life so far and with each challenge comes a new chance to grow and develop my character. Each challenge is harder – I’m afraid to see what’s next! :) Nothing touches you that does not go through God’s hand first. I have found a lot of inner peace lately that is a direct answer to prayer. It has helped me to face what is happening and admit that I have IC.
Experience. Now that things are more under control, I know that when I have a flare up, it will not last long. I remember that things will return to a more pain-free state in time. My thoughts used to run away with me – my emotions were so attached to how I felt physically that at the hint of a flare-up, I would freak out!
Taking control of my healthcare, no matter how afraid I felt. I want to tell people: listen to your gut and find a doctor who will listen to you. Easier said than done, especially with IC, a problem that gets easier to diagnose the longer it goes on and more symptoms come to bear. I think I knew in my heart that I had IC when my PCP suggested it a year before my diagnosis, but because my first urologist told me I didn’t have it, my treatment was delayed because I chose not to look at the red flags surrounding him.
My meds: Elmiron, Atarax, Detrol LA and Neurontin.
My diet. This took awhile because when I wasn’t feeling as good as I am now, I would eat things on the “bad” list and not think they affected me since I was already feeling bad. As I’ve felt better, it is easier to distinguish symptoms related to eating the “wrong” foods. I’m still playing with my diet, though, and I find that some times of the month I can eat “bad” foods and be fine, while at other times of the month, the foods affect me.
Pelvic floor physical therapy – but only the kind that addresses my multiple trigger points. I had six months of PT previously that did not help me nearly as much as one session with my new PT. With the last one I did biofeedback (Glazer’s protocol), perineal massage and ultrasound. With the new one, I do internal massage as well as external trigger point therapy and stretching. I had no idea how much my abdomen and back (not just the lower back) are involved! She taught my husband how to do the internal trigger point massage, so now we do this at home a couple nights a week.
Acupuncture/trigger point injections/acupressure. I go to the UCLA East-West Medicine Center, which has doctors trained in both western and eastern medicine. I have gotten a lot of temporary relief from my treatments. I’m hoping to see longer-lasting results, eventually.
Counseling with a women’s health psychologist. I just finished nine months of therapy with her today! She said I had come a long way and agreed with me that it was time to at least take a break. I don’t plan to go back for another six months, if at all (I’ll be attempting to cut back on my meds to try to get pregnant in about six months). For now, I am content to relax and continue to let my treatments work! (I guess stopping therapy with her was a catalyst to come find support here when I need it!)
I’m sorry that this post is so long – I’ve never done anything like this before and to be honest, I was a little afraid to introduce myself. It’s easier to stay in the shadows and observe. But I hope that maybe someone who reads this will be helped by my experience.
D