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Severe Chronic Interstital Cystis ans Vulvadnia Pain. I don't know what to do anymore!
Hi Dr,
My name is Shell and I was diagnosed with Chronic IC and Vuvlvadynia in 99' I also almost had cervical cancer in 99 and had a lot of laser surgery on my cervix and vulva/cone biopsies. I was in the last stage Carcinoma in situ. I am 29 now and was 19 when all this started. Ive had normal paps since. Anyway, I have been on pain medicine since 2002. I started taking Vicodin/Soma. I saw the one and only IC urologist specialist in Louisiana and she diagnosed me. She first put me on medications like pryidum plus, urelle, uristat, atrax. The pain kept getting worse and I couldn't see her anymore b/c my insurance dropped me b/c of the pre-existing condition. So I fought to get medicaid and got it and started seeing a new uriologist. He was given me the bladder pills, atarax and 5m Vicodin for the pain. I was also getting 3 to 5 heprin cathater treatments which did nothing. I had my first hydro distention under ggeneral anthestia and that was the worse pain after and didnt help with the pain anyway. I went on to find a more experienced doctor through Tulane medical school and he knew a lot but was leaving in 6 weeks when I met him. The other doctors there didn't really know much. I had 2 hyro distentions before the Tulane doctor and the new one wanted me to get another one and do biopsies. It was a week before Hurricane Katrina. I had it done and they had given me antibiotics before, during and after the surgical procedure. I ended up getting a massive infections from the biospies anyway and he gave me a little bit more Vicodin and 10days of Cipro. I was stuck in the storm for Katrina trying to evacuate for Karina, which was a very traumatic experience and a long story! I have PTSD from it. I ended up after days being on the road in severe pain, got to Baton Rouge and waited 10 hours to see the ER doc. He only gave me 15 pills and a 10 day supply of levaqin which knocked out the infection. After the storm I started seeing...Continued..next post
My name is Shell and I was diagnosed with Chronic IC and Vuvlvadynia in 99' I also almost had cervical cancer in 99 and had a lot of laser surgery on my cervix and vulva/cone biopsies. I was in the last stage Carcinoma in situ. I am 29 now and was 19 when all this started. Ive had normal paps since. Anyway, I have been on pain medicine since 2002. I started taking Vicodin/Soma. I saw the one and only IC urologist specialist in Louisiana and she diagnosed me. She first put me on medications like pryidum plus, urelle, uristat, atrax. The pain kept getting worse and I couldn't see her anymore b/c my insurance dropped me b/c of the pre-existing condition. So I fought to get medicaid and got it and started seeing a new uriologist. He was given me the bladder pills, atarax and 5m Vicodin for the pain. I was also getting 3 to 5 heprin cathater treatments which did nothing. I had my first hydro distention under ggeneral anthestia and that was the worse pain after and didnt help with the pain anyway. I went on to find a more experienced doctor through Tulane medical school and he knew a lot but was leaving in 6 weeks when I met him. The other doctors there didn't really know much. I had 2 hyro distentions before the Tulane doctor and the new one wanted me to get another one and do biopsies. It was a week before Hurricane Katrina. I had it done and they had given me antibiotics before, during and after the surgical procedure. I ended up getting a massive infections from the biospies anyway and he gave me a little bit more Vicodin and 10days of Cipro. I was stuck in the storm for Katrina trying to evacuate for Karina, which was a very traumatic experience and a long story! I have PTSD from it. I ended up after days being on the road in severe pain, got to Baton Rouge and waited 10 hours to see the ER doc. He only gave me 15 pills and a 10 day supply of levaqin which knocked out the infection. After the storm I started seeing...Continued..next post
MEDICAL PROFESSIONAL
Your story is unfortunately a typical one for the patients I see in my practice. There are a number of reasons people end up in such a state, but one of the biggest reasons, in my opinion, is the modern 'fragmentation' of medical services and the growth of specialty services. When a person has problems that don't fit neatly into one specialty, the person is passed from doctor to doctor, and nobody directs the care in an organized manner. To deal with the current state of affairs patients are left in the difficult position of managing their care-- made more difficult when doctors don't take the time to educate patients about their diseases.
The primary thing is to get things organized-- to have an understanding of a plan of how to go forward, and to then implement the plan. There has to be an understanding of 'who does what', with the goal of having as few doctors involved as possible. Finally, you will need to decide what you can live with, what you must live with, and what you can't live with.
I can't make this plan for you, but I will try to give you a sense of how to do it. First, write down the conditions and symptoms in order, from the most painful or disabling to the least. Say at the top we have 'severe pain'-- break that down further. Are you having spasms of severe pain on top of lower-level pain? You may be able to treat the spasms using the antispasmodics you have tried already-- it may be that they will relieve at least the spasms, but not the dull ache that follows.
After the list of symptoms and conditions, think about the doctors you have right now, and place the name of the doctor next to the symptom he/she is treating. Are all of the symptoms covered? Can you get everything treated by one doctor? Next to each doctor's name write down the date of the last appointment, the medications he/she prescribes, and the date of your next appointment. Is there one doctor on the list who seems to care more than the others? Someone who spends more time going over things? If there is, THAT is the person you want to use next.
Take this list, tidy it up a bit, and go to that doctor--- or the doctor who is at least close to that ideal. Show your list of problems and symptoms, and ask if he/she will help direct your care.
All of this is just the start-- an attempt to organize your approach. If you are like most people, the problem will be made a little more manageable just through this organization.
IC is a difficult condition to treat; you have listed the medications that are used, and I have no new medications to suggest. But one thing is clear-- you don't know what you are doing with the pain medications. This is where you will need to decide what you need, and what you might have to live with.
I recently wrote about this exact topic on my blog, Suboxone Talk Zone-- about approaching pain control in a systematic way. I can't go into as much detail here-- feel free to check it out on the blog, which can be found by looking at my profile. The first decision is whether or not you will be taking narcotic pain medications. This is a critical decision, as it affects many things down the line. If you can live without them, then don't take them; if you absolutely need them, then the decision becomes how to take them without being destroyed by them.
All opiates will cause tolerance and physical dependence. You seem to do well with hydrocodone (the active medication in vicodin)-- most opiates are converted into other opiates by the liver, and that may be why some work better for some people-- for example, codeine does not work in people who have low levels of an enzyme called 'G6PD' which converts codeine to morphine.
In general, chronic pain is treated by a combination of a long acting narcotic for 80% of the pain, and then a short-acting narcotic for 'breakthrough pain'. This system avoids periods of no narcotic, and yet reduces the urge to dose as frequently as in a person who took no long-acting opiate.
You clearly demonstrate the main problem with narcotics-- that being tolerance. If you really look at your history, you will realize that increases in pain medication DO NOT SUBSTANTIALLY REDUCE THE LEVEL OF CHRONIC PAIN-- THEY ONLY INCREASE THE DOSE OF NARCOTIC. I'm not shouting-- I just want to really emphasize that point. With chronic pain, a person MUST stick to a reasonable dose-- and NEVER increase unless something changes physically. Again, any increase in dose will ALWAYS be met with tolerance, and very shortly you will be at the exact same level of pain.
If you cannot control your intake, and cannot find someone to control your meds for you, you are not a candidate for narcotics-- except Suboxone. I hear your attitude about Suboxone-- Suboxone consists of two very familiar and well-established medications, with the active drug, buprenorphine, repackaged to come in solid form (it was always an injectable in the past). Buprenorphine does not cause tolerance to keep rising-- the tolerance rises to a certain point, and then becomes constant, regardless of dose or length of time on the medication. Regardless of your feelings about Suboxone, that medication would be a reasonable alternative in a person with IC who for whatever reason does not tolerate agonists like methadone, fentanyl, or oxycodone.
A quick aside... your response during fentanyl withdrawal is not unusual; fentanyl has 'biphasic' elimination, meaning that in small doses the blood level decreases very rapidly due to the drug redistributing from your brain to the fatty areas in your body; after higher doses the fatty areas become 'saturated' with fentanyl and the elimination takes much longer. That is why fentanyl for a laparoscopy wears off in 20 minutes; high-dose fentanyl used for a cardiac anesthetic takes 24 hours or longer to wear off, so patients are often on ventilators until the next day.
Take care,
JJ
The primary thing is to get things organized-- to have an understanding of a plan of how to go forward, and to then implement the plan. There has to be an understanding of 'who does what', with the goal of having as few doctors involved as possible. Finally, you will need to decide what you can live with, what you must live with, and what you can't live with.
I can't make this plan for you, but I will try to give you a sense of how to do it. First, write down the conditions and symptoms in order, from the most painful or disabling to the least. Say at the top we have 'severe pain'-- break that down further. Are you having spasms of severe pain on top of lower-level pain? You may be able to treat the spasms using the antispasmodics you have tried already-- it may be that they will relieve at least the spasms, but not the dull ache that follows.
After the list of symptoms and conditions, think about the doctors you have right now, and place the name of the doctor next to the symptom he/she is treating. Are all of the symptoms covered? Can you get everything treated by one doctor? Next to each doctor's name write down the date of the last appointment, the medications he/she prescribes, and the date of your next appointment. Is there one doctor on the list who seems to care more than the others? Someone who spends more time going over things? If there is, THAT is the person you want to use next.
Take this list, tidy it up a bit, and go to that doctor--- or the doctor who is at least close to that ideal. Show your list of problems and symptoms, and ask if he/she will help direct your care.
All of this is just the start-- an attempt to organize your approach. If you are like most people, the problem will be made a little more manageable just through this organization.
IC is a difficult condition to treat; you have listed the medications that are used, and I have no new medications to suggest. But one thing is clear-- you don't know what you are doing with the pain medications. This is where you will need to decide what you need, and what you might have to live with.
I recently wrote about this exact topic on my blog, Suboxone Talk Zone-- about approaching pain control in a systematic way. I can't go into as much detail here-- feel free to check it out on the blog, which can be found by looking at my profile. The first decision is whether or not you will be taking narcotic pain medications. This is a critical decision, as it affects many things down the line. If you can live without them, then don't take them; if you absolutely need them, then the decision becomes how to take them without being destroyed by them.
All opiates will cause tolerance and physical dependence. You seem to do well with hydrocodone (the active medication in vicodin)-- most opiates are converted into other opiates by the liver, and that may be why some work better for some people-- for example, codeine does not work in people who have low levels of an enzyme called 'G6PD' which converts codeine to morphine.
In general, chronic pain is treated by a combination of a long acting narcotic for 80% of the pain, and then a short-acting narcotic for 'breakthrough pain'. This system avoids periods of no narcotic, and yet reduces the urge to dose as frequently as in a person who took no long-acting opiate.
You clearly demonstrate the main problem with narcotics-- that being tolerance. If you really look at your history, you will realize that increases in pain medication DO NOT SUBSTANTIALLY REDUCE THE LEVEL OF CHRONIC PAIN-- THEY ONLY INCREASE THE DOSE OF NARCOTIC. I'm not shouting-- I just want to really emphasize that point. With chronic pain, a person MUST stick to a reasonable dose-- and NEVER increase unless something changes physically. Again, any increase in dose will ALWAYS be met with tolerance, and very shortly you will be at the exact same level of pain.
If you cannot control your intake, and cannot find someone to control your meds for you, you are not a candidate for narcotics-- except Suboxone. I hear your attitude about Suboxone-- Suboxone consists of two very familiar and well-established medications, with the active drug, buprenorphine, repackaged to come in solid form (it was always an injectable in the past). Buprenorphine does not cause tolerance to keep rising-- the tolerance rises to a certain point, and then becomes constant, regardless of dose or length of time on the medication. Regardless of your feelings about Suboxone, that medication would be a reasonable alternative in a person with IC who for whatever reason does not tolerate agonists like methadone, fentanyl, or oxycodone.
A quick aside... your response during fentanyl withdrawal is not unusual; fentanyl has 'biphasic' elimination, meaning that in small doses the blood level decreases very rapidly due to the drug redistributing from your brain to the fatty areas in your body; after higher doses the fatty areas become 'saturated' with fentanyl and the elimination takes much longer. That is why fentanyl for a laparoscopy wears off in 20 minutes; high-dose fentanyl used for a cardiac anesthetic takes 24 hours or longer to wear off, so patients are often on ventilators until the next day.
Take care,
JJ
Well when I started seeing my first uriologist who diagnosed me in 99' she though she could accept medicaid and she did for a while but stopped. She had put me on the reg. bladder pills, Soma, VicodinES 2 4x a day and she told me to try this 25mcg Fentanyl patch which would help me take less Vicodines and it did for like a 1 1/2. I didn't realize that Fentanyl is 100 x stronger than morphine and 5o time stronger than herion ti'll I detoxed 2 1/2 years later. When I was on the vics and fentanyl I would sometimes just take it off b/c It wasn't working and everytime I would try to go up to 50, I would feel really hyper and vomit non stop. So when I took it off and on, I would have joint pain and restless legs. I had no idea I was throwing myself in to w/ds. Well I started seeing a PM doctor who saw me for free b/c I was young and he cares about helping people than the money. He doesn't prescribe Vicodin or any fast acting drugs like that. So he put me on 20mg of Opana in Dec of 07'. It did nothing! Thank god I still had refills of the Vicodin b/c I would have been screwed. Then he put me on oxycontin 20s, 30, 40, 60, with no breakthrough meds. It wasn't working and my tolerance would go up in 2 to 3 weeks. So in April I had the Radio frequency done with just a 10mg Valium. That was tourture! It did help though for about a month 1/2. I decided in June to just go back on the Fentanyl patch and started on 75mcg and was fine for 3 weeks then w/ds started setting back in, then 2 weeks later again and so on and at the time it wasn't getting rid of my pain, and I was in summer school ti'll July 23rd. I went up to 150mcg. The day after I took my final exam, I went right in the next day to do a 3 day detox and the 1st 2 days were ok and then 4 days and 4 nights I was in the most excruciating pain of my life. I didn't sleep for 2 weeks, fainted a lot, went to the ER. The psychatrist that were all addtiction specialists didn't understand why I was in Hell past 3 days. They said ," oh the 3rd day is the worst. Thats a load of bull! I thought I was dying and wanted to die. I was sick for over a month and refused suboxone or subutex b/c one of the most famous anestieologists said to me , your just switching to another drug. So I was opiate free for 2 1/2 months and couldn't take it anymore!! I went to the ER bending over in severe pain sreaming and moaning. They said you need to be on pain medication. My 3 psychatrists dont believe in pain meds at all, even after surgery. They wanted to put me on suboxone recently for the severe pain long term and I said no way! I am hpersentive to pain now. I had a 2nd RF done Oct.2nd and it didn't work. I have tried all those medications like lyrica, nuerotin, elavil, etc. many times. I am still on lyrica but it only helps with my tooth pain b/c all my teeth rotted out from the bladder meds, atarax, and acid reflux. After the storm I went from perfect teeth to a big cavatiy in every tooth in less than 9 months. I need 30 grand or more of work done. So I have been taking 10/325 mg of norco since October b/c without it Im screaming in pain and can't do anything but sit on my heating pad. B/c of my tolerance I have to take 2 1/2 to 3 10/325 norco just to touch my pain. I refuse to go on sub or anything strong med like Fentantyl again!! My primary care is giving me just 1 10/325mg of norco 4 times a day,so Im running out. I have tried all those other pain medications and vicodin is the only thing that honestly works for my pain. I can't function without it! I hate taking pain medications, I don't get a high from them and never did. I just want my life to be normal and to not be in pain! I am 29 years old and I am a senior in college still b/c of my medicla problems. I just want to graduate and get married and hopefully have kids! I am stessed to the max and don't know what to do anymore! I hate my life and I can't take the pain. I can't see another PM doc b/c medicaid does not accept PM and the procedures. I can't even try the pain pacemaker b/c no company will give my doc one for free to sponsor me b/c I am so young and in so much pain. The norco is the only thing that works but my damn tolerance is so high from the damn fentanyl. Even when my IC uriologist gave the fent. to me and it stopped working, she offered me morphine and I refused that. I am going through hell and need someones help badly!! B/C over here most docs dont even know what IC and Vulvadyina is and how painful it is! It's like a cancer you don't die from! If theirs anything you can do to help me , I would REALLY appreciate it!! I need all the help I can get!
Thank you,
Shell
Thank you,
Shell
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