Unable to get pain management- HELP!

[Leila1026]

I am new to the site and I was hoping this great community could give me advice about how to attain better pain management (specifically in the Chicago area if possible).

I developed IC in 2000 when I was 18 and was diagnosed at 20. After several years, I also developed severe pelvic floor dysfunction and vulvodynia, which worsened my symptoms dramatically. Now, in 2008, at 25 my pain and symptoms are worse than ever- so severe that I've gone from being a full time student and working to being house-bound because of severe pain and needing to void every 5 to 10 minutes.

I was on the maximum dose of Ultram for about 7 months but it did not help with the pain, so I went to a pain clinic hoping that they could help me get some relief. I saw two different women at this clinic and they basically told me "you're so young and you have your whole life ahead of you" and refused to even consider starting me on opiod therapy. Actually, I don't care whether it's opiod therapy or not, I just need something stronger than Ultram that will actually help the pain. (side note- I only tried ultram when every other typical medicine for IC failed me, including all the usual ones like Elmiron, elavil, trazadone, flexiril, neurontin, lyrica, ultracet, pyridium, detrol, wellbutrin, effexor, etc.)

Overall, I 've come to a point where I don't know what to do. I've seen about 10 different urologists and physiatrists all over Chicago and none of them are willing to treat my pain more aggresively because of my age. I understand that they have to be careful when prescribing opiods, but I have plenty of data to prove that I have severe IC and PFD in addition to the fact that I'm actively trying a million other things. I'm doing pelvic floor physical therapy every week, cognitive behavioral therapy every week, I use a TENS unit everday, I follow the IC diet, do light exercise everyday and I'm going to be doing botox in my bladder in a couple months. I feel like I'm holding up my end and I deserve some relief! My pain is so out of control that I am unable to function anymore and I just want to get my life back somewhat.


Does anyone have any suggestions for how to ask for pain help or know of anyone in the Chicago area that is understanding of the severity of IC pain? I'm desperate and would appreciate any words of advice.
Thank you so much

:help: :confused:

[hdb1982]

I am sorry they are using your age as a cop out. I understand there reasoning but if you are old enough to have pain you are old enough to get relief. I am 25 as well, for 3 more wonderful months before I turn 26 and become closer to 30 than 20. I have been ob narcotic pain amnagement since 2005. A full year before I was even diagnosed. I have IC PFD Endo and adhesion disease, all confirmed. The sky is the kimit for pain control so they can't say well if you start it now in 20 years you won't have any other options. I would google your area or open the phone book looking for pain manamgement. A good place to call is ob/gyn, a lot of times there are pelvic pain specialist that are primarily ob/gyn. They don't advertise the pelvic pain specialist part you just have to call and ask if they treat pelvic pain and what methods they use. If they say they use narcotics, don't schedule on that call, call back in a few hours or the next day. I have had the most relief with my new ob/gyn who is a pelvic pain specialist, I never knew he was b/c when I googled that in my area nothing came up. I didn't think there were any in my area. Good luck

[ICNDonna]

Are they suggesting any other treatments to help with your pain?

[curlette]

So sorry to read about your pain. I've found that the less medications I take, the better I feel. For pain, I now take hydromorphine contin 18mg twice a day and since I've started the higher dose, I've been able to stop taking Dilaudid (hydromorphone) which is a short acting pain killer. It's all about "quality of life" and if you could stop some of the other meds and make it simpler. Try working on the pain issue and see if it doesn't solve a lot of your other problems. It really worked for me.
Hugs & Prayers

[SandyRN]

When you go to see a pain mgmt doc or any doc for IC it's best to go in prepared. Know your medications, know the risks, benefits, etc. Take Dr. Brokoff's lecture on pain mgmt with you...I don't know the link off hand but I know others will pipe in and show it to you. Take all the info you can possibly find on IC and how painful it is. IC doesn't care how old you are....it can cause pain as bad as end stage cancer patients endure. You must never give up. If one doctor says no, you go on to the next, and the next til you find someone willing to help you. It took me quite a while to find a doctor who believed me and was willing to treat my pain. I had doctors giving me percocet, but all the tylenol in it was bad for my liver, so, at least in my case and many others here on the board, we found safe relief with long acting opiod treatment with short acting meds for breakthru medications...meaning when they long acting isn't working quite well enough, you can take a short acting med to kind of give yourself a boost.

Know that the odds on getting "addicted" to pain medications when you are in true pain are slim to none. You will build a tolerance to medications and this is true even when taking over the counter meds like Ibuprofen...sometimes it takes more and more to help the pain. This is normal physiology and is not addiction. Addicts take the meds to get a high and I can assure you, as you can assure the next doctor you see, that a high is not what you are seeking but true pain relief and that after the first few days on a med you most likely will not feel a high from it.

Please read, read, and read some more on this site. There is a lot of information here about what to say, and how opiods work. I know you don't care what they give you for pain as long as it helps and that is a great sign, and one the doctors should consider when thinking about rx'ing medications for you. You just truly want to feel better, not get high.

I hope you find some help soon. So many of us have been where you are and it's not a fun place to be!

Take care, Sandy

[jen74]

Hi Leila.
I live in Chicago, and I have IC. I have been struggling with this since May of
2006. I have ALOT of pain with my bladder. I also unfortunately cannot tolerate most all meds, even the pain meds. Heck, I was taking one 50mg ultram and that was giving me side effects( severe cramping, and gas). I was doing the bladder instillations (heparin,lidocaine, and saline), but had to stop doing them lately because I keep getting UTI's and I have big issues with being able to take antibitoics. My bacteria(ecoli) is resistant to cipro now, and I have severe side effects to macrobid and bactrim so I cannot take them either.
I am currently looking for a pain doctor, but have had no luck. I went to an anesthesiologist and he only offered muscle relaxants and spinal injections. I wish I had some advice. Who is your uro specialist who has been treating your IC? I see Dr. Noone at Luthern General in Park Ridge not to far from Chicago. I live close to Ohare, well by express way anyhow. I live in the Jefferson Park area. Feel free to email me if you want to talk. wakko711@yahoo.com

[SharonA]

Here is a link to Dr. Brookoff lecture...
Short version
http://www.ic-network.com/handbook/brookoff.html
Full version
http://www.ic-network.com/handbook/brookoff.pdf

[SandyRN]

Thanks Sharon!

[Bea]

I agree hon.. don't give up.. I have been suffering for approx 14.5 years now.. I have been treated for pain my my uro..but with percocet and vicodin.. which perc.. caused migraines.. and the other doesn't nothing.. I have done the pain thing years ago.. and was offered nothing.. and they didn't even know what IC was.. so I gave up.. well my uro is afraid to do anything other than the two I mentioned.. which I have the vicoden hp at home (narco) usless.. anyway, I spent mos now researching like crazy to find a specialist.. making appointments and canc.. them.. well last night at 3 am.. after several phone calls during the day.. and hours on the internet.. I found a group who treats pelvic pain and gyno issues as well as several others I suffer from... they do opiod treatment, and well as everything else.. they even have a pt in the group who does pfd therapy.. I am so hoping it works out.. my point.. don't give up... keep trying.. there has got to be someone out there.. I am not going to lie.. it is frustrating.. I feel it all the time, but like sandy said.. be prepared.. get your stuff together and bring it..good luck hon :grouphug:

[wolfaleena]

Dear Leila1026:

i was browsing the posts and came across yours.. wondering if you ever got any relief or found a doctor for your pain. also, what did they do in cognitive behavioral therapy?

[Leila1026]

Thank you for all the wonderful advice everyone- I really appreciate it. I have made some progress in my search for good pain management and I've had some dissapointments as well. I found an amazing pain specialist in my hometown of Miami (Dr. Howard Popp) and he has gone above and beyond for me. We started a series of nerve blocks, which has been the most effective treatment I've ever tried. The third one gave me near constant relief (I was at a 2-3 most days vs. an 8 or 9) for almost two months. Unfortunately, it's not really a long-term solution but it was amazing that something actually worked for once. Right now I'm in a flare and I've been in tremendous pain, but I'm trying to stay positive and follow Dr. Popps advice. I still haven't had any luck treating my vulvodynia which is extremely painful and keeps me from being able to be sexual (in any form) in my long-term relationship. Any thoughts there? I know thats a though one.
As far as the CBT goes, I'm still looking for someone who understands chronic pain and would be a good fit for me. I think it's really important to have good support.

~Leila~ :confused: :hi:

[wolfaleena]

Leila1026 glad to hear of your success with your pain mangement doc. have you tried Methadone for pain. I am having some success with it. As far as vulvadynia is concerned. In the philaelphia area Dr kristene whitmore has a practice and there is a Dr. susan kellogg who is a wonderful specialist with Vulvadynia. She has helped so many and is very very nice and easy to get along wth. She is actually a doll!
I know that is far from you... but she is really good

[VCNJ84]

Leila1026 glad to hear of your success with your pain mangement doc. have you tried Methadone for pain. I am having some success with it. As far as vulvadynia is concerned. In the philaelphia area Dr kristene whitmore has a practice and there is a Dr. susan kellogg who is a wonderful specialist with Vulvadynia. She has helped so many and is very very nice and easy to get along wth. She is actually a doll!
I know that is far from you... but she is really good

Do you have contact info you could PM me for Susan Kellogg?

My Gyno raved about her...and then someone in the office said she was in research and lecture mode and is not currently seeing patients :confused:

I tried to call the last hospital my gyno knew where she had worked and the hospital has shut down.

[wolfaleena]

have you tried any of the topical treatments for vv.
also how about compounded vaginal valium suppositories?

[amaranthe]

Several of us here use the Lidocaine 5% patches directly on our vaginas for vulvadynia pain. It really helps alot. For me, I prefer it over the Lidocaine 2% jelly because, first of all, it is obviously alot stronger and thus, works better. Secondly, the jelly just never lasted very long for me, only working for 30 minutes tops before I had to reapply it, whereas the patches work all day. I just remove them when I need to go to the restroom and it sticks right back on. I dont cut mine up and place it around thngs, though I know some patients prefer to do that. For me, it works best just to slap the whole patch on there.

The only bad part is they are really expensive if you dont have r/x coverage. But, if you do, definately ask your Dr. to let you try them! They are awesome!

Hope this helps,
Amaranthe