This is my first time on this post. I have IC/Painful bladder syndrom with hunners ulcers. In pain for 8 years, found ulcers in 2011 had them fulgarated the found again in April 2014 so fulgarated again. Tried all meds, approx 25 diff ones, had Interstim implanted October 2014, it's not working. I also suffer w severe vaginal pain, burning, shooting pain, can't sit, drive. Get perineal nerve blocks which help for about 4 mos. I live in northern California if anyone has ulcers and has found relief pls let me know. The doctors seem to have run out of ideas and seemingly patience too. Now divorced, living w parents with my eight year old son. Help! Any advice would be welcomed. Cheers!
Diane
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Ladydidi
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have you discussed using botox or vaginal valium suppositories with your dr.? It sounds a lot like pelvic floor dysfunction...I have that, IC, endometriosis, pelvic organ prolapses and rectal intussusception all held up with mesh...had all the pain issues before mesh implants and actually things are getting better now...I do the vaginal valium, yoga and internal release (I do it at home on my own, but if you don't know how finding a well trained in pelvic pain physical therapist could be very helpful) may work...may not...but certainly won't hurt to try...good luck...I also have the interstim device and after it was put in if I hadn't known better I would have thought they removed my bladder...even though I had lived with it for soooo long I didn't even realize I had that much pain coming from that area...so that might also be worth investigating...if dr.'s give up on you they need to refer you to specialists or you need to find them on your own...I flew out of state to get the best care for my extensive 20+ year struggle wit pelvic pain and though I have bad days...I am much much better then I have been in a VERY long time! Don't give up...keep going!
Thanks for your reply. Yes, I have had 3 diff surgeries of 200u botox to pelvic floor muscles and that helped my pelvic floor. Doc mention botox to bladder but through research won't help w my ulcerative bladder pain plus may have to Catherdize which I can't do as my urethra is burning so bad. What is the mg of the Valium? Is it in a suppository? I've done 5mg w no help. What's internal release? Do you use the wand? Earlier I said the nerve blocks helped for 4 mos but I meant 4 weeks as the steroid doesn't last, but it's better than nothing. could you clarify, regarding the interstim, you say you thought they removed your bladder is that because the pain was gone? Or you were in more pain hence bladder removal surgery? Do you still have Interstim or did you remove it? I'm getting new settings on Monday but honestly, if these don't work I'll consider removing it all. I'm so glad you have good days now. After 20+ years you deserve that. It's been 8 for me and it's pure hell. Thankfully my son is turning 9 and getting more self sufficient. Thanks again ipurr2 for your help and hope to hear from you.
I was hoping to hear back from you, unless you replied and I don't know how to retrieve. Hopefully you can answer my questions when you can. I'm desperate .
Hi, have you heard of Dr. Joshua Prager at UCLA? He is a pain specialist. I wish could see him but I live so far away. But he is in California and I know a lady who had IC and Pudendal Neuralgia. They tried diff. stuff but eventually he did a some kind of pain pump on her abdomine,the left side i think. Helped her a lot...
I have heard of him. But my insurance won't cover. I think next year I'll switch so I'll have some different options. I'm going to make a note of him and research. Thanks again Lindsey.
Diane
Hi Ladydidi,
Sorry it's taken so long to reply...my 26 year old niece has had 2 strokes and 3 surgeries in the past month...so thinks have been a bit hectic...
Let's see...
question 1. the botox and vaginal valium are only to relax the muscles...if it's the nerves...they won't do much good or at least that has been my experience...unfortunately I have both nerve and muscle dysfunction so need "all of the above" to get some relief...my valium is 5 mg. tablets that I insert vaginally or rectally...depending on the symptoms...I have done suppositories of valium with Amitriptylin as well as valium with baclofen..pretty much the same relief as the plain old valium pill...but a fraction of the cost (suppositories $65 monthly tablets $11) They are not a complete "fix" with chronic conditions there generally will not be a completely fixed state again...so we have to learn to manage our symptoms the best we can with many tools...as for the botox in the bladder...they would (or should) be sedating you for that procedure...if not, I wouldn't have it done either...have you tried uristat? prelief? Ice pack to the urethra area? heat pack to the urethra? You have to keep trying different things...also from a lying position if you elevate your knees on pillows or bolsters to be higher then your hips this will help your pelvic floor muscles relax. Have you tried that?
2. internal release is where a physical therapist goes into the vagina or anus and works with massage to release knotted muscles...because you weren't sure what it was...I would recommend working with a physio/physical therapist before doing it at home so you can see the amount of pressure and friction they use because we tend to over do and this will make things get worse before it gets better, but with consistency it does help some...I have found for me...doing external massage of my buttocks muscles, psoas muscles, groins helps more then the internal work...even my mid-back muscles help relieve tension in my pelvic floor...there are ALOT of muscles and nerves down there so many things can be and most likely are at play here...work on your worst symptom first and go from there...which sounds to be your urethra is burning? Spasms most likely if you've been checked for uti...here's why..the ulcers in the bladder cause pain, the nerves send messages to the muscles that you are having pain...do something...so the muscles contract to protect...so the vicious spin continues...then over time (like in my case of over 20 years of this) the nervous system goes rogue and even after the cause of pain is resolved the pain signals continue...your body has now gone into the sympathetic nervous system (fight/flight) and you need it to be in the parasympathetic nervous system (rest/digest) so first thing is to get the pain under control even if that means pain medication...then you start working on doing things to break the cycle (yoga, meditation, diet...healthy lifestyle)...in hopes of making it manageable...to think we will be 100% pain free is unrealistic and just setting us up to fail...so maybe re-thinking our expectations is a must...
3. I use my thera-wand external now every day ... most days two times...
4. if the steroids are helping and nerve blocks/botox not helping then it most likely means chronic inflammation which matches your description of what is going on in your bladder...again...same as above applies...so if steroids work...use them as you implement the lifestyle changes to get you to a better place...
5. My bladder is still with me and will stay unless I have cancer of the bladder...the interstim scattered my nerve signals which was why I got relief...unfortunately...it has not been working as well and I am dealing with the urethra fire as well...it is beyond frustrating...but I change my program (it has 4), use the valium, take a pyridium, prelief and percocet (if I must as I hate how they make me feel) then while I wait for the meds to kick in I alternate Ice pack/heat pack on my urethra...once the pain let's up I do my stretching and an epsom salt/essential oil soak to help the muscles calm down and I can get a week sometimes before it begins again...I have also found unfortunately for me...one thing that seems to be flaring the IC urethra pain is when stool is backing up in my colon putting pressure on the urethra...an enema helps, but it does make the pelvic floor dysfunction worse for a day or two...but then I get some relief before it begins again...I have no regrets on the things I have tried to get pain relief....and I think we all have to do serious research on the pro's and cons of each procedure...try the least invasive first and go from there...I will be seeing my specialist for botox injections in July...hoping to break this new pattern...I am not sure what the cause is since I had IC for so long now...but had it under control for years...so I am now trying to figure out...what changed...so far the only thing I have come up with is the mesh implant...but for the help it has given me in other areas of breakdown in my body...I would do it again...I just have to figure out how to calm every thing down...I most likely will never know why or what is causing what after having so much done in there so all I can do is manage the pain the best I can and live my life despite it...
I do hope you have found some relief by now...I know it's hard to be chronically ill and in pain...but hang in there...keep seeking help and keep living life...please try the things I mention above to get you through the pain while trying to find the help from the dr. You might try acupuncture as well...it has great pain relieving qualities...I hope to get back to that soon as well to see if I can't break these patterns that are trying to over take...never give up hope!
I did get the botox and it helped my pain tremendously...unfortunately it didn't fix my other issues so I am having exploratory surgery in 12 days...I think it's well worth trying...for pain...mine is beginning to wear off now so I metabolize it a bit quicker then some but will get it again as soon as the Dr. allows me to!
I'm so glad it helped. What muscles did you have Botox? What type of ice and heat pack do you use for vagina? What exploratory surgery-what exactly does that entail? happy healthy new year! X
it was injected into the bulbocavernosus, ischiocavernosus, pubococcygeus, puborectalis, illiococcygeus, coccygeus, piriformis and obturator internus muscles...but the urogynecologist should examine you vaginally and feel what muscles are tight in order to have the best out come...He felt up inside to see what one's were contracted and painful...wrote it down so while I was under anesthesia he could inject it deeply...he also took notes so it could be used in FDA studies...documentation will make it easier to get insurance companies to pay for it...so he examined me then after 4 weeks and the muscles were completely different...all relaxed rather then contracted.
For heated rice pack...I bought mine on Amazon and love it...I use it all over as my pain goes way beyond my vaginal area...for ice which I do only use on my urethra (in the vaginal area)...I freeze a water bottle to put down there between my bare skin and clothes.
My exploratory surgery is for small bowel and colon obstructions as well as adhesion's, pelvic organ prolapse, rectal prolapse and to see what my mesh that is holding up my organs is up to inside me...so nothing to do with my IC but the catheter will definitely flare my IC...which I don't look forward to regaining control over it...maybe the botox will help that too and I won't flare! Fingers crossed!
That's horrible about your neice, she's so young! I hope she doing better. Thank you for all your details. I'm pretty much doing all that you have mentioned minus a couple things, which I'll do. It's amazing how much time we need to spend on ourselves just to function. I'm taking several Percocet a day bc my pain isn't manageable at the moment. Just did biofeedback w therapist and found my pelvic floor muscles are more than 2x tighter than normal so next week I'm getting another round of Botox to pelvic floor. It does help! Thanks for your great advice and encouragement! I agree w the whole nerve analogy, that's why I want to get it calmed down now and hopefully not go through 20 years of this, it's hard to get it down after that long, as you know too well. Take care yourself, God bless and be well.
Ladies there is a Facebook page that may be of interest to anyone suffering from pelvic pain. It is called chronic pelvic pain the mind/ body connection. I am learning so much about chronic pain! check it out.
There are people on there that have relieved their pelvic pain by using mind body work. It is worth an explore. There are several of us who feel let down by our medical care.
I too tried this and thought the mind/body connection is strong it will help but if you truly have a disease process it may not completely "fix" your pain...I have done so much of this through the years and trust me I have no regrets because it has helped me to be better at managing my pain mentally...but it did not take away my pain...so if it doesn't take away your pain don't think it's something you did wrong and just think of it as one more coping mechanism in your bag of tricks...
I am glad it works for some and am in no way saying not to try it we should try EVERYTHING non-invasive first, but it doesn't work for everyone...
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