Pelvic pain, burning VJ/ prostate, urinary type problems support group

[[fr...]]

  Yes please let me know about the Uribel.  I have already had this burning pressure etc for over 5 months and I have 14 mg. of V to taper.  Very discouraged as this s/x will not let up.

[[ci...]]

freeze, stick to your smart taper plan, slow but steady. Your sxs will ease up over time, try not to get discouraged, I know it is easier said than done.

 

Always, cindy

[[ol...]]

Freeme , I see you had surgery.  How did it go? Are you getting any relief from back pain? I'm Sorry  your bladder is stll acting up. Mine comes and goes with no reason. I keep a chart and it is random.

[[fr...]]

  Yes, I had the surgery on 1-15.  Doing well with that, still have some spinal issues but hip and leg pain much reduced.  I was hoping the bladder , v, urethra pain was somehow related to the spine but it wasn't.  I think its w/d from the V.  I have started tapering but it is so hard.  The cut and hold isnt working out so well for me, might have to try MT with liquid.  I have 3 drugs now to taper but am going to start with the valium and see if the bladder spasms let up.  How are you doing, better I hope.

[[ol...]]

I am hanging in there. It's good you are getting some relief from the surgery. I am 100% convinced the drugs cause the bladder symptoms.

[[...]]

hi everyone,

 

I too have a lot of issues regarding mostly burning bladder pain but this also includes at times rectal and vaginal pain.  The pain level is often unbearable and it appeared for me only around my 26th month off benzos.  When I look back to when I was taking Effexor (venlafaxine) some years ago I know it was negatively impacting my bladder so I do suspect the benzo in this and some on bb seem to blame Z drugs in particular and I was once on zolpidem.

 

Alongside the pain I have at times a very itchy crotch (which I've had for over a year and my back passage is especially itchy) and problems with beginning the pee process.  Often I don't have much to pee with and frequency is also an issue.  Sometimes I think I'm peeing battery acid as the burning afterwards is awful.  Every test I've had has been negative.  Why I should have this after so long off diazepam I don't know but I have had a lot of stressful events recently so I believe this is also a factor.

 

I haven't read all of this thread but do others here believe they have interstitial cystitis?  Some doctors I know don't believe in this diagnosis. I have had some benefit from trying more alternative treatments but  my own doctor has suggested amitriptyline and other psychoactive drugs like carbamazepine but I'm not prepared to fry my poor brain all over again.  Has anyone tried Urispas (flavoxate hydrochloride), I have been prescribed this but so far I'm too scared to try it.

 

Here is what I'm trying at the moment:  Marshmallow root tea and tincture, colostrum, and quercetin. And lots of water.

 

At the moment I can tolerate these supplements and I do think I'm getting some benefit.  I'm also going to stick to an alkaline diet which will benefit my gut as well.  Hope this works because these a pretty scary and painful symptoms.  Anyone found anything to relieve pain with their bladder I'd be keen to know.

 

Sending sympathetic and healing thoughts to all of you suffering with these issues.  pris       

             

                                                           

 

 

                                                           

 

                                                           

[[go...]]

Hi Pris. I went thru all of the same pain you are describing. Luckily mine ended in month 6. It is different for everyone. Be careful of amitriptyline, my doc tried to prescribe that to me also. It can also cause issues with your bladder. I take something called Continence by Soloray for frequent urination. It's all natural. Here are some other things that helped and still help me.

 

1. Sleep with a gel ice pack between your legs. (This is the only thing that gave me relief to get some sleep)

 

2. NEVER and I mean NEVER drink any type of soda. It is the WORST thing for your bladder. I will never touch it again.

 

3. Stay away from anything acidic. (I love tomatoes but I will no longer eat them)

 

4. Stay away from caffeine at least until you feel better. (I took a 6 month break from caffeine but now I can tolerate it just fine)

 

5. Water. Water. Water. Drink tons of water. The more you drink the better your bladder will feel. When you drink more your bladder learns to hold more and you actually pee less. Just stop drinking three hours before bed.

 

You may already be doing some of these things but this is the best advice I have. All you can do at this point is wait it out. You WILL get past this. I thought I have anything from IC to bladder cancer and I am fine now. Also, stress is a direct link to bladder problems. Maybe read some books on managing stress. I just read "Say Goodnight to Insomnia" by Dr. Gregg D. Jacobs. It has a lot of helpful tips for stress and insomnia. I love it so much I just bought it for two of my friends. I really hope you feel better soon 

 

Kat

[[...]]

Hi Kat,

 

Thanks ever so much for your reply, I wasn't sure whether anyone could offer me any further advice as I've tried a lot of the usual things for cystitis.  I'm going to try to re-train my bladder to hold more and keep to an alkaline diet but I do love my cups of tea.  I really need something for the bladder pain because when it hits it is just sheer agony and today has been one of those days.

 

I'll look into Continence.  I have to be careful with what I try out.  The quercetin has vitamin C which I think has given me loose stools.  Wonderful.  Sodas are easy for me to avoid but not so much the stress.  At the end of the day you are right, I'm going to have to wait it out and try to manage stress a lot better.

 

Glad to hear your bladder problems have resolved, it gives me hope.  Thanks again for the advice.  pris

[[Co...]]

So now my uterus comes down halfway my vagina in the evening, I can push it back up but wth!!

I seriously don't know anymore

[[fr...]]

  Are you seeing a Dr. about this?  It sounds serious, I would check on this if you are not.  They have things you can do about prolapses, this is different than the bladder spasms etc.  Hope you get some help either way, its horrible symptoms all the way around. 

[[Co...]]

I can't do this anymore  :'( I don't trust doctors.

I just can't go on like this anymore.

I am so alone. So screwed up. I just can't deal with this. I'm non stop crying since I discovered this.

[[fr...]]

  I know how you feel, I have to see a urologist myself and I have been putting it off as I am so over Drs.  Please do see one as this problem might actually be one that can be solved without meds.  They have things called pessarys I think, google it and see about it.  It might be something to help the uterus stay in place.  This burning pressure vaginal, urethra feeling and pain is the absolute worst.  I hope you can get some help and feel better.  I am at my wits end also but just taking it day by day.

[[lk...]]

I also also suffer burning and urinary frequency that is almost unbearable at times.  I now know that it is a withdrawal symptom of withdrawal.  I have found that using Aveeno Baby Diaper Rash cream has helped during a flare, for the burning.  I figure if a baby can use it so can I.  Not sure if using this has been mentioned before, I'm kinda new to this.  I am hoping once I start to taper from V that  it will get better..I have been to numerous urologists and have had every test in the book....They just look at me puzzled and give me vesicare or toviaz...both of which don't work.  I am not sure what is worse the frequency or the burning..Some days its almost unbearable.... :'(

[[Bu...]]

I was having frequent urination, burning/painful bladder, low back pain/burning etc. 2 months after starting Xanax.  Never had these symptoms before.  Docs thought it was urinary tract infection but, tests always negative.  Found a book called Along the Healing Path, Recovering from Interstitial Cystitis, by Catherine M. Simone.  Very good book.  Found a knowledgeable urologist who agreed that it was IC.  I find Uribel is helpful for a bad flare.  The IC Network has a lot of good IC info and I really have to watch my stress, diet and sitting too long (vulvodynia too...ugh).  I find that Desert Harvest aloe caps help keep things quiet.  It has the ingredient that can cause loose bowels removed from the aloe.  I get too much of that too.  I'm really hoping that this is all benzo related and will get better after recovering.  Best wishes.

[[lk...]]

I too was on Xanax and I have just switched to V to stabilize and then hopefully taper.  Both of the urologists I went to said I don't have IC, but I am very careful what I eat because certain foods do trigger more problems (if that's possible)  I think I will get the book, I have the IC application on my phone.  I will do anything if I think it will help.  Will also try the Aloe.  Just trying to hang in there   Thanks for the info.

[[fr...]]

  Does the Uribel help?  I have a bottle of that here but one of the side effects was heart racing, palps and I already get that so I was too scared to try it.  If I thought it would help any I might chance it.  How do you feel when you take it? 

[[lk...]]

The urologist I am currently seeing, gave me Uribel.  Did not help me at all. I think it actually rev'd me up and made things worse.  But that is me and maybe it will work for you.  If you do try it, remember you pee is going to be blue,green....even after you stop taking it for a few days.

[[fr...]]

  I think I"m too scared to try it.  The OTC pyridium never helped me either.  If its w/d I guess nothing except getting off is going to help.  My pain med helps most of the time but I want off that also.  So sorry I ever started with these meds but pain is pain and I had to. 

[[lk...]]

I believe it is definitely w/d symptom.  There are too many people with the same problem on BB....I just tell myself, this too shall pass and do the best I can do to make it thru another day. All the OTC medications have not worked for me either, and I think I have tried them all.  You will heal, and so will I, its just going to take time...hang in there

[[ci...]]

Since Sept my bladders spasms and frequency to urine and pressure has been horrific. I have had 2 confirmed UTIs since Sept, and other times no UTIs, but moderate blood in urine. I have been on 3 rounds of AB (macrobid and bactrim). I was also given uribel but have not tried it. If one dose does not work, then you could just stop  it. The pyridium never gave me any relief so I doubt the uribel would.

 

I always make sure when the bladder sxs rev up to drop in to the urologist and provide a urine sample. I just had a CT scan, ultrasound, blood work. The ultrasound showed I retain urine, which seems to be a problem for some of us in WD. Since the bladder is a muscle, and muscles are affected during WD. For women it may help to use the Kegal exercise to make sure you expel all your urine.

 

Read lost dog success story he had problems with urine retention and healed at 22 months.

[[Bu...]]

lking4peace:  You're welcome!  Aloe is soothing and healing and I think it helps my GI issues, too.  Hope your switch from Xanax to valium is going well 

 

Freeme:  I don't have any symptoms from taking Uribel, but I don't use much and not often.  I worry about the side effects, too   I find if I forget or don't take enough aloe caps, I get an IC flare so I try to take some every day as a preventative measure.

 

Cindys:  Appreciate how you pointed out that the bladder is a muscle and that benzo w/d affects it.  I never thought of that-it explains a lot of the symptoms.

 

Have a good night 

[[lk...]]

I also liked how you pointed out the bladder is a muscle...that explains a lot

 

Also I noticed that you have had adrenal fatigue.  I also had that and was prescribe Cortef for it.  But I stopped using it because of eye problems. Was there anything natural you used that helped?

[[ol...]]

That does make sense!  Good thinking Cindy's 

[[fr...]]

  I also have the urine retention problem.  Since my last cut I feel the urine stream is stronger so I hope getting lower on my dose will eventually solve this issue.  Has anyone else had tongue burning also?  That was my first symptom when I crossed over from Ativan to Valium.  The tongue and the vaginal tissue are both mucousal tissues so makes sense that burning could affect both.  My tongue is burning awful today.  Some days it is jsut about gone.  The vaginal burning is always there but it also can be not so bad and sometimes awful.  I can't plan much because I never know when it might be at its worst and I can't go out when I'm in so much pain.  I will try the aloe caps and also have the baby rash cream here, will try that.  So emotional and physically drained from this problem.  I pray for an answer every night and I guess when its ready it will go but I have so long to go in my taper off 3 meds that its depressing.  Hope everyone has a better day and less burning today.

[[lk...]]

I know how horrible the vaginal burning is, and I also ended up at urgent care with oral thrush... Hang in there, the vaginal burning does go away. I got windows at first, and then when I made the jump from xanax to V it got much better.  Still there off and on, but mostly off.  I found that baths with baking soda and oatmeal were extremely helpful. At least for a moment it felt better. Still trying to stabilize on V before I start to cut. Hopefully it will get better and better, and yours will too