I AM HURT, ANGRY, AND SAD,What to do about PHANTOM URGENCY?

**Kara29** · 06-07-2006, 03:55 AM

I have no infection the results came back negative and my blood work also came back negative. So after 4 weeks of a nice life, I am now experiencing phantom urgency with no apparent reason. The Urologists Office that was supposed to take care of me here says they can't do anything without my operative report. Well we all know how long those can take to come out. So in the meantime, I am supposed to suffer like a dog with 2 broken legs after major surgery and wait for records to be sent which could take days, weeks, or months. I've put in 3 calls to the local Urologist who said he would take care of me as soon as I got home from NY. I called back this morning and they say they have no record of my calls at all.........I told them ecxatly when and whom I spoke with and on what days. They say there is nothing they can do for me. I called the Dr. who did my surgery in NY. I am just sitting here thinking of how the surgry failed and I am stuck with this phantom urgency that is a 10 out of 10 and no one cares. It will go away they all say. Well that's lovely, what am I supposed to do while I wait for it to go away. The reaon I went in for the surgery is because all meds, previous surgeries, procedures and antibiotics failed me. This surgery was the last option. Pain Killers Don't seem to work for me for this or else I would be using them instead of having my urethra and bladder reconstructed, that would have been much easier. If nothing worked then for the urgency, how is it supposed to work on the urgency now? My doctor is in NYC and I need help NOW here in CNY!!!!!!!!!!!!! They just called and said the records will be at my local urologist office sometime tomorrow. In the meantime I am supposed to wait like a suffering animal. That is how I feel anyway!

Tears are just pouring out of my face. No one wants to help! NO ONE!

The last time I asked my surgeon in NY about phantom urgency, he said he didn't know how to combat it? SO WHAT THE HECK DO I DO????????

Oh, and telling it to go away, DOES NOT HELP! It's there 24/7 and does not budge on the pain scale. 4 weeks of sheer JOY.

I do have a therapist and psychiatrist and primary care doctor and they are all referring me back to my original surgeon in NYC!

I am at a loss for words. I am hurt, angry, and sad!

Kara

***SharonA*** · 06-07-2006, 04:05 AM

I am so sorry you are going through this. I don't have any advice. All I have is a soft shoulder and lots of prayers for you.

**Kara29** · 06-07-2006, 05:06 AM

My surgeon from NY just called me and says that there is no urethra there anymore so trying an antispasmotic or anticholineric (lke ditropran or detrol)won't really scientifically do anything becuase there is no bladder tissue for those meds to work on anyway. He said it could be phantom urgency but is not sure how to take care of it. He asked me where I felt the pain and I told him I felt it where the urethra used to be and he said that if the feeling was up more where my pouch was located one of the antispasmotics would actually help because the bowel that my pouch is made out of still has bowel function and can have peristalsis and spasm and cause some pain, but it's not there. He says that there are nerve endings where the urethra was taken out and they are probably very sensitive right now and they have sensory or memory tissue in them that remembers the pain from before. He says it's probably irritative there. The problem is that they can't remove the nerve supply to that area. So will it go away? We dont know the answer to that. Is it phantom? We don't know the answer to that? Is it sensory? Most Likely! How do we fix it? There is no answers right now. He is calling in some sort of anticholinergic but says he doesn't expect it to help but he's not afraid to try anything so I am going to pick it up. It's a med I have never tried before so maybe, just maybe there is a chance. He says he does not know why 4 weeks went by with no problem and then bang! He's young and learning too.

At least he called back to explain what he could that was better than nothing at all.

Kara

**ICLori** · 06-07-2006, 05:11 AM

Oh, Kara, I'm so sorry! I'm glad though that the one doctor is at least trying to help you. I sure hope the anticholineric will help you and you'll soon be pain-free again.

Blessings,
Lori

**hoping4acure** · 06-07-2006, 05:13 AM

Kara, again, I am so sorry you are going through all of this. It just

I wish there was something I could do.

Sending warm hugs and I hope you feel better soon. You will remain in my prayers.

vm · 06-07-2006, 05:19 AM

Any idea what kind of meds help amputees with phantom pains???? I wonder if any of those would help at all?

**Mare** · 06-07-2006, 05:34 AM

I am so sorry to hear that this is happening to you. At this point, this suggestion may seem a bit strange, but have you considered using acupuncture for the relief of the pain and urgency? It may not help due to the removal of all the tissue, but you could call an acupuncturist and see if it will help. I have personally gotten relief from pain using one. Just a thought. Maybe this less invasive approach is worth a shot when the more traditional procendures seem to not work. Best of luck, I hope that you find some help! Mare

**Kara29** · 06-07-2006, 06:43 AM

My local urologist's nurse practioner called to make an appointment for today but since my Doctor in NY called in the Enablex I am going to wait to see the local doc next week to report if the Enabalex worked or not.

VM I AM WONDERING IF A ANTICONVULSANT THAT WORKS ON NERVE ENDINGS WOULD WORK. I ALREADY TAKE NUERONTIN AND KEPPRA BUT MAYBE THEY ARE NOT THE RIGHT ONES.

Good Idea though about the amputees. I am going to heavily research it and see what they take.

I have an appointment with my Pain Management Clinic June 21st. They would be the ones to prescribe a medcation like that. I am going to do my homework as usual.

But let's pray that by June 21st this phantom pain will have died down literally or go away!

I finally got through to my local Urologist and he was willing to see me today but I wanted to try the Enabalex first, then I see him on Tues June 13th. Then I see my surgeon in NYC on June 16th to have my Urostomy Catheter taken out and to teach me how to self cath, then I see my local urologist again on June 20th to take out the Suprapubic Catheter and to check on my status of the phantom pain. Then I see my Pain Management Doctor on the 21st to catch her up and I may call her ahead of time and tell her about the phantom nerve pain so she can research it herself before I get there. So at least I got some people to listen to me today.

I still pray for a miracle! That's all I want for my 30th Birthday on Sunday June 11th is a miracle!

Thanks for listening to me rant and rave and vent today and yesterday. I appreicate all of your love and support and great ideas!

Love,

Kara Lynn

**AshleyM** · 06-07-2006, 07:06 AM

(((Kara))),

I am pretty new here, but have read your story, and I just wanted to let you know that I will be praying for you!! I am so very sorry that you are going through this

I know my situation is so different than yours, but I actually had to have my colon removed in July of 2004, and I know that in my case, recovery was much harder in the beginning than it is now. So I am praying that this problem you are experiencing is just a temporary one, and that you will soon be feeling better!!

Do you mind if I ask, what is Phantom urgency?? I have never heard that term before. I wondered if you might explain it to me??

Lord Bless You, and please know that you are in my thoughts and prayers!! Please keep us posted on how you're doing, okay?? That gives me a better idea of how best to pray for you. (((BIG HUGS))) to you, and please know that I am just an email or a PM away if you need someone to talk to!!

**Kara29** · 06-07-2006, 07:19 AM

Phamtom Urgency is like when you lose an arm or a leg but you still feel the pain of where it used to be. In my case I had my urethra removed and I still feel it, like it's still there but it's gone. That is where phantom urgency comes in, meaning I feel like I have the urge to urinate all of the time but I don't have that body part anymore. It has something to do with the nerves and for some people it goes away with time and others need more intervention.

Thank You for your prayers!!!!!!!!!

Kara Lynn

**AshleyM** · 06-07-2006, 07:25 AM

Oh dear, I had never heard of that... I am so sorry!! Please know that you will be continually in my thoughts and prayers. I hope so much that this will just be a temporary condition for you. I cannot even imagine how you must be feeling

I do hope that you will get some relief in time to celebrate your 30th birthday. Bless your heart...you are so young to have dealt with so much. My heart goes out to you.

Prayers going up for you, and please keep us posted about how you're doing!!

**akrose** · 06-07-2006, 10:47 AM

Kara- do you remember how Lesa and Judith stated that they had this urgency (phantom) problem in the early days of their surgery, but they somehow ignored it (I think that is impossible, but they did it anyway) and eventually it relented and left. In what I know about amputee pain, the pt will state that their amputated leg hurts, and rather than tell them over and over again that the limb is gone, we divert their attention to something else, thereby getting their mind going in a different direction. Also, I was wondering if a neurosurgeon ( a really good one) could remove the nerve supply to the area that once held the urethra, since you know longer need those nerves to regulate micturition (voluntary urination). It is an idea? I have also been praying for complete pain relief for you, lara, lesa,carly every night, because you are the true courageous ones, who were determined to see the end of i.c. in your lives. I hope to join you some day.

**steelerfan** · 06-07-2006, 10:59 AM

I hope you start feeling better soon. I will keep you in my thoughts and prayers.

**ICLori** · 06-07-2006, 11:13 AM

I hope so much too it's just a temporary thing and will go away very soon.

Blessings,
Lori

**Bianchi** · 06-07-2006, 11:33 AM

Oh my gosh, Kara, I am so sorry, after all you have been through. Would any kind of tranquilizer help, like xanax, or something like that?
Take care,
Bianchi