Why some of us still have pain after bladder removal?

In my situation my first cystectomy went well but I still had my urethra. Over time my urethra became unusable and too painful so it had to be removed so I could get my urine out from somewhere. In my case, I had a continent urinary diversion. There were many dangers to this surgery, needless to say in this case I am lucky to be alive BUT, I was left with some horrible unexplained pain in the area where my urethra was removed. None of the doctors could really answer what was happening to me or when it would go away, so I went and did my own research. My primary care physician says that whenever I do this, it helps him tremendously on how to try and treat me when no other doctors will.

I gathered a bunch of information and put it into a paper form for those of us whom are interested in phantom pain and urgency that still may exist after our cystectomies and urethrectomies. It sheds some light on what exactly is happening to us and our brains and bodies and that it has the possibility to go away with time which gives a few of on here some hope. At the end I will list some of the medications that doctors are using to combat this phantom pain when it’s at it’s worst and most persistent like what I am going through and I know some others are too.

Here I go with my information collection:

We can suffer with severe pain, even when the painful part is no longer part of the body. Doctors and Researchers have learned that the central nervous system (the brain and the spinal cord) is capable of creating "memories" of pain that can cause the pain to persist. A patient may feel sensations in a limb which is no longer part of his/her body. This pain can affect mastectomy patients as well as patients with simple tooth extractions. And with time cystectomy and urethrectomy patients will be included in this list. In fact, these unusual phantom sensations occur in most people following amputation or in our case removal and reconstruction of our bladders. Sometimes this pain and discomfort may be similar to the pain that the patient had prior to the surgery itself or sometimes a patient may have the new pain. The sensations can be changes in size or position, or actual feelings of heat, cold, or touch. In some patients, these abnormal sensations include pain. Because the pain is experienced in a part of the body that is no longer present, it is called phantom pain. In other words, our brains are not oriented to fully believe and adjust to the removal of a vital body part. So even when a patient fully understands that an amputation or in our case bladder removal and or reconstruction has occurred, and it is in the best interest of their health, the patient’s brain may have difficulty adjusting and accepting this insult to the body. "For instance, in chronic pain there's often an emotional element. If a patient has post-traumatic stress syndrome, that could make the pain worse because there are overlapping disorders." Luckily, for most patients, both the phantom sensations and pain gradually resolve with time.
The actual cause of phantom pain is not known. Most authorities currently believe that both phantom pain and other phantom sensations are generated from the spinal cord and brain.
There are many treatments that can help with phantom pain, but no single approach is universally successful. In fact the best approach may be to mix multiple treatments.

Many of the treatments are associated with an amputation of a limb but these medications may be used for bladder removal and urethrectomy patients whom are suffering from phantom pain but it’s all based on what your doctor determines is right for you.

Medications”Doctors often try medications first. Although there are no medications specifically for phantom pain, several are used to help chronic pain of any origin. Keep in mind that no single drug works for everyone, and not everyone benefits from medications. You may need to try several different drugs to find one that works for you.

Medications to manage phantom pain
§ Antidepressants. Certain types of antidepressants may help relieve phantom pain, even if you don't have symptoms of depression. Doctors prescribe a lower dose for phantom pain than that for depression, so side effects may be less severe. You'll need to take this type of medication for at least one to two weeks before you notice an effect, and you may not receive the full benefit for four to six weeks. Some antidepressants may also help you sleep, which can make you feel better. Antidepressants that may provide pain relief include doxepin (Sinequan), desipramine (Norpramin), nortriptyline (Aventyl, Pamelor), imipramine (Tofranil), venlafaxine (Effexor) and bupropion (Wellbutrin).
§ Anticonvulsants. Doctors may prescribe an anticonvulsant drug such as carbamazepine (Carbatrol, Tegretol) even though you aren't having seizures. Carbamazepine is a drug used to control some types of seizures and for the facial pain of trigeminal neuralgia. Other anticonvulsants that may reduce phantom pain include gabapentin (Neurontin), pregabalin (Lyrica), lamotrigine (Lamictal), tiagabine (Gabitril), topiramate (Topamax), levetiracetam (Keppra), and zonisamide (Zonegran). As with other pain medications, they don't work for everyone.
§ Chlorpromazine. Doctors commonly use the drug chlorpromazine (Thorazine) to treat psychotic disorders such as schizophrenia. Sometimes it offers relief to people with phantom pain.
§ Central nervous system depressants. Clonazepam (Klonopin) is a benzodiazepine, a drug that slows down the central nervous system. It has many uses, including as a treatment to relax muscle spasms. Clonazepam may relieve phantom pain for some people.
§ Opioids or narcotics. Opioid medications, morphine and related painkillers, may be an option for some people. Taken in appropriate doses under your doctor's direction, they may help control phantom pain. However, you may not be able to take them if you have a history of substance abuse or lung disease. Even if you don't have a history of substance abuse, these drugs can be addicting.
§ Clonidine (Catapres). This drug is primarily used to treat high blood pressure. Because it affects pain pathways, it can also be very helpful in treating phantom pain.
§ Baclofen (Lioresal). This drug is a muscle relaxant and anti-spasticity drug. It can be used to treat nerve-related pain, muscle spasms and neuropathic pain syndromes — such as phantom pain.
§ Botulinum Toxin Type A (Botox). Botox may be helpful in relieving phantom limb pain and in reducing the number of attacks. Doctors will continue to study this drug for many possible uses, including pain control.
Nonsurgical approachesAs with medications, treating phantom pain with nonsurgical therapies is a matter of trial and observation. The following techniques may relieve phantom pain:
§ Transcutaneous electrical nerve stimulation (TENS). In TENS, doctors send a weak electrical current to specific points on the skin over a nerve pathway. This may interrupt pain signals, preventing them from reaching your brain. Although safe and painless, TENS doesn't work for everyone or for all types of pain. It's generally more effective for acute pain than for chronic pain and is often used with other treatments. TENS may be a good option to try for people who can't take or don't get relief from medications.
§ Electroconvulsive therapy (ECT). This treatment involves sending a brief electrical current to the head to stimulate the brain. Before the procedure, you receive a general anesthetic and strong muscle relaxants to control movement and pain. ECT is thought to alter brain chemicals related to pain sensation and mood. Doctors use ECT for depression and other mental disorders.
§ Acupuncture. The National Institutes of Health has found that acupuncture can be an effective treatment for some types of chronic pain. In acupuncture, the practitioner inserts sterilized stainless steel needles into the skin at specific points on the body. It is thought that acupuncture stimulates your central nervous system to release neurotransmitters, hormones or the body's natural pain-relieving endorphins. Acupuncture may also alter how your blood pressure, blood flow and body temperature are regulated and respond to pain.
Other experimental treatments include other nerve blocks and destruction of nerve tissue (nerve tissue ablation). No clear evidence has yet shown these treatments to be helpful.”

So, I am on my journey to try to help this phantom pain/urgency because in my case, I can’t just wait for it to go away on its own. My phantom urgency is too severe to sit and wait so I have to be proactive and find a way and a doctor to temporarily relieve it until it hopefully goes away forever.


Kara