Phantom Pain and Urgency, another possible side effect after cystectomy. - Interstitial Cystitis Network Support Forum

**Kara29** · 10-27-2006, 04:06 PM

Since the number of cystectomy patients seems to be rising for IC, I thought it was important to discuss a side effect that is common and normal and can go away. It doesn't happen to every cystectomy patient but when it does cystectomy patients are left with a lot of questions about it.

One of the most common side effects after a cystectomy and urethrectomy that can feel alarming to some is phantom pain and urgency. Over time these feelings for the majority of IC patients will subside with what the experts say is about a year. There are medications that can be taken to lessen these feelings. If you are one who suffers from the common after effect of phantom pain and urgency it's best to discuss treatment options with your doctor.

"Surgeons need to include the possibility of the occurrence of phantom bladder sensations in preoperative counseling, acknowledge and support postoperative patients by confirming the validity of their experience and by using interventions that can minimize the effects of phantom pain."

Research that tries to explain why this side effect happens:

Phantom pain and urgency that still may exist after our cystectomies and urethrectomies. Research 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. 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.

Again talk with your Surgeon or Doctor about treatment options that may work for you.

I suffered through it with my original cystectomy but after about two months it subsided. I also suffer from it with my Urethrectomy and Indiana Pouch, I am not at the point of it subsiding yet and I am at the 6 month mark.

This topic is important not to leave out because some of us that I know of personally are suffering from this and they feel alone and isolated because it's not something that it talked about much. Treatments for this are needed to be discussed so that those of us who are suffering from phantom pain and urgency can get some relief while waiting for it to subside. You don't have to suffer through it. There is help. Talk to you doctor about available options for this type of pain.

Those of you who are having this phantom pain and or urgency are not alone. It's ok to talk about how it feels with others who are also going through this and how we can talk to our doctors about easing it.

Kara

***Katrina*** · 10-27-2006, 05:05 PM

Thanks for sharing! I know you will lead us is knowing what everyones options are in this area!

**Kara29** · 11-10-2006, 11:13 AM

"Phantom pain often begins within a few days after surgery. Some people find that phantom pain goes away over time, whereas others have pain for many years. Pain that has gone untreated for more than six months to a year tends to be more difficult to treat. So, be sure to report pain to your doctor right away for more effective treatment."

This was quoted from the Mayo Clinic.

This is why I don't want to wait a whole year before treating my phantom pain because it's already been 7 months for me and I feel like I am running out of time!

Kara

Moonheart · 11-10-2006, 08:08 PM

Do you know if it is possible to have phantom Uterine pain after a hysterectomy?

**Kara29** · 11-11-2006, 07:33 AM

Anytime you have a body part removed, nerves are disturbed and or destroyed. I would call your doctor and ask about this. Also you may want to ask the ladies on the Hyseter Sister website. It's a website dedicated to those who have had or are going to have hysterectomies. Here is thier website: http://www.hystersisters.com/vb2/index.php

Good Luck to you!

Kara

Moonheart · 11-11-2006, 08:54 AM

Thank you Kara! I appreciate your help.

Take care!

ihurttoo · 11-13-2006, 07:34 PM

Quote:

Originally Posted by Moonheart

Do you know if it is possible to have phantom Uterine pain after a hysterectomy?

I had phantom ovarian pain for a short while last year after having a total hysterectomy. Fortunately, it went away after a few months. I really dont know if phantom pain is very common after hysterectomies or not. However, a good place on the web to find out would probobly be the hyster sisters site. If you havent been there yet, you should definately check them out. They were invaluable to me following my hysterectomy. The address is: www.hystersisters.com It is truly a wonderful site! You might try doing a search there on phantom pain, and see if anything comes up. Hope this helps! Hugs, Amy