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I have inerstistial cystis again.and have had ongoing pelvicpain,I also have they say a small fibroid?

By November 18, 2010 - 7:27pm
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The only option so far was they offered me a hysterectomy,but the doctor stated that the fibroid would still be there,and Im alittle confused?Im am waiting to see a urologist but I have to wait I am on Elmiron.

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I have interstitial Cystitis, chronic pelvic pain sydrome and had a hysterectomy at age 23 so I know that was not part of the problem. However I had a meditronic device implanted in my hip about 2 years ago. It made it possible for me to go without constant pain. I had tried all the above mentioned treatments nothing worked. But this device seems to help to some extent. hope this helps.

October 27, 2011 - 9:04am
HERWriter Guide (reply to vcurnutt)

Hi vcurnutt

Thanks for your suggestion! I hope it will help our members with IC and glad is has helped you. We depend a lot on women helping other women so your input is much appreciated!

October 31, 2011 - 10:47am
HERWriter Guide

Hi Substitute

Thanks for your question and for finding EmpowHER!

I am so sorry you are dealing with I.C. Why is your doctor suggesting a hysterectomy? For what, exactly? I do hope that you can find some alternative to a hysterectomy if at all possible.

Where is your fibroid? He may be saying this because it's not in the actual uterus and he plans only a partial hysterectomy (meaning the ovaries, cervix etc would remain). Has he told you the location of the fibroid? What are the plans to remove the fibroid, has that been discussed with you yet? A hysterectomy is very serious and not done for one fibroid. I'm as confused as you are!

It sounds like "hysterectomy" is just being thrown out there (like in the old days) without a whole lot of thought about it. This is not like the old days - hysterectomies are NOT standard!

Please take a look at our interstitial Cystitis page where you can read about alternative therapies and the questions posed by other women just like you. I'd advise making a list of similar questions for your own doctor.

Treatments include:

There is no treatment to cure interstitial cystitis. Treatment is aimed at relieving symptoms. Treatment depends on your symptoms. You may have to try several different treatments before you experience relief.

Treatments include:

Bladder Distention
Some people experience relief after the bladder distention (during the cystoscopy) is done.

Bladder Instillation
During bladder instillation, a "wash" is put into the bladder through a tube in the urethra. It is held for anywhere from a few seconds to 15 minutes and then voided. There are several different types of solutions used. Some coat the bladder and are thought to decrease the inflammation. An example of this is called Hanno "cocktail," which is comprised of heparin and sodium bicarbonate.

Medications may include:

■Bladder coating—taken orally to coat and protect the bladder
■Antidepressants and pain relievers—for pain relief
■Antihistamines—may help stop the cycle of inflammation
■Antispasmodics—may alleviate frequency and urgency of urination

There is no research linking diet to interstitial cystitis. But many people find that changes in diet can help relieve pain. Different people have different "trigger" foods. Foods commonly reported to aggravate interstitial cystitis include:

■Artificial sweeteners
■Acidic foods
■Carbonated beverages

Transcutaneous Electrical Nerve Stimulation (TENS)
TENS uses an external device that sends mild electrical impulses into the body. It has been helpful in relieving pain and decreasing frequency of urination in some people.

Interstim Therapy
Interstim therapy uses an approved device which has been reported to possibly provide symptomatic relief in some patients with interstitial cystitis refractory to more conventional treatments. This is an electronic device which is implanted into the sacral nerve roots of the spinal cord. Electrical impulses are sent to these roots in regular intervals. This is meant to modulate the neural output of the pelvic nerves supplying the bladder.

While some patients have reported some relief, they appear to be in the minority. Doctors do not know yet what makes the device helpful.

Bladder Training
Some people are able to train their bladder to have better control by setting a regular timed schedule for emptying their bladder. The amount of time between voidings is gradually increased. Bladder training should be attempted only after pain relief has been accomplished.

Surgery is a treatment of last resort. It is used after all other treatment methods have been exhausted and if the pain remains severe. The usual approaches include either increasing the capacity of the bladder by adding a segment of bowel to the distensible portion of the bladder (ie, bladder augmentation) or by removing the entire bladder (ie, cystectomy). This surgeries are rarely done for this condition. Many people continue to have pain even after surgery.

Back to the other stuff - can you explain a little more about the reasoning behind your doctor's opinions? I'm just not understanding them. Unless you are a bit lost on this too - let me know and we'll continue our search together.

I hope to hear back from you soon!


November 19, 2010 - 2:46pm
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