Health Organization for Pudendal Education

Hi has anyone had any issues with Interstistial cystitis and bladder pain
I am new to the group and have the following health issues , back pain, trouble when sitting,chronic pelvic and vulver pain.I also have numbness in the legs and feet. I have been told I have Interstistial Cystitis.Would appreciate it if anyone could tell me if they have heard of IC.

IC was my only issue for 20 years before I began to develop neuropathies (feet then pudendal). The underlying problem with my pelvic structures was the same for both. IC can be caused by several factors but one factor is any neuromuscular problem in the pelvic area. The nerves to the bladder will pick up faulty signals from surrounding neuromuscular disturbance, and react with IC. Also, when you say you are told you have IC, was it definitively diagnosed with cystoscopy and hydrodistension? Many people with pudendal neuralgia have bladder problems, "neurogenic bladder", without having IC.
It is not at all unusual to see bladder problems, bowel problems, Pudendal nerve problems, pelvic pain, back problems, leg problems together. The structures of the pelvis are very interdependent; and a problem in one can cause a "domino effect", leaving it difficult to even figure out what part of the damage came first.

By the way I should add (sorry, a little distracted, A/C is out and it'll be over 100 degrees today): You will probably do much better sticking on this site and treating your bladder as only part of a complex pelvic pain disorder, than you would be to focus on bladder treatments such as instills, etc. When I was first diagnosed with IC in the 1980's, they acted like it was just a bladder problem and tried to treat my bladder without success. After I started getting neuropathy and went to Physical Therapy, my bladder was the first thing to respond to PT and the easiest part of my disorder to resolve.

Thanks so much for the reply and great advice, I lived in Houston for a few years and had bladder instills,DMSO Heperin etc.Have been on all meds possible, Im now living in australia, but will be moving back to Houston next year. I really hope to try some physical therepy on the pelvic floor. It just hurts to think about it. I have been on the ICN support group before, This is run by a wonderful lady called Jill Osbourne.But I think I will try to stay with the bigger picture as from now as my symptom are so like many here.
my main problem is vulver, clitoros andPelvic/bladder pain. It is so out of controll at times. It seems to lessen with what foods I eat. If I stick to no acidic foods and a Gluten free diet, I can control it quite well.THough when the flares come all hell lets loose. I dont understand why I have the restless leg syndrome, also when I am very sick, I cannot see very well. I find it very hard to write or read when I am sick as my vision is so blurry. Im wondering how this is going to read , as im feeling that way now.But I was so exsited to have a repy. Thankyou so much.

Hi there Torbjorn and welcome to the forum.

Your pain with sitting does sound suspiciously like PN.

I was just wondering - what meds are you on at the moment? And is there any med that you have recently stopped? Blurred vision can be a side effect of some of the meds that are used for pain relief, something like this is not desirable to say the least. And I am wondering about the restless leg syndrome too.

Torbjorn,

I have restless leg syndrome, too. It slowly got worse over the years. After my surgery, when I had the pain pump in for three weeks, the RLS disappeared. When the pain from the surgery started after the pain pump was removed, the RLS came back. I take requip for it and my doctor lets me use one to three a day to keep it under control. If I don't use at least one a day, the RLS comes back. It must be caused by pain and I have great hope that when the pain is gone so will the restless leg.

Before my surgery, I had all your symtoms but inside of IC, I had incontinence. Since the surgery, the incontinence is gone. Thank goodness.

I hope that you find real relief from your pain, soon.

Kate

Hello Torbjorn,

Some of the pudendal neuralgia docs think that PN is one of the causes of IC so you may very well have come to the right place and I hope you can find some answers here.

Not sure what causes restless leg syndrome -- I've had it for years and regular brisk walking seems to help more than anything but I know walking can be difficult for some of us on the forum. The National Institutes of Health says it can be related to peripheral neuropathy :

What causes restless legs syndrome?

In most cases, the cause of RLS is unknown. However, it may have a genetic component; RLS is often found in families where the onset of symptoms is before age 40. Specific gene variants have been associated with RLS. Evidence indicates that low levels of iron in the brain also may be responsible for RLS.

Considerable evidence suggests that RLS is related to a dysfunction in the brain’s basal ganglia circuits that use the neurotransmitter dopamine, which is needed to produce smooth, purposeful muscle activity and movement. Disruption of these pathways frequently results in involuntary movements. Individuals with Parkinson’s disease, another disorder of the basal ganglia’s dopamine pathways, often have RLS as well.

RLS also appears to be related to the following factors or conditions, although researchers do not yet know if these factors actually cause RLS:

Chronic diseases such as kidney failure, diabetes, and peripheral neuropathy. Treating the underlying condition often provides relief from RLS symptoms.
Certain medications that may aggravate symptoms. These medications include antinausea drugs (prochlorperazine or metoclopramide), antipsychotic drugs (haloperidol or phenothiazine derivatives), antidepressants that increase serotonin, and some cold and allergy medications-that contain sedating antihistamines.
Pregnancy, especially in the last trimester. In most cases, symptoms usually disappear within 4 weeks after delivery.

Alcohol and sleep deprivation also may aggravate or trigger symptoms in some individuals. Reducing or completely eliminating these factors may relieve symptoms, but it is unclear if this can prevent RLS symptoms from occurring at all.

I'm sorry to hear about your vision problems. That must be pretty annoying on top of everything else.

Violet

I wonder if the vision problem could be optical migraines? You would have to do some reading on the different kinds of visual problems one can get with migraine syndrome, and see if it fits. While at times I get painful headache - type migraines which do include some visual changes such as tunnel vision or dim vision, I also get purely optical migraines which are painless and appear as a band or smudge of shimmering light withing my visual field. If I don't treat same as I do for a headache- type migraine (high dose ibuprofin and caffeine), the obstruction of my visual field sometimes will enlarge to the point where I am almost blind.
There are several mechanisms via which a migraine syndrome can be related to a pelvic pain syndrome: my migraines started at the same time as my IC because I had sustained a pelvic joint injury with kinetic compensation in my neck (kinetic compensation means that, say your pelvis is twisted left, you are not going to always be facing left and walking diagonally, but rather something, most often the neck, will habitually twist in the opposite direction to keep you facing forward).
Not sure if that's it but just venturing a guess, you might want to research optical migraines and see if it fits with the blurred vision you are describing. If so, heavy doses of ibuprofen and caffeine might clear your vision; if your general health indicates you can safely use those products.

Thankyou all for replying. I was trying to figure out why The blurred vision comes, I think it is when I am getting the pain at it worst. A typical day for me would be to wake up. feeling very tired and wanting to always empty my bladder. I lie sometimes thinking I cant get up as IM to tired ,but my bladder is bursting.Then to the toilet , relief. Then pelvic pain,back pain, after an hour or so I get Vulver pain. It moves around one hour in the front, next the back, then the bladder.the only relief i have is when the pain moves from a different place.i cant imagine having pelvic physio where do I start. I do take Lyrica, and oxcodone TRAMADOL.

Hi Torbjorn,
If you go to the home page you will find a list of Pelvic Physiotherapists, hopefully there will be one near you. I do hope they can help you with your problems. Take care.