Interstitial Cystitis, Painful Bladder Syndrome, Vulvodynia, Fibromyalgia

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New Member

Date Joined Feb 2018
Total Posts : 1
   Posted 2/26/2018 2:51 PM (GMT -6)   
Hey there,

I'm a 27 year old woman from germany (so if I don't express myself correctly please bear with me) and new in this forum and would be curious about your opinions, thoughts and eventually suggestions regarding my pain situation.


I have pain since almost 8 years by now... I can't exactly tell how it all started but in 2010 I started to have very intense pain in my bladder. It might have been either a bladder infection or from biking since during this time I have been using my mountain bike a lot. The pain got so bad that I couldn't sit on the seat of my bike anymore. I went several times to hospitals because the pain got so excruciating and I could barely leave my flat or the bathroom.


My pain ranges from a burning sensation to a stinging pain like with a knife. While the burning is mostly in my bladder and urethra as well as in my vagina and vulva, the stinging I feel in my pelvic floor. I also have pain when pressure is put on the bladder whether from inside or outside and when my bladder fills. Sex is almost impossible and after orgasm I have very intense pain also in my ***oris (the pain is always there but gets worse after it). There are also certain foods and drinks which cause me pain like coffee, green and black tea, cola, fruits and vegetables, licorice, juices and alcohol.

Additionally, I have pain in my arms without doctors knowing what it could be. I have been to orthopedists and neurologists already.


I have taken various antibiotics, painkillers which didn't help much, tricyclic antidepressants, homeopathy, instillations and supplements which got suggested by members of this forum but also on other sites including marshmallow root, frankincense, quercetin, bromelain, ginger. I have also tried some doctors suggestions, I might not remember everything now. I've also had a TENS device to strenghten my pelvic muscles and later on I've tried reverse kegels.


So far, I've only had two diagnosis by doctors. One is pudendal neuralgia and the other fibromyalgia. Both got rejected by several other doctors so that I'm feeling lost and alone now. I've had various tests done by doctors like cystoscopies, laparoscopy (due to suspicion of endometriosis), urodynamic, uroflow,..

Please Help

I've been to so many doctors, to clincs for weeks, had several tests and precedures done without any results and conclusions . I would be so thankful if any of you would have ideas and suggestions what else I could do or try and if you think I might have IC or PN (pudendal neuralgia)

Thank you in advance for reading and also for any replies

Kathy confused

Veteran Member

Date Joined Dec 2012
Total Posts : 890
   Posted 2/26/2018 5:21 PM (GMT -6)   
Pelvic pain can be severe and excruciating owing to the high concentration of sensory nerve fibers that innvervate the urogential anatomy.

The pedundal nerve is a primary conduit of sensation innervating the lower pelvic anatomy. A diagnosis of pedundal neuralgia would be an appropriate diagnosis that would explain your symptoms. Personally, I would not dismiss a diagnosis of neuralgia as lacking or a diagnosis that is insufficient to cause you to wonder and seek additional findings.

An absolutely GREAT book on pelvic pain is titled “A Headache in The Pelvis,” authored by David Wise. It is a widely acclaimed book full of insightful information that explores etiologies of pelvic pain, tips on how to communicate with physicians and ancillary clinicians as to your primary concerns and how pain affects your life, a full discussion of available medical treatments and holistic avenues. The book is now in its 6th edition. It is available worldwide in several languages. Amazon carries the book. You can go to Amazon and read reviews - highly recommended.

Another valuable book is titled “Pelvic Pain Explained: What you need to know,” authored by Stephanie Pendergast. This book is also available on Amazon.

Pelvic pain is often a frustrating experience for those afflicted. It defies the expected medical model of going to a physician, receiving a defined diagnosis, and a prescribed treatment or medication that solves the presenting problem. The origins of pelvic pain are often multi-factorial - with anatomical, physiological, and psychological overlay. Care of pelvic pain most often requires an interdisciplinary approach that includes a urogynecologist, a physical therapist with pelvic floor specialization, biofeedback, and a psychologist. It may also include medications to dampen sensory nerve sensitivity or anti-epileptic medications, trigger point injections with lidocaine or Botox, and/or surgery to decompress entrapped nerve fibers.
It does require that you - as the patient - become well informed and proactive in your care. The books that I listed above can help you gain knowledge that will give you more personal power.

With care,
Pituitary failure, wide-spread endocrine dysfunction
Addison's disease
Mixed connective tissue disorder
Extensive intestinal perforation with sepsis, permanent ileostomy
Avascular necrosis of both hips and jaw
Receiving Palliative Care (care and comfort)

Post Edited ((Seashell)) : 2/26/2018 3:32:38 PM (GMT-7)

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