Almost 8 years of pain - Pudendal Neuralgia? IC? PPS?

[Katinka6413]

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.


Beginning

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.

Symptoms

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 clitoris (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.


Medication

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.


Diagnosis?

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

[April]

Hi Kathy,

The burning and the knife stabbing feelings on the pelvic flood do sound like pn. Does your pain seem to match the path of one or more of the pn branches? PN can also activate your bladder (it does in me), but I'm not as sure about the bladder pain. You could review the home page to see if bladder pain is one of the symptoms (or put bladder in the search engine). The food related symptoms might be something else unrelated to pn, although I think I remember a mother posting about her daughter who an allergy that created her pn-like symptoms. So, you could put allergy in the search engine and see if anything comes up. Have the doctors considered the possibility that these symptoms are due to different problems? How did they rule out the two diagnoses you were given (pn and fibromyalgia)?

April

[April]

Hi Kathy,

I just did a search for allergy and found the post I was remembering. The mother discovered that the daughter was allergic to aspartame. Here's the http for the thread:

http://www.pudendalhope.info/forum/view ... rgy#p56134 .

The last page of entries shows the final info on the allergy. I'm not sure if that helps you, but I wanted to explain what I was remembering.

April

[Katinka6413]

Hi Kathy,

The burning and the knife stabbing feelings on the pelvic flood do sound like pn. Does your pain seem to match the path of one or more of the pn branches? PN can also activate your bladder (it does in me), but I'm not as sure about the bladder pain. You could review the home page to see if bladder pain is one of the symptoms (or put bladder in the search engine). The food related symptoms might be something else unrelated to pn, although I think I remember a mother posting about her daughter who an allergy that created her pn-like symptoms. So, you could put allergy in the search engine and see if anything comes up. Have the doctors considered the possibility that these symptoms are due to different problems? How did they rule out the two diagnoses you were given (pn and fibromyalgia)?

April

Hi April,

thank you for the information. I'm not sure what you mean by pn branches though but I had a look at the page and found "urethral burning" as one of the symptoms. I'm also not sure about the food, maybe it triggers the nerves in the bladder?

I read about the allergy, it's an interesting possibilty. For IC patients it's also recommended to avoid artificial sweeteners.

Yes, it's a possibility that I might have IC or IC and PN together. But again, just possibilites.

PN the doctor supposedly diagnosed by pressing from inside the vagina on the sides where the nerve is. Fibromyalgia another doctor diagnosed due to trigger points, even though I didn fulfill all the requirements.


Greetings

[Violet M]

Hi Kathy,

According to the Nantes criteria, tenderness when the nerve is pressed on can be associated with PNE. It was one of my primary symptoms. I also had urethral burning and knife-like pain on one side of the perineum but not what I would call bladder pain and diet did not affect it at all. Bladder pain that is affected by diet is often associated with IC . The pudendal nerve innervates the bladder sphincter which would account for the urethral burning. I agree it's possible you have IC and PN together. I have heard the theory that the two may be related but I don't know of any studies that back up that theory .

Since you were a heavy exerciser with a mountain bike, you have to be suspicious that there is something mechanical going on. For me it was the ligaments compressing the pudendal nerve due to ligament strain from exercise. I was diagnosed by a physical therapist. Is it possible for you to see a PT who specializes in chronic pelvic pain and pudendal neuralgia?

Violet

[April]

Hi Kathy,

You asked about the branches: The pudendal nerve has three branches (dorsal/clitoral, perineal, and rectal), and it can be useful to determine if your pain follows one or more of those branches. When I was first trying determine what I had, I learned about these branches and realized that my pain perfectly followed the path of the perineal branch. There might be a list on the home page of locations of pain for each branch, but basically the rectal branch is in the rectum, clitoral branch is in the clitoris, and perineal branch is in the vulva, around the anus, and in the lower part of the vagina.

It does sound like you could have two things going on, given that food allergies and bladder pain (as Violet noted) are not symptoms of pn. People can have trigger points for any kind of pain (I have them in the muscles around my pudendal nerve), so I can see why some doctors were skeptical of the fibromyalgia diagnosis if that was the only symptom used to arrive at that diagnosis. As Violet said, it could be useful to see a physical therapist who specializes in pelvic pain so you can get more diagnostic feedback about the possibility of pn.

April

[dayletriay]

I suffered from PN for more then 7 yrs. I live in Jacksonville, Florida. I saw well over 8 physicians.
Had multiple injections and a Medtronic Nerve Stimulator implanted. One Doc's PA came back into the exam room and told me Google and research PN As much as possible.
I DID...and found Dr. J. David Prologo. Emory Creek Hospital Atlanta, Ga...area!
He did my Cryoablation in Sept 2016. This REDUCED my pain by at least 50%.
Please Google him and/or watch his youtube!
What a huge blessing this man was to me!

[Violet M]

Dayletriay,

Thanks for reporting back on the success of your treatment. Glad to hear you are doing so much better and I wish you continued healing!

Violet

[starling5771]

Dear Pudendal Education Group,

I have never posted or joined a group like this before. I have PN, and I am looking for a support group. I love my family dearly, but ever since the terrible auto accident, while pregnant, (HEALTHY BABY BOY), my health has been hard to manage. I am in chronic terrible pain, as I see, many others are in as well. Is there a support group? Either in person or through this site?

[Violet M]

Hi Starling,

I'm sorry to hear about what happened to you. Congratulations on your baby. How old is he now?

You are right about chronic pain being extremely difficult to manage. Were you just recently diagnosed and have you found any type of treatment that helps so far?

I think this forum would be considered an online support group but not in the same sense as a Facebook group. I think there might be a couple of Facebook groups but they are not associated with this organization at all -- although I have heard one of them has a name similar to ours.

Violet