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Interstitial Cystitis, Pelvic Pain Syndrome, Vulvodynia

Posted , 4 users are following.

Katinka6413
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  redface

1 like, 4 replies

4 Replies

  • Amanda86048
    Amanda86048 Katinka6413

    Posted

    Hi, Katinka! I'm so sorry for all of the pain and frustration you've been experiencing. I don't know much about PN (I just looked it up online) but your symptoms sound very much like mine and I was diagnosed with IC a few months ago. The food and beverage sensitivities sound very familiar: when the bladder is inflamed, acidic foods and drinks irritate it even more. A low acid diet may help (IC websites have good information) and some foods can even help soothe the bladder. There are oral medications (Elmiron can help repair the bladder lining, phenazopyridine hcl can reduce irritation and urgency/frequency, Hyophen relieves bladder pain and spasms, etc.), instillations, heating pads, ice, stretches and yoga-I don't know what you've tried but I hope this helps. IC is misunderstood and there is a shocking lack of research, but there is a lot of information online and there is hope. It can be maddening and make you want to cry and scream, rob you of your sleep and samiry.....but it does get better, you just have to take care of yourself. Listen to your body and rest when you need to. I hope you find the right diagnosis and feel better soon.

    • Katinka6413
      Katinka6413 Amanda86048

      Posted

      Hi Amanda,

      thank you very much for your reply. I'm glad someone replied and shares some knowledge. Would you be willing to share some information on your healing journey as well?

      As for the food and beverages I am currently following the IC diet which is what I think you referred to - are you following it as well?

      I am taking currently Quercetin, Bromelain and Chondroitin as supplements - how about you? Have you tried Elmiron? The side effects scared me quite a bit.

      Here in germany it's very unknown. The doctors don't care much about it and also don't know much about it either - sadly...

      Have you found a reliable doctor?

      Warm hugs,

      Kathy

  • Amanda86048
    Amanda86048 Katinka6413

    Posted

    Hi, Kathy!

    I was only diagnosed about 5 months ago and my symptoms worsened about 7 months ago; before that point I really only had urinary frequency and it wasn't severe. Before the pain and crazy frequency started, I thought I just had a "tiny bladder" like my mom. I tried heparin and lidocaine instillations (they REALLY helped) but had to stop due to an allergic reaction. I've been following the IC diet since my diagnosis and even limiting my water intake slightly (64 oz daily) and it seems to have helped. I've been taking Elmiron for almost three months and I do feel slightly better. It can take up to nine months, even a year to feel the full benefit. It all depends on how damaged the bladder lining and wall are. Before starting Elmiron and before my bladder started to heal from the diet, I was very depressed. I cried every day (even had to take "crying breaks" at work in the bathroom) , couldn't exercise and lost hope in ever feeling better. Reading what other IC patients have shared online and realizing that I have to be patient with the healing process and listen to what my body is telling me has helped a lot. I hope this helps you!!!?

  • bill20925
    bill20925 Katinka6413

    Posted

    See my comment to Kitty51928. Dr Steve Smith may have just uncovered a simple non-invasive procedure for your symptoms. The challenge may be finding a doctor in your area who understands it. They would have to communicate with Dr Smith so he could explain it to them so they can do the non-invasive procedure on you. Find the best “IR” (see the emails I sent to Kitty51928) for details, and have him or her reach out to Steve Smith via their association or mutual doctor friends.

    Good luck!!

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