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Interstitial Cystits and Vulvodynia

Oct 08, 2016 3:06 AM

Chronic pain, pressure, knifelike pain, acid like pain in the bladder, back and vulva. Every day 24.7 causes anxiety, depression, insomnia, can't really do too much physical work. Anyone else dealing with this? I feel like I'm going crazy been in pain for more than 10 years. I am 34, no children.

Oct 08, 2016 6:56 AM

Hi Sabali ⚘ nice to meet u sweetie 🤗... its not one of my dx's personally,🤔 but there will be someone along soon 😄that will know.🤗 All i can say is... complete the pain diary, 😉every day for about 6weeks or so🤗 and print it out...🤔 to give a quantifiable tool to help with 😚diagnosis and treatment... 🤗and we are all here for support, if u need to vent.. 😉or even giggle with our antics... (distraction theory is one of my traits) 🤗 above all 😙welcome to the family hunni ⚘

Oct 08, 2016 7:34 AM

Yes, what she said!!! ⤴️⤴️

Oct 08, 2016 9:23 AM

Hello Sabali -
I don't think I have met you before. Am still finding my way around here.

While I don't have the same diagnosis as you I believe most, if not all, can relate to your constant pain.

I have Fibromyalgia, Chronic Fatigue, Myofascial Pain Syndrome, osteoarthritis and about a dozen or more other issues. I also have a history of bladder and kidney infections.

Trying to find a way to balance life and pain is not easy. Its a battle that's constantly changing as our symptoms don't always stay the same.

One of the most important things that helps in ALL situations though is positive thinking. We all have things we are thankful for - it really does help to take a moment to remind ourselves of those.

Another is to find things you enjoy and make sure you allow yourself time to do those things. Whether it's working on a craft, reading a book, watching the birds, soaking in a tub, listening to music etc. Some of the simplest things in life can bring the most joy.

Of your symptoms are getting worse or changing it is always good to touch base with your doctor to see if there are changes you can make that might help.

Take care -
Melanie

Oct 08, 2016 7:19 PM

Hi Saba, while I don't have Vulvodynia, I do have IC so I understand what you are going through. You are not alone here. My comment to you is this. If you haven't done so already, PLEASE find yourself a good urologist. Try several if you need too. Another idea is to get a urogynecologist to help manage your care. Also, please don't be silent. If you are having bad symptoms, please tell your doctor. They can't help you if they don't know what you are feeling.

Oct 08, 2016 8:23 PM

Agree with Amanda! I don't have your diagnosis either but I am a Women's Healthcare NP. You need a very good Urogyn, someone who will do some compounding medications and a pelvic floor Physical Therapist.

Oct 09, 2016 7:37 AM

Mich, is absolutely right. A pelvic floor PT is always a good thing. I also have PFD which has been greatly alleviated by PT. Enough so that I'm not longer having to lie down in the middle of the day and cry because I hurt so badly. It did take some trial and error with a diagnostic laproscopy to get to the bottom of it. But pain is very much under control at this point, except when I let myself get too stressed out, I neglect to follow the IC diet as strictly as I have been or my hormones go absolutely nutso like they are now. Hope that helps a little bit. There is a website that is a go to for me: www. ichelp.org.

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