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  • sapb86
    replied
    Sorry about the delayed response. I'm back again. My pain died down a few months ago, thank god. Everything was fine and dandy until a guy I'm seeing fingered me a few days ago, and now the pain is back in full-force. I've been taking AZO, which helps a little bit for a few hours, but other than that I'm in excruciating pain. I emailed my physical therapist, and she hasn't responded. I don't know what else to do.

    I hate this. Any time anything more than a tampon goes into my vagina, I am in pain for weeks on end afterwards. I wish there was some sort of drug I could take the day after manual sex (or real sex, though I'm way too scared to try that again) to just prevent the pain from even starting. Is there such a drug that I can talk to a doctor about?

    My primary physician is terrible. She told me I was allergic to condoms. Which is probably the stupidest thing ever because a) I'm not and b) I get this pain from being fingered, when no condom is involved. She is clueless and I don't think she knows about any drugs for this sort of thing. And Dr. Payne is on sebbatical I think, plus he wasn't really that helpful anyway.

    What can I do? I want to make the pain go away ASAP and I want to prevent it from happening in the future. Please, please, help. I've been so depressed for these past few days because of this.

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  • earthlady
    replied
    If indeed you have PFD only and not IC then the standard treatments and self help strategies just for IC may not help a whole lot. Has your dr. recommended anything for the PFD like vaginal valium, sitz baths with epsom salts, pelvic floor stretches, muscle relaxers, ice, or medications for nerve irritation? I had pelvic floor spasms and at the time I swore it was the bladder only but once I got the pelvic floor calmed down that presses on all the nerves in the area it made a big difference with the burning feeling in my urethra and bladder. I actually had both PBS and pelvic floor problems but no one really knew which one came first so I ended up treating both. I was also in pt for pelvic floor therapy and I found that sometimes the therapy irritated my urethra and bladder. I limited my sessions to once a week and even cut some of them down to 30 minutes only.

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  • ilovecoffee
    replied
    Did you find following the IC diet helpful?

    With my last flare I did a lot of reading about food allergies/sensitivities and I am certain that for me the food I eat comes into play with urethral/vulva pain. I can't eat wheat/gluten because it causes extreme joint pain, and I cut dairy out of my diet because it aggravates my seasonal allergies, eczema, and sinus problems. So I had been eating a lot of gluten free products containing almond four, eating a lot of nuts, potatoes, sweet potatoes, and drinking a lot of almond milk. All of these things are high in oxalate and interestingly some people who follow a lox oxalate diet have found relief from IC (and other) symptoms. I am doing my best to eat low oxalate for the next few weeks to see it will be helpful long term for me. It is overwhelming but I know I need to do something, I feel like I pretty much lost the last 2-3 weeks because I felt so awful with urethral/vulva pain. I think this last bout was triggered by eating gluten and allergies, I just felt like my whole body was inflamed and sore. I don't want to happen again.

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  • sapb86
    replied
    Please help

    Ok, I'm back.

    So I saw Dr. Payne in July. He told me I had pelvic floor dysfunction and not IC, so he sent me to a physical therapist. I have been in physical therapy for several months now (going every 1-2 weeks), and for a while it was helping. There were days when I was completely pain-free! Anyway, for the past week or so, I've had EXCRUCIATING pain in my urethra. It was the worst today. I'm a pre-med college student but I had to miss some of my classes today because it hurt too much to move. For the past 3 days I've been in tears because it stings so badly.

    The one thing that does help is over the counter AZO. If I take it, I'm pretty much pain-free for about 4 hours! The problem is, I've been taking it for like 3 days now and the underlying problem doesn't seem to be getting better. And I know you're not supposed to take it for more than 2 days. Dr. Payne said I could take it for more than 2 days, but I'm not sure how much. I'm going to my doctor (general practitioner) tomorrow to get a urine test, though it'll probably come up negative for a UTI.

    The problem may have been caused by my excessive taking of vitamin c recently. My roommate is sick so I kind of forgot about how acidic vitamin c was and I took a lot of it. Since then I've stopped taking any sort of vitamin c, but the problem has only gotten worse. I've also tried drinking water with baking soda, and that hasn't seemed to help.

    Another thing I've done recently is use the vaginal dilators my physical therapist gave me. A day or 2 ago I used one of the bigger ones I've never tried before. Could that have set it off? It was painful going in, but I thought it was supposed to be like that (the point of them is to stretch out the vagina).

    Anyway, can someone PLEASE, PLEASE, PLEASE tell me what to do? I plan on calling Dr. Payne's office tomorrow to see if there's anything one of his nurses can tell me. This is some of the worst pain I have ever felt and I'm at my wits end. I've cried pretty much all day for the past few days because I'm in EXCRUCIATING pain.

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  • ICNDonna
    replied
    It may be entirely safe for you to take longer than the recommended dose listed on the package, but you still need to talk with your doctor first. For one thing, extended use of pyridium (the same as AZO) can stain contact lenses.

    Donna

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  • Linda May
    replied
    I have taken azo for weeks and it did help, anything is better than suffering. You can always call the nurse and tell her it helps and ask her these concerns.

    Leave a comment:


  • Mc2203
    replied
    Personally- Ive taken it longer than 2days- probably for about 5-6. I dont think it would be so bad for you to take it up until your appointment with the specialist if it is helping you.

    Sarah.x

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  • ICNDonna
    replied
    You really should talk with your doctor before exceeding the recommended dosage for any over the counter medication.


    Donna

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  • sapb86
    replied
    The AZO seems to be helping, but the box says I can only take it for 2 days. Can I take it for more than 2 days or would that be really bad?

    Leave a comment:


  • sapb86
    replied
    I'll try both of those things, thanks!

    Leave a comment:


  • healingthoughts
    replied
    Have you tried taking 1 tsp. of baking soda in 8 oz. water? It doesn't taste very good but can help with the burning. I think it is not recommended for someone with high blood pressure.

    Leave a comment:


  • Linda May
    replied
    Try AZO you can get it at any walmart.

    Leave a comment:


  • sapb86
    replied
    Thanks.

    It's June 18th today and my appointment with the urologist is July 5th. Is there anything I can do between now and then to make my pain go away in addition to the IC diet? There is a constant burning pain in my bladder and I'm literally bedridden because of it. Please, please help!

    Leave a comment:


  • Linda May
    replied
    Yes donna is right stick with the diet, and when you see the uro he will find a treatment plan for you. I wish you the best; and let us know how you are doing. You can ask all the questions here this is an excellent support forum. We all have been in your shoes and we pray for a cure soon.

    Leave a comment:


  • sapb86
    replied
    Thanks, Donna. I'm printing out the IC diet cheat sheet right now and sticking it on my fridge. What do you think I should do about the birth control?

    And yeah, I'm so blessed to live so close to Dr. Payne. His office is about 5 minutes away from my house.

    Leave a comment:

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