Pelvic Pain Support Network


(Poss IC, I suspect Vulvadynia too, but not diagnosed)

X Hi everyone!!! :)

So glad I've found u.

I am suffering daily with intense pain, burning, sharp pains, urgency & frequency :(

I am on Amtriptyline, Gabapentin & Solifenacin - not working so far.

I have Iuluril put into my bladder once a fortnight - no lasting improvement.

I am scared to eat, drink, have sex, do anything :(

It is ruining my life.

Docs are relluctant to give good pain killers, send me to gyno or even take me seriously in emergency appointments, juus I've been suffering for 11 yrs & they are at a loss.

I was finally referred to pain management. They suggested that my GP refer me to Pelvic Pain Clinic in Leicester. It takes 6 mths for funding!!! If they approve.

Wish me luck

4 Replies

Try getting xanax from your regular doc or go a psychiatrist and tell. Him you have anxiety from your condition. Of all the countless pills and creams I've tried this pill gives me the most relief. It relaxes your whole body, muscles, nerves, brain and it works fast. Only side effect mild drowsiness.


Amitriptyline can have a LOT of unwanted side effects; one of the major ones can be constipation. Ask your healthcare provider if you can change to Lyrica (gabapentin is the older sister of Lyrica). You CANNOT be constipated, it will worsen your symptoms. Don't push to have a bowel movement or to urinate. If you have hesitation starting urination, you could be suffering from Pelvic Floor Dysfunction. Seeing a physiotherapist that specializes in Women's Health can be very helpful. Atarax (also called hydroxyzine) can help to relax the bladder, reduce frequency and pain; ask your healthcare provider if this is an option for you. To help rebuild the lining of your bladder research a nutraceutical called CystoProtek, it can be ordered from the U.S. at For the burning, check out Desert Harvest Aloe Vera at The most comprehensive information you can find is at Moreover, the just started a new free tailored self-help program called ICHope, you can find more information at Pain medication can be helpful, but doctors globally are reluctant to prescribe them. Try ice; a large ice pack just below the waist on your backside (this helps to calm the sacral nerve that goes to the bladder) and another ice pack for your pelvis. Physiotherapists recommend NO more that 15 to 20 minutes per hour. Heat is not usually recommended as it energizes the nerve endings. And although it may feel wonderful while you have the heating pad on, patients usually feel worse when you take it off. Let me know if you have any other questions. Best wishes!


Outercourse (sex) is recommended until you're feeling better. Taking ibuprofen (check with your healthcare provider first) after intercourse will help stop the inflammation process. Rinse with cool water after intercourse. Keep a frozen maxi pad in the freezer. After intercourse, rinsing and patting dry, wear cotton panties, place the frozen maxi pad on the OUTSIDE of the panties and wear another pair of panties to hold the maxi pad in place. Remove the maxi pad after 15 minutes, no longer. Urinate before or after intercourse, NOT after icing! Otherwise your urine will come out extremely hot.


I wish you all the luck in the world. I have Vulvodynia, it sounds like you do, too. I am now in the lengthy process fo getting an electric stimulator put in through my sacrum. It's a test trial of a new procedure. so far, they implanted stims in my left side and tried to see if it would work with a control for the electrical impulses. It did, somewhat.....and I feel with the right side done, I should feel much better. I get the greatest relief from ice packs....wrapped in a towel......A "stim" unit passes an electrical pulse through the sacrum, electricity travels faster than pain, so it can work. not all stims are put in the could be anywhere along your spine.....trial and error....don't give up......!! :)


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