IC and aching in lower legs

[theresa88]

i was told i have IC back in oct. 2008. The only symptom was a aching in the vagina. I am getting other sympyoms..now i have horrible aching in lower legs and lower back.The same ache that is in vagina is in legs stomach .bladder and lower back. i am going threw test and more test . now they want me to have test for PAD.
I ave had this aching in vaginal area since july of 08 with no relief. 2nd opinion urologist feels it is from back. I am desperate. any info would be great.


This discussion is related to discomfort vagina bladder urethra area - am scared no one can help :(.

[Kimkg]

My husband was diagnosed with IC when he was about 42 Years old. He had his bladder filled to expand the bladder wall. It did help him for about 2 years. Then it came out of remission and reared its ugly head. It was a nightmare trying to find a urologist  that is not a quack and knows what IC is.. I think I have fired 4 doctors and did a lot of praying to God to find the right one. He is now under the care of (I call her our guardian angel) a Urologist nurse. She has studied and worked with a local Urologist her in Michigan and she knows a lot about IC.  She also started a support group with IC people. We met her at a meeting and she has done wonders for my husband for the first few years. The problem is that most doctors do not want to be responsible for giving people pain meds. She is not afraid to do it and when and if she is she will refer him to a pain clinic. He has a bladder installation done every week.He also just had the bladder lining cauterized and it seems to of helped some. He is on Elmiron, Amyltriprlyne, Vallium, Noratin, Zoloft, Visserel,  and a few others this was doing a pretty good job at first but now he too have unbearable leg pain.  It is constant and it moves around. He also has had his feet go numb. I too him to a ortheopedic specialist and he told us that his back MRI is normal so it is not coming from there.  He also has protatistis and it causes parallel symptoms and some different. He is working but barley. Since he is a laborer it is really hard on him.  I do not know how long he will be able to hold onto his job because of the debilitating effects of the disease. If you are not happy with your Urologist then find another and keep looking until you find one who really know about this auto immune disease. The right doctor can make all the difference in the world.  Our doctor has studied it for years. Him and the Nurse that takes care of my husband have worked on studying it for 25 years now.. They said eventually he will have to go on disability and they would help him to get on it..  This is really hard for me because my husband always worked from sun up to sun down. He was always working around the house and never stopped but since this onset disease started he comes home from work, sets in a hot bath, goes to bed or just sets on the couch.. It has been pretty awful.  Please find a Urologist that really understands what IC is and keep looking until you find that one doctor that knows.. You should know that if they are really on board by you 2nd or third visit... I hope things work out for you all..

[louloub]

Hi Theresa

I was diagnosed with IC in 2005 although had symptoms for a number of years before that (diagnosis was a long drawn out process). I have had a number of symptoms and one of those affects my legs. I have a sharp pain in my thigh leading to a dull ache in my calves. This is exacerbated by driving or standing for a long time. Sometimes the sharp pain shoots down my arms too.

I started taking Elmiron in December and this has helped my back/pelvic pain and frequency but I'm afraid it's had no effect on my leg pains. Nor have any of the painkillers I have taken over the last four years.

I'm sorry I'm not able to come up with a solution for you. If you find one I'd be grateful to know what it is! I thought at the very least knowing you were not alone might help a little.

Good luck x