Questions, not newly diagnosed but new symptoms maybe?

[jholmes4]

Hi I am 24 and was diagnosed about 3 years ago with endo and IC. After suffering with this for as long as I can remember I finally found a Dr. That was willing to take the time and listen to me. I was on the elmiron and detrol and then found out I was pregnant. Things got VERY bad while I was pregnant and so I was doing bladder instils of elmiron 1-2 times a week. After the baby things seemed to get better. Then slowly things are getting back to normal... I can no longer take birth control as soon as I do I am in a terrible flare up, thats where it started. I can manage most of the time, but now something new. I am having pain not only in my bladder but just well ya down there! Horrible pain especially when I am about to start my period? I also feel as if I am getting a yeast infection but it only comes with my period. Ok so on to my question.... I have read that vulvodynia develop with IC? Has anyone heard of that? I would love to get some answers this has been going on for about 5 months and is just getting worse. To make things worse I am a student right now with no health insurance so I am managing without any perscriptions, so only the over the counter or very low cost stuff is all that I can afford. I am just very frightened! I am only 24 and it is just getting worse and worse!!!

[Cassaundra]

I'm sorry that you are in pain. And congrats on your new beautiful baby!

First off, be sure to follow the IC Diet. Please try to follow it. Keep a journal to track your symptoms. Oh, and drink lots of water.

http://www.ic-network.com/diet/2009icdietlist.pdf

Vulvodynia as told by my gyno, is a generic term for "vulvar/vaginal pain". I also have sensitive skin in the vulvar area. Follow my tips for some relief. They do help, but take time. Keep following the advice even if you feel better.

http://www.ic-network.com/forum/show...Sensitive+Skin

I also notice that you have been diagnosed with endometriosis. Have you had a laparoscopy? Or tried the Lupron shot? Check out this website. It is specifically for endometriosis.

www.endo-resolved.com

Sometimes people's IC and vulvodynia are affected by their cycles. You could ask for a certain type of birth control. I have heard that some ICers have trouble with progesterone or estrogen. You could ask for a pill that is either one.

Talk to you doctor about your no insurance. Most of the time they are willing to work with you. Also, if you have high mounting medical bills, you can talk to the financial office at the hospital and they can reduce your bill. Usually they write it off on their taxes at no problem to you.

Also, stop at your local Department of Human Services. You may qualify for medicare, food assistance, etc. Also, if your baby doesn't have insurance, DHS can help take care of her too. Like WIC, etc.

There are other medications that help people with IC.

Some things are:

- a tricylic antidpressant such as Elavil or amitryptiline. In low doses, this helps with your frequency, burning, pain, etc by interferring with the nerves.
- an antihistamine such as Atarax, visatril, or hydroxyzine. This helps the chronic inflammation in your bladder.
-Elmiron

I know that you are financially needy right now. But ask for generics (for the antidepressant and antihistamine). They really do help. If you can't afford Elmiron, there are certain assistance programs available. Again, check with your doctor and your DHS.

For a quick fix try these:

-Heating pads
-Self adhesive heating pads (most last at least 8 hours)
-Ice
-AZO (OTC pyridium) Urinary Tract Relief Symptoms - Don't take longer than ten days out of the month. It's hard on your liver
-Prelief or Tums (The white ones). This helps take acid out of food. Prelief can be found at Walgreens are at Walmart (ask for it at the pharmacy counter)
-Take a glass of water with a tsp of baking soda. DO NOT try this if you need a low sodium diet. Drink it quickly, it tastes gross.

As a student, I would talk to your student advisor/counselor. Normally at the beginning of classes, they always ask "Do you have any disabilities or special accomodations that are needed?" A doctor's note may be required. This can help if you need to be absent for your class because of your condition and it can't be held against you.

Do not be afraid to ask for this. It's there if you need it.

Do you have any family members or friends you can rely on?

This is NOT your fault. You in no way caused this. I'm sorry for your pain and I hope that it will get better. Don't give up. Finding relief takes time and I know being patient hurts sometimes. I hope this helps. Feel better soon!