Hey

[lovemyalliebug]

So where do I start. Almost 3 years ago I had my daughter. I had pre-eclampsia, and the blood pressure issues continued for 6 months after giving birth. I had never been sick with anything other than a cold. During my pregnancy my OB kept finding blood in my urine. I ended up passing a kidney stone after they treated me with antibiotics for a UTI. Every urine sample after that still had blood. This went on with no explanation till about 2 months after I had Allie.

Finally my Primary Care Doctor referred me to a urologist. This was after almost 5 months of visible blood in my urine. It looked like tiny blood clots. My urologist immediately scheduled a cystoscopy. He then diagnosed me with bladder inflamation. He didn't call it IC, but he said it was something I'd have to deal with and it doesn't go away. I really had minor symptoms for a long time. I had no clue what IC was or that I had a condition that could be so irritating and painful. Up until this past October I basically was symptom free, other than my bladder being sensitive if pressure was applied.

In Oct. I kept getting eye infections. My eye doctor thoroughly examined my eyes several times, but still has no explanation. They always swell up, and have a ton of discharge all the time. It's really pretty gross, but not noticible unless you really look. Of course I notice it cause it's irritating. I am still following up with the eye doc trying to figure it out.

After that started I noticed blood in my urine. I immediately thought kidneys stones. I went to the doctor and was sent home with migraine medicine, pyridium, and ciproflaxin for a UTI. I had a bad headache while I was there that is why he gave me migraine meds. The blood was still there after finishing the cipro. So I went back and he gave me macrobid. Long story short this is still an issue. I've been on several antibiotics. Cipro, macrobid, keflexm, doxyciclin, even augmentin. Please excuse my spelling. I've taken 2 rounds of cipro and macrobid. Still no relief.

About 2 months into this I saw a different doctor. He did a sonogram and diagnosed me with IC, and said I didn't empty my bladder. He prescribed me one of those antibiotics. I can't even keep up with it anymore, and told me to keep a journal of my diet. Neither of these doctors would give me a referall to a urologist. They felt that they could treat me. I finally saw a nurse practioner, and she knew about IC and gave me a referall to my urologist. I have to have one with my insurance.

My appointment is next Wed, I don't think I've ever been more anxious about a Doctors appt. This has been a nightmare. I've had other strange symptoms too. I've had joint inflammation, and pain. My ankles get so swollen I look 8 month pregnant. I'm always so drained, just absolutely no energy. I have horrible lower back pain, and I live in the bathroom. I keep getting strange rashes on my arms and hand when I'm exposed to sun, I have always tanned easily so this is weird to me. My hair started to thin in the beginning of all this. My hairline is so far back. It's just so many strange things. I've never had any health problems, but the past 5 months I feel like I'm just falling apart.

Well that is my journey so far. I'm going to try this diet, and see what the doc has to say. I'll just go from there. If I just take 1 thing from this it is that I will never take my health for granted. It could always be worst. This has only made me stronger, well that is what I try to tell myself. I have handled things pretty well, but I break down sometime. Thanks for reading, and I look forward to having people to share my struggles with who understand.

[turnaround]

I am so sorry that you are going through this difficult time.

Living with all the symptoms, without a diagnosis, was the hardest part of my IC journey. Like you, I had many different symptoms, so it was hard to pinpoint just what my problem was.

After many visits to many doctors, I got the IC diagnosis. That in itself was such a blessing, because I received treatment(in my case instills) and finally relief.

I hope you have a wonderful doctor and find the relief you deserve.

[Linda May]

finding the right doc and sticking with the ic diet is a good start.

[ginaaa22]

Finding the right dr can make all the difference in the world. I went to at least 100 different dr visits before someone really started listening to me and stopped thinking it was "just a UTI." If you have IC there are some conditions that some patients also have along with IC. I personally have IC, vulvodynia, fibromyalgia, IBS, GERD and fructose intolerance. All of these conditions manifested at different times, some together, so it is very hard to figure out what is causing what. Fibromyalgia can cause joint pain and fatigue. I went to a rhematologist and that is how I found out I have fibro. I was lucky because my PCP would give me a referral to where ever I wanted to go I just had to ask. If there is one thing I have learned it is that you can't let a dr tell you that nothing is wrong when you know your body. Keep going back and if they aren't helping find a dr who will. I saw 8 urologists when I was 16-18 and never got my diagnosis of IC. A gyn diagnosed me because of my pelvic pain and other things. I never expected to find out from a gyn. I hope you can finally find out what is going on and get some answers. Good luck!

[cmclien]

I am glad you finally got your referral to a urologist so hopefully some real diagnosis will occur for you to start treatment of some sort.
You have alot of other symptoms with the eye problems, fatigue, joint pain, thinning hair and rashes. Have you had blood work done for autoimmune (and other) screenings? I agree with Ginaa, a rheumatologist is a great doctor to see with the kind of symptoms you are having to help sort it out.

[lovemyalliebug]

Thanks

Thank you so much for all your replies. I haven't seen my urologist in a long time. I really liked him. I just need him to look at the other symptoms too. I have medicaid so it's hard to get a good PCP, and they don't like to give referalls from my experience. I know if I keep trying I'll find the right doc. I've also had PID through all this. There is so symptoms I really need to take the time to make a list. Thanks for the encouragment. It really is nice to have possitive people to talk to. Nobody has a clue what this is like when they've never experienced it. Thanks everyone.

[lovemyalliebug]

If they do routine bloodwork does it detect autoimmune disorders? I haven't been tested specifically, but I've had blookwork done. I go to the urologist tomorrow. Should I talk to him about this? Any last minute advice would be great. I never know how a doctor is going to take my issues. I feel like they blow everything off, except diagnosing me with UTI over and over.

[ICNDonna]

It's good that you got a referral for a urologist. I do suggest you write down your questions and take the list with you --- also you will want to jot down notes when you get the answers. It can be so easy to forget what we're being told, especially if we're nervous.


Donna

[cmclien]

bloodwork

If they do routine bloodwork does it detect autoimmune disorders? I haven't been tested specifically, but I've had blookwork done. I go to the urologist tomorrow. Should I talk to him about this? Any last minute advice would be great. I never know how a doctor is going to take my issues. I feel like they blow everything off, except diagnosing me with UTI over and over.

No, routine blood work doesn't test for autoimmune issues. They can order a couple different panels that will screen you for lupus, rheumatoid arthritis and sjogren's. Definitely worth having the screening done. Maybe your pcp would do it if you talk to them about the different issues especially the joint pain, rashes and fatigue. It would be nice to have those ruled out!

Good luck tomorrow.