Newly Diagnosed

[Lillyanya]

Okay here goes nothing. In late 03 early 04 I began having a lot of ovarian cysts that would rupture. I had a bunch of visits in the ER then in Feb of 04 they hospitalized me for five days because I had a combination of ovarian cysts ruptured and kidney stones. Had my actual first kidney stone at the age of 17. I was to have an ultrasound done and the nurses didn't call radiology for 6 - 8 hours. I was on fluids an drinking large amounts to be prepared for this ultrasound. That was a ton of pain let me tell you. After I finally went pee they called radiology, lovely right? I ended up having a diagnostic lap done on the fifth day. Diagnosis of Endometriosis.

The pain never really went away. I ended up back in the hospital with ruptured ovarian cysts and yet again kidney stones in Dec. of 04. Surgery again on the fifth day. Diagnosis of Endometriosis and Adhesions along with it.

The pain went away for a little while. In early 05 I believe it was April. I went to the hospital because I had a kidney infection and had been throwing up all of my medication. I can no longer take Cipro by mouth only through an IV. Well, they admit me of course to give me some IV antibiotics. They did a CT and found that my intestines were inflammed where the small and large meet. I ended up in hospital for 7 days for severe dehydration, kidney infection, and intestines being inflammed. They gave me a diagnosis of IBS/possibility of Chron's or however that is spelled. I never went in for the final test because it was a 300 dollar out of pocket co-pay that I still can't afford.

The pain has never gone away. I've been hospitalized since then many times because of kidney infections. They always turn back a positive culture, and the one drug (Cipro) that "will help" I can't take orally.

Finally I had had enough. I decided to find a new OB/GYN (My PCP has been treating all of my problems up until now and was doing a great job at it) I figured I would have an Endo surgery and be okay. Nope, I was diagnosed with IC. He said the little bleeding spots looked like waterfalls. Lovely right?... I have only a little bit of urgency and not too much frequency, but I have a TON of pain.

He wanted me to start Elmiron (Can't afford it)
He wanted me to do bladder instillations (Can't afford it)
On Elavil. Not really working yet.
On Urelle. Not working just turns my urine blue.

I'm currently in the process of looking for another job. Hopefully things will go well in that department.

Here's to hoping that the pain goes away soon!!!!

Thanks for listening/reading.

[lisabar36]

Hi and Sounds like you have been through alot. I am really sorry. I wanted to tell you Elmiron has an assistance program and if you go on there website you can find out about it. Maybe you could look into that in the meantime. Also Atarax is another med that helped me alot. Maybe you could talk to your doctor about that also. I hope you feel better soon. Lisa

[Lillyanya]

I remember taking Atarax in 05. My PCP gave it to me for my insomnia. It didn't really work heh. I was on the maximum dose I guess. Dunno I can talk to my Doc about it, but I called and the Nurse Practitioner in the office said there's nothing they can do besides Elmiron, Elavil, and Urelle. Oh and bladder instillations. I'm still waiting for a reply from the doctor to see what else can be done.

I forgot to mention I'm 25 and the mother of a little boy.

[Briza]

Atarax seems to help some IC patients...I haven't tried it b/c antihistamines don't make me sleepy...actually the opposite cause me RLS and I toss and turn in a semi-sleep state all night and does not make for a good morning. Have heard others have the same problems.
I've had good luck with 10-20 mg Elavil for frequency, urgency, sleeping thru the night, but it started working for me pretty quickly, within 2-3 days, but it never really helped me with pain. Others report good pain relief, it is so very individual.
Another thing to talk to your dr about would be Lyrica....many report much success with it...it is supposed to work for the nerve pain related to IC. But it is fairly new, so I don't know if there is a generic? So it might be pricey. But Lisa is right, there are some drug co programs that help with expensive meds like ELmiron, possibly Lyrica, too, though Elmiron seems to take some months to start working, sometimes as long as 6 months or more if it works at all, so definitely if you are experiencing pain that keeps you from leading a normal life then you would want to look into any type of med that would help with that symptom.
Have you discussed Pyridium Plus, Pyridium, or Prosed DS with your doctor? They are similar to Urelle...Many get much relief from the burning bladder feeling, bladder spasms, and pain with these meds. Pyridium is not meant for long term use, but it can be bought OTC at any pharmacy, drugstore, walmart, the bigger supermarkets under the name Uristat or AZO Standard. Seems some patients prefer one over the other, for me Pyridium or Uristat works great but I don't use it often, others prefer Prosed DS because it is reported to be safer for long term use.
You could also talk to one of your drs about a lower end pain med like Ultram, Tylenol 3 or Vicodin. I know it is hard to ask for pain meds but sometimes it is necessary and for some of us THE thing that keeps us working and leading a normal life. Sometimes onces you get the pain cycle under control you can keep it under control...and then have less need for pain meds.
Well, these are just some ideas, trying to cover a lot of bases.
I have never had rescue instills but know that many swear by them. But it may be just some simple pain relief that you need now and then to get you out of the pain cycle. I have taken extra strength Tylenol with some success for pain when I did not have access to my Rx pain meds.
Best wishes, hope any of this helpsBri

[Lillyanya]

I used to get recurrent kidney infections. They had me take that Azo stuff otc. It helped a little but not much. The doctor suggested Neurontin. I took it when I was 17 and had lost my first baby at 5mo. due to a neural tube defect (Acrania closely related to Anencephaly.) I can try it again, how long can you take it before worrying about kidney problems? Does it say anywhere that I can find online possibly?

I have weird reactions to a lot of meds. Especially anything having to do with anti-depression or anything like that. I have bi-polar disorder that I've learned coping skills with and haven't had mood swings (severe) in years. I take no medications for it. I think they tried every drug cocktail under the sun for that, but I always have had weird reactions. Like Seroquel I only have to take half of a 25mg pill and I'm knocked out to the point where I was taking Adderall to wake up in the morning. Give me something like Versed and it takes a large amount to knock me out. Anti Anxiety pills have never worked for me, and Neurontin made my depression worse. Lithium made my memory go to crap.

Frustrating. It seems like no matter what, if they give me something for a certain thing I have the exact opposite reaction to it.

I start a new job on Monday and I'm PRAYING that I will make it through. I'm still having pains in my stomach from the surgery. Especially around one of my incisions. He said everything felt normal.

Hopefully this will subside soon! I don't know how long I can wait for relief. I've already lived enough of my life in pain, and I don't feel I should have to wait even longer. /sigh.

Thanks for listening.

[monica78]

Im sorry you have gone through so much already. I hope your new job goes well so you can afford the meds. The IC diet helped me so much. I also have endometriosis and IBS, and of course IC. The doctor said that alot of people that have 1 of these usually have all three. I am only 29 and also have been through alot of surgeries and painful days. I pray that you find some relief soon.

[Lillyanya]

I went back to my PCP. He put me on my old pain medicene and then he also increased the dose of the Elavil. I just have to watch for any signs of my bi-polar acting back up. He wants me to do Physical Therapy when I can afford it.

Hopefully he can teach me how to do the bladder instillations myself that way it will cost less too. We're waiting to see how things go at the new job.

Thank you for the replies, it helps to know that I'm not alone.