Newbie

[breezy5469]

Hello!
How thankful I am to have found a forum filled with such a wealth of information! I went to my OB-GYN on Oct. 20, 2014 for symptoms similar to a UTI. I was having what I described as severe "urethral pain" - only on the right side. I knew that it wasn't like a usual UTI but they treat me for almost everything so I started there. The dip test in the office was positive and they started me on Macrobid. Three days later I got a call telling me my culture was negative and to stop the antibiotic. They wanted me to come back in for an ultrasound because they thought I had another ovarian cyst. After having a baseball sized cyst last fall I knew that "this" was not "that" and I declined the ultrasound. I scheduled an appointment with a urologist and again, my culture was negative. He started me on Uribel and pain meds and wanted to do a CT scan. CT scan was normal and then he did a cystoscopy (inconclusive) and diagnosed me with interstitial cystitis. I was given Elmiron, Valium suppositories, and Macrobid (again). On Friday, November 21st my pain level was at about a 12 (on a scale from 1-10) and I called the urologist office asking for help. He threw more meds at me - Hydroxyzine and Pyridium - which did not help. The following day was just as bad and I was scouring the IC forum looking for answers and found a link to this site. I started reading the symptoms and could answer yes to every single one. I searched your database for a physician in NC and there wasn't one listed but I did find Dr. David Redmond in SC. I emailed him last Saturday and, unbelievably, he responded! He mentioned in an email that he uses steroids with the nerve blocks and hubby said, "Don't you have some left over Prednisone from poison ivy over the summer?" I did have some left and started taking 10mg of Prednisone three times a day. I think the oral Prednisone really helped. Dr. Redmond and I corresponded the rest of the weekend and I was scheduled for an appointment last Tuesday, November 25th, at his office which is over 2 hours from my home. I couldn't be happier with Dr. Redmond. He did the PNMLT which was not painful and showed I have a latency on the right side. He also did a nerve block (which was a bit painful but tolerable) and provided relief for about a day. I am now on Neurontin (900mg per day), I have pain meds and have still been trying the Valium suppositories. My pain is at about a 1 in the morning and gets progressively worse throughout the day. I have been trying not to sit but rather stand or lie on my stomach. I also have a new prescription for Prednisone but cannot start it until December 5th due to the nerve block.
I cannot pinpoint one exact thing that cause this condition for me. I drive a lot for my job plus have a 30 minute each way commute. When not driving I'm sitting at a desk. I fell down the stairs last year and broke my leg. There are some anatomical issues with hubby that may or may not be a contributing factor. I delivered two babies vaginally 18 and 19 years ago. Regardless of the cause, I now find myself dealing with this pain daily, adjusting pain meds to meet my level of pain and waiting. Just waiting. I'm not even sure what I'm waiting for.
I've emailed Dr. Redmond. I don't think I'm taking enough Neurontin based on what I've read in this forum. I'm not sure if it is something you have to build up. I don't think I'm going to be able to work in the same capacity anymore and it makes me sad because I love my job. I work with individuals that have developmental disabilities. I went back to school as an adult to get my degree in Psychology for this opportunity. I never dreamed I would have to consider disability. I'm scheduled to go back to Dr. Redmond in January...that seems like a long time from now.
So, thank you for accepting me into the PN "club". I've learned a lot from you guys already by reading through this forum. I have ordered a chair cushion from the IC Network.
Breezy

[janetm2]

Welcome Breezy,
So sorry you are having such pains but glad you found a doctor to help. Neurontin does need to be gradually built up. There can be side effects that you need to get past at each level so they do not overtake you. I had blurred vision at one point as an example. Good luck to you.
Janet

[Violet M]

Hello Breezy,

Welcome to the forum. I've heard very good things about Dr. Redmond. Glad you were able to see him. Have you had a chance to see a PT who specializes in treating pudendal neuralgia? They might be able to give you additional valuable info about what's going on.

I had a lot of urinary issues too. Neurontin might help if you titrate up to a high enough dose but also antidepressants (especially tricyclics) can be effective for bladder symptoms. There can be some trial and error in figuring out which work for you.

Best,

Violet

[Violet M]

Just wanted to add, I was at a point where I couldn't work but now I can. Hopefully this will just be a temporary thing for you. I work with disabled kids too and I love my job. I'm sorry things are so rough for you right now.

Violet

[breezy5469]

Thank you both for the warm welcome. I actually received an email back from Dr. Redmond today and he said that he wanted to give this dosage of Neurontin a little more time. Oddly, he asked that I hold off on the PT for now. I'm not sure why but we have plans to talk on Tuesday. Today was a good day. Yesterday was horrible. Tomorrow is my first day back at work in almost 2 weeks. I'll see how long I can handle it and then come home. I guess I will do what I can do. One day at a time, right?
Thanks again!
Breezy

[Violet M]

Dr. Redmond is very experienced with PN so I'm sure he has good reason for telling you to hold off with PT. Sometimes they want you to just try one thing at a time to see what works. Keep your courage up.

Violet