About my appt yesterday w/ my ex-uro

[KatieB]

I went to see my uro yesterday for a followup to my hydro/cysto. I had said before I went that I wasn't really thinking he was going to have any real insight for me but I was not prepared for what I got.
First of all, if you've read any of my posts you know that wearing even sweat pants hurt me something crazy due to pressure. But I felt like in had to wear something other than pajama pants. So I was wearing my painful sweats. He ran 1 1/2 hours late and by the time he made it into my room I'm was almost in tears just because of my clothes. Then, he started talking.
He told me my IC was probably the worst he's seen in a long time. I had called his office and explained my problems with the elmiron and how many ways I had tried to take it to make it work. He told me to just forget about it. Elmiron works if you catch IC early, if not, it's probably not going to help anyway. I told him how I had tried to take the elavil and it made my bp bottom out but it had helped a little, at least. He said well then "That's too bad". Period. I told him I was still taking the Atarax but couldn't see that it was really helping. He told me to stop taking it.
He told me he 'could' do DMSO instills BUT he didn't think I would be able to handle the cath, the meds or holding it for an hour. I asked him if he could put lidocaine in it so that maybe it wouldn't be so painful. He said "no, I don't do that".
All this time I had tears in my eyes. Then I asked him "So, what do I do? What do people like me do?" He said (and I quote) "They suffer".
I started crying full on at that point and I tried to say That's terrible of you to say" but the only thing that came out was "That's terrible". And he said "Yeah, it is, isn't it?" I just got up, cried while paying my bill and tried really hard not not to cry all the way home because my poor son had driven me and he was so worried.
I cried all day yesterday. As of now I have no urologist. I feel totally beaten down and I'm afraid to try to find someone else. Just because a uro says they treat IC doesn't mean they actually do. I don't know who to trust. And I feel like I'm in shock that another person, let alone a Doctor, could treat another human being like that when he could obviously see how much pain I was in and had told me himself that my IC is bad. How can I trust another doctor?

[ICNDonna]

There are many good, caring doctors out there. I'm so sorry you managed to find one who isn't. Please don't give up on urologists --- if you scroll to the top of this page and click on "Professionals" there may be one in your area who is recommended by another IC patient.

:grouphug:
Donna

[maryla]

Katie,

I am so sorry that you had to endure such crappy tx from this sadistic man. It really angers me that these drs exist and treat people that way? Urrrrr

Most of us here have gone through simular tx including myself, until we finally found someone that actually cared about their patients. One of my last uro's actually told me how to kill myself.

Take your power back and find someone who does care about their patients. I had to do that and found a very loving and caring man. I know it is very frustrating to yet again go to a new uro. I know from my own experience that it is stressful. But then again, I was filled with hope!

There are many tx's for IC and it just sounds like he is not willing to help you in anyway.

Please keep us posted and I'm praying that you find someone who actually cares about their patients.

Many hugs and blessings

[KatieB]

Donna, I have looked at the doc list here. The one doc close to me I called before I found my last horrible uro and was told by his nurse when I asked if he treated Ic that "if she had IC, she would not go to him". At least that was honest.
My husband belongs to a CEO group and they have a Health Service available to them. He called them yesterday and they are looking for someone who would be considered a specialist. That would more than likely involve travel and then follow up with a uro here. I'm willing to do that even though it would be difficult. I would also need them to find someone here who would be willing to follow the protocol.
I don't think I've ever been so discouraged in my whole life. I know my attitude will get better eventually. But right now I just feel like I've been punched in the gut, literally and figuratively.
Thank you.

[amaranthe]

Oh, Sweetie, I am so sorry you had such a horrible day pain wise and Dr. wise. Please believe me that there ARE some knowledgable Drs out there who do actually have a decent bedside manner and are familiar with ALL the different options for IC patients. I would look on this site in the area for Dr. recommendations per state and see if you can find someone near you. (However, I must add that "near" is relative. I drive 5 hrs round trip once a month to see my pain Dr. I couldnt find anyone closer who treats chronic IC pain (or IC pain at all). But, I would sure rather drive there once a month (in a great deal of pain since riding in a car is one of my triggers), than I would to be in constant, unremitting pain for the whole rest of the month with no pain meds!

Anyway, if I were you, as bad as this visit was, I would still go ahead and keep the next appt, since it may take you a while to get in to see a really good IC DR. Meanwhile, try not to let his dispositon and lack of bedside manner get to you. (I know, easier said than done.) However, I would either call back, or ask at that appt about a few things. First and foremost, I would ask him if he knew of a Dr. (usually a Gyno) who could test you and d/x for vulvadynia and/or vulvar vestibulitis. I have both and your symptoms sound "textbook" to me. (The things like even wearing clothes "down there" causing pain.) I am guessing that sex is probobly painful too, as well as pap-smears, and even inserting a tampon. If so, you probobly look red and feel raw down there, (like the top layer of your skin is missing and/or like you have thousands of paper cuts.) There are definately meds for this and even an out patient surgery for vulvar vestibulectomy. (I had it about 7 years ago and completely symptom free of those symptoms now about 98-99% of the time. Feel free to PM me if you have any questions.)

Anyway, back to the IC, there are numerous options out there for you as you will see once you peruse this site for even a short amount of time. The following are just a VERY FEW options that you and your Dr. could consider:

1) Ditropan XL or one of the other drying types of meds that decrease freq/urgency. There are many meds in this catagory. That's just one example.

2) Pyridium, Urelle, Urimar-T, etc. These are meds that also help with the freq, urg, but arent as drying, or constipating as Number 1, (nor do they give most patients dry mouth.) I take Urimar T, only as needed. It contains something to help with the freq/urg, and also helps with the burning during urination, (though it turns your Urine a bright, (pretty) turquiouse color! :). It also contains hydrocosimine, an antispasmodic, to help with cramping bladders. It is also a smooth muscle relaxor, since oiur bladders are primarily smooth muscle. This works great for me, even though I only take it as needed, (even though it is r/xed up to 4x per day. Woo! Hoo!

3)This should actually be #1. You should follow the IC Diet. There are links to it on this site. It is the #1 thing you can do to improve your condition and well as prevent further damage by eating alot of acidic foods, (among other bladder no-no's!)

4) You can be evaluated by a pelvic floor specialist. This is b/c many ICers (if not most), have pelvic floor dsyfunction. This causes bladder pain that is very intense on many patients. But, a pelvic floor specialist can help you with physical therapy, (both passive and active, since most do intense massage as part of the recovery.)

5) Antihistimines are often part of the treatment program for an IC patient, due to the mast cells and histimines in our bladders. So, many patients feel alot better after a trial of these. Though Atarax didnt work out for you, there are tons of others out there to try. Most of us have had to try numerous meds before we finally found the right combo of meds/treatments.

6) Rather that DMSO, (which I have No idea why he'd want to do something that painful and invasive that has so little of a success rate), anyway, most Drs. and pts opt for Rescue Instills. They DO use Lidocaine or Marcaine in these, and the cath is teeny tiny...the size of a child's juice box straw, and yes, they WILL lube the cath with Lidocaine and also squirt some inside your Urethra and give it a few minutes to work, to make this more comfortable for you!

7) For pain, there are many options including, physical therapy (if you have PFD or other issues they can help with),neuropathic meds for pain such as Lyrica, Neurontin, Keppra, etc. these work on the nerves and the nerve suppy, so they can help ALOT! Plus, most Drs arent as skittish about r/xing these as they are about r/xing narcotics. And yes, narcotic therapy IS an option for some ICers in chronic pain. Although, some Drs do prefer to refer you to a Pain Mgmt Dr. rather than write the r/xes themselves.

YEs, unfortunately there ARE many Drs who will NOt r/x pain meds for IC under any circumstances. However, there are also many who will! If you need them, then do a search for PM Drs in your area and then try to read on here and talk to others in your area to see if he/she is good with ICers.

PRetty soon, you will find the right Dr. and get on the right combo of meds, treatments, and therapies for you. I pray this happens soon for you.

Sending hugs,
Amaranthe

[KatieB]

I should clarify that I do have a wonderful pain mgmt doc. I honestly don't know where I would be without him. He's not necessarily an IC specialist, but he is willing to work with me on my pain issues.
Don't really have an option as to whether or not to see my ex-uro as he told me "I've done all I can for you". I believe that means don't come back. I have tried Lyrica as I had tried it for my intractable migraine (didn't work) and had many left. I tried it for about 2 weeks and saw no difference in my pain but it did make me dizzy and really screwed up my vision.
I'm going to find another uro. I'm just discouraged right now and feel very hopeless. Thank you for your words of comfort and advice. I'm taking it all to heart. Bless you.

[amaranthe]

So sorry that I also recommended our list here, after you had tried it! (I fell asleep while posting, so I didnt realize that it was already recommended to you.

It looks like now your best method of actually finding a GOOD Dr. woud be to look online at a few of those sites that rate Physcians. Many of them are free, and you can read comments (both positive and negative) from actual patients with their specific praise or complaints. It will also give you general info like ease of getting an appt, friendlness of front office staff, questions about the nurses there, and of course most about the Dr. himself. Personally, I have found these sites to be strikingly accurate in respect to the Drs I have seen.

On a side note, I am amazed the nurse was so honest with you! She obviously doesnt want any ICer to be treated the way he treats his patients. That was extraordinairly honest of her to tell you that. (And also a statement that could have cost her job, (which I am sure she probobly realized, but just didnt care, b/c his treatment of IC patients (or patients in general) was atrocious.

Personally, I would send her a thank you note for sparing you from another long wait for an appt, and then another huge, anger inducing, disappointment. I'd probobly also drop off a Poinsetta or maybe one of those $5 bouquets from the grocery. I just think that because this nurse went "over and beyond" for you that it would be nice to reciprocat in kind. (Although, of course, this isnt necessary, but which one of life's little kindnesses are?)

I hope you find a great Dr/practice very soon! Hope you feel better!

Hugs,
Amaranthe

One last thing worth mentioning regarding pain mgmt DRs in particular.....dont be alarmed if after your initial consultation with the Dr. at a Pain Clinic, you very rarely see him/her, but rather are treated at each monthly visit by the NP. This is very common, from what I have read about these DRs in general, and it certainly holds true for mine as well. (I only see one of the actual Drs in the group (not even necessarily MY OWN Dr., maybe twice a year. And as I mentioned from what I have read online, this appears to be common. But hey, they DO r/x the pain meds I need (since my IC Dr. referred me there b/c he doesnt like r/xing them long term and this has made a difference of night and day! So I guess I shouldnt complain about the manner in which they provide my care.

[sailawaygrl]

Hi Katie,

Amaranthe gave you a lot of good advice. The only thing I might add is a home treatment that you can try and that is just laying in a bathtub of warm water and if it helps you to "go" then just let it happen. (sounds gross but many of us do it)

I just wanted to let you know that many of us have been right where you are. My 18 yr old daughter practically carried me out of a very unkind (to put it nicely) urologist's office in the beginning of my IC journey. I was so discouraged. The one thing you will find with IC is that YOU have to be your best advocate. After crying for a day or two, I got on the internet and found another Dr to see. He helped me to the best of his ability and now I see a Dr that I also drive 5 hours round trip to see. It is worth every bit of trouble I have in getting there to see him.

You might want to check into a book called the IC Survival Guide (I think that is correct), it has a lot of good info on treatments and ideas for help. There is a section in the ICN homepage about books you can get.

Be sure to use this site not only for the message boards but for the vast amount of other info there is on here. Lots of info on self help and treatments. Also, if you go to IChelp.org there is a place on there that you can request Drs that are close to you. They will email you a list and I found that list was much more extensive than the one on this site.

You are so right that just because I Dr says they treat IC doesn't make it so!! I went to one Dr that said they treated IC and PCOS (which I also have) thinking this would be wonderful, I could take care of everything in one place. She tried to send me to specialists for both problems!!

I really just want to let you know that even though you might feel like you are on a boat in the middle of nowhere all alone, you really aren't. So many of us have been where you are or are right there with you now. It is very hard to keep fighting to find help when you are so sick, but you can do it. You can do it because it is all you can do! Lean on us as much as you need to. It does get better, I promise. I thought I was at the end of my rope and then I found my Dr I now see.

Keep trying! Good luck and wishing you pain free days ahead!
S

[KatieB]

I just in tears from all the support. Thank you so much. My first episode of tears came this morning from my wonderful supportive husband who told me "this is the reason I'm here. To take care of you when you can't do it yourself".
And I have learned SO much from this site and from all of you that I will never be able to say thank you enough. I'm taking every suggestion and I trying it.
My PM is SO great. He runs a very small office so I see HIM every month. And he has told me that even though he's not technically trained in IC, he does know about pain and is willing to research and find out what's best for me. We have a long history as he was the doc who gives me injections in my herniated neck disc. He knows I'm not drug seeking. As painful has the disc has been, I've never come into his office crying. Which I did after this IC flare began. So at least I'm lucky that I have him and I trust him. But he really doesn't know about about the drugs that are meant specifically for IC. Which is why I need to find a uro who actually treats IC. I'm just trying right now to overcome the horrible treatment I received yesterday from someone who said he "treats IC". I'll get there, i know. But it may not be today. Like I said, I think I'm still in shock.
Thank you so much. I'm taking and trying all suggestions. Right now my bladder has been in a spasm since about 3 this AM so I'm not at my best. But I have taken a Valium and have my heating pad.
Thank you

[amaranthe]

I agree with Sailawaygirl that you should definately get a copy of "The IC Survival Guide" by Dr. Robert Mouldwin. That book has been the best, single investment I have made for my IC. It provides a list of meds, treatments, etc. and even has a whole chapter that talks about the frequently co-existing conditions of IC such as GERD, Endo, Vulvadynia, VV, Fibro, Pelvic Floor Dysfucntion, etc. It also does an excellent job of describing the common tests for IC as well as what they will feel like. There is also a chapter on Disability, Working, etc. I highly recommend it!

The can be purchased at the ICN Shoppe on this site. (The proceeds help fund this site.) However, if you are on a tighter budget, then you can usually find used copies for sale online very inexpensively. (I bought mine from Amazon for 1 cent, and paid $3.99 for shipping there.) It was the best investment I ever made. Had I known what was in that book, I'd have paid a thousand dollars for that book!

Also, like you, I also suffered from severe migraines for years. (They usually appeared a few days before my period and disappeared as I started.) I always wondered why. Then, I ended up having to have a total hyster when I was 32. I dont know why, but after that, I never had another one. At least in my case, I definately know there was a hormonal connection to mine. So, just wanted to pass that along, so you can ask your DR. to check your hormone level next time you are having a bad migraine. Just an idea!

One last thing....when searching for an IC Dr. you might try looking for a URo-Gyno, since they would be familiar with all of the issues. If that isnt possible, dont rule out being treated by a Gyno. My Gyno treats my IC and is very knowledgable and up to date on everything. He even does the Rescue instills in his office. (He taught me to do them at home so I wouldnt have to come 3x a week or whenever I needed one.) This was alot better for me too, since my bad flares often happen on nights, weekends or holidays when his office is closed. SO, now that I can do these at home, I can get instant relief and dont have to lay there suffering for days till his office is open again! Woo-hoo!

[some_guy]

Hi Katie,

Sorry you had to suffer such treatment from the cold urologist. Don't feel to bad I think many of us have had at least one who seemed cold and uncaring, might be the nature of the urology business. I had a couple of them that were horrible, one just had a bad personality and bedside manner and another was just dismissive like he never heard of IC causing pain and it could not be that bad - I wanted to give that one some blunt force trauma in the groin so he could experience what I was lol.

Everyone is right, you need to find another doctor. There are good ones out there who can and will help.

Mike

[VickiB]

he told me "I've done all I can for you". I believe that means don't come back.
And I think you already know that's in your best interest.

I saw some real stinkers too, including one who was downright ignorant and cruel. Eventually I became so discouraged that I quit looking for medical help for a while and tried to accept the 'I just have to live with this' motto. In hindsight I wish I'd kept pressing on.

Like others have said there are good doctors out there. There are other things to try. Hang in there!

I'm so sorry this has happened to you!
Vicki

[KatieB]

Thank you Mike and Vicki. I know I can't go back to him, that's not even really a question. I just have to find a doctor. And right now, today, I'm having a hard time believing anyone really does treat this. This is my second uro to treat me this way. It's not like he's saying I don't have it. He saying I won't treat it. Of course this was after I grilled his nurse as to whether or not he actually treated IC. I was assured he did. I'm doing some research now and waiting on a call from a doc who used to treat IC before he started teaching. Now he doesn't even see patients anymore. Like I said, discouraged.
But I am so blessed by the support I've gotten here and from my wonderful husband and family. I keep trying to remember that.
Thanks guys!

[KatieB]

Also, I forgot to add that I bought a copy of "The IC Survival Guide" the first week I was diagnosed. And I think I've read the whole thing (some things 2-3 times). I'M learning a lot, why can't my doctors????

[kadi]

Sadly, there are some really bad urologists out there. My first urologist was just plain awful, very similar to your experience. My primary care doctor was worse than useless, labeled me bipolar & blew me off. My second urologist was kind, but just didn't know enough. So for awhile, I drove 1-2 hours each way to Stanford Hospital to see an IC specialist. It was totally worth the drive. Eventually I found a great local urologist who really likes to treat IC patients - I know, hard to imagine, right?

Hang in there. It's unfortunate you found such a jerk, but that's about him, not you!
Keep coming here for support & know that there are good doctors out there, it just takes time to find them...

[KatieB]

I know it's about him. It's just so upsetting to run into so many walls. I'm actively looking now for a new doc as my pc is useless also. I really do thank God for all the support I've had here, with my husband and kids and with my pain mgmt doc. I couldn't bear this alone. I'm in the process of pulling myself up by my bootstraps. Thank you for your support.

[dg2901]

Try a UROGYN or GYN.

[kmstrong07]

Katie B, I am not sue what part of Texas you are in, but I am in Killeen, Tx and my urologist is Dr. Bird. He is in Temple at Scott and White hospital and I think he is pretty good. He is on the list of providers on this website. Are you willing to travel?

[KatieB]

I am absolutely willing to travel. I'm looking into anyone and everyone. If someone has a good doc, I will drive, fly, whatever!! I don't care anymore. I'm desperate. I'm just so leery now of uros who SAY they treat IC when they really don't. I've been burned a couple too many times!
SO, if you have a good doc, no matter where you are, I'm taking suggestions.
Thank you so much!!!

[Linda May]

try to find a reccomended urologist even if you have got to go out of your town. i would want to try rescue treatments for your symtoms it may take several treatments before you start feeling relief. i wish you the best of luck and pray that all will go well for you.:angel:

[KatieB]

Thank you Linda! I did have a great uro but what I didn't realize was that he was really only great for kidney stones. And the last 2 uros I've seen were recommended by my gyno. Also, I called a uro from the list here and was told by his nurse, secretively it seemed to me, that if SHE had IC she would not see him. I'm looking still and taking recommendations.

[vanilla]

I read your post Katie, it's so horrible. But don't give up hope. The Interstitial Cystitis Association will email you a list of doctors who treat IC in your state and any other state your interested in. And I know they have a different list than the IC Network, because I requested the information and noticed more names on ICA list.

http://www.ichelp.org/Page.aspx?pid=663

[KatieB]

I read your post Katie, it's so horrible. But don't give up hope. The Interstitial Cystitis Association will email you a list of doctors who treat IC in your state and any other state your interested in. And I know they have a different list than the IC Network, because I requested the information and noticed more names on ICA list.

http://www.ichelp.org/Page.aspx?pid=663

I'm going to look there right now. Thank you!!

[Linda May]

under urologist in your telephone book pick out a random urologist look up his profile on the computer there should be a ratings pole the you can log into and find out how well of a doctor he is. if i would have done that with my first uro i would never have seen him he had a rating of 1 &1/2 but i did not no and went to the first uro he was a nightmare from a freddy gruger movie. i wish you the best, and research as many doctors as possible for all or any physical problems.

[KatieB]

I'm actively looking and found an organization called P.U.R.E. H.O.P.E. I can't remember what all the letters stand for (too early) but they deal with pelvic pain disorders. I'm calling them today to see if they have any leads on a uro who knows IC. Wish me luck. And thank you for the support!!!

[Linda May]

i wish the best of luck for you, all my doctors i have i checked there background profile before i even made an appointment. so far they all seem to be doing there best and are understanding of all my problems. i really do hope things work out for you, keep in touch let us know how things go for you.:angel: