Pain and work - Interstitial Cystitis Network Support Forum

sweetpea2555 · 04-18-2005, 11:10 PM

I have IC and IBS and I have been in alot of pain. I was off work for six months because of the pain and I found a new doctor who wants me to go back to work two weeks after surgery.(vestibulectomy, laproscopy, and cystoW/hydro). My job requires me to be on my feet all day doing manual labor. I work long shifts wiht no option of sitting down except breaks. I talked to my doctor about more time off today and he said NO! IC is not something to be off work for and I have to "deal" with the pain without pain med.'s. According to my doctor, alot of ICer's deal with this without any problems. I worked ten hours today and wet through three bladder pads enough to get my underwear and pants wet. I rate my pain at a ten or higher on the pain scale of 1-10.
What I want to know, if you work, how do you get through the day when your pain is so bad, and if you can't work, what do you do for income? My doctor said I can't get ssdi because my bladder looks mild and I have severe symptoms and I probaly need to find another job. I'd rather have a baby than go through the pain I have after bending over all day. Those of you who can't work, how severe is your IC and how bad are your symptoms? Please

I don't want to lose my job and my doctor said he thinks I probaly will because I flare like every other day and there is nothing he can do. My job told me I need to go back on medical leave until I get better but I can't until I get my doctor to put me back on medical leave! They notice my pain but the doctor doesn't!

Is this a common problem?

XoChelsey03Xo · 04-19-2005, 03:15 AM

First of all, I'd find another doctor. Who is this doctor? Ask for a medical note for work, so that you are able to use the restroom when you need to. This was not a problem with my doctor. Also, IC is listed under the American Disability Act. I don't know about your other two surgeries, but the cysto/hydro really isn't all that bad. You will be tired the first day from the medicine that they used to put you to sleep and you might hurt the first couple of times you pee. That really should be all. Do you have benefits with the job your at now? If you do take a vacation for another week or so. I wish you the best of luck. I would start looking for a new doctor though, my Mom is a RN and told me that some doctors don't believe IC exist.

Chelsey

***ICNDonna*** · 04-19-2005, 03:18 AM

If your doctor isn't willing to help you, my suggestion would be to see another doctor for a second opinion --- and change doctors if necessary.

Donna

***Sarojini*** · 04-19-2005, 03:55 AM

I agree, it sounds like a second opinion would be worth your while. If you are having so many problems with pain and incontinence, it would seem you are not getting adequate treatment from your current doctor.

Radams · 04-19-2005, 05:16 AM

Your doctor is a moron. I am so sorry you are working and in pain. I "powered through", my pain for years, until it became crippling. GET A NEW DOCTOR. Is this a uro or a FP doc? It will take some searching to find a doctor that not only knows IC but is helpful with pain. You need a pain clinic. Where are you? Maybe someone in your area can suggest a good doc or clinic. This is just my second day on this site. I dont know what we can post, or even how. God Bless you, take care, RA

sweetpea2555 · 04-19-2005, 05:42 AM

Thanks for your replies. I am trying to get in with another doctor but it is taking some time. This one knows alot about IC but is ignorant about the pain. They laughed when I said my job wants me to go on leave until I get it under control. The vestibulectomy is where they remove the vestibule glands in the vagina. I still have stitches and it is sore. I have to use my vacation time because the doctor wants to put some box in my butt that may help my symptoms. Since I just got off leave, I have 30 days to go back on leave without getting fired. Otherwise, I have to wait a year. I asked the doctor to the surgery now and he laughed and said it was his decision and alot of his paitents get fired, especially where I work! Isn't that nice? I just hope I get into this other doctor before it's too late. I was starting to think everyone with IC worked in terrible pain. Those of you who work, are you in alot of pain? Is it so bad it is hard to stand up sometimes? I have more than IC going on and I can usually handle more pain than this. Thanks again!

Babs RN · 04-19-2005, 05:56 AM

Some comedian, this jerk. Seriously though, you need to find another doc and turn this one in to your state board for the inappropriate comments. Unacceptable. I hope you are hanging in there and know we are here for you.

Hugs,
Barb

Babs RN · 04-19-2005, 05:58 AM

PS I worked 12 hour shifts on my feet as an ER nurse until May of last year when the IC won.

DanaW · 04-19-2005, 06:48 AM

Unbelieveable!!!!!!!!!!!!! I agree with the girls. Find another Dr. You mentioned your Dr. wanting to put a box in your butt to help with the pain? Is he referring to an Interstim?? If he is, well, it is not for pain! Please don't jump into it without doing your research. It was suggested to me by 2 Dr.'s and I did my research and turned it down. It really sounds like you have an incompetent Uro. The fact that he laughs when you tell him your concerns!

That makes me mad just reading it! If I were you I would not go back to this Dr. Period.

I can't work a JOB. I have been off since March 1, 2004. I just recently applied for Disability. Can you make it not working? Are you married? I do think that you have some type of Disability that you can get thru work? I have heard others talk about it. That would be a good option for you. Also, if you were to go to a competent Dr. that would help you with pain meds. you may be able to work again. Why don't you do some research in your area for Pain Clinic? Just type in Pain Clinic, city, state. If you are in a small town type in the nearest bigger city. Or type in Pain Management or Pain Specialists. Let us know how everything goes. It is terrible the suffering you are having to go thru. By the way, your current Uro. is NOT an expert on IC, if he doesn't address the fact that you are in pain. I was lucky to have a compassionate Uro. from day one. I don't know what I would have done were I in your shoes. I pray you find a better Dr.

Dana

erma · 12-08-2005, 01:24 PM

I asked the doctor to the surgery now and he laughed and said it was his decision and alot of his paitents get fired, especially where I work! Isn't that nice?
My I am a Christian but I really hope this Dr. gets I.C. and nobody will believe it.
I think you should tell him what for and get another Dr. soon
love erma

cindysd18 · 12-16-2005, 05:52 PM

Dana:

I had my interstim implant 3 years ago during my senior year in college. I am a 9 year IC veteran. Before the implant I voided all night and burned before, during, and after. Sex was a joke and so was driving and working. But I did it all while attending college full-time and working so I could live on my own with sleepless IC nights. After the surgery I noticed immediate relief. It calms down your nerve endings especially in the genitals. I no longer burn at night, sex is better, and it does not hurt to void. You still have to regulate your diet though. I still have some pain but not half as bad as before. Every once in awhile I turn it off to give my nerves a break from stimulation. If I wait a few hours I remember what hell I went through and all the unbearable IC pain comes back.

I have met a few people who have had complications as you can with any surgery. They were overweight and are more at risk. I am in my early 20s and am skinny from always working. I now work full-time as a victim advocate. IC still presents challenges but because of the interstim therapy my symptoms have decreased dramatically. So much so that I am only on one medication...I use to take 5 and still had immense pain. The surgery is reversible and most patients reduce their medication consumption. I don't know how that can be bad. You can turn it off whenever you want. You can also increase or decrease the stimulation. It only requires a lead adjustment every few months.

I hope you have found success with whatever methods you are using. The box in the butt is the generator and is not that bad. I have a toned body and the only mark people can see is an incision scar, it does not stick out! I still get compliments on my butt like I did before surgery. I would rather have a device in me instead of flaming genitals 24/7. It is probably not the best option for every IC patient, but it is useful for pain management.

I don't think medicaid covers it. Insurance companies use to require urinary incontinence for you to qualify for the surgery. I had to take a urodynamics test to make my plea. I use to just void a few drops here and there and the pain was bad. At my checkup a week after surgery I filled an entire speciman cup!! It improves urine streams so that you produce more and void less. This is even with the pelvic floor dysfunction that I had and still have. I believe you can qualify if you are an IC patient but don't quote me on that.lol

When voiding and passing bowels it use to be extremely painful and would cause a flare up. That no longer occurs.

Please don't be afraid of technological innovations. If your IC pain is bad enough and medicine does not work you will do what I did and consider surgery. You just feel a tingling sensation in the genital areas it stimulates and a few days after a lead adjustment you don't even notice the tingling. It is like a gentle massage and is no way painful. When there is no pain you can think of pleasurable things to do.lol

This is not intended to negate your statement. It is just a personal experience.

Cheries · 12-16-2005, 07:40 PM

I am so confused about this interstim thing! Some of you say it was a horrible experience and others say it is terrific. There doesn't seem to be any middle of the road. I am pretty brave when it comes to trying things (and desperate like everyone else) I would just want to make sure I could take it out and not have permanent problems. Even if it helped for a year or something I would take that. Or even if it helped somewhat. What confusion!!

cindysd18 · 12-17-2005, 05:46 AM

Cherie:

I have read some comments about other interstim patients who have complained of aches and pains. That could be due to pelvic floor dysfunction which I also have. I don't have issues with that. Mine was installed in August of 2002 and has been in me since. The fun part was getting knocked out for surgery and sleeping like a baby without getting up to void. I seriously enjoy anesthesia.

I don't know anyone personally who has had nerve damage from the surgery. We all have to function in whatever way possible with this condition. Less medication and a decrease of symptoms is worth it to me. You can go to the Medtronic website and speak to other interstim therapy patients with success stories. But if you are skeptical if they are really patients feel free to ask me any questions. Good luck in whatever decision you make. I think you just have to find a good urologist who cares about the patients. Not just one that implants the surgery and could care less about your follow-ups. Good doctors will check on your symptoms and will notice if anything seems out of order.

Babs RN · 12-17-2005, 06:55 AM

I'm glad you have had great luck with your Interstim, that is awesome. However currently all IC patients receiving the Interstim are counselled that it is for frequency and urgency and not for pain. I personally don't have it, but also want to add that according to the FDA guidelines it is used for incontinence.

Hugs,
Barb

patricia1 · 12-18-2005, 12:14 PM

I am sorry but I have to respond, not everyone has had alot of success with the Interstim. I to have had IC for over 9 yrs now. I got my first Interstim in 2001 and had to have a revision done in May of this year that is still not working right. I am not sure about you comment on surgery risk, and being overweight were more at risk. My problems came from after surgery events that led to problems. One was losing weight and the box sticking out. I was not overweight to begin with, but because I lost alot of weight the pocket the box was in stuck out alot. I now have the new one in my butt and you can see it there also. I still take meds daily for pain even in the beg I still had to do that. I do know of one person specifically that this device has caused them nerve damage that is perm. While yes the surgery is reviserable, because I lost my health insurance when I started having problems it took me over 8 months to find another doctor and over a year before the revision was done. While I agree that tech should be looked at and not be afraid of, there is a down side to this specific tech that is not told to every patient that gets the Interstim. I was never warned before hand of the problems I got after having an auto accident and I was told by my doctor that the problems where normal, when in fact they were not.

Now I am not trying to put the Interstim down, I am very sympathic to those considering and those who have it done. I would never say do or no dont because......but I do try to be there for every single person, and to me if the Interstim can help with one person's IC problems I am very happy, but there is a down side to it and people need to know this. They need to do their research before trying this option and to realize that the Interstim is only consider as a last resort treatment after all other options have failed. Just one more personal experience with the Interstim