mean people suck, especially when they are your mother!

[profhucklebee]

Okay... here goes. I have a vent... lol
My mother is a nurse, she is in China right now with my dad... I had the cysto and hydro on Tuesday, and on Wednesday evening I HAD to drive to my daughter's school to get her (1/2 hour away) so I didn't take my pain meds in the afternoon.
I missed the call from my mom, who was calling to check up on me... because I went home and loaded up on Vicodin cause I am in serious pain now. Okay... the mean part:

I emailed her and told her I was sorry I missed her call, that I am feeling really low and trying to decide if I need to go back to the uro, maybe I have an infection or something...

She sent me an e-mail saying she was "RE: sorry you didn't take better care of yourself"

No kidding!

My mother is a parish nurse! LoL... A church actually pays her to hold people's hands when they are in pain and needing compassion. For her daughter she only has "Sorry you didn't take better care of yourself"?

My gosh, people are astounding!

I am glad I am on so many drugs... lol, I sent her a zinger right back, told her that she is so full of compassion, its a good thing she shares it with people who don't know where she lives!!! LOL

Wow.

I'm calling the doctor... I am in pain.

[dyno]

I know sometimes people say things that make you just sit there and fume.

My mom has done the same things sometimes, I just try to let it go and forget it and it is really tough sometimes.

Do check in with your Dr. and please take it easy for a few days!

[SandyRN]

My mom called me a junkie once....no kidding on that one either. At that time I wasn't even TAKING pain meds. I was looking for a doctor to give me some yes, but wasn't taking them. They came to town expecting me to be all pep and vigor and I was so sick I could barely sit up. I had missed her phone call that morning because I was asleep and she said, "well, I guess since you're a junkie you slept right through our call...I didn't come all the way up here to sit in the hotel room while you sleep it off"! Then she denied she said it, and to this day she denies it! It really, really hurt. It hurts so much when our moms, the one's we really want understanding and compassion from are the ones that turn on us the most sometimes! I'm so sorry this happened to you.

Hugs, Sandy

[JenAZ07]

I am so sorry your mother made such an insensitive remark. That really stinks…..especially when you are in so much pain and just need their support.

My father who I am totally close to has called me a junkie on a number of occasions....after telling him how much medicine I was taking and it wasn’t relieving my pain....(ER visit - 2 shots of morphine did nothing…..and taking multiple oxycodones which do/did nothing). He was sorta joking when he said it, but it still hurt. And then he would question whether I could function taking that much….hello…..if you are in that much pain you don’t get “high” from it. I shot back at him once that I wasn’t a junkie and informed him that the chances of me becoming a typical “junkie” as a chronic pain patient where very low….and he stopped saying it.

Hope you get some relief soon!!!

[windchaser]

i know it is so hard to deal when your family that is supposed to be there to love care and support you treat you like that, I as of a couple people have said have had my mom dad and sister talk to people i know outside my family tell them that i am addicted to pain meds, which is funny because the person they told this to is the only person that supports me and goes to doctors with me, and is not a member of my family and my family denys saying it to her. So I got to the point that I dont take my pain meds but once a day and am in pain the rest of the day because of what they said (NO MORE!!) I dont care what they think they dont have to live my life!!! just know that you have support and love here and we will never say that :) sorry so long on a rant now lol

[snowgirl]

I am so sorry your mother made such an insensitive remark. That really stinks…..especially when you are in so much pain and just need their support.

My father who I am totally close to has called me a junkie on a number of occasions....after telling him how much medicine I was taking and it wasn’t relieving my pain....(ER visit - 2 shots of morphine did nothing…..and taking multiple oxycodones which do/did nothing). He was sorta joking when he said it, but it still hurt. And then he would question whether I could function taking that much….hello…..if you are in that much pain you don’t get “high” from it. I shot back at him once that I wasn’t a junkie and informed him that the chances of me becoming a typical “junkie” as a chronic pain patient where very low….and he stopped saying it.

Hope you get some relief soon!!!
Iknow how you feel. My Dad freiked out when I was taking 5 vicodin a day. He could not believe I was getting 150 a month for 30 days. When I started at pain clinic.......... long story he basically hid me 150 vicodin and locked them up. Now I am at pain clinic on Ms Contin twice a day but lowest dose. I know see that the long acting are better for me then short acting opiates like vicodin. I told me Dad you had to mingle in my business. I could have stayed on 5 vicodin a day and now I am on MORPHINE do you hear me? I was so ****** he hid and locked them up. When he went to Florida I told him take them with you . He did. Thing is he can't take them as vicodin makes him itch all over. Ok let's treat your 46 year old daughter who is an RN and gives narcotics everyday like I was a vicodin addict harldy.

Vicky

[snowgirl]

i know it is so hard to deal when your family that is supposed to be there to love care and support you treat you like that, I as of a couple people have said have had my mom dad and sister talk to people i know outside my family tell them that i am addicted to pain meds, which is funny because the person they told this to is the only person that supports me and goes to doctors with me, and is not a member of my family and my family denys saying it to her. So I got to the point that I dont take my pain meds but once a day and am in pain the rest of the day because of what they said (NO MORE!!) I dont care what they think they dont have to live my life!!! just know that you have support and love here and we will never say that :) sorry so long on a rant now lol
good for you. One lortab 7.5mg a day on IC is not enough I know it. Good for you take then when you need them and as your md says. That's the part about my co- workers that always got me about calling in fmla day and being mean to me when I returned the next day = just like they are going to gigigirl as well........ they have not walked a day in our shoes. This is not nice but I have wished IC on some of them for a day . Iknow that is terrible. Vicky

[stef000]

My mother has a hard time understanding me.....she always thinks its inside my head or i am too afraid to go out so thats why i am housebound (even though i am either in pain or on painkillers....)
She can't believe that i have had chronic pain for 9 years and counting and that i keep getting worse and as i get worse another syndrome or disease pops up...
But she thinks that i just don't have a high pain tolerance and that i am too afraid of living life.....yeah i wish it were that easy......
Yeah i broke my spine (but didnt know it till two years later) and after the fall i had that broke it i was in excruciating pain for a month and a half and she was ready to put me into rehab because of all the t3s i was taking....
The current doc i had said he would have put me on morphine (yeah i have a low pain tolerance...yup sure sounds like it hey??)
And shes the one that has avoided any contact with docs for 15 years and so who is the scared one.....
yeah i have fights with my mom about it a lot but i keep saying that hey its worse for me....i have to schedule around things and rest up if i have to do something as lil as doing laundry and rest after that like it was an all day thing with fifty 2 year olds.......
Yeah it seems that people that don't know chronic pain, they don't understand it at all.....even when you describe the pain you have everyday they just don't understand it.....
it is very hard dealing with that :rant::bonk:
just figured to put my lil story up here.....
i hope for better days though.....:bow:
well hope all is doin good
take great care
hugs n better body days
:hi:

[stef000]

forgot to add that the ER docs didn't do an x-ray even though i thought that not being able to bend over was sorta a sign of something else other than a bruised tailbone and low pain tolerance (thats what they said too to me----even though it was 10 years ago that this all happened i still remember the remarks and stuff...)
the general doc i had at the time (glad i had switched to the doc i have now)
anyway he said that oh those ER docs are on the ball they know what they are doing --------when clearly they don't HAHA

[snowgirl]

My mother has a hard time understanding me.....she always thinks its inside my head or i am too afraid to go out so thats why i am housebound (even though i am either in pain or on painkillers....)
She can't believe that i have had chronic pain for 9 years and counting and that i keep getting worse and as i get worse another syndrome or disease pops up...
But she thinks that i just don't have a high pain tolerance and that i am too afraid of living life.....yeah i wish it were that easy......
Yeah i broke my spine (but didnt know it till two years later) and after the fall i had that broke it i was in excruciating pain for a month and a half and she was ready to put me into rehab because of all the t3s i was taking....
The current doc i had said he would have put me on morphine (yeah i have a low pain tolerance...yup sure sounds like it hey??)
And shes the one that has avoided any contact with docs for 15 years and so who is the scared one.....
yeah i have fights with my mom about it a lot but i keep saying that hey its worse for me....i have to schedule around things and rest up if i have to do something as lil as doing laundry and rest after that like it was an all day thing with fifty 2 year olds.......
Yeah it seems that people that don't know chronic pain, they don't understand it at all.....even when you describe the pain you have everyday they just don't understand it.....
it is very hard dealing with that :rant::bonk:
just figured to put my lil story up here.....
i hope for better days though.....:bow:
well hope all is doin good
take great care
hugs n better body days
:hi:

do you live with your mother? I had to move home after going out on LTD and resigning from my job of 21 years. I had my own real nice apartment. Loved my place and my neighbors.Well my cobra is 700 a month and I could not afford cobra, rent , utilities. thank you my car was just paid off. So, I moved home on September 20th within a few days my father and I were already at it. Two months later November they went to their place in florida and will return in April. I have had the house to myself. I however my father did not ask or would not tell me what the utilites were I write a check and mail it to him in Florida every month. If I was not living here the cable, phone would be off. He still would pay the heat but at a much lower setting. So, I send him a check everymonth. He cashes it. I did this because I don't want to hear about it later that I lived her for nothing and I need to do this do that.I started working with my therapist this week on how to work or get along when my father gets home. It is his tone of voice his smart a** tone and I talk back. He doesn't understand chronic pain. Now mind you for 22years I have had IC. I get cysto-hydro- dmso every 6 months. My uro is world renowned he is close to 68-69 near retirement. My parents are 73. Now my uro talks to them everytime after surgery. He says she has a nasty, nasty, disease. My bladder behaves terrible in the OR. He said oh that poor Vicky. He said to them the day will come when she won't be able to work anymore........... it came May 11th 2007. I go to a pain clinic. You would think after 22 years of treatment and my md's speaking to him post-op he would get it. He knew my nursing career meant everything to me. I suffer from depression........... A couple of weeks ago he told me I should be over this by now. I told my therapist that. This is not the flu. Everyone has their own grieving process. I don't look forward to living here with them in April.
I wish we had a house with a finished basement walk out. I could have my own room, family room and bathroom and have privacy. I now have high bp before my last hydro in November they had to put me on 3 bp meds to get it down. My father makes me nervous and adds to my anxiety level. What caught me is what your mother said to you my father says to me it's all in your head. I am so glad I have an older like 55 pain psychologist who understands the father role in all of this and tries to explain to me where my father is coming from.

I understand believe me. Do you live with your mother? Vicky

[stef000]

No i don't live with my mother......but i work for her though....
Yeah we have arguments a lot.....
They are older.....moms going to be 66 soon and my dad just turned 83....
My dad understands since he is older and has had prostate cancer and other things since he is gettin on in years....so he understands the frustration with docs and all of that...
but my mom doesn't understand at all....she thinks i just want a 'free ride'
i had something else to say but i forgot....:bonk:
had a wee flare comin last night so i took painkillers before it got worse and now i am all groggy/loopy
hehe
but i think we all know about that here....:rolleyes:
anyway if ever you need to vent-----any body here-----message me if ya like...
i am housebound most of the time so i will get back to you pretty quick....
:lmao: HOW IS EVERYONE :lmao: since i know that we ALL love hearing that question :lmao::bonk:
well i hope people are having all right bladder days....yeah my bladder is all weird today but i think it was because yesterday i was dehydrated since they made me wait quite a long time to get into the procedure (gastroscopy-- didn't find any ulcers or anything thinks its esophagal spasms and slow stomach motility---so everything is just irritated and screwed up basically)
but since i couldn't drink any water or anything i was all dehydrated.....
and i paid for it last night let me tell ya
sorry i get babbling sometimes
well hope all are doing well or at least sorta up n about without a flare....
no one needs one of those.....:toilet::bonk:
take great care
hugs n better body days
:hi:

[Grandmav]

When I told my Mother, also a nurse, about my IC her words were:
"so - what this is all my fault for not taking you to the Dr. when you had UTI's when you were a kid?"
I forgot this is the same woman that told me after a two-year nasty divorce where I lost custody of my kids that if I don't lose weight on my fat (You know where) I'll never find another man.
Just because they are nurses it doesn't mean the are always nice. They people too, and say things they will probably regret later.
Let it go - and don't let it stress you out.
My mother regrets all those things she said long ago, and some of the more recent ones too.

I guess I vented a litle too. Sorry! :pray::pray::pray:

[Berkshire Road]

Oh, my, Prof, you and I must be related. I'm so sorry! Just what you need.

I guess I'm going to commiserate a bit and vent a bit at the same time. I won't even try to list the insensitive and, frankly, mean things that have come out of Maman's mouth over the years, but I think the topper was, "Well, you know I didn't really want to have you and I wish we hadn't," (I was 15). Right now she is in Florida with my Dad. She called about three weeks ago and I had injured my back and was bedridden. My husband had to cancel a business trip bc. of this. She asked how I was, I told her these two things, and she said, "Ah well, it's nice to be retired and not have any business trips to worry about anymore. OK, we'll see you next month! Bye!" I hung up the phone and thought, "What was missing from that conversation? Oh, right. "Oh, I'm so sorry, is your back bad?" Sigh. I don't know why I still wait for these attentions when I know they're not coming.

[windchaser]

I dont know abut anyone else but I am so getting tired of hearing "oh im sorry" in that tone that you really know they are just saying that and then walk out the door or say well i have to go call you later grrrrr my step mom is the nurse but my real mom is in california and im in arkansas i get more sympathy from her then anyone in my family when i told her i had IC she almost cried and told me she was so sorry, like it was her fault :( made me feel bad she even offered for me to move to california and she would put me on her insurance since i dont have any but would be to hard for my 3 year old son to be away from his father so i told her if my disability or ssi didnt come in i would think about it... I just hate tho that my step mom,my dad and my sister are all on pain meds and they have to talk behind my back saying how im an addict because i take my pain meds, also my uro is the one that said to make 30 lortab 7.5 last the whole month I talked to him last week when i scheduled my hydro/cysto and told him the pain was just so unbearable that i can barely take care of my son with no help from anyone and he told me that he didnt mind giving me pain meds but i would have to wait for the hydro to get another RX which Is He!! today because i think im in my worst flare ever and have no more pain meds uggg feel so hopeless... so i am praying for the 10th to come so i can get the hydro done and get my pain meds is that bad? lol anyways i guess this is long enough just remember no one can understand unless they have a chronic pain problem, so dont let it bother you to much i know its hard to do but I still try :) ty all I dont know what i would do without this site

[snowgirl]

I have had IC 22 years. For about 11 I took no pain medicine and I had endo then as well. I started with two darvocet everynight for years that was it. Then the last one year two vicodin every night regular strength at bed. My disease progressed over the years with decreased capacity 175cc under anethesia . Then I changed jobs that was more physical. More walking etc. THe pelvic pain went out the roof. Plus I had a hyrdo and my uro took my bladder to 300cc usually he stops at 200cc max. Well, I paid for that over distention for a good year of pain and flare.................. along with newjob......... the pain increased. I took 5 vicodin one every four hours on my days off and weekends I in 20 years never required that. On my days I worked I took nothing but two the night before. I could not take vicodin and work as an RN I would have been fired. So, I know how you feel. years ago 30 vicodin after a hyrdo I would have half a bottle left for the next 6 months.'
Now I understand your pain. One 7.5mg vicodin in nothing when you are in a flare and your pain is high. You need two at a time. Your MD won't let you have 60 a month which still is not very many. You need someone to help an MD with your pain . Go to a specialist and keep it to yourself since your family does not support you. Share it with your mother who is an RN - she sounds like she is your strength of support my friend. Lean on her and she will comfort you as it sound she is now. Vicky

[capricorngirl]

I totally understand where you are coming from. I have to take 10mg of oxycodone just to be able to handle the 2 hr car ride to my dr. My mother and I no longer talk because she told me that she does not believe that I deserve disability and went so far as to call the disability office and told them that I did not deserve it any longer. The whole thing started when I went to the sand dunes in OR with my family and we rode four wheelers on the beach. She said if I could take pain meds and be well enough to ride quads then I should be well enough to work. What she doesnt understand is that, that family vacation was the first in a long time and yes, I did take pain meds and rode the quads, (which is actually not bad in the sand), but after the vacation, I paid for it with a flare that lasted months. She has told others in my family that I am addicted to my pain meds and that if I am to sick to work I shouldnt be out doing things with friends and family. So basically, because I am on disablilty, I am not supposed to have any kind of life. It was all very hurtful to me she is supposed to be my mother, she is supposed to be there to support me and help me. Because of the phone call to disablity, they of course had to review my case and I had to do tons of paperwork, and of course was found to be still disabled. In any case, it hurt me so badly that I have quit talking to her all together. We have not spoken in over 2 yrs. Its sad when the people that are supposed to be your biggest support are a bigger part of the problem (ie stress huge trigger for me, fighting with my mother way stressful). I miss talking with my mom, we used to talk everyday and ironically, she was one of the people that filled out paperwork on my condition for SSA. I just had to make the decision that the stress was to much on my health and in the end my health was more important to me. So, I know how you feel and hopefully in time they will understand and things will get better for you.

[snowgirl]

I am sorry this has happened between your mother and you. I would be really made if family , friends or whoever called the SS office and told them I was not disabled. Do you have a counselor that you talk about things with? If not mabye one would help. Two years some time has passed do you think possibly you and your mother could talk again over the phone baby steps at first and maybe forget this whole thing behind you. You did day she helped you file for SS did she not? So she was supportive of your disease at one time but then made a switch. I hope you can work things out. Will all due respect I am single and don't have children. I hope that some of the ICN people with children close to your age will answer your reply as they are the ones with the words of wisdom and experience to help you out more then I can. However; I know how you feel I would have been mortified and my feelings very hurt. I hope you can find that relationship with your mother again. In th meantime you have friends here on the board who care and understand. Vicky

[GriffsMommy]

It is so strange that this thread was started because I was just talking to my aunt about my mother last night.

She is not as bad as what many of you have to go through but I really don't know her anymore. She and I used to be very very close where I would have at least a two hour phone call with her once a week since we live in different states. She did tell me she was worried about me becoming an addict which did upset me. I told her that if I take the meds the way my dr prescribes them then my body may develop a tolerance and dependency and I would have to ween off of them if I didn't need them anymore but that I would not be an addict. This is info that my dr gave me and made me sign when I started getting pain meds from her. She said that she didn't think she agreed with that. I told her that there is medical evidence that chronic pain patients are very unlikely to become addicts. She said she wasn't sure if she believed that. I told her, just because you don't believe it doesn't mean it's not true.

What has really hurt me as of late though is the fact that she is unwilling to help me after my hysterectomy. It is scheduled for a month from now. I live in PA and she lives in MD, about an hour and a half away. I asked her if she would be willing to come and stay with me for at least a few days when I get home from the hospital because hubby will have to go back to work and I will be at home alone with a three year old. I know the hysto is going to throw my bladder into a major flare and that I'm not going to be ready to be at home alone with Griffin once I get out of the hopsital but since hubby just started a new job this week he can't take too many days off.

As soon as I suggested it she started come up with excuses as to why she couldn't do it. She said she has a lot of trouble sleeping at night and would be worried about trying to sleep here. Not even a good arguement in my opinion because if you can't sleep at night why does it matter where in the hell you aren't sleep, here or there. She wanted to know where she would sleep. I told her hubby would sleep on the couch so that she could sleep with me in my king size bed and there would be plenty of room. I even told her that hubby agreed to drive the hour and a half down there to pick her up and take her back when she was ready to go back since she doesn't like to drive long distances. She actually had the nerve to suggest that I try to schedule my surgery around when my step children will have spring break so that they can be at home to help me out with their little brother when they were home from school. The dr's want me to get the surgery before my last Lupron injection wears off so that only gives them the first two weeks in April to do the surgery and honestly I wanted to schedule it as soon as possible and just get it over with.

It really hurt me that my mother does not want to come and help me after such a major surgery. It would also be a great chance for her to spend some time with her only grandchild since she usually only sees him for a couple of hours every couple of months. Everybody that I have told about this is totally shocked that she is making it pretty clear that she doesn't want to come without down right saying no. Did I mention that my mother doesn't work so that isn't an issue.

I ended up calling my husband's aunt last night almost in tears about it. She is the process of applying for disability so she is not working so I asked her if she would be willing to come and stay with me those first few days when I get out of the hospital. She said she would be more than happy to and that I could tell my mother that I found someone to help me and she didn't have to worry about coming, when I told her, she said, "okay."

I just don't get it, I always felt like we were so close and now I don't even know who she is anymore. If any of our kids were to need surgery as adults and needed help at home afterwards then I would go and help them no matter what I had to do. My aunt, her sister, even said she was shocked and even though she really is very unhappy with some of the choices her daughter has made lately if she needed surgery and needed help she would still go and help her.

Sorry I kinda took over there, I guess I really needed to get that out. Just know that you are not alone. It is so sad that we do not get the support we need from our parents when they are the ones that should be supporting us throughout our whole lives.

[windchaser]

i completely understand all of that, i am lucky tho i have a hydro'cysto on march 10th and my sister "the one said i was addicted before i found out about the IC" is the one that offered to take my 3 year old son for a couple days for me hmmm I think that because the gynos and docs i was seeing couldnt figure out what was wrong, they thought i was faking it now that I know its IC they are trying to be helpful go figure. I actually got told by my grandma when i was 20 and my littlest brother was 16 and living with my other sister in arizona that my mom raised us and that we were old enough that she shouldnt have to do it anymore! I could not believe that... my mom left my 14 year old brother at the time with my 22 year old sister while she moved to california and we are old enough to take care of ourselfs? I would never do that to my son I dont care how old he gets i will always be there for him when he needs me...

[tigger_gal]

I am so sorry that you all have your parents saying thing like that to you:mad:. Some days my mom tells me I don't know why you are having that much pain, I don't.. The other days she says I remember hurting like that and I begged the dr to take my bladder out, (30 years ago) but them DMSO's did wonders, and hydros every 6 months.:confused::confused: other then that she tells me how worried she is about me, and calls me every morning to ask me how I feel.

I printed up that article on how IC pain can Feel like end cancer pain..
Here it is, and you can print it up and mail it to your loved ones who do not have a clue what IC is all about or the pain we endure. you all know I moved, and I have stuff every where un packed, I have lots of articles on IC I will be glad to share when they surface.

I truly hope this helps you

The Pain Facts

Michael Von Korff, ScD, Department Editor

Interstitial Cystitis
Daniel Brookoff, MD PhD; Vicki Ratner, MD

Interstitial cystitis is a syndrome defined by a triad of chronic irritative bladder symptoms (which can include urinary frequency, urinary urgency, or bladder pain); sterile and cytologically negative urine; and characteristic cystoscopic findings, ranging from glomerulations (pinpoint submucosal hemorrhages that are evident after distension of the bladder) to reduced capacity and ulceration of the bladder (Messing, 1992). For the patients, 90% of whom are women (Koziol, 1994), interstitial cystitis often translates into a feeling of having the worst bladder infection of their lives-and one that will not go away. It may mean having a compelling urge to urinate, up to 80 times in a 24-hour period, and intermittent or constant bladder pain.

In most cases, the diagnosis of interstitial cystitis does not take place until several years after the onset of symptoms. The treatments most commonly used by urologists are intravesicular instillations of medications such as heparin, dimethyl sulfoxide (an antiinflammatory agent), sodium oxychlorosene (a detergent), silver nitrate (a caustic), and chromolyn sodium (Sant & LaRock, 1994). Many of these treatments are themselves very painful. Other treatments include tricyclic antidepressants, mast cell stabilizers, pentosanpolysulfate (which can be likened to an orally bioavailable form of heparin), TENS units, physical therapy, and, ultimately, cystectomy (which may not relieve the symptoms). Often, the symptoms will recur or persist after treatment. Reviews of all these therapies appear in the February 1994 edition of Urologic Clinics of North America.

For many patients with interstitial cystitis, pain is a prominent feature of the disease. For some patients, pain becomes the most prominent feature of their lives. A large epidemiologic study found that 55% of patients with interstitial cystitis reported daily or constant pain, and 57% characterized their pain as severe or excruciating (Koziol, 1994). A study at Duke University reported that patients with interstitial cystitis had an average duration of pain of over 7 years and that this pain was more severe than the pain of advanced cancer (Berwick, 1991), leaving the patients with a lower measured quality of life than that of patients on chronic hemodialysis (Held, Hanno, & Wein, 1990). Nonetheless, textbooks on pain management barely mention interstitial cystitis and give no recommendations for treatment. The literature on pain management in interstitial cystitis is virtually nonexistent (Brookoff, in press).

Even though interstitial cystitis was first recognized near the beginning of this century (Nitze, 1907) and was well described a few years later (Hunner, 1914), medical attention has been paid to this syndrome only relatively recently. For years, patients with interstitial cystitis could not get treatment for their condition. Dimethyl sulfoxide, the first drug for interstitial cystitis, did not receive approval from the Food and Drug Administration until 1978. For most of its history, interstitial cystitis has been dismissed as a condition of hysterical postmenopausal females. A standard urology textbook in use until 1985 stated: “Interstitial cystitis...may represent the end-stage of a bladder that has been made irritable by emotional disturbance...a pathway for the discharge of unconscious hatreds” (Walsh, 1979, pp. 1906-1907). This attitude has led to the delays in diagnosis and treatment that are so commonly seen in patients with this disease.

The Interstitial Cystitis Association estimates that interstitial cystitis affects 450,000 people in the United States (Ratner, Slade, & Greene, 1994). This syndrome may have a variety of etiologies (e.g., urinary toxins, bacterial infections, mast cell disorders), which result in chronic inflammation of the urinary bladder. As such, it is an important model for chronic visceral pain and neurogenic inflammation. The frequent overlap of interstitial cystitis with other chronic pain syndromes such as fibromyalgia, irritable bowel syndrome, migraine head-aches, chronic arthritis, allergies, and noncardiac chest pain suggests that interstitial cystitis may be a localized expression of a systemic disorder (Koziol, 1994).


--------------------------------------------------------------------------------
FIGURE 1. Findings of the First U.S. Epidemiological Study About Interstitial Cystitis
--------------------------------------------------------------------------------

It takes an average of 4.5 years and five physicians to arrive at the correct
diagnosis.

For every patient diagnosed with interstitial cystitis, there are five symptomatic patients who have not been diagnosed.

The median age of onset of symptoms is 40; 25% of patients are under 30
years of age.

50% of patients with interstitial cystitis cannot maintain full-time employment because of disease-related disability.

--------------------------------------------------------------------------------
SOURCE: Held, Hanno, & Wein (1990).
--------------------------------------------------------------------------------
Daniel Brookoff is clinical associate professor of preventive medicine in the Department of Medical Education at Methodist Hospital, University of Tennessee, Memphis. Vicki Ratner is president of the Interstitial Cystitis Association (PO Box 1553, Madison Square Station, New York, NY 10159-1553).
References


Berwick, L. (1991, March). Interstitial cystitis patients may require specialized team care. Urology Times, 1.

Brookoff, D. (in press). The causes and treatment of pain in interstitial cystitis. In G.R. Sant (Ed.), Interstitial cystitis. Philadelphia: Raven Press.

Held, P.J., Hanno, P.M., & Wein, A.J. (1990). Epidemiology of interstitial cystitis. In P.M. Hanno, D.R. Staskin, & R.J. Krane (Eds.), Interstitial cystitis (pp. 7-15). London, England: Springer-Verlag.

Hunner, G.L. (1914). A rare type of bladder ulcer in women: Report of cases. Transactions of the Southern Surgery and Gynecology Association, 27, 257.

Koziol, J.A. (1994). Epidemiology of interstitial cystitis. Urologic Clinics of North America, 21, 7-20.

Messing, E.M. (1992). Interstitial cystitis and related syndromes. In P.A. Walsh, A.B. Retik, T.A. Stamey, & E.D. Vaughan Jr. (Eds.), Campbell's urology (pp. 982-1005). Philadelphia: W.B. Saunders.

Nitze, M. (1907). Lehrbuch der Cystoskopie: Ihre Technik und Klinische Bedeutung. Berlin: J.E. Bergman.

Ratner, V., Slade, D., & Greene, G. (1994). Interstitial cystitis. Urologic Clinics of North America, 21, 1-5.

Sant, G.R., & LaRock, D.R. (1994). Standard intravesical therapies for interstitial cystitis. Urologic Clinics of North America, 21, 73-83.

Walsh, A. (1979). Interstitial cystitis. In J.H. Harrison, R.F. Gittes, & A.D. Perlmutter (Eds.), Campbell's urology (pp. 1906-1907). Philadelphia: W.B. Saunders.

Back to APS Bulletin

[windchaser]

ty for that i will definantly send that to my parents and sister lol i still dont think that it will matter tho but at least i tried...

[gottapottie]

My husband and I finally showed his parents (who thought that IC was just "in my head" and "I need to focus on other things") some medical descriptions and info on IC.........we printed articles from the internet, showed them the bladder pics from my last hydro showing how it looked and showed them a pic of a normal bladder, showed them how much it costs us to pay for meds, etc. etc. It shut down the negative comments. It is honestly irrelavent to me what they think......I dont have the energy to dealwith it. My own mother lives in another country (has for over 20 years) and does not really know much about my medical issues. They are retiring this April and returning to live about 3 hours from me.....so I've been thinking about just exactly how I'm gonna sit down and talk to her about my IC and all the issues related to it.

[mayray]

I totally understand your frustration. I dont have much contact with either one of my sisters because of this. One told her kids "not to have any contact with me until I straightened up and stopped faking my disease". Since then they have been forced to read all about IC from me and they are still smug, I think its because she thinks she knows it all and is angry at herself that she was wrong. Its a no win situation. I am just glad that there is somewhere to go to educate those people who want to learn. There is also a difference between someone who takes meds for chronic pain and "a junkie." I never took pain pills because no docs would give them to me but I can only imagine what I would have been called by my family. The only thing we can do is stick together.

[DreamChaser]

I had a terrible flare up when I visited New Orleans a couple years ago. Now keep in mind I'm usuallly in remission. However, when I'm in a flare I do admit I take meds at night and on weekends to sleep it off and I do complain (which of course no one wants to hear). So my sister tells me to suck it up and that she probably has it to but just doesn't think about it. Yeah right. My mom now lives with me. I'm in a huge flare up so my doc has me on a ton of meds (none seem to be working at the moment). My mom tells me I remind her of her mother-in-law who was a very sick woman most of her life - True-my mom is in constant pain with arthrhitis (sh?) and doesn't complain and maybe I am a wimp but geez if it was in my head, would I go into remission for years? My sister has never been ill before so I have to ignore her. The remark hurt.

I'm in a terrible flare up that won't go away. I stay away from people during these times and turn to the chat rooms. This is the only place that doesn't judge me.

I really hope you feel better soon.

[stef000]

Yup in tough times its good to either vent to people that know what your going through or try and help people who are in the same situation as you just to talk it out type thing......
Its so good we have this forum to vent to people and ask questions and stuff...
:bow::bow::bow:
Yeah we just have to stick together on this since its such a weird disease and docs don't help a lot so its just really nice to get help or help or just vent or whatever.....:bow::bow::bow:
its just so great.....
well i hope people are doing all right today
take great care
hugs n better body days
:hi:

P.S. just remember that there ARE people who understand and not only that are probably going through the exact same situation as you :smile tee

[Claredale]

I mean this from the bottom of my heart. I have had IC the majority of my adult life. My MIL and I were what I considered great friends until IC started taking away alot of the things I enjoyed. My MIL would be supportive in front of me, but if we were alone, or she was talking about my "illness", she was so 2 faced. She seems to forget we know alot of the same people, I learned that she really wasn't supportive. I was crushed for many years and tried everything I could to make her understand IC and how it effected my life. After almost 20 years and no telling how many breakdowns or times I just focused on her, I finally realized through the help of my pastor, my husband, my friends and many people on this site that it wasn't my job to make her understand.

These days I limit contact with her. I call her about every other week or so. She doesn't call me at all. When she is sick, I check on her. She never has with me. I have learned to except that and to do what I think is the best for me. My husband is supportive of the fact that I don't spend time with her. She even wrote me an email that I was no longer the DIL that she knew and loved. That definitely brought things to a head with her and my husband, but I wasn't out to ruin their relationship just like I never allowed my kids to know how their sweet grandmother made me feel. My younger son is more intuitive, but I still made things as light as possible. I didn't want to ever be like she was to me. Even though she leads people to believe, I have pulled her son away from him, which I haven't. Believe me, I have friends that say that they would have been divorced just because of all of this. My husband and I love each other. He loves is parents. I will not ask him to choose. He respects that she is a huge cause of stress in my life so I limit my contact with her. Even though the times we got together for years was at my suggestion. We live 5 minutes from my in-laws, it was always her wonderful son, which he is...just doesn't think to just visit or call, but he is always available if they need him. My SIL (my husband's brother) has Lupus and chronic migraines. She lives 3 hours away, so she doesn't deal with the wrath like I do. We both used so much energy to make things different, but now we both know that we can't. We have each other for support.

I don't mean to ramble. I just wanted to hopefully help someone on here since I received the help and support I needed last summer. I am much better from not exposing myself to her being insensitive. She is older now and there will be a day that she will need me. I pray that I will be the Christian person that I know I will need to be and become caring again, but right now, I am protecting myself and have found myself to be phsically and emotionally better with the way things are now.

T83

[mayray]

You are a better person than I, I guess. It just got to the point with me that I would have been a doormat had I let my family continue to treat me the way they did. Anyone with a brain in their head can read what IC is, what it does to one financially and physically, and have true sorrow in their heart for those who suffer. Ignorance of the disease is no excuse. I dont have any other diseases but I educate myself on them when I hear someone is suffering and can understand what they are going through in some way. I give you credit for keeping your marriage intact. I can see why (and know of) many people whose marriages do not last with IC. IC does not usually change one's appearance and, therefore, you get the line "Well you look the same, you cant be that sick" so even though the article compares the pain to cancer or dialysis, people dont accept it as such" I hope you can find something to get you into remission; you sound like a great person.:angel:

[profhucklebee]

Thank you to all the people who responded to my post regarding "Mean people suck".

Wow, what an eye opener! It is amazing how much better I felt when I realized that my experience was just a small fraction of what other people have endured and come out the other side victorious from.

My mother apologized after I called her on her mean behavior, although I can see it is going to be a long road with her... Given her medical background, she thinks she knows something about what we are up against. However, I think chronic pain is a whole 'nother animal though, and I have a feeling we might have only just begun this fight.

Lying in bed for a week in terrible pain with the pictures of my ouchie bladder right next to me on the nightstand put things into a whole different perspective for me, as I was reviewing the last 8 years of this IC vortex. It breaks my heart that I have let this illness take over my spirit, and disconnect me from ME.

I have decided that lying about the kind of pain and amount of pain I have been experiencing has not been a beneficial thing for me, and I am going to work at being more honest with my family regarding the kind of intense pain I am in. Who cares what conclusions the people in my life draw from it... at least I won't be lying to MYSELF anymore about it.
Denial is a strange thing.
If I am honest, perhaps I will gain more support to find answers and get help to feel better and at least manage my life in a more effective manner.
Pretending to be well hasn’t worked for me… I have 8 years of denial under my belt… no more!

Anyhow, thank you for your support and encouragement, advice and prayers!
As for me, today I am going to get up and move around! :smile tee

Thank you! Your support has helped me tremendously!

[JustaPenny]

I am so sorry to hear that your mother would say such a thing to you. Being newly diagnosed with IC, after suffering for two years, I've already come to discover that there is a real lack of compassion for what I am going through. Even my husband made a nasty crack at me about it the other night. He doesn't know that I lost some of my respect for him for it, but I did. I'd like to be able to tell you that things will get better and there will be more understanding, but I know that's not always the case. But I do hope you feel better by the time you read this and don't dwell on the negative comments of others. It's not worth it.