Just on observation RE: # members, newbies

[MakinIT]

Hi

I'm definately not new to these boards but as I signed on today and checked the newest member name and the number of members...I just sorta got overwhelmed. Especially when further down the page a woman is struggling with a doc who tells her "there is no such thing as IC" and she struggles with a huge amount of pain without any help. And she's only in her early 20's, I think.

Why is this? I know it's rhetorical..I just think it's criminal how women are treated with this illness. My chiropractor, male with IC, everytime he has so much as a twitch, his uro clears his schedule and treats him. I just don't get it...I bear no ill will to him, and I'm glad he gets the treatment but what the hell? Maybe my sample size is on the wee bit on the small side but it really sucks. I'm fortunate in that my uro is good but she wouldn't clear her schedule for me. I'd have to see my GP or go to ER and I never go to ER because I have to deal with the "LOOK" when I explain my situation or drug regimen. Ah...sour grapes...but how can docs say this is a no go illness? GRRRRRRRRR.....I just get myself worked up and angry over these confused people who have felt like they are crazy (after having gone through it myself) especially when there so many who suffer.

Sorry...just sounding in frustration.

[Trishann]

Makinit-I do understand about the frustration. I had a lady doctor about 5 years ago. My husband is the insurance carrier so I don't know if this is the reason why my daughter and I was treated this way or not. My husband can bump his finger and she would want him to do all of these tests on him. But if my daughter or I came in with pain, oh take a advil. I went to the ER and was admitted for emergency surgery for gallbladder removal. Figure that one out. Sometimes you can get a bad doctor and sometimes you get a good doctor.
Wish we all can have good doctors.

Oh, I don't go to her no more.

[MakinIT]

What amazes me is it is ALL over the country..same problems with doctors, same issues with gender handleing and same problems with meds....It seems sometimes that Social Security is getting a better grip on this than the Urological community!!! I really feel for people who have just been diagnosede with this. I had a pretty strong back ground in anatomy and biology when I got sick (I was pre med in college, got ill during that time and had to switch priorities. By then I had already dissected a human cadaver and did the lab work in physiology we had to do) I guess that is the only way it allows me to to keep the Docs from BSing me...I have some knowledge of "what's under the hood".

[tigger_gal]

you know you are right.. t took me years of there is nothing wrong, go home. When I went thru the cervical cancer scare my gyn was my ultimate worst doctor. I contiuedto "beg" her tohelp me with the pain, and she told me it was non existant. who is she to tell me I am not in pain?? she refered me back to the reg doc, who sent me back to her. At one point she the gyn told my husband (heavy drinker at the time who constantly screamed at me to get a job, because, nothing was wrong with me) take me home, and explain to me that there is nothing medically wrong with me and stop seeking his attention. *** she had no clue what kind of hell and war she put me thru.
In tears, and bawling my head off to my mom, she goes with me for my next appointment and tells this sorry excuse doctor that she thinks I have IC like her. She says itis impossible because it don' run in families it would be a 1 ina million shot for me to have it.. I finally got my referral for a uro, that promptly tellme thesymptoms I am having are not bladder related and dose an in office cystocopy. He saysyour bladder looks great nothing is wrong, you wasted your time.. Tears set in and he tells me he will amuse me and do a test called a hydro. Out come: after the procdure, he apoligizes to my husband and told him your wife has a severe case of IC she bladder under sedation only held less then 350 cc's with distress. Herbladder looks like a fire ball and there was a lot of bleeding..
My doctors promptly got a letter of dismissal from me.. I told them exactly what I thought of there medical tatics. I have since then got new doctors and they treat me very well..

[MakinIT]

After my "first" hysterectomy (the surgery that removed my uterus and one ovary) I had mild IC symptoms (urgency, some UTI type complaints) the uro my gyo sent me to was a man and very rude. I had had the Dye test to check my kidneys and he didn't want to do my residual urine and told me "if I wanted, he would do a very painful procedure in office that day to look at my bladder" Of course I backed out. I spent the next two years teaching and having to pee all the time, but no pain. After my "second" hysterectomy ,(ok..oompherectomy) when everything was a horrendous mess inside of me,...and no blame on my doctor, it is my body....same thing happened 4 weeks later only now it was severe pain in which I was doubled over and bawling. She checked me over and said I needed to see my GP and get a referral to a Uro. I was frustrated at first, but my GP got me pain relief, and the uro was a male who was a nice older man, gruff marine...he did everything to rule out IC and told me every step of the way what he was doing. Did the in office residual urine...found I held some urine, did the in office cysto and told me I wouldn't like it but it would help him, I couldn't hold much....he tried ditropan...I guess IC patients don't do well on it and I didn't. i also had the painful pubic bone. He still was trying to R/O IC saying "I don't want to pin this on anyone" . So we scheduled the hospital cysto...I could only hold about 400 ccs (I think) and he saw some patchy areas and bleeding. The final straw was an inflammed Mast cell count. I guess it was the worst his office had seen. Lucky me.
tigger Gal: I can only imagine your anger. Nothing like being normal and well adjusted, having a life altering illness enter your life with absolutely NO invite, and all the docs treat you like you are crazy. My husband has taken the alternate tack..he really does try but he refuses any intimacy with me anymore. It's been 3 years...the first year it was pain for me, second year he was scared to try, but I now have gotten over it and I know there is more to intimacy than the usual. I have tried to cuddle with him and he turns his back saying he's tired (which is true but never bothered him before) I don't know...It just screws EVERYTHING up. Once my kids are gone, what is there...?He gave me a wonderful card at christmas saying he wants to renew our relationship and our marriage and wants to be alone with me for a few days next month. But Since then, he's back to being removed from me.

I don't know...life is so short. I was once told that would die old but lonely and bitter...one of those laugh...ha, ha....physic things. Now, I'm not so sure.

ugh...I think the weather is bringing me down.

[tigger_gal]

I was once told that would die old but lonely and bitter...

my husband told me that.... with a few added choice words... I told him he was right, and it was becasue he made me that way :biglaugh:

now I say... nopenot me.. thats your life you're talking about...

[MakinIT]

Funny...I'm irate with my husband now. actual and full...In the last 36 months he has taken my oldest to italy (16th birthday), paid for her choir trip to San Fran, gone to Scotland...and he was stress because told Caitlin he would go to New York as a Chaperone this spring with her choir...and she still needs about about 700 bucks between the two of them. Roger is stressed about it and he was grumpy and I told him when I got paid from SS next month, I would give him 500 bucks...(my private co is paying a full amount in Jan...end of...then in Feb ss is giving me a 1000 for some small payment that private isn't counting...they will start in March...) I decided since the financial stress is due to my loss of job I would offer that. He acted like it was nothing. No thank you, no F you, no nothing. He will remember it next month but I don't want to give it to him next month.

I'm sleepy and my belly really hurts tonight for some reason.

[tigger_gal]

are they related?????????? scary isn't it... I hold a lot of resentment towards mine.. but he is the least of my worries... the door is right there, don't let it hit you in the ass on the way out :biglaugh: I have been put thru enough to last a few life times. As he always says put your big girl pants on and stop whinning.. This chick put on her big girl pants, and he don't like it... I have been belittled and made to cry enough.. I am for me Ash and Jake and thats my final answer.. we got in a fight, I told him to make sure he understands perfectly that I don't need him.. he said something about sex, and I shot back with, thats why they make toys.. end of discussion :biglaugh:

[MakinIT]

I don't know but we got into a "fight" last night. Our fights consist of him saying or doing something that ****** me off (uh..was just reminding him of Caitlin's 6 pm appointment Tuesday night with the doc..and we have discussed it over and over) he freaked and got really ****** b/c he has a big presentation the following day and needs to get ready. I told him fine, I'd take her. He said no..he doesn't want me to drive...then said to cancel it. Caitlin cried...she's in pain (chiro appointment and she's got back pain from her dancing in her musicial) He just flipped...I got ****** and told him maybe he needs to take a vacation and just take it to get caught up and he didn't respond. I told him to **** off and stomped to bed. The kids didn't hear. I am sick of him not responding to me and it Being my fault all the time.

I got to get my daughter

How do you get pics in your signature?

[sami4]

I have kissed my bunch of frogs before I found a Prince of a MD also. The only difference I can see is that I have a shorter fuse than most of you all and dont put up for long with a ignorant, rude MD.
On the aside though, some of the dummest MD's I have had to fire were female. I hate to say this, but its true. I found them to be distracted, over loaded and conflicted between home and job, rigid in their thinking and very much by the book with prescriptions. If something wasnt working, instead of trying something else, they kept doing the same thing? One of them was a gynecologist, the other a urogynecologist who couldnt diagnose IC and told me I had OB.
Presently I have a vulvar specialist who is a woman and she is great. I also like a female surgeon and gynecologist out in Scottsdale a lot. She is one of the best Laproscopic surgeons in the USA, and a very nice person.
Remember, you pay these people, you hire them, and you can fire them. If they cant work you in when you are in pain or a flare, or give you basic respect, then you dont need that. IC is hard enough without having to fight with a physician who is supposed to be helping you.
Sammi

[tigger_gal]

ok.. get this... you are going to love it.. I am at fault for being in debt. Why, because I don't work! (I bring in ssd. which you know is only a fraction of what I made working) he don't think that all the years he drank our income was a problem.and the 40 grand accident he caused that sent us in bankruptcy.. I talk to him and either get ignored or he shakes his head.. ok if I ask when you want to do such and such,what kind of an answer is a shake of your head?? its not like itrattles, the only time he wants to do something is if it is his idea, and he waits till it is rush hour traffic! in detroit mind you!! everything is about him, and tells me its all about me... oh girl I could go on and on... it would make your hair stand on ends..

[sami4]

You are such a beautiful woman, and a brave one to have gone so long without reinforcement of your symptoms with a diagnosis.
I hope you and your husband can become supportive friends again and not have so much stress in your home.
A single Aunt of mine once said,"I was never so loney as when I was married." A sad, sad insight into the immaturity of too many men who remain self centered boys.
Sammi

[MakinIT]

Tigger: You and I need to meet at starbucks!!!!My husband has never said that I cause the debt BUT the body language is there. OH MY GOD..I've found out that I have some extra money coming in from various dribs and drabs of money that social security owes me (besides my back pay) and my husband seems to think I owe him all the money...after all the crap I've been through I WANNA BUY SOMETHING FOR ME..Like I wanto buy clothing for myself, or stuff for my kids...I EVEN may want to buy one of the new iPhones (I love apple products and we have all Mac stuff and it this iphone syncs everything in your house...Totally cool. do I sound like a 15 year old or what) Seriously...I hate the guilt trip regarding the damn money....poop happens and life is highway and all those methaphors. we don't get a choice of what we are handed only what we do with it. I had a really messed up incident w/my husband last night. We haven't been "intimate" in 3 years for various reasons...mainly drugs wiping me out and pain but my libido has been bad too. I've weaned myself from some antihistimes so I could be more awake and alert. My libido is up so I asked him in a playful way to come to bed with me and he was on his way to bed. I went in, next thing I knew it was 2 am (I fall asleep easy) and he was on the couch . I got up and he heard me and scurried to bed. After I peed I asked "what Up.." (obviously not what I wanted) He said he was very tired, in a grumpy way, and was not in the mood for this, he had way too much to do ( a very important presentation at a high school on the way up MT. Hood, in Sandy...) So struggled with this today...I finally just sent him an email that said I loved him and I was sorry to have just brought this on when he was tired. I was lonely for him and I was trying to cut the meds tohelp with our relationship. My pain was the same so we could be creative...no need to be monks. I also told him that if It was an issue of attraction we have deeper problems so he needs to talk with me. Grr. men.

I don't know...I also am struggling because 5 days I got up off the couch and had a severe case of vertigo and I think I momentarily passed out. Wierd...but as I was falling I knew the coffee table was going to be right where my head would hit so I twisted and landed with the utmost grace..cough, cough..I thought I was fine but my foot was a little sore. Figured I twisted it. I'm so flippin graceful I do it all the time. but everyday since it has been sorer and sorer. its the bone right next to the heel bone, bottom side, very sore. reading up on the anatomy there are a couple of ligaments that insert there but it didn't hurt that bad when I did it. Now my leg throbs and the bottom of my foot hurts along the edge of my heel. I can't "evert" my foot...(move it to the outside) So, I either fractured it or tore a ligament. I had a minor tear earlier in the fall but this really hurts. What has me thinking "uh oh" is that the pain is worse everday.

Oh well...hey you all..i gotta sleep...by myself again. husband is finishing his work on his presentaion tomorrow .

Take care.

Tracey

[tigger_gal]

whats more fun then having a husband that is an all about me person.. Life is just a barrel of laughs... NOT....
Sami your aunt is right, I have never been so lonley in my life.

I have supported my husband thru thick and thin. I have stood by his side no matter what he had to throw at me, yet, where was he when I needed him?
My friends tell me I have put up with more then they could stand. To give you an idea of how "considerate" of my well being and my feelings he is, When I had my hysterectomy last year, he lied to me and said he could not take off work to go to the hospital. (I find this out months later when he accidently blurted it out, when I questioned why he was covering for another guy at work) anywho. he never called me in the hospital, or came to visit. He never made any arraingements to get himself to and from work... so 4 days after my hysteroctomy, I was driving him to and from work.. He has no respect for me and I know this. Right now its a matter of time to accomplish something I started a year ago. Then I am putting on my red high heals.. lmao.... One day it will be the wrong thing screamed at me on the wrong day.. I won't take too much more of his disrespectful attitude towards me..
He eitheris yelling about something or sitting in from of the pc, or sitting here looking so ****** and depresed...

[MakinIT]

Tigger: Do you ever wonder sometimes if he is "jealous" of the attn you get? (Or the attn you did get when first dx'd before it became old news and everyone else moved on...I personnally got that treatment, but it stopped, once it was realized my pay was cut and I was struggling to keep my sanity altough my husband was never jealous of my attn..he was just sympathetic at first, all "we'll do whatever we have to do " to help mom with this. It wore off fast when it cramped it his freedom. He is used to just going off and doing whatever he wants, and now that I was struggling with pain, and my doctors had told him he needed to be near by while they figured what would work(because of my allergies and pain med side effects.) Then resentment and depression set in. It sounds like your husband is a depressed asshole. Much like my own. ha, ha. But mine has his moments..Just as I am on the edge of the cliff about to go over in my marriage..he does something, like, oh....bring me home a minature beach set with a beautiful card and a promise to go with for 2 full nights to my favorite bed and breakfast WITHOUT the kids at the coast....OR...he knows my computer (little laptop, cuter than hell but I've had it 4 years ...works well but I need an update) is a major frustration so he is doing all he can to get me something, ( a new MAC but I may wait until the iPhones come out...except I can't word process on them...dammit...and I need more space.)

So...and he has no sympathy for my foot. I know I broke the bone next to the heel. Thankfully, I have a BOOT from other clutzy moments. But he has no time to drive me to the doctor so I have to wait until monday when my appt comes...it really hurts, everyday is worse. I can't take IBU or Naprox because Im allergic. Its gone from a mild almost non existent pain to the outer arch hurting...like I've been doing calf raises , to yesterday whenit hurt to put my foot down...now my entire leg hurts, down into my toes. His dad is ****** b/c I won't drive him anywhere today (I'm not supposed to drive anyway but I said I would take him for errands but I can't shift or anything....I actually think I tore my ligament...It really, really, hurts.)

You need to clear the toxicity from your life. I know how hard it is, I've been so hurt by my husband, over and over. But much of it is misinterpretation on my part, and after 20 years I should know my husband is a moody jerk. (his words) Your husband and the hospital....mine was similar. my hysto..he took me...made sure I made it through, gave me kiss when I was conscious...and both gyno surgies that night went to concerts. Too hungover the next morning to see me, the girls drug him outta bed and he brought them for 15 minutes, spending that time pacing and staring at the wall like he was an unwelcome tag along. like that each day. Brought me home. Did make sure I was comfortable, broughtmy pills, food. Helped me up. I lost alot of trust in him, and this is prob why I still act the way I do around him, when I was prego with my Youngest. I developed a very severe case of Preeclampsia. The Doc wanted to hospitalize me and I was only 29 weeks along. I knew I would go bananas. So she called my husband in, told him how serious the disease was and told him I could have a stroke, go into a seizure and die. (my BP was quite high and I was spilling protien) She told him I could go home IF he was there 24 hours, if he took care of my older daughter (5 at the time) and if he kept me in bed except to pee. (and would return me to the hospital at even the slightest strange behavior or color change or whatever) He nodded and said ok. He had made plans for that weekend to visit his friend he gets drunk with (his friend lives 120 miles away) So on our way home (OH...and he was supposed to leave that day) I said "wow, I'm really sorry, youre going to have to call Mike and cancel the weekend". He looked at me like I was from Mars. "why would I do THAT?" I just stared at him. "Uh, b/c I might die....I'm close to stroking out" He just shook his head, said I'd be fine, besides my friend (who had just had a baby) lived nearby. (So, I'm supposed to call before I seizue?) I told him to turn around and take me to the hospital. He didn't. Just left. He did call about every hour from Eugene. And he came home a day early. (I wasn't allowed to win completely) And it was a good thing he came home b/c my doc called and said she wanted me in the hospital. But you know, I worry to death about him and times when he has had procedures or surgeries I worry and am there the entire time.

Oh...I had an MRI of my Brain about 5 years later...I have a white patchy area over the speech/short term memory area of brain which make sense to me.....but the nuero doc asked me if I had ever had eclampsia.....So I had had a stroke during that time.

Tracey

[Berkshire Road]

No kidding about gender inequality. I've found that whenever I bring my husband with me to a doctor, not only does the doctor primarily speak to him, but we also get a lot more information. My husband completely agrees with this assessment.

You're right; it is criminal.

[MakinIT]

Well you know how men are...we are little silly women, hysterical slaves to our emotions and we don't know nothing 'bout nuthin because we are too worried about our hotflashes and little pains. It is terrible. My chiropractic friend/doctor had another bladder biopsy and prostate surgery today....W/O question..(I'm glad he had it done but walked in and said OW and his uro said "it needs to be done")

[tina118]

you know i am blessed with a really good Uro (and my first one i might add) actually there are two a male Dr. and his Daughter-in-law work in the same office.. anyway my very first appointment she said "Sounds like you have IC" and signed me up for cystoscope (after a series of questions that i had to rate u knoe on a 1-5 scale). had the test, was showed the pics and explained what the meant "textbook IC pictures" I believe is how he put it(male uro did scope).

But the road up to that point was paved in misdiagnosis and and those all time favorites "we can't find anything wrong" but i had the fortune, to be blessed with a moving kidney stone, so my Dr. send me to this Uro and i really feel on the right track now for treatment for whats IS RALLY wrong....

[barbour1]

In the early 90's i went to my primary (female she told me it was stress but after going to the er several times and finding blood in my urine they sent me to a uro (male who sent me to a specialist who primary subject is ic (male dr. the guy dr, where better to me.

[MakinIT]

At least it looks like some of the urologists are getting better...many, though, still don't like to give adequate pain medication...mine is a sweetie, she doesn't give pain meds though...she will do valium for you though....she said my bladder is in extreme spasms..which means my entire pelvic floor and all. For about 2 years I was pretty much in a zombie state, until I cut out the antihistimes they prescribed. I am in more pain but I can think straight. I still sleep throughout the day on and off b/c of the morphine I'm on. (That's from the G.P/)

[tigger_gal]

mine only sucked up when he totaled my truck, for the most part your words of "depressed asshole" fullly fits mine to a tee!... (will writetomorrow, whenthe pillsaren'tkickingin so well :biglaugh:)