Where to begin?

[Crimson&Clover]

Thank you for this wonderful platform…I have been lurking here for a while and have finally decided to join. I am not sure where to begin – so I guess I’ll just begin…

I’m a 59 year old mother and grandmother. Past abdominal surgery’s I have had are C-Section, tubaligation, hernia surgery, radical hysterectomy and bi-lateral oopherectomy with removal of sixty-three lymph nodes for cervical cancer, and lastly, emergency gall bladder surgery. I don’t know if this has any relevancy to IC, but I have many allergies. I have not, as of yet, been ‘formally’ diagnosed with IC, but after doing extensive online research – I suspect I may have had ‘undiagnosed’ IC for 40 years now. What brought me to seek help at this time from an Urologist was a very sudden change in my urinary frequency/urgency/pressure…that turned into burning pain and frequent intense pelvic discomfort Thank God for this forum…I have learned so much here. Thank you all.

To make a long story short, I have been dealing with urgency, frequency, and bladder pressure on and off for 40 years. Things changed quickly after drinking the prep solution for a routine colonoscopy; my bladder behavior very suddenly and very drastically changed for the worse. Something was all of a sudden different – and I knew it immediately after drinking the prep.
Due to the scar tissue present in my colon from all the prior abdominal surgery’s I have had, the gastroenterologist was unable to complete the first colonoscopy using a pediatric endoscope. As a result, a ‘repeat’ colonoscopy was then scheduled a few weeks later under general anesthesia in the hospital, which required again drinking the bowl prep solution (movi-prep) a second time. My bladder has not been the same since the first (incomplete) colonoscopy, and then got worse after the second colonoscopy a few weeks later. After both colonoscopies, I went home and experienced excruciating pain for six to eight hours, which finally subsided. Symptoms of bladder and urethra issues then immediately escalated.

So for almost three months now, I have experienced pelvic spasms and chronic to severe pain in my abdomen, bladder, lower back and urethra, along with urination approximately thirty six to forty times a day. The pain feels like an acid sting/burn, and is only alleviated briefly during urination, but comes back immediately after. Most nights I am up voiding six to twelve times. I feel like I live my life in the bathroom. I am exhausted. My primary care physician thought I should schedule a urology appointment, as I have been on (generic) Detrol for frequent urination for almost two years. After making an appointment with a female urologist, the wait to get in for an appointment was one month. I patiently waited.

By the time the date for the appointment finally arrived, I was feeling very weak and increasingly debilitated. I don’t know if this is relevant to anything, but my in office blood pressure was 90 over 50…quite a bit lower than normal. I kept a voiding diary, informed the urologist of past surgeries and medications, and told her what has been going on the past few months since the two colonoscopies. I was hopeful for an informative and intelligent two-way communication to begin to sort out this condition and get on with the process of living – but she was very aloof and appeared completely disinterested in anything I had to say. The in office urine culture came back negative for infection, but showed microscopic blood. (I had to ask about the urine test – she did not voluntarily inform me of anything.)

I did not tell her of my suspicions of IC as I wanted her unbiased and professional opinion. After a very brief exam and a couple of questions about incontinence (which has never been a problem) she told me she suspected I may have IC, and sent me off with a prescription for Elmiron - along with orders for blood work and an abdominal and pelvic CT scan, both with and without contrast. She quickly stated that after she received those lab and radiology results, (which she said the receptionists at the front desk would schedule), she would call to schedule a follow-up ‘in office cystoscopy’ for my next visit.

I am not normally a complainer, and told her I never had experienced such intense pain for so long, and asked her about pain management in the interim, and she informed me that neither she nor any of her fellow urologists in the practice believe in prescribing pain medication for IC. She then told me to take Tylenol or Motrin if I was hurting. I told her that neither Tylenol nor Motrin alleviated my pain, (Motrin actually aggravated the pain), and I was a t a loss as to how to get on with the process of coping on a daily basis with my responsibilities. I was really taken aback by her disrespect and lack of listening to me – I have never encountered that type of doctor/patient relationship before. I told her that I was not a drug addict, that I had responsibilities that required me to be able to function, and that I needed some ‘relief’ simply to manage my life day to day - as I felt that my body was becoming more and more debilitated from trying to manage this constant chronic pain with no relief. (Normally I am a very active 59 year old woman, and with the help of my husband of 40 years, we are raising three of our grandchildren, aged ten, seven, and four.)

She looked at me perturbed saying “I didn’t say you were a drug addict”, and then reluctantly wrote out a prescription for ten Vicodin pills, telling me not to take them unless it was ‘absolutely necessary’, and then quickly left the room. (She had no clue about me or what I am about – and simply did not care enough to give me the time of day. She had her own definitive agenda, which involved moving on as quickly as possible to the next patient.) She quickly exited the room and sent me off to the front desk, explaining nothing about Elmiron, the tests she ordered, IC, or anything else. I was both astonished and puzzled by her abrasive and unprofessional behavior. I gathered up my papers that I had carefully prepared ahead of time for this visit, and went to the front desk… more confused than when I arrived.
I went home and cried. I waited another three days and never heard from the urologist office. I was feeling worse and worse, and finally called the urologist office to see if the blood test and abdominal and pelvic CT scans were scheduled yet. The receptionist told me to call a lab and schedule my own blood work and CT scans wherever I wanted. I did. The medical facility called me back to see if I had any allergies, and I told them of my allergies (mainly to shellfish). Due to my allergies, they told me I had to have the CT scans in the hospital, and had to first go to my pharmacy and pick up two medications that I needed to take prior to having the CT scans. I followed all the instructions, determined, but feeling more tired, sick, and debilitated as each day went by. As the days passed after my original urology appointment, I felt weaker and weaker due to my inability to effectively manage this chronic pain.

I eventually became so ill I just stayed in bed – not having the energy to eat or to get up. This behavior was so unlike me that my daughter and husband insisted that I visit my primary care doctor or go to the ER immediately, as I had now began developing a sharp cough, chills, total loss of appetite, and complete lethargy. Concerned, my husband went with me to make sure that I told my primary care doctor all that had been transpiring due to both the physical exhaustion, lung congestion, and the suspected IC diagnosis. He didn’t know what was going on with me, or if there was a connection to what was now physically happening to me in more areas than one. On that Wednesday, my primary care doctor took another urine culture (to be sent out), and in the interim put me on the antibiotic - Augmentin – we were not sure what the antibiotic was for as too much was happening. (The urine culture ultimately came back negative for UTI).

The following Friday I went to the hospital and had the CT scans, and within an hour of getting home from the hospital, the nurse from the urology office called me expressing concern, saying that the hospital radiologist just called the office and faxed over the results of the CT scans. The radiologist stated that the CT results showed that I have a bad patch of pneumonia in my lungs, and they told me to call my primary care doctor immediately to let him know. The urology nurse asked me if I was aware of this condition, and I told her I was put on an antibiotic but I was not sure for what, and that I had been becoming weaker and weaker day by day trying to deal with the pelvic, back, and bladder pain. I was so sick everywhere, and no longer knew where to turn to get help. I explained to the urology nurse that due to chronic pain, I felt I no longer had the strength or energy to fight off anything. (I have never had pneumonia before, but never have I experienced such debilitating and chronic pain on a daily basis either.) I then asked the nurse about scheduling my next urology appointment and was informed that the pneumonia has to be cleared up before scheduling the in office Cystoscopy. Next week I am scheduled for an appointment with my primary care physician (and perhaps another CT scan) to see if the pneumonia has cleared. The urology office scheduled a Cystoscopy for June 15th (six weeks after my original appointment).

I have had a few serious medical conditions during the course of my life, to include cancer, and I guess the reason I am writing is to simply vent my frustrations with respect to the urologist that I am paying for “treatment”. I feel that I have never before in my life been in so much debilitating pain, nor have I ever been so disrespected and discouraged about my health condition. I need medical help, and feel helpless that I am being ‘dismissed’ over a painful chronic medical condition that prevents me from living my life and caring for my grandchildren. The urologist treated me as if I was simply a ‘number’ on her patient roster for the day; she listened to little of what I said, explained nothing, and dismissed me as if I was ignorant and irrelevant, then quickly moved on to the next patient.

Thanks to the information provided here on this site from all the wonderful people here; hot baths and heating pads help to relieve some of the pain, (but unfortunately I cannot sit in the tub all day…if only life were that simple.) I have also eliminated everything from my diet that is considered an ‘IC trigger’ – and I’m not sure it has had the impact I had hoped for…perhaps it takes weeks for the bladder to settle down? I am normally so positive and usually I am the ‘eternal optimist’ about everything in life, but these days I’m not sure what else I can do to get back up on my feet and get on with my life. I looked on the site under ‘Professionals’ for recommended IC specialists in my area, found one Urologist within an hour away, and called to find out that he is not accepting any new patients and hasn’t been for a year and a half now. I feel doomed.

My young grandchildren need me to be as healthy and as energetic as I used to be before all this, as I am their primary nurturer and caregiver – I only hope and pray there is a brighter light somewhere along the course of this journey.

If you made it reading this far, thanks very much for listening. I apologize for the length of this post…it is just nice be to able to “connect” with others that perhaps understand some of what I have been experiencing. You are a wonderful and supportive group, and I appreciate you all being here.

[Briza]

Welcome to the board!
I'm glad you decided to post...much support is on the way now that you have!

[NancyB]

Dear Crimson and Clover -

Welcome to the ICN. I am sorry that you have had so many medical issues as well as probable IC.

I was wondering if you mentioned the fact that you had IC to the IC physician's office that you called. If you didn't, you might want to call them back and tell them that you got his/her name off of the ICN site and you need help. Maybe they will talk with him/her and see if you can be seen. It is worth a try. You definitely need to see another uro. You might also call all the other uros in your area and see if they see patients with IC.

As far as pain meds go, you might want to go to your primary care doctor and see if you can get some pain meds through him/her until you get a new uro and a diagnosis. After that, you can ask for a referral to a pain clinic if the uro you see won't prescribe meds for you.

Hope this information is helpful to you.

NancyB

[lonely sole]

Hi C&C,

I know all too well what it is like to deal with terrible doctors and the frustration that follows when it comes to IC.

I just wanted to say keep your chin up, don't give up. The IC journey is a new one for me (potentially, still fighting with the healthcare system to diagnose me correctly), but there are a lot of very helpful folk on this board that may have suggestions on various coping strategies.

I'm sending thoughts and prayers your way. Hang in there.

Cri.

[VickiB]

Hi Crimson & Clover (love that song!)

to the ICN!

Wow, you've been through a lot! I'm so sorry for the way you are being treated by your urologist. You're right, you're paying for their services and at the very least you should expect to be taken seriously and shown some respect! If you do have IC, and that sounds possible from your description, a good doctor-patient relationship is very important. Unfortunately, many of us have had to try multiple doctors before finding the right one with whom we can work with.

I looked on the site under ‘Professionals’ for recommended IC specialists in my area, found one Urologist within an hour away, and called to find out that he is not accepting any new patients and hasn’t been for a year and a half now. I feel doomed.

Hang in there! Just because a doctor isn't listed on the site doesn't mean they aren't capable of treating you. My Uro isn't listed and personally I think he's pretty darn good! I would call around and ask. You may find a real gem!

You must be one strong lady to be raising three grandchildren in their age group! I'm worn out just thinking about what it would be like having my two full time!

Vicki

[maryla]

C & C,

I feel your pain and frustration, I have been where you are. My former GYN is the first person to d'x me with IC. His words were "you have a disease called IC and you will have to take this script for the rest of your life, and your hair may fall out?????? Or I can refer you to a Uro. I had to have him write down what it was he called my d'x and I told him I was going home to research it (IC)before I took anything. His comment was, "it will scare you" I just said I don't scare easily. I went home reseached IC and that is when I found this site, and let me tell you it scared the ba-jeuss out of me. I made my own apointment with a uro (that is on the list here) and let me tell you, he was THE most condesending and disrepectfulist dr that I have ever seen. I was just soooo sick from being in pain and being scared to death, One of my questions to him was, "why am I so sick" and I mean so hateful his answer was " I don't know why your so sick!" The only thing he wanted to ask me was how, my gyn could d'x me with a urodynamics test. How was I suppose to know. Well he didn't last long. Then the next one basically told me how to kill myself. I'm not kidding you! MY husband exploded and that was the end of him. This all took almost 2 years, then I found my Godsend of a dr. Who, gave me a script of pain meds and asked me what I'd been taking for pain. I told him nothing and his comment was "you're a better man than I"

You are right about the motrin making you worse, Dr. Rackley at the Cleveland Clinic told me never to take nsaids. He said that they aggravate the bladder.

You have came to the right place indeed. Oh and my question is how can she d'x you with a cystoscope? My dr says the only way is by hydrodistention, while the bladder is distended is when you can see all the cracks.

I'm going to send you a private message.

Hugs and blessings

[SharonA]

Crimson&Clover... to the ICN...I am so glad you found us.

I am so sorry that you have been treated so badly by doctors. I am sure you have read enough posts to realize that this is not unusual. It happens more than it should. I don't know why. I wish I did. It even happened to me, so, I totally understand how disappointed, hurt and frustrated you must be.

It is probably best that you try to find another Urologist. Ask you PCP for a recommendation at your next appointment. BTW...My PCP is the doctor who treats me. She is very kind, understanding, knows my medical history, and also understands just how painful IC can be. She does not usually prescribe pain medications, but has done it for me in the past.

I am hoping you will be able to find the help you deserve.

[Crimson&Clover]

Dear Ladies,

Thank you all so much for your amazing display of kindness, your responses, suggestions, and concerns...It is so comforting to know that all of you actually know what I am feeling. I also want to thank those of you who responded to me privately...I replied to each of you, but I am new to the forum and am not certain I did it "right"...

To answer some of your questions...

Nancy...The receptionist who answered the phone with respect to the Urologist I eventually called (based on the recommendation from this site) and who I tried to contact for an appointment -after realizing the mistake I made going to the the only female Urologist close by - and who works within a practice of all male Urologist's and was certainly young enough to be my daughter), had explained to me that their office had been trying to 'get the word out' that this Urologist was no longer taking on any new 'IC patients'.

I did tell her that I got his name from the ICN website and that I had a 'tentative' diagnosis of IC. The receptionist then told me that even though he was not accepting new patients, I could, however, participate in one of his IC 'research' studies, but he would definitely not accept any new IC patients. Discouraged, I thanked her for her time and decided then and there I may be 'doomed' with this new illness. I was thinking along those lines only because I was so sick and in such pain, and 'help' seemed to be illusive and just a 'figment of my imagination'. I am normally so strong and don't ask for help - I give help - but this is beyond my ability to remain strong. Once I regain more strength, I will resume my search for a new Urologist, and in the interim, will inform my PC of how disinterested and disrespectful the female Urologist I had an appointment with, actually is. It is mainly my fault because when my PC suggested that I see a Urologist, I requested a female - thinking that a female may better understand this disease since from my research, it is a disease that mainly affects women. How wrong I was.

Mary...I have only seen this young female Urologist once, and I must say I hate to go back to her on June 15th, but she is the one who has all my lab work and the results of my pelvic and abdominal CT scans. They have told me nothing of those results - except to inform me I have pneumonia. In my (maybe twisted mind ) I think that once I receive a 'definitive baldder diagnosis', I will be better equipped to know what to do next. You asked me how an in office 'cystoscopy' will diagnose IC...I don't know the naswer to that, or what her agenda is. She explained nothing to me, and just told me that after the blood work and CT scans, she would set up an appointment for an in office cystoscopy - so I am presuming (perhaps mistakingly?) that the in office cystoscopy will diagnosis 'something'? I'm so confused, and she has not helped in any way - at all.

When I asked her what an ' in office cystoscopy' entailed, she curtly replied that it was in an office procedure to look at the urethra with a scope - or something to that effect. I then asked her if that would induce more urethra pain in addition to the pain I was already having, and she replied "well it isn't pleasant". I was too tired to request more information from her, as it was crystal clear that she didn't care about me or anthing more than moving on to the next patient. Perhaps to her I was just an old woman with another bladder issue, who was neither worthy of her time or her respect.

When she earlier asked me about "incontinence" and I told her I never had a problem with incontinence, she looked at me like she didn't believe me. She quickly lifted up my gown and said "cough". I remember being disgusted with her attitude, and when there was NO urine leakage, only then did she believe me. I couldn't help but think how she would feel if someone in the medical profession treated 'her' mother with the dismissal and disrespect she had shown to me. So I guess I don't know what the answer to your queston is...

I'm running on 'blind faith' here that I will eventually find relief, (and have no faith or hope in this urologist - but I do need some answers). What does an 'office cystoscopy' reveal - if anything? All I know for certain is that for 40years I have been urinating between one and five times an hour...often with bladder pressure and pain from the abdominal adhesions...but now things are much worse and the burning acid pain and low back pain now totally disrupt my life on a daily basis. I am still trying to keep a sense of humor amidst the pain, so today I told my husband he should install a big screen TV in the bathroom - as that is where I live.

I'm more confused than ever...but I am sincerely so appreciative of all the help and information here from all of you truly amazing women. I bought Prelief, but don't know if it really works or not because irrespective of avoiding everything that could possibly be an IC trigger, I have been having a 'major private peeing fest' for almost three months now. I cannot wait for the day that I can get back to practicing Pilates - and maybe even taking my vitamins - but right now I am too weak to do much of anything - but I do feel the pneumonia is slowly getting better. Thank you all.

Warm regards,
C&C

[VickiB]

What does an 'office cystoscopy' reveal - if anything?

My Urologist told me the the in-office cystoscopy would not necessarily show IC, but was needed to rule out other possible causes for my symptoms.

It's not unusual for it to take a while before one is diagnosed with IC. Basically, they look for all other possibilities first, often coming to the diagnosis more by having excluded everything else. Some will then diagnose based on symptoms, some use hydrodistension, and some will use the potassium sensitivity test. You can read a bit more about this here: http://www.ic-network.com/whatisinte...tis/#diagnosis

Confusion is very common at the point you are at right now, and coming down with pneumonia surely didn't help matters! I'm glad to hear the pneumonia is clearing up, -you don't need that extra battle to fight too!

Vicki

[Crimson&Clover]

Hi Vicki,

Thanks for your answer to my question and for your posts...you've all been so helpful.

I am reading Dr. Molden's IC book now, and it is a real eye opener.

Warm regards,,
C&C

[DenySue]

Crimson & Clover,
I am so sorry you have been treated so badly, and I pray that you will find a new, compassionate doctor soon! Please understand that if you really do not want to go back to this urologist, the records of all the tests that she has done belong to you. All you have to do is sign a release and those records can be released to your primary care or any other doctor you so choose. So do not let that stand in your way. I recently changed urologists for similar reasons. Life is too short and this disease is too mean to waste time with doctors that have no compassion and no time to explain and listen.
You will have much support and care here and I am sure you are going to be getting the help you need very soon!

[c2miracle]

Crimson & Clover, what a nightmare! It is a real shame that there are doctors out there who show no compassion and are just full of themselves. Can there head get any bigger??? I once had a doctor tell me I was crazy and it was all in my head and I should go see a psychologist. I cried all the way home. There are some real "gems" out there and I hope you find one very soon. I feel your pain and I'm sending lots of hugs and positive thoughts your way!

[Dakota]

I've read your story and my heart is just breaking for you. You've come to the right place, and I'm sure you will find so much interesting and helpful advice. I can't stand it that some doctors can be so arrogant and cruel. I'm sure with time you will find the right one and don't give up until you do. I just wanted to welcome you and hope you're feeling better soon.