can't cope with being told I'm making this all up

[paininthers]

Very vulnerable these days and am turning to this site for input.  I have, or thought I have, some complex health problems.  I was diagnosed with Endometriosis a few years ago after over a decade of suffering.  I also had endless urinary tract infections and severe bladder pain.  Things hit a crisis point where I was unable to urinate at all and had to be catheterized for a week.  Now I self catheterize most days and it has helped a lot in preventing such frequent infections.  Recently, I found out that one of my doctors thinks I am making my problems up, as I was complaining of additional symptoms including pain and weakness in my legs.  This devastated me, and I have completely lost confidence.  I have since stopped seeing all doctors and now am running out of pain medication and catheters.  Don't know what to do.  My pain is so severe I was taking morphine, and before I self catheterized my infections were so bad I was getting high fevers and kidney pain.  Should I see a psychiatrist or just ignore these invented problems?  As my presctiptions run out I am scared of the pain and going back to the state I was in before I was getting help.  My confidence is so low I have not left home for two weeks now and have stopped accepting work.  If I am insane maybe I am not safe working with the public.  Supposed to have a hospital appointment this week which wasn't cancelled, don't know whether to go or to tell them not to treat my symptoms any more as they are not real.  

[my_3_sons2007]

my aunt was diagnosed with IC about 7 years ago. She experienced many of the same symptoms as you have described!! Go to a urologist and see what they say!! because her DR. told her the same as you were getting that she was making it up she waited a long time before going back. She now has to do self catheters 5-6 times daily to do bladder treatments. Hope this helps!!

[wilkat]

Again, your story sounds so familiar.  My pain has mainly been in my sinuses, but it has been excruciating.  I had NEVER taken pain medication before this and I'm almost 60.   My pain has been so bad that I  have wanted to die also, but I keep hanging on. Thank goodness, the pain clinic I attend believes me, but I did have one ENT say I was becomeing a drug addict.   I have been diagnosed from everything from pansinusitis to nothing is wrong with my sinuses depending on what it looks like on the day of my ENT appointments.  This has been going on for over 5 years and sometimes I have had nonstop pain for a week at a time and then the mucus will break loose and I'll about drown in it for several days.  No one can figure out what is going on.  I've pretty much had to learn how to deal with it and treat it on my own too.

I ended up on this forum becasue in some way all of the sinus infections have affected my kidneys.  (I've posted my story on the forum (filaments in urine) so won't go into details, except to say that my GFR (kidney function) keeps going down, my potassium and creatanine have been elevated,  and my urine at times has been dark red-brown. I've had severe edema of the lower extremities with this also.   I have seen 3 nephrolgists and  2 hematologists with this.  I have mild iron deficiency and hemolytic anemia, but all they do is tell me to take iron.  I've gotten the idea from the nephrolgists that you have to be at the point of dialysis before they will treat you.  Well, I want to know how to keep from getting to that point.  Neither the ENTs nor nephrolgists believe there is an association between the sinusitis and the kidney problems, but I know that there is.  I've tried 4 diferent PCP over the past 2 years and bascially they tell me I am too complicated and they don't have time to try to figure out what is going on. I can tell that some of them just think I am exagerating.  

Anyway, my point in writing this is to tell you that I think you need to get copies of ALL of you records and use the ones that support the diagnoses that you have.  Find a doctor (probably a urologist)  who is outside of the "network" that you have been in and won't have the record from the doctor who diagnosed the Munchausens (that's horrible for someone to do, especially with only one visit).  If you can, maybe go to somewhere like Mayo Clinic or another major teaching hospital.  I think you are sincere and the psychological problems have been caused from the physical problems.  I know I taught school for over 30 years, had a type A personality and was very active.  Now, I too, am not able to leave the house very often.  The pain, and just not being taken seriously by doctors is enough to get you depressed.  So, please hang in there and seek help.  Don't give up!!

[dawn775]

Girl dont give up...you can do this!!!! i promise you. You just need to FIND A UROLOGIST!!!! Most OB wont even touch a patient who have your type of problem. Go to the next county and find another DR, or go to a different city or town and find another Dr. Start over. Daahhhh the Jack*** you have now is not doing there job. Dont let one "WORD" disturb you or distract you from getting your own health care. Just move on from that DR and see another. There are DR out there who care, and care enough for thier patient. Gosh my OB saw how much pain i was in one day my bladder colasped from retention i had over 1200cc in my bladder my kidneys were floating and i had back flush to my kidneys. YES IT IS VERY VERY PAINFUL!!! he put me in the hospital gave me the strongest pain med out there daulid (spelling) and also gave me a saddle block from my waist down so i could not feel the pain. So you see we know the pain is for real. You need to find different DRs. The more you stress about it the worse it will make it worse. Also there are home rem. you can do to reduce infection and the pain. For one Cham tea is great for bladder pain. Well i wish there was a miracle id send my wand your way. Stay strong Girl, its just a word start over with another DR

[Vanessa Lacuesta]

Hi,

I see that you have been through a lot and it seems disheartening that you have not been readily heard and attended to. However, do not let all these overcome you. You seemed to have lost all hope because one person failed to believe you.You are the one experiencing your bodily pains and only you knows what you basically feel.It is important to be very open minded about this. As I have mentioned earlier, endometriosis and the progression of your symptoms need further evaluation and close assessment.Try to communicate better with your physicians.It is but natural for physicians to form ready opinions and impressions since they need differentials to follow them through a case.If you have any doubts or questions, do ask them and make it known to them.

I believe psychological factors may play a role here. You seemed to have given up at one point and I know that you are aware that this should not be the case.

So get that consultation and open your mind to your physician's advice. You may not opt for surgery but always seek for an effective alternative.Think of the long term benefits each procedure may bring you.

So good luck and do keep us posted

[paininthers]

Thanks for responses.  Seems I'm getting more medical support and advice from this site than from the hospital.  Dr. Lacuesta I can answer questions.  My problems are very, and I believe unecessarily, complex.  I had deep endometriosis removed from sacro-iliac regions and ovary about two years ago.  The gyno was supposed to do a cystoscopy too and biopsy.   She apparently just had a brief look, noted that my bladder was inflamed, and left it at that.  I had severe bleeding and pain issues after the surgery and asked for follow up.  First I was told I had to wait six months.  I objected as my pain and bleeding were so severe that I had to attend A&E, who just said that it was best dealt with by my gyno.  I contacted her again.  This time she discharged me.  So I never had any follow up.  Later that year I was hospitalized with severe urinary retention, draining over a litre when I was catheterized.  I have never had an abdominal CT or another cystoscopy.  I was taught to self-cathertize.  But the infections and pain continued, and I found another gynaecologist.  I was offered another laparoscopy but given my first experience did not want it.  They sent me for urodynamics and it was found I had to strain excessively to urinate and could not empty my bladder.  I was referred to a neurologist who said it was a neurological fault.   I was also offered some neurological implant for my bladder, but again declined as I thought it too extreme and self-catheterizing was working.  I do not want surgery unless absolutely necessary.  Since then it seems doctors have lost interest.  So I continued managing things myself, with catheters and morphine and antibiotics.  But things were worsening, and I was also getting additional symptoms such as chest pain, abnormal ECG, and problems walking because of pain and weakness, plus continuing severe menstrual problems.  All along I was struggling to manage alone only going to doctors for prescriptions, and only agreeing to further tests if I thought it would help.  I always held out hope for a solution as I hate the side-effects of the medications I take and being ill.  I was a very fit and active person before and no doctor can see the enormous change in the last few years.  Just recently I saw a temporary gp, who I asked for my medications and explained my history to.  I was registered for just a few weeks and this was my first visit.  I was treated as a drug seeker and the gp phoned my hospital, declaring he was my permanent doctor, which he wasn't.  I do not currently have any permanent doctor.  I went to the hospital and looked at the record of the phonecall.  There was a question mark and the word Munchausens next to it.  It was at that point I lost it completely.  This doctor who knew nothing about me had spoken to a doctor who took the call in the hospital who also knew nothing.  From this conversation my whole history was now condemmed as a fantasy.  I wanted to end my life.  After years of suffering endometriosis without diagnosis, then shoddy treatment, and recent years of extreme pain and disabilty, this was more than I could handle.  There was such clear documentation of my problems, surgery, investigations, findings.  All wiped out by one phonecall and one word.  I cannot believe my own pain any more, infections, fevers, bleeding, anything.  I am just a liar and an attention seeker.  Since then I have cut down on catheterizing and drugs and  now I am going back to the state I was, with a bladder I cannot empty and pain so severe I cannot go out.  How can I go to the hospital and be taken seriously?  I don't even trust myself any more.  I cannot request investigations, treatment, even being believed.  Maybe after reading this you will agree with them.  Just turning to the internet in desperation.  Life really has not got worth living any more.  Real or not, I am in pain, I cannot urinate, and I have a fever right now.  I can't help it but it hurts and if I am insane then that is not making it hurt less.

[Vanessa Lacuesta]

Hi,

Do not let this entire situation overcome you. Giving up entirely on communicating with your health providers may not be beneficial in the long run. What you feel with regards to your health is important .Just continue to open lines of communication , seek help and support from your friends and loved ones as well.

Regarding your complaint,I have some questions:

What was the initial diagnosis of your condition?

Was the endometriosis causing the obstructive symptoms that require you to catheterize?


Endometriosis may cause referred pain to the back and even the extremities. It also requires close supervision by your gynecologist. When was the last time you had your consult done? Was an abdominal CT done? A cystoscopy?

If you need to see a psychiatrist for counselling and to help you ease your fears then do so. But at this point what you need is a follow up by your urogynecologist  to have your condition assessed. We do not want any complications from the infection .

You are doing well so do not give up.It may be frustrating but with the right attitude, patience and a positive outlook, things will turn out better than expected.

[dawn775]

I m so sorry you feel this way. let me tell you i have had the same problems as well. i could not urinate at all i was put in the hospital. Ok first off a hospital COAST ALOT MORE for such a invasive proceedure than going to a Urologist!!! I have what is called IC in my bladder...google it for your insight. It is the utmost painful pain you could ever imgaine as a constant pain. They describe it as being in birthing labor all day. Bladder spasims, urethra spasim( which make you not ble to pee) Bladder rention( you dont empty your bladder, as there are departments in your baldder). you will have chronic kidney area pain, cramping in lower tummy area, down into your thighs, between shoulders. This is called bladder pain from IC, and is unbearable at times if you have a flare up of IC the the whole urine tract system is affected. Can you imgaine havimg a spasim in your urethra..it feels as though FREDDY CRUGER IS COMING DOWN YOUR OUT YOUR URETHRA WITH HIS CLAWS EXTRACTED!!!! EVEN WHEN YOU DONT HAVE TO URINATED!!!!! Sometimes you can have scar tissue that can create a semi blockage, they should of done a scope already?? 1. to see if there is a bloackage 2. to see if you have IC. Honey the pain is real if its IC ask any woman!!!! its worse than a kidney stone. You should ask you Dr or Urologist for Elmiron, Pyridium plus, enblex, all those meds one keeps the kidney cleans and turn your Urine orange but also will help with spasim- Pyridium Plus...Elmiron is an antibiotic for IC, you can take it orally but to get best results it is now used for vaginal cath installtion as i do them at home every week so that i can urinate. Enblex stops the spasims in the bladder along the Pyridium plus. i had IC so bad that a normal size cath that they used was so painful they had to order me special one..and infant feeding tube so that i could urinate daily. even so i was only emptying ONE PART OF MY BLADDER, so i would cath and another 300-550 cc would come out as they pushed the cath higher up in to get the RETENTION. YES it was painful, the would put me under a drug induce twilight so i could handle the pain until the bladder instaltiuons started to work in three treatments....Google IC in the bladder....for your self being and it might answer your questions you have, or right here in this forum...Bladder IC...hope it help...Good Luck

[wilkat]

I feel your pain.  I have had some of your same experiences, not all of the same symptoms,  but experiences with doctors.  I used to think the medical profession was really interested in helping people.  It seems that now if something doesnt show up on a CT scan or other objective test, and they don't know what is wrong, some tend to blame it all on the patient rather than listen to symptoms or admit they don't know..  I don't think you need to see a psychiatrist because of problems that don't exist, but it might be good to see one to help you cope.  Pain is a subjective symptom, but high fever and infections are objective and should always be checked into.  Anyone who hasn't had excruciating pain can not understand.  I do.   Keep your appointment.  If you aren't satisfied, get another doctor.

[RKO68]

Don't give up!  You obviously have not found a good doctor yet!