Failure to diagnose.........

[binky11]

What does a person do when they are suffering severely and can't get a diagnosis?
For two years now I have had bad pressure pain, that feels like a brick is sitting on my tailbone. I can sit a little bit in the daytime, but can't lay down and sitting becomes very painful as the day goes on. I can only lay down for ten minutes intervals, the pain gets so severe I am vomiting every night from the serverity of it. So of course I am very sleep deprived and exhausted from having to be on my feet almost 24/7 as this is the only time I get relief. The problem has escalated in the past couple of months.
I have had cat scans, ultra sounds, X rays, an epidural procedure at the hospital, have been to chiropractor, had a colonoscopy, seen a gynocologist, a GI specialist and been to the pain clinic. I have had IMS treatments and been to a physio therapist who specializes in pelvic floor issues. Nobody can diagnose me.
My GP wrote up a requisition for me to take to ER, recommending that they admit me and see me at night when I am in my worse pain phase. I did that on Monday. I won't go Into details about my two night stay there, I couldn't, without it turning into a rant.
It was an experience I will not soon forget though. On day two I had a real good female doctor come and see me. She gave me hope. Saying she would do her best to get to the bottom of this, ( pun intended) She told me to ring the nurses when it got bad, and it would be all set up for a specialist to come and see me then. I did that, but the specialist wouldn't come? After waiting 13 hours, they admitted me to an ER room. The next day the admitting doctor came in to say good news, nothing showed up on your cat scan or ultra sound, you can go home. At this point, I might have welcomed the C word, because if it is acceptable to send someone home and tell them they can never lay down again or sit at night, well I don't want to be here then.
If they can't diagnosis me, what am I to do? You know if it was their daughter or wife, they would get a diagnosis! Especially after two years of hell. I am at my wits end, with nowhere to turn now. The ER was my last hope.
I know nobody out there will have the answers, maybe I just needed to rant, and wonder if there are any others out there in the same situation.

[SuperMom]

I am so sorry to hear about your pain and struggles in getting a diagnosis! I can only relate to what you are going through in small ways. I have been unable to sit without pain since herniating a disc last November, and I've also got some pain when standing or lying down. So I know a little of what you are going through. Unfortunately, I have no wisdom for you, but I hope you find some relief.

[vegas1500]

Not sure if it’s in your means or if you have access to it but if you do, seek a private clinic and pay for it. They will have your best interest at heart. There’s a couple of really good ones in Edmonton.

[binky11]

I was not aware of these private clinics. Unfortunately, no, it would not be in my means. I am living on disibility, difficult to come up with the $100.00 a pop for physio. However, I am going to check into these private clinics. That's probably exactly what I need. Thank you for that info.

[Fancy]

We started looking into private clinics but ended up getting a diagnosis prior to shelling out the money. Sucks that someone has to suffer so much for so long. Hope you have some good luck.

[WeatherWoman]

Maybe ask for a referral to a Rheumotogolist. Could be arthritis?

[ferri]

bLinky (heh sorry...) Is the pain at the base of your spine and right above your butt crack (sorry, I don't know the medical term for that area.)?

[binky11]

Hey stranger! How are you? The best way I can explain it is, it feels like a brick,more a MAC truck, sitting on my tailbone. The tailbone is at the bottom of the spine, so is it a spine issue? I can't seem to even find that out. I am at my wits end I know that.
I have anxiety during the day now, knowing what is to come tonight.
Will probably end up at the Rutland physio now, I was told to go that team, but at $140.00 a pop, it's not happening yet. But I have do do something in the next few days. I can sit with only discomfort and not too much pain during the day. But by 7:00 pm I can't lay down or sit. How can so many professionals tell you to accept this way of life?

[ferri]

Your problem sounds like a pilonidal cyst, but obviously if that's what it was they could SEE it. I'm just wondering if it's possible for it to not erupt and go in, instead of out.

https://www.medicinenet.com/pilonidal_c ... nidal_cyst

I've had one of those ^^^ and what you describe is exactly what I went through.

[binky11]

I was born with a pilonidal cyst. It didn't bother me until it became infected when I was 17 years old, and at that point they lanced it. No problems since. The pain just recently seems to be spreading up into that area, but mostly the tailbone.
But yes you can see a pilonodiL cyst, and this has been two years, but getting progressly worse each week.

[ferri]

Well there goes my chances of being a Dr. I thought I was onto something. :/ I hope someone comes up a solution. x

[binky11]

$5,000 to anyone that can diagnosis me LOL. Should have offered that to the doctors.
And weather woman, the results of my cat scan says Severe degenerative facet disease is seen right L5-S1. But they say that is not what is causing my pain. The symptoms of that is lower back pain and I do not have that. Someone is missing the mark along the way here. I also have cystocele and rectocele but they say that's not the cause either. I just feel another night like this, or another week is going to push me over the edge. They all know I am having to stand ALL night and know that I am vomiting ALL night from the severity of the pain, yet they all say, sorry, we don't know what's wrong, live with it! I am having a hard time accepting this.

[WeatherWoman]

I am sorry Binky. I am the queen of atypical symptoms. It could be joint related. I hope you get an answer soon.

[Silverstarqueen]

Are the docs at least prescribing pain medication for you?

[binky11]

Am on my same meds I have been for years for fibromyalgia and arthritis etc. I've had to take my main day time dose and save it for night time now. It's helps just enough to sometimes stop the vommiting, from the pain. But still can't really lay down. I try in ten minute intervals, laying down that is. Docs are somewhat limited on prescribing pain meds these days.