09-24-2006, 10:30 PM #1
- Join Date
- Jan 2006
I feel like I am in back labor and I am not pregnant!! HELP!!!!
OMG!!!!!!!!!!!!! I am hurting SOOOOOOOOOO bad!!! *tears* I honestly feel like I am in back labor and I am not pregnant! It feels just like that though!
I was hurting earlier today, but at that point it was only my bladder. At that point, my pain was "only" about a 7. I took my Lortabs, put on a Lidocaine patch, tried the heating pad, warm bath, and Ibuprofen (I have no problem w/ NSAIDS). NOTHING worked or even helped!
Usually, when I get that way, the only thing that helps is having a rescue instill. My Dr. will not let me do them at home, even though I can self-cath, b/c I am so prone to infections and I have Lupus. So, he has standing orders for me at PRivate Referral at the hosptial's ER, so I can go there whenever I need them. So, I went ahead and went in and had it done. That was at 7pm.
Usually, I am better before I get up off the table. But, this time I was worse, and it has gotten worse since I got home. I dont know the exact stuff they usually put in, but, I do know what they were suppossed to put in tonite: 20cc 2% Lidocaine, 2cc of 8.4% Sodium Bicarb, 1cc Heparin 10,000 units. That is what the nurse had written down when she called to renew my orders. (My orders are good for 1yr at a time, so she had to call to renew them, as they had ran out.)
There are a couple of strange things though. First, I smell of garlic like I did when I used to have the DMSOs... I have never noticed this w/ the Rescue Instills before. Maybe I have always smelled like this w/ the rescues, but I have never noticed it. So, that is weird. I researched "the odor" on here, and everyone says you only stink with the DMSO treatments. So I dont know what is up!! Have any of you ever stunk like garlic with a rescue instill? Is there anything in the ingrediants I listed that what make me have "the smell"?
One other thing, (And this one is partially my fault), is that the RN who did my instill did NOT use ANY sterile procedures! She did not gown me, (she said they were out of them...which I think was a lie, since I had on a skirt), she did not even have a sheet on the bed...it was the bare mattress, she did not clean me down there with betadine or anything else, she literally had me raise my skirt and she reluctantly lubed the cath with Lidocaine I brought from home, then she stuck the cath in without cleaning me first or even having a sterile pad under me or any sheet on the bed! The only sterile thing she did was wear gloves. But, I was hurting so bad and was afraid to say anything for fear she would JAB that catheter into me out of retailiation for me "telling her how to do her job". So, I said nothing and acted like I didnt know any differant.
Now, I dont know if I am hurting b/c she gave me a DMSO instead of a Rescue, or if she caused me to have an infection, or if this is just the mother of all flares. I mean my Pain is at a 9 right now. The only reason I dont say 10 is b/c I am somehow still able to type, and also because I reserve a 10 for the pain associated with getting your legs amputated with no anesthesia!!
It is 4:19 right now, I have a pain clinic appt this morning at 8:45, that is 2 1/2 hours away. (It was already made a few weeks ago, it is my routine appt) Anyway, obviously I have had NO sleep b/c of the pain, and I have no driver, so I am going to have to try to drive myself somehow.... dont know how on earth I am going to make it, I just know I have to somehow. I am going to have to leave here in an hour and a half. At this point, I am not even going to try anymore to sleep, b/c even if I could, (which is impossible b/c of the pain), I would be worse off with an hours sleep than no sleep at all!!
Please advise if anyone has any idea if 1) only DMSO can cause the garlic smell or if Rescue instills CAN cause it. 2) If an infection could possibly take root in 8 hours and already be causing this much back and bladder pain?
Please pray for me if you are the praying kind. I am hurting sooooo bad!
Thank you to whoever actually read all this and responds. Hugs, Amy
P.S. Please dont preach about driving down there in pain and w/ no sleep. I have nobody else to drive me, and yes, I have already tried to find someone, and I cant stay home or I will be out of the Morphine, so I will be in withdrawl to add to my other problems! As far as lack of sleep, I will be ok there since I slept late this morning and took a nap this afternoon.
09-24-2006, 11:04 PM #2
- Join Date
- Sep 2005
I feel so sorry for you, I hope you get some help...
I never heard of a garlic smell ever before except with DMSO - and we have all types of instillations over here...
Unfortunately I don't know about the speed of an infection.....
I hope you get some relief.......I'm german, diagnosed september 2005 with mild IC. Current meds: Elmiron, Uropol-S, IC diet.
09-24-2006, 11:20 PM #3
- Join Date
- Jan 2006
Thank you for your swift reply! I appreciate your kind words and the info. Hugs, Amy
09-25-2006, 02:24 AM #4
Yes, it's possible to have an infection develop in 8 hours. And I don't know of any other instillation that will cause the garlic smell --- can you taste it too? It does sound like you may have had DMSO instilled.
And if there's an ER nurse who will do an instillation without using clean procedures, she should be reported to the Administrator of the medical facility.
I'm sure you are already on your way to your appointment. I hope your day isn't too awful. Can they check you for infection?
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09-25-2006, 03:30 AM #5
I'm so sorry you're feeling so bad!
Hi Amy, I'm sorry you're feeling so bad. I know EXACTLY what you mean about the back labor.....my pain feels like that OFTEN. I even recently told my 20 year old daughter that it feel JUST like the back labor pains I had while giving birth to her. It is so intense!!!!
The ONLY thing that helps me is lying down on heat (on high) with a pillow under my knees and deep, deep relaxation thoughts. I wish I had something more helpful to offer you, and I'm sure you've done that heat/lying down thing already....
You're in my prayers as you always are girl, prayers for some relief and a safe, productive trip to your pain doc's! I hope you get some relief soon!
Love, ChrisThank You all so much to everyone here for all your sharing, caring and support!
< My "Bear"
Started herbal teas 6/2/06 Marshmallow root, comfrey root, and catnip. 6/25/06 added Mullein Leaf Powder to tea.
Hydroxyzine 50 or 100mg at night (Is restarted)
Zoloft 100mg 4/8/07 (Is restarted)
Klonopin 1/2 mg 4 X Day (started 3/17/07)
Past Treatments: Amitriptyline, Neurontin, Hytrin, Heparin instills (was Dc'd after 5 weekly tx's due to severe urethritis), Superior hypogastric plexus block, E-stim, Elmiron instills (started 4/18/06-Dc'd 5/30/06 due to severe urethritis/infection requiring foley cath @ home 4 days), Oxycontin (oxycodone) (4/18/06)-pain (Dc'd 5/31/06), Levsin S/L (hyoscyamine) (3/17/06)-antispasmotic (Dc'd 5/31/06), Elmiron (1/24/06)-(Dc'd 6/25/06), Prelief, Zanaflex 4mg for PFD (Dc'd 10/1/06), CystaQ 1 in am & 1 in pm with food(started 5/12/06-increased to 2 in am & 1 in pm 9/20/06---Dc'd 10/18/06), Lyrica (started 10/26/06 up to 600 mg-Dc'd 12/4/06 due to urinary retention), Vicodin (hydrocodone) ES PRN for pain (Dc'd 1/4/07); Cymbalta 30mg (start 1/17/07) up to 60mg in am (1/26/07) (D/c'd 3/17/07); Ativan 1mg(Lorazepam)- PRN Anxiety (changed to Klonopin 1/2mg 4Xday 3/17/07); Pyridium (phenazopyridine) PRN-bladder analgesic; MSM (6/12/06) 1000mg after breakfast & dinner (Dc'd 3/15/07); Acidophilus (Natrol) 100mg. 1 capsule 1/2 hour before breakfast (5/20/06) (Dc'd 3/17/07)
Added BACK in - Atarax (hydroxyzine) (started 4/6/06 Dc'd 5/31/06) Restart 50mg at night 8/18/06, up to 100mg at night 1/4/07. Zoloft 100mg-Depression (Dc'd 7/25/06) Restart 4/8/07) 100mg.
Dx'd: Dec 05 (Positive PST in November and positive cystoscopy in Dec) Symptoms: Pain, frequency, urgency & retention
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09-25-2006, 05:39 AM #6
Hi Amy, I hope you are feeling better. My family always say I smell like 'corn' after my DMSO -- I can't ever smell it though -- one time I asked the nurse to let me smell it before instilling it so I can know what I smell like for about 12 - 20 hours post DMSO Treatment. ucky!
Anyhow, I just want to say I hope you are feeling better and that if it is back pain from the IC, I agree, it is important to talk to your doctor and do those things, but consider doing some deep breathing and relaxation techniques as well as take a long warm bath and wrap up in the bed for the relaxation and breathing and maybe some CDs that are really relaxing for you... The heating pad, (warm wet towels underneath a dry towel, with a heating pad on top adds a new deep warmth!) is a great way to help relax the muscles too. I think that when my IC is flaring, I too get a lot of back pain -- like back labor -- but it is often my muscles all tensed up.
Any chance of getting a 1/2 hour of gentle massage? That may be another good way to help relax the muscles.
I would also be reporting a nurse who didn't bother to wash me off before doing a cath!!! And no sheet -- what's that all about!!??? Time to make a phone call -- well, maybe not RIGHT AWAY -- perhaps you can talk to your doctor's office and perhaps they can make that call so you don't have to add to your stresss..... or call and ask that the hospital administrator contact you next week because you are in pain and can't deal with it right now...
09-25-2006, 05:51 AM #7
Amy I am soooooo sorry!
I wished I was with you right now to help take care of you!
I will try to call you tonight to see how you are doing. Lay down and take it easy when you get home. Heating pad and hot tea for you. Get in your bed and watch Law & Order episones on TNT all day.
Talk to you soon!
IC symptoms began in 1975; diagnosed in March 2006.
Other conditions: PFD, Migraine, VV, Total Abd Hysterectormy on 12/27,06 for Cervical Cancer, Fibromyalgia.
Current Daily Meds: Roxicet, Methadone, Flexoril, Flomax
I use Prayer, Yoga, Relaxation Breathing and TENS to help relieve stress, anxiety and pain- LOTS of make up to hide my true identity!
09-25-2006, 11:59 AM #8
- Join Date
- Mar 2004
- Viera, Florida
Oh my poor girl--I wish I was closer so I can help. You are in my prayers always but I am knocking on God's door a little extra for ya.
Hugs and prayers,
Barb(Babs passed away in April 2009. We honor her memory and remember her fondly. - Jill O. ICN President & Founder)
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09-25-2006, 12:16 PM #9
If you want to talk again, I did not leave my mom's, I decided to stay again.
HUGS! I am here for you!
Last edited by Kara29; 09-25-2006 at 12:51 PM.
09-25-2006, 02:24 PM #10
This is terrible, Amy! I'm sorry you've had to go thru this. I hope you made it to pain clinic and back safely and are feeling better! Call if you want to talk or please post so we'll know you're ok.
09-26-2006, 03:35 AM #11
- Join Date
- Jan 2006
Thank you all for your kind words of support, pms, phone calls, and prayers! I dont think I could have gotten through the last 2 days without them.
The pain clinic would NOT switch out my pain meds or add anything else for a few days to help me. The Dr. would not even come in the room! I had to talk to a nurse I have never seen before and go thru all that "what is IC?" b-s! She agreed it was probobly a kidney infection based on my symptoms, but said they wouldnt do a urine test to see b/c "they arent those kind of drs" I said, "Well, you have a lab to check for drug compliance, cant they do a dipstick test to check for infection?" NOPE!!! I was so upset! I asked if my reg Dr found that it is in fact a kidney infection if they would they write me a couple of days worth of something like B and O suppositiories or something to help. NOPE! No matter what it turned out to be, (even if it was kidney stones,) she said they would not give me anything different or extra!
When she left the room, I called my dear Dr. in Bowling Green and told his nurse what was up and she told me to come straight there when I left the pain clinic, if I could make it home (It was a 2 1/2 hr drive back home.)
I was so upset, when I left! But, I called Kara29 from the car and she got me calmed down enough to drive and stayed on with me all the way back to Bowling Green. I hated calling her,when I was so upset and hurting, knowing how bad she is hurting herself, but hers was the only one of you guys number I knew, and no one else but an IC patient would posssibly understand. But, she was definately the right person to talk to. After all, it definately helps put my own pain in perspective when I realize what she endures daily. I just hated to burden her, but she was so kind and understanding. She is definately my hero!
Anyway, I got back to town and dropped off urine at my Dr and sure enough, it was a RAGING infection. But, my Dr didnt want to put me on antibiotics yet b/c I have been on so many the last few weeks from the dentist because of an abcess. So, he said he wants to culture it to find the right antibiotic, which of course I totally agree with. He gave me a shot of Torodol for the pain, and said if it didnt help to call him back. I didnt call him back b/c that along with the extra pain pill I took and the muscle relaxor finally eased the pain some. But, HE called me back! (I told you he is an ) He said for me to come in the next day (today) at 11, and he would do another instill, but this time, HE would do it himself, and he is going to use Marcaine and a steroid this time. He also wants to do blood work today to make sure my Lupus isnt going haywire.
I am better this morning. I am still hurting, but nothing like I was yesterday. I have be there in an hour and a half.
Thank God for my Dr in Bowling Green! I just pray every day that nothing ever happens to him. I mean, he is one of the few (very few) compassionate Drs out there.
I also thank God for all of you. No matter how bad things get, at least I am no longer alone. Even though some of you didnt post until after I left, it helped just knowing that when I came home there would be people here who understood and cared. Sometimes, when I get beaten down like that and see such callousness like that of my pain dr, I almost get to thinking the the whole world is just callous like that, and then, I come on here, and see that there ARE people who care, and well, it makes me cry *tears*, just the relief that there are kind people still in the world. Thank you all from the bottom of my heart. Love, Amy
09-26-2006, 04:27 AM #12
omg I canotbelieve that a hospital would do any of that... You should report this, she was out of line to put you on a matt with no sheet, not gown you, and not claen you before a cath, then screw up and gve you a dmso.... oh boy thats just really outragous..
hope you are feeling better.'The will of God will never take you where the Grace of God will not protect you.'
09-26-2006, 05:43 PM #13
So sorry for what you went thru but glad to hear you're feeling a little better. God bless compassionate doctors, I agree. Hope you continue to get better.
09-27-2006, 04:41 AM #14
I'm so happy that you doctor is being so helpful to you (your OBGYN) I only wish the pain management specialist had been so compassionate. I pray that you are up to your old self soon and feeling well!
Love and HUGS!
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