Thread: anxiety about all this testing
12-21-2007, 05:50 PM #1
- Join Date
- Dec 2007
anxiety about all this testing
I know I need all these tests. It takes me a month between appointments to get these tests done, which is a good span between bladder torturing. However, the constant agony that I am in, not to mention the fact that my incontinence is giving me too much anxiety to leave my house. Did I mention that I am bladder shy and I have trouble going in public anyway?
I still need to have the potassium sensitivity January 18 (because the person that does this test will be on vacation until then) and a cystoscopy (Feb 14th because that is the next available date my doc has because he is only in that office for that procedure on Wednesdays).
Any type of catheter going anywhere near me gives me great fear... because I know what is coming... the agonizing burning, stabbing bladder pain... honestly... I'd rather give birth.They do these procedures right in the office and I am sorry to sound like a whiny baby but I NEED some kind of sedation. I am having terrible anxiety lately over having these tests done... cuz lets face it, other IC people are confirming my suspicions that it is downright painful. Do I have some kind of choice here? Can I demand some minimal sedation?
I am going crazy waiting so long. I have already had 2 years full of UTI's and antibiotics and they are still wondering whether or not I have IC. I am still waiting for them to figure it out. Meanwhile, I need to feel more at ease and be a little more brave. I am scared to death... I am doing the IC diet... which it NOT helping me and I don't understand why when it works for everyone else.
I guess I wouldn't be complaining so much if I wasn't in such pain. I just had surgery to remove cancer from my cervix so I am a bit tender and sensitive right now.
Also, is anyone trying any homeopathic remedies to help ease up on the pain, besides the IC diet?
I am not getting much support at home about this so I'd appreciate a helping hand from anyone. Also, any counseling and support groups in Michigan?
12-21-2007, 06:37 PM #2
- Join Date
- Jul 2007
I must tell you I remember being where you are right now just a few months ago. I am now doing pretty good 75% of the time. First, let me ask are you having a normal cysto or a hydro cysto? The first one is done in the office with no sadation. If it is a normal cysto it is probally being done so that they can make sure there are not any other reasons why you would be having this pain. Second, the IC diet is a great help to me, but I had to be so strict with it for weeks to get any relief. You might want to try the elimination diet. With the elemination diet you get down to a very bland safe few foods. Then you add back very slowly one food at a time. Each food being added back slowly and only one every three days. While doing this you will want to keep a diary of your pain and foods. This is not fun but can be helpful. This is how I had to do it. You might also ask your doctor to put you on some elavil and an allergy med like visterel (sp) in the mean time. I would call and ask the uro for these meds or ask my FP. These could also help treat the pain. Good Luck.Daily Meds:
Ditropan XL 5 BID, Elavil 50 QD, Elmiron 200 BID, Hydroxine 50 BID. As Needed: Bacofen 20, Prosed DS, Hydrocodone/Apap.
Adderal 10 QD, Remmeron 37 QD (I take 1 1/2 of 25 mg)
With the help of my doctor moving my meds around a bit by increasing this and decreasing that I have found a good combination of meds (for now and I pray a long time from now).
12-28-2007, 01:18 AM #3
- Join Date
- Sep 2007
I'm sorry you're having so much trouble. Have you considered having a hydro/cysto under anesthesia? I understand your anxieties! Best of luck to you finding some relief.
12-28-2007, 03:54 AM #4
I can understand your fear but honestly the PST really is not bad at all. They do use a cath but it is very very very small and I'm sure if you ask they can put some lidocaine on it or in your urethra to help with that pain. The PST is uncomfortable but as soon as you confirm it hurts they drain out that solution and put in a soothing solution.
As for the in office cysto, I had that done as well. I had a wonderful dr who did use a uro jet (applicator for lidocaine that actually gets it up into your urethra) before hand and the nurse was great. The best advice I can give you is to breathe out while they are putting the scope in because then you can not tighten up your muscles which would make it hurt more. I was uncomfortable afterwards but again, not even as bad as some of my flares. I would talk to your dr if this upsets you so much to see if you can get some valium or something prior to calm you down. It is common practice to have an in office cysto done with no sedation and alot of us have done just fine. I hope that everything works out for you.Christine
I have been diagnoised for 2 1/2 years. I have tried every oral med as well as rescue instills and DMSO.
1st hydro 4/07 which showed no visible signs of IC but I had tons of mast cells in all my biopsy samples which did prove IC.
2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. I am still feeling the effects of the hydro two weeks later.
This 2nd hydro proved that because no treatments have helped me that my IC has progressed
Am being seen by Dr. Hanno's office in Philly
None of my medicine or treatments are important anymore. One of our best IC sisters Barb has been taken from us too early. She was such a great friend to me, I feel like there is a part of my heart that will always be empty now that she is gone.
Proud wifey of Shane, mommy of Griffin, and step-mom to Logan, Gage and Miranda
Also proud new mommy to the best Bullmastiff puppy on earth
12-28-2007, 05:12 AM #5
Christine is right, the PST test is not that bad, especially if you have been dealing with UTIs for so long, the PST test is just a short moment in time. I didn't even know what was going on (almost 20 years ago), so I guess back then my doctor's office just kind of used it as a tool to see if IC was a possibility. They put in the catheter and told me that they were going to put in 2 different liquids. The first one I felt nothing, the 2nd one, I wanted to jump off the table, but the nurse immediately put in some solution and I was already feeling better. Yes, it was irritated for a little while, but after I took some pain meds, I was fine. It's strange that no one else can do the PST test, if they can put in a cath, they can do the PST test. My doctor's nurse did mine.
Regarding the in-office cysto. That was never even mentioned to me, my doctor just scheduled me for out patient surgery the end of the week after the PST test. It all happened very quickly.
12-28-2007, 08:46 AM #6
- Join Date
- Mar 2007
Lots of time they will give you a valium or something to calm your nerves. I know a lot of doctors do the PST but I would not do it again if I had done my research. I can send you an article if you would like. I know most people are saying it isn't bad but I was in so much pain for a week and that was with pain pills. The other test was bad for me too and then I had the hardest time going to the bathroom. I cannot imagine getting them done on the same day. I am not saying this to make you more anxious but to educate you b/c if I had known what I know now I would have skipped the PST and maybe just done the cysto. Usually what happens is then they want to do the hydro/cyst under general anesthesia so I would recommend that too and just get it over with while asleep...my pain was MUCH less from that one.
"Consider it pure joy, my brothers when you face trials of many kinds, because you know that the testing of your faith develops perserverance." James1:2
Diagnosed with IC 3/2007
Endometriosis w/ laproscopic surgery 2003 and 2007
Hydro, Cysto, urodynamics testing, and many instills
Current Medications: Elmiron (200mg morning and night), Vaginal Valium Suppository at night, IF 3 WAVE Stimulator, Cymbalta, and birth control
"Thank you to all for your support. I have been able to live a more normal life thanks to all the information found on this site and the angles I have encountered."
THESE ARE THE TWO LOVES OF MY LIFE!
12-28-2007, 09:12 AM #7
Runningemiles is right, do your research. My PST was done many years ago before there was this much info on IC. This site wasn't even around. I had the hydro/cysto and glad that I did, but the hydro didn't help me in the slightest except to let my doctor know that I didn't have cancer, but did have a very damaged bladder and looked like a bladder of an 80 year old! I was also thankful to have the actual diagnosis of IC. I realize that is up for debate too that a cysto is required, but even with the pain, it was worth it! I was 23 years old. It took me weeks to get over my hydro/cysto. Longer than it took to get over having my interstim surgery several years later. I was in bed, sick to my stomach from the anesthesia, etc. and couldn't pee for several days without actually taking a bath so that I could empty my bladder. We are all different with every single treatment. I have friends that the hydro worked great for them. I am not here to tell anyone not to investigate and try any treatments that their doctors suggest. I will normally do what my doctor suggests after some research that is.
A few years later after my 2nd hydro, I was told I had severe IC and was told that I needed to consider disability, instead, I took some time off from work to work on my meds and get my strength back. In my mind, I just didn't want to give up working and considered myself on leave. I was determined that I was going to work again. Now, I function pretty normally and work full-time (it did take some time to get on the right meds to allow me to function normally...it certainly wasn't a walk in the park) while other people have severe IC and can't work period. All of our bodies are just so different, I can definitely see what the doctors are so confused and debate so many aspects of this disease. It is so important to have a doctor you trust completely, takes care of all your symptoms, shows compassion and listens. I have a doctor like that. I trust him with everything and he actually listens to my suggestions on my own care which several things have actually worked! My doctor I have now did the PST test on me when I first started seeing him a couple of years ago. He didn't have my file yet from my prior doctor that moved, so he was trying to get my history, I didn't say anything which I should have, but when the nurse did a PST which was against my better judgment, but I wanted to make sure I would get the treatment I needed since I was out of my meds from my prior doctor and didn't want to hold anything up. I again flinched so badly, but the nurse put in the lidocaine and I immediately took a Lortab. I went back to work and used my heating bad and of course fussed at myself for allowing him to do it again mainly because I flare with any type of cathing. Luckily that time, I didn't flare.
12-28-2007, 11:51 AM #8
- Join Date
- Dec 2007
- Camas, WA
I too sympathize with your anxiety. I've spent the last year doing several tests as well. While my doc didn't do the PST, I did have a cycto/hydro done, and I'll tell you that while you can be a little sore for a few days afterwards, you'll actually feel really good for a while afterwards. It helps stretch out the muscles a bit, so you get some relief for awhile.
As for homeopathic remedies, I would try Aloe Vera supplements. My Uro said that they won't hurt your bladder at all, and a lot of people seem to have had some success with them here on the site. I'm trying to get some myself to try.Clark College Junior, wanting to go to UW for Fine Art Degree
Major: Fine Art
Taking a course in medical transcription, must work from home
IC diagnosed 07/07
PFD developed sometime during late 07
Uterine Cyst removed 12/09
Chronic Pelvic pain developed in 09
Chronic Back Pain developed in 09
Medications: Elmiron, Detrol LA, BC, Prosed DS, Celexa for anxiety, depression, and pain,
No longer taking: Atarax (No help),Amytriptalene (no effect, became suicidal), Ditropan (no effect), Probiotics (sick to stomach), Bactrim (hopefully cleared up my UTI!), avoiding Pyridium unless absolutely needed (sick to stomach), Prozac (helped anxiety, no pain relief), Pamelor (gained nearly 20 lbs in a short time, no anxiety relief), Valium, Vicodin, percocet (none of these meds even touch my pain >_<)
Current Therapies: acupuncture, heat, Vicodin if needed, lots of laying down, gaming as a distraction, Pain Management classes started 9/22, Wanting to try TENS therapy
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