Anyone heard of this?

[kimaurk]

I went to a specialists appointment last Friday after waiting 6 months for it. My doc does deal with IC and is very good, but because after a year we haven't been able to get pain control she sent me to this other doc. This other doc manages a pain clinic and deals only with IC and pelvic floor things. After assessing me she said that I had a very unstable hip (SI joint). I have known that for a while I even tried an SI belt without success because it sits right over my bladder and makes it even more painful. She didn't even really deal with the IC as she only deals with things in a sytematic way. If a SI joint is a problem she always starts there. Her rationale is that she doesn't know if the SI joint is causing the SI instability and there fore causing more pain, or if the pelvic floor dysfunction is putting the hip out. In some ways it makes sense. But she won't deal with anything else till the SI joint is stable. I have walked with a slight limp for many years and can't remember when it even started. Anyway, I have to try the SI belt again and if it doesn't work then she says I need to go for prolotherapy for that joint. It entails glucose injections into the tendon and ligaments of that hip right next to the bone every two weeks for 6 teatments. This causes the body to recognize a need for repair due to the inflammation it causes. Thus the body then replaces or repairs the damaged tendons or ligaments thus stabilizing the hip. She says it is very painful, but effective. Has anyone had this done before, not necessarily in the hip. You can have it done anywhere. She also wants to put me on oxycontin for pain twice a day. Anyone have any experience in that department. The only thing I take is percocet which doesn' really manage the pain. Does it knock you out??? Make you lethargic?? She discontinued the neurontin because I get facial, hand and feet swelling on the lower dosage so she can't increase it.
Anyway, once the hip is stabilized then she can move forward with treatment and discuss it then. To say the least I am frustrated and feeling pretty teary all the time. After a year of treatment I had hoped to have some progress!
Please let me know if anyone has heard of this prolotherapy and infor on oxycontin. You would think after being and RN for over 17 years I'd know more than I do. But I only worked in labour and delivery and we only give morphine and demerol unless they opt for an epidural. Hey I had not even heard of IC till I was diagnosed with it.\
Kim

[lisalau]

oh darlin'
ditto ditto ditto
I too worked midi and mothercraft and so NEVER admit my training to docs because they assume knowledge i just dont have!
re the oxycontin, i find it is the MOST effective of all pain regimes i have tried. i require much more morphine to get similar relief (and not just the equalanalgesic dose, wayyy higher)
my pain doc says that is because oxy has a stronger effect on neuropathi type pain than morphine and therefore methodone would work just as effectively but i have not tried that yet so i have no opinion.
Initially i was itchy and nauseous but over the course of a month or 2, those side effects subsided and i had the best pain relief i had experienced over 2 years. I used maxalon suppositories to stop the nausea (i couldnt keep the tablets down) and bathed in pinetarsol to reduce the pruritic symptoms.
Sorry i have no idea about the other stuff.
I hope this helps with the oxy, i hope you get as much relief from it as i do
ps may i ask what dose she has started you on?

[kimaurk]

I haven't started on the oxy yet, but the dose she recommended is 20mg twice a day. I won't get the prescription till I see my doc and she get the consult letter confirming this.
Kim

[Sarojini]

I have no idea about the SI joint issues; I've never heard about these injections, so I can't help there.

We're all really different with pain meds. I tried OxyContin for about two weeks, found it only worked for about 2 hours and then left me in pain again, and called my pain clinic to ask to go back to methadone, which is the long-acting drug that works best for my pain (although I have not tried the fentanyl patch).

I hope you have better luck than I did!

[rosesitty]

Kim, I've had glucose injections before when I injured my hip and it did work. However -- as she said, it was painful and in my case expensive. After my bout of PT for PFD, it really inflamed my back and hip. I went back to my eastern/western doc, he did injections, but it hasn't made anything "normal" yet. but better. He thinks the PT is working against the injections...so since the urogyno things the PT isn't working anyway, I've stopped it. I haven't heard it called prolotherapy tho.
Regarding the Oxy Contin, that's pretty heavy duty pain meds. I have oxycodone on hand just in case, but don't use it every day. It's too much of a medicine head thing for me, and highly addictive. On a regular basis I take Valium twice a day and Soma at night. Was working until I got a horrible case of the flu and now everything is flared up.
Hope you find what works for you.
Stephanie

[kimaurk]

Stephanie,
thanks for the info. Out of curiosity how much did they charge you for the injections. Mine are going to be out of pocket as my health plan doesn't cover then at all. I was told I would need 6 of them, one every two weeks. My physio said they are quite effective, but we are trying the SI belt first. I have now worn it for a week and it sits right over my bladder!!! VERY UNCOMFORATABLE!!! I don't know if I can keep it on. I am supposed to wear it 24/7. So far I haven't been able to wear it at night, otherwise I'd be getting up every 10 minutes. Because of the pressure on the bladder I rush to the bathroom very frequently, and sometimes I get there and can't even go!!!! It sooo increases the urgency!! I have started on the oxycontin and it isn't bad at all. I don't even know I'm on it. It sure makes a difference in my pain level. For the first time in almost 2 years I have had pain relief where it sits at a 1 or 2. If I wear my belt too long I end up having to take something for breakthrough pain, but that is maybe once or twice a day. I don't think I would need it if I didn't wear the belt!!
Kim

[rosesitty]

My shots are about $100 each. They are very painful upon initial injection and a few hours afterward (make sure you put ice on the injection site), but have helped in the past. I'm trying to get in to see my acupuncturist/orthopedist who does the shots, but I've had the flu and I'm trying to get rid of that first! I don't just have a Headache in the Pelvis, I have a migraine! LOL

[kimaurk]

Thanks for the info Stephanie. I pray that you get over the flu quickly. My son was hospitalized back in October with a bad case of the flu. He was the one who had cancer when he was 14months old. We were terrified when he got sick, but soooo thankful that it was only the flu and not cancer again!!!!! With these injections, how many did you have, how often did you get them? How long before you started to see results? sorry to be such a bother. I have been seeing a chiropractor for at least 20 years and my right SI joint was always a problem. If that hasn't worked, wonder if that SI belt I have to wear 24/7 will work. It will take about 7 weeks to find out if it will. In the meantime I wear it and my bladder suffers!!
Kim

[rosesitty]

I originally started the shots when I injured my hip. I've had about six shots pertaining to the flare up from the PFD PT, and things are better, but not great. I usually get them once a week. He kinda mixes it up with shots and acupuncture. Let me know if you have any other questions.
Stephanie

[Berkshire Road]

I had prolotherapy for the S-I joint, and it really helped a lot. Mine were covered by insurance, so I don't know what the cost was. I had mine done under sedation in a surgi-center, so it didn't hurt at all. You could ask your doctor about that, but I guess it would be more expensive. It did hurt afterwards but usually only for a couple of days.

I was so pleased with them that when my daughter injured her hip, I brought her to the same doctor for the same therapy. She is a competitive swimmer and the hip was so bad that she couldn't kick at all. Now she's completely fine. Of course, she doesn't have IC clouding the issues. But anyway, I'm a believer in prolotherapy.

Getting one pain locus under control can sometimes help calm the whole pelvic pain cycle, so maybe this is a good thing.