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Pelvic Pain Support Network
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MarciaA

I am going through the trial now. I have both vaginal and rectal pain. I felt a difference positively only in the hospital after procedure. Was discouraged until they told me to disconnect the device and see how I feel. I definitely felt worse. This said the device was working. I have had pelvic pain for 13 years and have been through everything. Even though I didn't feel a big difference, they only used 1 lead, I am going through with the implant. I feel it's worth a shot! Still nervous though

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hi

really glad that you have found something to help you with the pelvic pain, maybe you can now get on with living a life thats full

andreax

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The implant will say everything! Almost last resort.🙏🙏

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Hi Andreax I haven't been on the sight for some time as I have been in so much pain how did your op go I hope you are feeling so much better although I haven't been on the sight I have been thinking of you I am still waiting for a appointment for the pain clinic and I am dreading it as when I went to see the Gyno doctor when she put the speculum

in the pain was excruciating and she had to get a smaller one and it was still the same and I started bleeding and she said I was very inflamed inside so not looking forward to it. Janebee

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sorry you are struggling at the moment, but you do need to work through the pain and worry to go to your next appointment, i have always had trouble with the speculum too, as i am very tiny inside so i know what you mean, but just do your deep breathing and it will pass.

i am ok, not seen any lessening of pain yet but still only 14 weeks so still hopeful

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Hi it's so nice to hear from you again I have just had one health problem after another had a a cataract op that went wrong had a lump on my breast went to the docs and she found one on each breast thankfully it is ok went for a ultrasound and I have got gallstones I am really fed up with all the anxiety that is causing hope everything turns out well for you I am sure you will keep us informed

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yes i will, i am also having pelvic floor therapy which is very promising at the moment but will take a while for me to feel any improvement

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Hi I am so happy for you and hope that's you over the worst it's just the long process waiting for it to work and not overdo things and try and take one day at a time and the physio will help to make things a bit easier. Xx

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the physio i have found is really knowledgeable about pn, but i am suffering today, she had my legs in places i never dreamed they would go and the deep massage to the trigger points on my inside thighs were so painful. she said my muscles were very stiff, and dont i know it

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I hope she continues to help you. You just have to find the right person for your specific needs. I am done with everything!! I'm hope the implant will give me some relief so I can get some of my life back

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Sorry to hear you are not to good today I suppose it all takes time and if you get some good days it must be working it's amazing some of the exercises the physio can get your body parts into I will be following your progress xx

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Hi just wanted to update my pelvic pain my daughter just phoned me she got a phone call from the pain clinic to say they have a cancellation for Thursday morning at 9pm need to get myself prepared for this as I am not good dealing with medical problems. Janebee

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you will be absolutely fine, and i will be thinking about you

andreax

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Thanks so much!!!

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Hi was at the pain clinic clinic and had to take all my medication with me and a list of anything I have tried myself and he said that all the medication I have tried that's what he would give me and I mentioned the nerve block injections and was they don't work for everybody and they only last 4 months if your lucky so he is sending me for Physo he doesn't know how long I will wait I also said to him about the surgery and Started to explain about it it's a long story hope everybody is ok Janebee

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Very encouraging. Please continue letting us know how you are doing. Rocky68

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The implant will say everything! Almost last resort after 13 years. Won't give up though

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Lexi I know you must be anxious about implant and I am really hoping it works.

My Pain Dr has agreed I'm a candidate for the stimulator. Unfirtunately I have to be evaluated to make certain I know how to take care of myself once implant is completed. This is an insurance requirement. The evaluation is scheduled for October 5

The trial will last for one week to see if there are any benefits. They are using two leads I am very nervous but it's the only option available at this time

Please let me know how you do Rocky68

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I will definitely let you know what happens. They only used 2 leads for my trial also. I dealt with a lot going through this. It all started June 2nd. Had to begin with seeing a psychologist. Thanks for your thoughts will be in touch. Good luck to you!

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Yes I am nervous!!

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Met wit Pain Dr today. He is using Proclaim Dorsal Root Stimulator. Two leads at S1 and two leads at S3. Waiting for trial date.

How are you doing? Rocky68

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I wonder what the difference is between proclaim and Ganglion . Two days in a row the only difference was the pain wasn’t bad enough for me to take pain meds. Today I did. I’m very disappointed .

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From what I understandganglion is group of nerve cell clusters feeding info to brain regarding pain. Proclaim is name of latest Dorsal Root Stimulator. I believe Axium was the first. My Dr said there were possibly as few as 600 Drs in the States who are certified to do Dorsal Root Ganglion Stimulator. I told him I did not know what I'd do if this didn't work and his advice was try placing leads in different area. I asked if he had heard of any success stories using this Stimulator and he said there were success stories with using it for Pudental Nerve. I haven't read any on this website. He said by going at S3 level it would directly impact the Pudental Nerve. I hate being direct but after lifting bags of groceries yesterday I could not lay down without throbbing rectal pressure. My Pain does not include any vaginal or pelvic pain.

I can't remember but did you get Dorsal Root Stimulator or regular Stimulator? Perhaps Dr did not place leads at right levels. I will certainly keep you updated once I start trial. Don't know why this reply is written in short space. Rocky68

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I got the Dorsal Root Stimulator. I am going to adjust the devise again this weekend and see what happens. Does anyoneknow about Cannabis Oil. My pain is constant and I just want some relief while hopingthe devise works. No guarantee Cannabis will help but I will try anything!

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I've not heard anything about cannabisoil. My gynecologist wrote a script for lidocainebut one small tube was $116 and that was with insurance coverageand only for external use. I did not find it helpful. I also got some compounded Valium suppositories which will offer some relief but it will put you to sleep until you get right dosage. Pills could be cut into lower doses. You might ask about them. I think your pain sounds more intense than what I'm experiencing Rocky68

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I’ve heard some positive things about cannabis oil. It doesn’t help everyone though. My Dr has no problem with it. I’m suppose to get it Tues will let you know. So far nothing real positive about implant :-(

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I will need to ask my Dr about that. I don't know if insurance will cover it. Let me know cost and how effective it is. Are you having Stimulator removed? Rocky68

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No! I have been feeling worse the last few days and thought it was from the implant. We went to adjust it a little while ago and for some reason because it was near a magnet it was turned off. So that means it has been doing something👍 The cannabis oil is not covered by insurance. The kind I got thru Healthy Hemp. Com is the advanced charlottes web. Cost about $275 for 1 month supply. The co. Is quite nice and informative.

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That's pretty pricey oil. I'll be interested to see how you're doing since implant has now been turned back on. I should have date for trial this week. Please keep me updated on progressRocky68

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Yes it is pricey! If it works at this point I don’t care!!!! I’m of course hoping it will and I could go off all the other meds I’m on. I spend after insurance about$200 monthly as it is. This is all wishful thinking of course. I really don’t think I will feel that much better now that it has been turned back on. Maybe a little but who knows. Definitely not what I was hoping for. I truly hope it helps you. Definitely want to know how the trial helps.

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Lexi. Is cannabisoil working?My DRG trial starts next Friday. I just returnedfrom driving husbandto Dr and back and bottom are killing me. Rocky68

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Yes. It’s only been a week but I definitely feel a difference. Still taking pain meds late afternoon but nights aren’t as bad. Still early. Just want to be off pain meds.

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Did you have your trial???

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I definitely get it! I really hope it works for you!

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Did you have your trial?

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No. The Dr's office called Monday and said he had a family emergency. It is now scheduled for Friday, Dec 1. I did get EKG and bloodwork taken care of this week. Very disappointed but I've had this for seven years so two more weeks will pass quickly. Rocky68

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I definitely get it! Let me know how the trial works out.

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Will do. Rocky68

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How are you feeling??

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Oh my gosh. Had no idea I would be so sore where leads went in. I was in surgery room for two hours and three reps from St Jude were there. As I understand it the St Jude reps will be working to establishhow high or low DRG will be. Back does not hurt but is sore. I still fell spasms along perineum but Rep said it could take a few days. Is your device working better? Rocky68

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Just saw this! I wasn’t sore at all just uncomfortable. Surgery was about 45 min and one rep was there. I really don’t feel much better. Maybe a little but no wow affect that I was hoping for. My husband and I increase the devise every weekend haven’t had contact with rep for weeks. Seeing Dr Weds, The only way to really see if it is working is by shutting it off. Keep in touch. When is the trial coming out?

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Lexi. It's the second day of trial and I've had no backache but I still have rectal spasms. Rep is supposed to turn it up tomorrow. I am beginning to feel I went thru this for nothing. Rocky68

Why does this show up in a narrow format?

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Definitely don’t give up, I still haven’t, I can’t I don’t remember your back was an issue, but if so and you have no pain there, isn’t that a big thing? Also it’s only the second day. Keep in touch.

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My back only hurt when I sit mostly while driving. I haven't been able to sit as back is sore from procedure. I have no clue who Marcia is. She keeps showing up on your replies to me I will let you know again what's going on once they increase current. Thank you for staying in touch. Rocky68

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Marcia is me, Lexi is my dog don’t understand how that started!

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Marcia. I just posted review of DRG Trial. Rocky68

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I can’t find it. Not to good with this stuff. I will keep looking

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I posted it to general website. Let me see if I can copy and paste. You may see it if you just google www.healthunloked. Com

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Have you tried Pregabilin? Started taking it for fibromyalgia but it has completely eased rectal pain from a rectopexy op I had in 2015. Worth a try - not done much for my fibro though!

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I just read you did have DRG and location so you don't need to respond to those questions. Rocky68

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I also had the DRG trial. Where are they placing your leads?

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They placed 2 leads S 1 and 2 s2. I had it implanted. So far not too happy, I'm hoping because of the amount of years, 13, it will take longer. I have vaginal and rectal pain. Just remember everyone's body is different. Did u have relief after the trial???

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I had great relief during trial first three days. Some relief in surrounding areas lasted, but rectal pain returned and I decided to wait on implant. Now I am having a trial with Interstim at S3 and S4 mid November. DRG reps told me that it does take some time to zero in on stim settings. Hang in there!

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I'm trying, thanks!!!

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2 at S2 and 2 at S3

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Shelall I just posted review of DRG Trial. Let me know if you have questions. Rocky68

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I just sent you a message and it’s just says from me. Not good at this stuff lol

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Marcia. I'm back at hospital with Mom. It's Wednesday afternoon. We hope she'll be released tomorrow. Her heart function has fallen to 25. I will text you when I can talk as soon as things get half way back to normal. Ricky68

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Sorry to hear. Definitely text when you can

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Marcia

It is Thursday and I'm home after spending another night at hospital. Number you have is cell number and I am on Eastern Standard Time. You can call me anytime between 10:00 am and 8:00 pm. If I don't pickup just leave a message and I'll return your call. Looking forward to speaking with you. Rocky68

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Got your message late Thurs. I don’t always check my e-mails right away and today I do volunteer work. I would try and call now but long day and really not feeling well. How available are you either Sat AM or Sun?

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I am available Saturday from ten until two. Sunday I am available from ten until eight at night. Rocky68

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I’m going to try and call on Sat. I will put you in my phone for a reminder. 2 years ago I had a stroke which affected my memory and Cognitive thinking not terrible but upsetting anyway. I really wanted to be off all these meds because they’re not helping matters either. Looking forward to talking with you.

Marcia

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I texted two Reps today about continued backache (low) as well as tightness and burning in thighs and lower buttocks. Asked if any Reps had worked with PN patients. Their suggestion was to lower lead strength. My highest lead strength is 15. When I lowered strength it made spasms worse. They are contacting Physicians for feedback. I am 70 and in otherwise good health. I did stop taking Lyrica but will not be surprised to have to take it again. I'm currently taking Tramadol50 and two 10 mg of Baclofen if I don't drive. I take something to help me sleep as well as ibuprofen. I hope to see more relief but will not be surprised if I don't get it. If I'm not near phone just leave message and I'll call back. Rocky68

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Ok sounds good. I’m on too much meds it’s scary. My body has some resistance to medication. I will be 65 this year and actually can’t wait to get on Medicare. Bedtime for me talk tomorrow!

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Just sent private post. Rocky68

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Still can’t find #

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Click on your smiley face pic by your name and click on bell at top

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Not private call or text me

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Can’t find your phone # and I don’t know how you just had you and I corresponding!

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Can you tell me if you had any problems when lying down? I can't sit comfortably but have tightness, spasms and pressure when I lay down. It's pressure on rectum and spasms in area from rectum to vagina. I basically have to knock myself at night to get any sleep. Rocky68

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Yes I get no relief from lying down. Iif I lay on my stomach it's definitely better. I take ambien to get some sleep. I unfortunately also had a stroke about 1 1/2 years ago which affected my hearing, lost 60% in one ear and I hear noise which combined with the pain keeps me awake. I am so hoping this implant works. It's called Ganglion Dorsal Root Stimulation. Very new in US. Check it out! Of course I will let you know how I feel afterwards if you'd like.

Marcia

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Yes I would definitely like to know. Has a date been set for implant?

I have appt with Greensboro, NC pain management Dr Tuesday and will discuss with him. Rocky68

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Good luck and let me know what your doctor says. This implant is for Chronic pelvic pain. You need to prove you've done everything possible before insurance will cover it.

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Yes, the implant date is Sept 19th. I feel like it's my last resort after 13 years!

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You'll have to excuse me cause I had a stroke and I tend to forget a lot. FYI the implant is not just for Chronic pelvic pain. That's just what's your issue and mine. It can help other people with Chronic pain issues also!!

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i feel very lucky to have found a specialist pelvic floor therapist fairly close to me about and hours ride away.

she is very knowledgeable about pn, so this gives me more confidence, that she knows what she is doing and that she wont make me do anything that might be the wrong exercises to do for my condition. it hurts today though,but i guess thats only to be expected and she always asks me if the treatments she does causes any more pain and if so she knows where to concentrate on and what treatments to do, at the moment she is taking it slowly week by week so she knows what to do next, as she said herself, its no good doing too much at once otherwise she wont know what is causing the real problem

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I'm so happy for you. It's great to hear you found someone you trust. I truly hope it helps you! It's a long road. Unfortunately for me after 13 years, I truly feel this implant will be the only thing for me to do. I'm praying for the success!!!!

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i will also be praying for you and hope it helps you with the pain

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Thanks!

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Hi Lexi. How did the implant go? Where did they place the leads?

Hope you are seeing improvements.

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I had psyche evaluation yesterday. Psychologist wanted to know if I had tried Cymbalta which I haven't. I told him I had pain Dr appt Tuesday to discuss SCS. Have you tried Cymbalta and did it help? Rocky68

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I'm on 60mg of cymbalta. Unfortunately after all these years I'm really can't answer that. The only way for me to know 100% is to go off it. The dose is the correct amount for pelvic pain. I would try it you have nothing to lose. I went to the Dr today. With me it's all about time since the implant is cumulative. I just have to relax and not think about it all the time. I will also make some adjustments a little at a time. Constipation is also a big issue we are trying to address. With me it's definitely not a quick fix that's for sure I was hoping to feel 50% better at least. I really don't think that will happen. One never knows! I will keep in touch on any progress I might have. Just remember everyone is different!! Do you have a date for the implant?

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I did not take a pain med today! Pain is there but not as bad. I really almost don't want to admit it. To you it's ok. They say it's cumulative. Maybe it is working🙏

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Hello Lexi,

I’m just curious on how you are doing now. I’ve been suffering a little longer than you 17 years now so I’m curious on the DRG. I had a trial but the doctor inserted the leads at T8-T12. Don’t know why. I thought I was getting a dorsal root ganglion stimulater. Not. It made me so much worse after that. I’ve not been the same since not that my pain was anything great before it. But I would consider trying a DRG just not with the doctors that did my first stimulater. They also said since this one didn’t work a DRG probably would not work for me. Just curious on how you are doing. I hope you are doing well. God bless. Deb 👍🙏😊

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I’m doing ok but not much better. We are still making weekly adjustments. Where is your pain? If it’s where mine is I have no idea way the leads were placed there. I also started using cannabis oil. You have to increase the dosage slowly and so far it really hasn’t done much, but again will see. I’m seeing my Dr next week I will ask him about where your leads were put. Good luck and I will be in touch.

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Give me your number and I'll call. Rocky68

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631-834-2146

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