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

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

  • 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

  • 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

  • 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

  • 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

  • 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

  • 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

  • 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

  • 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

  • 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

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

    andreax

  • Thanks so much!!!

  • 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

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

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

  • 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

  • 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!

  • Yes I am nervous!!

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

  • 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???

  • 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!

  • I'm trying, thanks!!!

  • 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

  • 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

  • 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

  • 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.

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

  • 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!!

  • 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

  • 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!!!!

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

  • Thanks!

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

    Hope you are seeing improvements.

  • 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

  • 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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