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Pelvic Pain Support Network
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Lexi

Haven’t posted in awhile. Long story I’ve had pelvic pain for almost 14 years. Last September had the Dorsal Root Ganglion implant. Didn’t do much but turns out leads did move. Went to another pain dr and she does the same procedure putting the leads differently. Did trial helped a little. I’m going through with this again because I need a little relief. My pain is vaginal and rectal. Two months ago I had trigger point injections that went bad. It caused more pain, then before. Now I can’t get out of bed without the pain getting worse. Any ideas, suggestions. I won’t stop after implant cause I know that’s not going to be the total answer for me. Just don’t know what to do.

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I hope the new trial will work at least 75% pain relief. I know I would welcome that. This DRG did not work for me. I am still searching for answers. I feel for you, but don't know anything further than what you are planing to do. Blessings for this next trial to work.

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The trial wasn’t as successful as I would have liked. Doing it anyway. I need something! Where is your pain? What doctors have you seen? Right now I’m just on pain meds which I never wanted.

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I have seen an orthopedic, neurologists, gynecologist, 2 uro-gynecologists,several pain management specialists. diagnostic radiologists, had all sorts of steroid injections, pelvic floor therapy, pool therapy. I also had one stem cell allograft by Dr Jarnagin in Tennessee, at the same time I had Botox. I have have had trials of three different neurostimulators, the last of which was the newer DRG. None of them were successful in the least for me. I take 1800 mg of Neurontin (Gabapentin) daily for pain. I have reduced myself from 2400 mg per day to 1800. I can't really tell it helped all that much, but reducing is the only way to tell. I also us Klonopin .025mg two or three times per day. It does help to calm down the nervous system. I have been taking the Gabapentin for years now, and maybe it is loosing it's effectiveness. I also take medical marijuana to sleep. It does help with that as I hurt when lying down as well. I don't function well using it during the day. I do not take opiods. Hope this explains a lot. I am waiting for the surgery to be perfected. I wish you all the best.

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Do you have Pudendal Neuralgia?

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I was diagnosed with Pelvic Pain years ago! How would Pudendal Neuralgia be diagnosed. Are there tests that prove that?

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Fourteen years later and still no diagnosis? What specialist have you seen? What was their treatment?

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I’ve gone to gyno, urologist, urogynocologists, and pelvic pain specialists. Had trigger point injections and Botox injections. Even had a partial hysterectomy. Had internal PT for years that helped somewhat. Now because of trigger point injections that went bad 2 months ago I can’t even do that. The vaginal and rectal pain is awful. I can sleep, take ambien. Once I get out of bed it’s over. I really don’t get it. Yes I do think something is missing. I know I’m going to have this implant, it will help a little, but not enough. I just don’t want to dread getting out of bed. It’s not just pain I feel but terrible burning😫

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Also had blocks years ago that did nothing!

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Lexi, do you recall way back when what your very first symptom was? Did you have fleeting rectal spasms? If you did, did they appear after exercise and/or after strenuous gardening, lifting many bags of groceries or other activities?

Have you ever had any surgery where the surgeon put metal in your body anywhere? I ask because metal Filshie clips, used in female tubal ligation surgery, can migrate and cause chronic pain if they cause an abscess to form, penetrate bowels, enter the bladder or cause an anal fistula. I had a clip left on my rectum for nine years! Radiologists DO NOT believe they cause pain! They do. That clip caused me neuralgia and terrible flare ups whenever I tried to exercise, walk, swim etc.

Can you recall a repeptive stress movement you may have done at work or at home that may have caused wear and tear on your body and pelvic ligaments and muscles?

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Did reply earlier but had to stop then lost the entire thing😫 Basically there has been no reason for anything!!!

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Once the clip was removed did that make you feel better????

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Yes because my flareups aren’t nearly as bad. The clip was irritating my rectum and the rectal branch of my right pudendal nerve could not calm down and heal.

Because the position of the nerve was altered due to being stuck in between ligaments, I feel it likely was left stretched for way too long and will never fully heal. I am doing way better than I was before but I need medical CBD oil for inflammation and THC oil for pain and sleep.

Activity of any kind aggravates the nerve. I have to rest a lot.

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Where do u get the medical CBD oil and THC oil? Does it make u puppy?

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Luppy lol

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Anything aggravates me. Getting out of bed always makes it worse. I have trouble staying asleep even though I take ambien.

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Hello Lexi,

I sure hope this round of DRG works. My Interstim helps somewhat so I am glad I did it. It is at S3. Rectal spasms are right side, but I have SI joint and sciatica pain on left side which now is affecting tailbone and groin areas. I think scar tissue from spinal surgery is helped trigger my situation. I use gabapentin 1600mg down from 2700. I also use a cannabis tincture that is equal parts CBDa CBD THC THCa. I sometimes use the same formula with the same ingredients with 3 parts of all except one part THC. There is no High with less THC. The synergy of this type of formula is supposed to reduce pain and inflammation. It does help me to function. I have tried and am still researching the idea of cannabis suppositories. I saw one posting from a pelvic pain sufferer who uses suppositories daily and it has given her relief.

I have used them when I have had to sit for car travel and was much more comfortable.

Where will they place your leads? Is the device the Proclaim model? Will the stimulation be the new Burst type?

I listen to audiobooks from my local library through an app called Libby. The books are free. Library of Congress also has free books for blind and handicapped. Not being able to sit is a handicap. Listening to books definitely helps with pain management for me.

Wishing you the VERY best!

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Very embarrassing but I don’t have answers to any questions right now. All I know it’s the newer one which was FDA approved only 21/2 years ago. I don’t even know exactly where the leads are being placed. Originally I know one lead was placed at S3, I believe the leads were at S2 & S3. They did move unfortunately. Basically was doing nothing or very little. I went for a sec opinion. She puts the leads differently and has had success doing it that way. Did the trial and it did help a little. Since the trial I have been in more pain. Which to me says once permanently implanted and adjustments are made I might get my life back. I’m in bed most of the time. Can’t drive. Also on pain meds that basically just make me more tired and maybe helps me deal a little better. I know the original DRG was made by St Jude. I am going to ask my dr your questions. I also am very interested as to where you’ve gotten Cannabis suppositories. That could also possibly help me. Thanks for writing back.

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Hi my implant is for tomorrow. The leads are put at L1 and S2, the devise they are putting in is the Proclaim model. Wish me luck!!!

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Wishing you the Very BEST! Let us know how you do?

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Cannabis suppositories are available at the dispensaries that provide the other cannabis products. The doctor will have to agree to it. I found out my doctor did not authorize them, so I didn't get them. I will have to discuss this with my doctor. I would like to try them.

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Cannabis oil is not illegal I’ve gotten it before and without getting the dr involved. So I would assume the same with suppositories. Right?

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No, as the CDB oil is legal and the doctor doesn't have to be involved so if the medication has TCH in it is not legal in all states. So if legal in your state, and you have TCH in it it will require a medical doctor who is approved to prescribe it.

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So the suppositories have THC and the dispensaries won’t send it without a Drs note. Does the dr fax that. Where do u live and what dispensary do u use

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I just reached out to my doctor. I had to leave a call back message.

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Let me know what happens. I also texted my dr about it.

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Lexi1221, The cannabis has to be legal in your state and the doctor has to be one who does that kind of work.

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I don't know how the dispensaries get the info from the doctor. The doctor's office called back. Doc has approved me getting the suppositories. I will let you know how it works. I live in Florida. I am currently using Trulieve. There are other dispensaries. That is correct, the suppositories have TCH and cannot be dispensed without a Medical Marijuana doctor's orders. Where do you live?

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I live in New York, on Long Island. I would love it to work for u. Let me know.

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Thanks Lexi, I will take anything that is legal. I am in agony most all the time. My pelvis is in a constant spasm. I am going to pelvic therapy, but so far the therapy nor the exercises hasn't lasted. After I leave the therapist office, I feel better, but by the next morning it is back as bad as it was before. The exercises hurt. I do try and do them. I am not walking as I was for a little while. I am lazy about it, it is raining or there is always something.

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Where is your pain? What do they do in physical therapy?

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See private message.

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Still don’t know how to private message. I know ruff. Anyway my pain started vaginally and then rectally. I actually was misdiagnosed, a number of times until I was told I have pelvic pain. Now next Tuesday a do my second DRG. It did help somewhat. I am basically in bed and this is no life. I’d love to talk on the phone. I’m old fashioned, not into all this technology stuff. If you want to call my # is 631-834-2146. Or private message me yours. Hope to hear from you.

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Let me know how you progress. Thinking of you today.

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Hi Lexi,

How are you feeling? Hoping that this round of the DRG helps!

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Unfortunately not doing well. I don’t feel the slight difference I did during the trial. Maybe cause there just so much pain. Experimenting with different pain meds that aren’t helping and costing a fortune. I was on a total of 3300 mg of gabapentine and today the dr switched it to Lyrica 200mg 3X a day. Took one this AM and had a bad reaction to it. I honestly don’t think she knew what she was doing. That’s a high dosage to start Lyrica. I put myself back on the gabapentin. I will try Lyrica again on Sat but 100 mg. . I don’t know if anyone has had issues switching from gabapentin to Lyrica

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Lexi, I am taking 75mg of Lyrica 3x day. I switched to gabapentin for awhile (because it is so much cheaper!) but it didn't seem to help me as much. I have been trying suppositories every night before bed this past week (10% gabapentin/2% lidocaine) to see if they help me stay ahead of the pain. I guess my "flare up" is better, but I hope and pray that the medical world will begin to pay attention to these chronic pain issues for all of us!! Take Care:)

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Does the Lyrica help you?

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How did you get the suppositories?

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The Lyrica takes the edge off, but it's no miracle drug! I saw a urogynecologist who gave me the script for the suppositories. I have both the 5%diazepam/2% lidocaine for daytime use and the 10% diazepam/2% lidocaine for bedtime. They really do help my pelvic floor from being so tight!

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I know the Lyrica isn’t a miracle drug. Taking the edge off would help. I’ve tried Valium suppositories. They don’t help me. I take 10 mg oral at night. I don’t think that does anything either. I might try the Valium suppositories with the lidocaine. I actually have an appointment Tues with my urogyecologist I will ask, thanks. Hope you are doing ok. Stay in touch. Where do you live???

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I live in Jacksonville, FL. I also got a medical marijuana card and couldn't zero in on any products that helped with the pain and didn't make me feel spacey. Cymbalta was really bad! I have a pain management doctor and he prescribed the Lyrica. He also prescribed 1mg alprazolam (xanax) to take at bedtime which really works, but I've read that it's possible that you have to keep increasing the dose overtime to get the same results.(: All that I'm striving for at this point, is to find something to lessen the pain so that I can help take care of my new grand baby without having side effects!! Flare ups are the worst, and very debilitating for me! Some Urogynecologists are doing amniotic allograft injections with botox, which Ialso had last December, but it did not lessen my pain, nor did it work for a few other people on this blog. Good luck with your appointment!

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Congrats on the new baby! Did you gain weight on Lyrica?

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Thanks!!!

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No, I did not gain weight on Lyrica, and I have been on it for several months. I guess medication works differently for each individual, and that is why it is hard to find solutions for PN--it is just trial and error and can be very frustrating for those of us suffering:( Good luck in your journey!

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Thanks. Good luck to you!

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BTW, where do you live? I have researched a lot of different doctors across the country, as well as been in communication with the president of the pudendal neuralgia society. Unfortunately, none of the best doctors who treat this condition are in my state of Florida, but I have read a lot, and my wheels are always turning as to what I should try next! There is always the possibility of surgery and there are still procedures out there. Unfortunately none of it come without a certain amount of risk! When/how did you get your diagnosis? I would love to have an MRN, but no insurance covers it yet, they are very expensive, and I would have to travel to get one:(

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Would love to talk to you on the phone. I live in New York. I’m also on pain meds that I don’t think is doing anything but make my mind fuzzy. Do u know how to private message?

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By private message, do you mean texting on a smart phone? If so, yes, I do. I have talked to Debra13 on this website and on the telephone. She lives in Staten Island, NY as is VERY knowledgeable! She could probably guide you as to what doctors, physical therapists etc. you should look into. She was a physical therapist before she was afflicted 18+ years ago. Try to find her on this forum--maybe you live close?!

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I unfortunately have issues with even this forum. Cognitive thinking isn’t great. Yes I do have a iPhone. If you can explain how to do it I would so much appreciate it. If I have to leave my # here worse case I would do that. Staten Island is far from me but would talk anyway. My vaginal and rectally pain so bad I can’t have PT. When I sit, stand, or move my pain gets worse. Hoping the Lyrica will help just a little. How long did it take for it to kick in for you. Do u take any pain meds at all.

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My husband actually doesn’t want me on this forum. It can get super depressing. For some reason I feel like I can talk to you. I’m alone most of the time.

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I don’t know how to private messsge

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I understandi, these forums are like a double edged sword--on one hand, there is some good info. available, but on the other hand, it can be very depressing to me to read! My cognitive thinking isn't all that great at times on these medications, so I understand that too. I am technically challenged on the computer, i-phone etc., but my grandkids have taught me so much as they've gotten older! I would be able to talk to you sometime during the week, maybe you could give me good times for you. I am actually busier than I probably should be this week b/c I am filling in a few days to babysit my 10 month old grandson.

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Unfortunately I’m basically in bed. So I’m here. Visitors are very few to say the least. Busy lives, also not close by. No family to speak of. Trigger point injections that went bad in August caused things to be so much worse and I’ve had this for almost 14 years. Yes not a great situation. I’m hoping the Lyrica will help which I started today. Up until August I was helping my girlfriend babysit her twin granddaughters. I miss them so much. So how do we talk???

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I reread what I texted. Sounded pretty depressing. It is hard right now but I know things have to get better. My friends do call and text, most just aren’t close by.

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How would I get in touch with Debra13? Trying to get as much info as possible.

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Hi there!!!

How are you feeling today?????

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Been trying to get back to you. Not savvy at all with this stuff. Thanks for checking in😊 Nothing has really changed. Started Lyrica yesterday, 100 mg. Will see. One thing that I think is helping somewhat is I take Valium at 7:30P it starts acting about 9. This is when I’m suppose to be getting ready for bed. lol. I always have taken it before bed. Very weird. Have to talk to my dr about this Valium issue. Have you ever had experiences with Lyrica? How are u doing?

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I’m doing good!!!

Yes the Lyrica works really good for me!!! I took Gabapentin for a few years when this all started, it made me gain weight and feel very strange (loopy) and very sleepy!! The lLyrica really helps with the burning!!! It took about 2 to 3 weeks to kick in...I take 250mg 2xs a day am and pm

I’ve been thinking about you and wanted to ask if you have ever been to PT?

When I went my physical therapist showed my husband how to check my pelvic alignment...turns out when I’m in spasm my alignment is off and I get a right up slip!!! My pain is always worse when my alignment is off!! It could explain why you are in such horrible pain as you move about upon waking!!! It’s easy to check just google “ how to align your pelvis”

Do u have pain in your hips? Tailbone? Lower back?

I’ve been thinking about you and I am so sorry you haven’t found relief!!! Also if the oral Valium helps your pain see if you can take one in the morning and one at night!??? Something I have personally noticed is that I need lots of sleep 9-10 hours a night!! If I’m in a bad flare I can sleep all day and night!! It’s the strangest thing!!!

Hope the Lyrica works quickly for you!!! Don’t be afraid to go up to a higher amount! I also take Tramadol 300mg.

I’ll check back with you tomorrow ❤️

Dawn

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I’m glad to hear the Lyrica works for you!! Did u start at such a high dose? She started me at 200mg and I got much too dizzy. I normally do sleep like you but since my trigger PT injections I’m not sleeping as before. Even taking ambien. Can you have PT without internals to help? My burning is too intense to have anyone in there. It will just be aggravated. Does tramadol help nerve pain? I’ve been on very strong pain meds that do nothing (I don’t think) I really don’t want them. They make me feel luppy. I’ve heard of tramadol, also know it’s not strong. I wonder if maybe going off the nucynta and try that would be an experiment to see if what I’m taking is really doing anything. I could go right back on it. Yes I’ve had PT for many years!!! I will talk to my dr about increasing the Valium, thanks and please keep in touch

Marcia😊

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Hi Marcia 😘

When I started the Lyrica I started on 75 mg a week later he bumped me up to 100mg them every week til the burning subsided!!! For years I’d say this BURNING is making me want to “ jump” and I meant it the throbbing vag/rectal pain and pins and needles and shooting pain all stinks!!!! But the burning was making me crazy!!!! Once I was talking over 100 mg it seemed to work!!!!

I no longer see and specialists only my pain management dr once a month! I haven’t been back for 2 years!!! I don’t currently see my PT either!!! I know now what I can do and what I can’t do!!!

Do you get relief from ice????

I’ve read some make ice baths (sitz) baths...at my worst I’d walk around with an ice pack wrapped in a lil sock in my panties. Sounds strange but my nerves were so irritated my pain was so heightened and I knew that for nerve pain YOU ICE!!!!

I think it’s good to try different meds we r all individuals so if your pain isn’t covered move on to something else!!! Also if you feel that whom ever is prescribing your meds isn’t knowledgeable about your condition move on to someone else!!!

Speaking of husbands I do not engage in any sexual activity at all... if I do it will set me back!!! It makes me sad but it’s honestly not worth the flare!!!!

Do you have a muscular component? Do you have tight hips tight buttocks? Those r all indicators for mis alignment if not your alignment is probably great!!!

Hope you are well today😊

Dawn

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Hi Dawn My pain is vaginally and rectally only. Truthfully that’s bad enough. Sex, very funny. That hasn’t happened in 14 years!!! I don’t get relief from heat or ice. Lyrica is so expensive too. She started me on 200mg but that was too strong after taking 1 pill I got very lightheaded so she dropped it to 100. Each script has been costing $250. I’m on Medicare and in some stupid donut hole.Very new to me I turned 65 in July. Maybe she should just prescribe a weeks worth and see how I handle it. My body just needs to adjust I guess. I don’t have flare ups it’s just constantly there. Very difficult to handle.,

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Oh my gosh it’s $35 for me!!!! Go to Lyrica.com and print out a coupon you can USE the coupon every single time!!! My pharmacist showed me and even printed it out for me!!! Yes it’s sad the no sex thing!!! I’m 55 my husband very much would like to but seriously not possible!! You will get better we just need to find the right combo for you!!!! The burning is just unbearable I know just what you are feeling 😢 never ever give up!!!

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When your on Medicare you can’t use those discounts 😫

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Hummmm that stinks!!!! I wonder if it would be more cost effective to pay cash and use the coupon instead of going thru ins🤷🏼‍♀️you can always ask the pharmacist!

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Don’t think the pharmacy will do that but worth asking.

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Just remembered cause I remember nothing these days. I asked the pharmacist if they could do it with the nucynta and they wouldn’t. Nucynta is $250 also and I don’t think it’s doing anything. :-(., We have to find the right combo or go brought trying., Not really but still!!!

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I know that was all about me sorry! How are u? I forget, where do you experience your pain? Unfortunately my husband would be clueless to help me :-(

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Hi is the Nucynta you take time released??? I looked it up and it’s an Opiod for short term use such as after surgery... do u get any relief 🤷🏼‍♀️ a few hours???? If not Marcie move on find something time realeased you need pain coverage 24 hours!!!

I was taking Norco and my pain management dr asked if my pain was being managed I said no not really he said let’s try something else!!! That’s when I started with the Tramadol 300mg it’s much better and I’m not popping pills all day!!! Yay!!!

Honestly I’m living again I still have struggles and I do have to lay down everyday use my tens but I can go shopping go to a movie meet friends for lunch!!! I’m doing pretty good!! I’m done with specialist and sex they just flare me!!!! 😂😂😂 And honestly I’m not a candidate for decompression surgery so I’m pretty sure this is as good as I’m going to be!!! I want to be there for you and I want you to get better 😘

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I tried the nucynta er it didn’t do anything. Is the tramadol 300 er? I know it’s not very strong which is fine if it helps. I asked my pharmacist about it. She said it was a big difference. Never tried Norco. I’m so happy for you. What you do is all that I want. No I don’t want to be popping pills. Thanks again for keeping in touch. I have a dr appointment Thurs and will mention this to her.

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Hi there yes 300mg er that’s what I take everyday...now today I’m in a flare a flare to me is anything over 6 I haven’t been running marathons or having making love all night or anything to cause it but it is!!! So today along with my Lyrica and Tramadol Er I’m using 10 mg of Valium suppositories and I’m going to take 7.5 Norco (it an opioid) this is my RESCUE go to! Not everyday!!! I do notice that if I’ve had a little more emotional stress especially husband stuff or if one of my children are struggling I’ll flare it’s as tho my brain and pelvis are connected!!!!!!! Let me know what your Dr says on Thursday...you can always ask me anything I’m here for you and anyone else that suffers this horror 🔥

Dawn😘

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Dawn

Your wonderful! Thanks for your advice. I will mention certain things to my dr. I know everyone is different. It would be a miracle if Lyrica works for me. Enjoy your children, they grow up too fast. I’m sure you’ve heard that before😊 I will definitely be in touch!

Marcia

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Thx❤️ my kids are all grown!!!! My youngest lives at home still I have 3 grandkids and of course my pups!!! They are all very special!!!

I hope the Lyrica works for you!!! Please keep in touch!!! I keep my phone right by me!!!

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❤️

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I’ll check back soon 😘

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Hi, it’s Marcia. How are you doing? I don’t want to jinx anything but yesterday for me I had a good day. I’m so hoping for this to be some beginning. The one change was Lyrica. I’m taking 100mg X4. There are various opinions on this drug but we are trying it. That is a lot in one day. I don’t know how to post only reply. I also have a consult this AM with a nurse who works with a dr who does stem cell exosomes. Very rare. After talking to her and I think it might help someone else maybe you can walk me through putting it on the blog. Be well!!!!

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