Pedundal neuralgia or piriformis synd... - Pelvic Pain Suppo...

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Pedundal neuralgia or piriformis syndrome, or both if possible?

Marjun profile image

Hi! I’ve been in pain for over a year and half. It began with perineum pain, and rectal pain/pressure. Then came the low back pain and weakness in the backs of my thighs. I was doing a great amount of work that involved squatting, lifting heavy objects, and riding a 4-wheeler…I work on our ranch. I have a herniated disc but imaging shows that’s not the source. I am unable to sit, and lying on my back is bad too. The only thing that helps is walking, but even that is limited, ice and meds help too. I have had lumbar, ganglion nerve, facet joint, and SI joint injections. Next will be piriformis and if that doesn’t work, pedundal block. When I read online, my symptoms are a combination of pedundal neuralgia and piriformis syndrome. The pain and weakness are constant, mornings are better than evenings. I feel it’s a trapped nerve somewhere. Has anyone experienced anything similar to this, and what helped? I have done tons of PT for pelvic floor, coccyxdynia, and low back and have been to the chiropractor numerous times, will try acupuncture next.

56 Replies

Hi

Drm532 profile image
Drm532 in reply to Drm532

Would like to chat to you I've got the same or very similar for 15 years now I have no life

Hi MarjunIt sounds like you have damaged/trapped pudendal nerve as not being able to sit is a classic symptom. I developed similar after too much cycling. It took me 8 months to get an accurate diagnosis ( pudendal neuralgia) and Physio, acupuncture and indeed nothing helped except walking which reduced the pain a little. My saviour was medication which helps me manage the condition very well. In my case it’s Pregabalin twice a day. After 2 years my previously extreme pain is now more of a discomfort. But I do try and avoid sitting and use a donut cushion to drive.

It is an awful condition so I hope you have family that understands. Your back issue (which I suspect is a separate disk issue) unfortunately compounds your problem as I still get respite laying on my back with my legs on a chair. Also relaxation exercises helps too.

I wish you the best of luck getting a diagnosis and with pain management.

M

Marjun profile image
Marjun in reply to Yorkdafs

Hi Yorkdafs,

Yes, you are absolutely correct, only the gabapentin works for me. What kind of dosage are you taking? I’m taking 200mg 3x a week…it helps me get through the day, but not enough to get rid of the symptoms. Also, have you tried the pudendal nerve block?

Yorkdafs profile image
Yorkdafs in reply to Marjun

Hi Marjun My dosage is 150mg pregabelin twice a day. I tried reducing it once but suffered for it, so continue with it. I’ve had a pudendal nerve block which seemed to help initially but not for long. Relaxation exercises laid on my back gives me complete respite. Also it may be time itself which has helped in the reduction of pain? Who knows? That’s why it’s so frustrating to have this condition. I hope you can find whatever suits you in managing the problem.

M

I had the same experience. The nerve block lasted for 4 hours. It was a great relief for such a short time.

I have pudendal neuralgia, I have gotten 100% relief from radio frequency ablation. FYI. It doesn't last forever, they say every 6 months to 2 years. They heat up the nerve for 2 mins. Not 100% perfect for me, because of severe mesh complications, but it took the sitting problem away.

Describes my problem perfectly. I have had these symptoms for ten years and tried all the shots including 3 pudental blocks which did not help. I also three years ago had a DRG stimulator implanted which helped some but now am having it removed.

I found a female Dr in Chapel Hill who specializes in female chronic pain. I had two rounds of botulism injections thru vagina (yes I was asleep). The Botox was injected into five trunk muscles. This helped with muscle spasms but I still have rectal pressure and back issues. Having another MRI in November. Then back to Chapel Hill I think next step will be epidural. Rocky68

tallandsassy profile image
tallandsassy in reply to Rocky68

Hi Rocky68, What is the name of the doctor in Chapel Hill? I have a house in NC. Thanks.

Rocky68 profile image
Rocky68 in reply to tallandsassy

Dr Erin Carey. Takes long time for appt so get on a waitlist. Good luck. Shots did stop spasms but the rectal pressure is still there as back pain. Rocky68

Marjun profile image
Marjun in reply to Rocky68

Hi Rocky 68,

I too am trying to see a specialist at Stanford for pelvic pain. She is booked through December and the Jan 2022 calendar is not available yet! I hear she’s really good, I hope to find some relief soon.

Good luck with your specialist.

Rocky68 profile image
Rocky68 in reply to Marjun

Asked to be put on waitlist. Please keep in touch so we can compare treatments. Rocky68

Radiofrequency ablation has helped me! Better than interstim and injections. Although, I'm still getting botox injections every 3 months. I think they are working together.

Where are you getting the Botox? I might be getting Botox in the piriformis muscle. Also, is the nerve ablation done on the pudendal nerve?

I get botox into the piriformis and obturator spaces. I have pudendal neuralgia on both nerves (right and left). I've been getting them for almost 10 years now. No sedation, my doctor thinks they work better without sedation because he I can tell him the worst pain location that he can find. I was not able to walk before these shots. I was hoping that my need for them would be lessened over time. So far not the case.

Yes they are using radiofrequency therapy on my pudendal nerve. It is really helping a lot. I am considering getting my intetstim removed so he can ablate both nerves at the same time They use different meds for diagnosis of PN pain. Then they a stronger med for blocking and a short term steroid for testing. The PN nerves are very important. They control our bowels, bladder and sexual functions. I think they can be restored. Botox paralyzez the muscles so they no longer spasm. These are very painful spasms . Valium also works best on the pelvic floor (for oral meds, ). Be careful with Valium , taken over a long period it can hurt your brain memory functions. Sometimes I give in, pain is to great to bear. Much less used since I had the radiofrequency ablation. It is a miracle for me. I am not 100,% back - YET! There is a lot of damage from mesh complications. So I have hope I will continue to get better and make progress in bowel and bladder as well

WE SHALL SEE

,

Can I ask why you are having the stimulator removed?

I’ve had stimulator since Jan 2018. It did stop perineum pain but nothing else. My pain has increased and I can’t get pelvic or back MRI unless it is removed. My pain goes in different directions each day. Mid back, hips, sacrum and down legs. Plus I have pelvic pain. Dr Carey wants MRI on. 300T weighted MRI to see if she can see anything. Rocky68

I had the same experience, the interstim worked great at first, but over 2 years it declined.

I had implant removed on 10/29. My Dr is scheduling pelvic MRI which I doubt will show anything. I’m going to ask about the ablation or freezing they do for Pudental Nerve. The problem is they are not sure it’s the Pudental Nerve causing problem since I’ve had three PN blocks which were unsuccessful. Should know more by end of month. I have started taking 150mg of Lyrica to see if that helps. Please stay in touch so we can discuss procedures. I’ve had too many IVs and shots. Starting to flinch when I see a needle. Rocky68

BIU@

I've had the exact problem as you mine was caused from vaginal mesh and hysterectomy ive suffered with this going on 11 yrs i had my mesh taken out when i finally figured out this was the cause of my pudendal nerve pain issues that was 4 yrs later I've done all the physical floor therapy the nerve blocks the nerve ablations. I had a Medtronic nerve stimulator that game me 100 percent relief but since the leads were put directly into the sacrum area but not being sutured in they ended up moving so the pain came back . I had it revised it still didn't help. So back to more injections. Finally got a Medtronic pain pump inside my abdomen now which i has Dilaudid in it. It lets me have more relief than anything else has. I can't imagine not having this. But without the mesh holding things up i ended up having rectocele and cystocele and I had surgery on the prolapse and she messed me up worse so now I'm in worse pain and my pain pump isn't as affective. The pain pump is wonderful though. You might ask your pain doctor about it there's a trial before the permanent one is put in. Good luck i hope and pray everything works out for you.

Marjun profile image
Marjun in reply to Liz_2018

Hi Liz_2018, I’m so sorry to hear all that you have been through. This journey is not an easy one, it takes a toll on all aspects of one’s life, physically, socially, emotionally…basically it becomes a roller coaster. I qualify my days as good days and bad days. And the good ones just mean less pain not pain free, and the bad ones are unbearable.

We need to hang in there and remain optimistic.

Hope you will find relief soon.

I am so sorry to hear this. I am suffering from mesh complications too. I only had a sling. They damaged both my pudendal nerves with it. Right and left. I hope you can find relief. So you tried radiofrequency ablation and no help? It helped me a lot. My doctor did it with fluoroscopy. I think it makes a difference. He puts iodine in the nerve so he can tell he is hitting it directly. He also goes by my symptoms.

I never had the radiofrequency ablation just ablation nerve block is what they called it. Can you give me a little more info and about the fluoroscopy. I took a SS of your message to show them when i go get my pain pump filled. I was supposed to start pelvic floor therapy again tomorrow but i lost my ride. So I'll have to wait till the 29th. The first time i went back in 2012 before i had my mesh taken out i did the pelvic floor therapy and as it helped right after she was done as soon as I got into my truck and on my way 5 minutes into the drive my pain was back and worse. My mesh was the oberator sling as well it's still a mesh and was falling apart and embedding itself to everything. He didn't remove my anchors though. My pain is mostly on my right side or it seems to feel like it's the worse hard to tell it just constantly hurts. What gets me and even since I ended up having a prolapse when the darn doctors examine me they go shoving their fingers poking here and there saying done it hurt here, here or here so fast and the position your in sometimes you can't really tell but if your sitting or standing i can tell right away or I can put my hand right where the pain is. Now this is the urologist and GYN not my pain doctor. I also was told it could be entrapped but you need to have that fixed as soon as you have had mesh put in and have complications. And you can't have that surgery if someone has already took part of it out without the anchors they need the anchors to be able to pull the rest out. This sling sure has ruined my life. And I didn't think i needed it but let the doctor talk me into it because I was worried about wearing adult diapers at the age of 60 well I'm having worse problems now. I would appreciate any information you can give me and I hope you get better as well.

Oh, I am so very sorry! I had several mesh removal surgeries. I was very fortunate to be able to go to Dr. Raz in CA at UCLA. Excruciating flights from other side of country. He didn't believe in the conservative approach to removal that most, if not all doctors now believe. He got it out of the areas others feared to go. He was trained in the Israeli army as a doctor. If a soldier got shrapnel it had to come out, no matter where it was, or they'd die from it anyway. He was in his 70's when he operated on me. He is now retired. Which I pray with all my heart that someone will step up to replace him. Have you had a translabial ultrasound? They can see the remaining mesh on that. I had a 2cm piece that was removed in 2018, made a huge difference. The doc who removed it said there was no way it was taken out of my Obturator. Of course, I argued with him, but after the surgery he admitted Dr. Raz did take it out of there. They are being trained now that is too risky. Dr. Raz never lost a patient. If you still have mesh in, that would explain why this pain pump has been your best answer. My experience, along with at least a dozen ladies I know of, us that PT makes the pain worse, while mesh is still in. It can act like a saw, it's plastic, so it is restrictive against muscle and tissue that needs to move freely. So certain moves will bring pain to a new high. I told every PT I saw, tell them to get the mesh out before PT PT makes it worse! Some heeded my advice, and others learned the hard way. That does not mean a radiofrequency ablation would not help if PN nerve flared. Did you get any relief from a nerve block with steroids guided with CT and fluoroscopy? That is the only ones that worked (very short time) for me. I had two others that used plain x-ray - useless. I don't know where you live, but I am finding my help in Birmingham, AL at this time. I am dealing with the damage left by mesh and removals, but I do get to 0 pain at times. And overall not higher than a 4, unless a bad flare or very long car ride, UTI, stuff like that. 4's are rare for day to day. Mostly 0-2 with meds. I have been able to drop a lot of meds in the last 4 months. Since radiofrequency ablation. I lived in 9-10 pain daily in the beginning, severe pelvic spasms, vagnisimus, etc. Piriformis caused lot of pain. Mine mostly left sided. It does seem like one side hurts worse, although pain on both sides. I know exactly what you mean about doctors trying to locate your pain. The reason it is hard to know is pain refers

For instance the 2cm sling that was removed was right next to my obturator, but the pain was in the vaginal wall. When my doc does the botox, I know he's in the right spot when every area that hurts flares to a 9 at least! 30 secs of horror every 3 months, but relief and life back in between. Sometimes I get pelvic spasms and bladder spasms after. Go home lay in bed for a day and am fine by the next day to day after. A few times he has hit something that causes a bad flare that can last for 10 days. That was more in the beginning (2010) while mesh was still coming out. Of course, I don't have my whole life back (sex life over), but I can walk 2 miles, sometimes more. And get around- I could not drive for years following and was in a wheelchair for about 4 years.

I hope this helps. Praying you find what you need.

Dr Zimmerman in Dallas took my mesh out except for the anchors in 2015. For some reason he didn't think he needed to remove anchors in women unless it was giving them problems. Every doctor I've been to has said they can't feel anything poking through the walls of my vagina that felt like mesh. They all say it's scar tissue. And the urologist that fixed my prolapse advised me to do pelvic floor therapy i wouldn't and when she did my surgery she made my pain worse so I went to another urologist that supposed to be a pelvic reconstruction surgeon and she said the same thing and told me to buy this book Facing Pelvic Pain A Guide For Patients And Their Families and then she told me that there was nothing else she could do for me. The book is informative but i already knew most of the stuff in it so more less to me a waste of $30.00. If these exercises are going to make me hurt worse then I darn sure don't want to do them. My pain was at a constant 9 and 10 and I was nearly suicidal. Took me 10 yrs to finally find a doctor that suggested this pain pump. It took my pain level down to a 6 on my good days. But then last spring I had a #3 rectocele prolapse and #2 cystocele prolapse. And the urologist that's supposed to be the top in Dallas Texas at UTSW she just made things worse and I told her I could still feel the prolapse at my pre-op appointment she said it was swelling and it would go down. But it hasn't and it's been over a year. This other urologist said it looked fixed and that I'm just so small down there that everything is right at the surface. Well all I know before the prolapse it didn't feel that way. My sex life has been over with as well 11 yrs. And it's been hard. I'm so sorry that your dealing with the same mess I am I can't hardly drive either it's bad enough to sit and stand even laying down hurts only when I'm asleep is when I'm not in pain. But I'm thankful i hadn't been stuck in a wheelchair and I'm so sorry you had to go through that. I hope you had your family and husband's support. I do have my daughter I thank God for her. So I think my next step is going to be to cancel my pelvic floor therapy sessions. Probably for the best i don't believe the ins plan pays for it anyways. I will loose my Ins the end of this year because our Cobra ran out so I had to seek out a new plan and a lot of facilities and Doctors we'rent included in several of the plans. I just made sure my pain doctor was. Thank you for sharing your experience and what you had done I'm going to show my pain doctor and see about the radio frequency and other stuff you mentioned.

God Bless. Take care

I highly recommend a translabial ultrasound. It shows mesh. They can't feel most of it. I had several "idiot" doctors tell me the same thing! It's not perfect, but most of my mesh is gone. Dr. Zimmern was trained by Dr. Raz. He is not as courageous. More conservative, as training doctors has changed in this way. He operated on my good friend. He found mesh actually going through her femoral artery, he closed her back up. Let her know. She ended up going to Dr. Raz. He put her artery on a bypass and removed a lot more mesh out of her. I really miss him. My husband has stood by me this whole time. He said he'd marry me again, even if he couldn't have sex. Love is more than sex. I cried very hard and thank God for him. We've been married 40 years. I am now 60. Ruined life at 49. So many stories like this. I don't know why he didn't remove the anchors. Risk of foreign body reaction. It is hard to get out. Dr. Raz pried mine out for 2 1/2 hours. Dr. Parnell told me they use a bone saw to get it out. Why are they still using this crap?? It defies reason.

Maybe this is why no one will touch me for prolapse. We don't have enough material left to fix it with. BTW: Docs were being trained to only take out the part of mesh that was causing problems. I totally believe Dr. Raz was right, get it all out.

Yes i knew that Dr Zimmern was trained by Dr Raz that's why I chose him because there wasn't any doctor here that remove all mesh in Texas but I didn't know he would leave the anchors. And I couldn't go to Dr Raz or Dr Hibner didn't have the money or a way I live in Texas. This nightmare started Oct 25 2010 I had to do all my own research trying to figure out why I was having all this pain at first going from doctor to doctor without any support except my daughter. I've been married 38 years this Oct To him sex is everything and he reminds me that all the time that he told me that when we got married well I cant help what happened to me. And if the shoe was on the other foot he would have my support. Marriage vowels say to death to us part in sickness and health but some spouses just don't take their vowels seriously so I'm alone. I sleep in my own bedroom. I take myself to all of my doctor's appointment's the majority of the time if it's just so bad and my daughter can take off she will take me. If I have a surgical procedure and it's required that someone has to dive and she can't take off then he has to step up. I've thought so many times of just ending it but i live for my daughter and 2 granddaughters all we have are each other. No much family left so we stick together. They're my world. I just wish i could get some straight answers from a good doctor. I don't want to do something that's going to make my condition worse and if pelvic floor therapy is going to make it worse why the heck tell me to do it. I try to stay busy as possible to keep my mind off my pain that's the only way i can cope i love flowers and plants so Im constantly doing things with them. I try to keep busy and stay away from him since he retired which has been a yr now and it's been really a big life change for me. Seems like I have no time to myself now and he stresses me out when he gets mad and that causes my pain to increase. All I know to do is just try to live day by day. I'm 60 yrs old also. I will turn 61 in February. So you and I are the same age and nearly married as long your so lucky to have the support of your husband that means a lot.

Yes, God has been good. Long story. I love flowers too. I live for my grandchildren also. Doesn't it make you mad that we have to do all the research ourselves? They cheat, put this on the market and then have no answers. I told my doctor once that I want someone to more than I do and just tell me what I need to do! He said he wished for that too. We're not there yet. I have also been fortunate that we could afford to go across the country. I've been to many states looking for help. I know they do translabial ultrasounds in Birmingham, AL. That is where they found the 2cm piece. It seems like the University of TX should have someone there who can do it. Dr. Raz also invented this procedure. I had a mesh removal surgery in 2010 and the doctor told me he got out 95% on both sides to the obturator. Afterwards my pain skyrocketed. 9-10 constantly. He said all that was left was PT and pain control. I waited 6 mo the to see the pelvic pain specialist. I told him what I had been told. I told him what women were saying about Dr. Raz. He said go to him!! I made an appointment with him that same day. I was living in AL and it seemed impossible to go to CA. My husband was with me. I wanted to die. I know you know exactly what I'm talking about. Excruciating plane flights, I cried through each one. I saw him 5 times. After the first mesh removal surgery by him, he said that only 20% was removed from my left side. The rest was intact. I believe the first surgeon was sincere. He was believing what the leaders were saying, only take out the part that causes problems. But huge difference from 95% on both sides to 20% on one side. I am so happy to hear that your daughter loves and supports you as much as she can. Family is everything to me. I'm sorry your husband is selfish. That's just what it is. Our whole world has lost it's moral compass. I used to wonder why there wasn't much help for the mess all the mesh made and how much suffering it caused. No one seemed to really listen or care. But now, with all the craziness going on, it is much clearer. The world is too overwhelmed. I will pray for you, and your husband and family. I know your life is very hard. Don't give up. Hangest thou in there!

Oh, and my birthday is in April. So we are real close in age.

Thank you for your kind words just talking to you helps a lot. Sorry for the delay in answering back I've been so busy trying to get my greenhouse ready for winter. It needs work and of course i have to do it myself. If I ask i just get this look. The television is more important but yet if there's anything he needs help with he's hollering. And most of the stuff he needs help with i can do myself.Let me tell you about how much support and the care this man has for me 3 years ago he was actually very strange with his phone and when I'd come in the room he'd take his phone and leave. Well the idiot forgot I'm the one that pays the bills among everything else around here all he did was go to work come home kick his boots off and eat supper. Oh we would go do chores afterwards since we live on a small farm and have a half a dozen head of cattle. But the. It was in the house in front of the TV. But back to the story all the weirdness about everything he was doing and with his phone i looked at the cell phone bill and notice a certain number being called and being texted back and forth and the days he would have to go out of town for his work. Well i found out he was messing around with another woman. And when i confronted him he said since I was messed up medically and couldn't have sex that he didn't think I would care. I thought think again. I never was so hurt and disappointed and that totally ruined everything for me. Its unreal how many spouses do this to their significant other because they have medical problems it's not a excuse or a right for them to do this to us. I'm trying to hang on. I live day by day i only have a few friends since ive lost so many due to having to stay here at home. It's okay though I'm a survivor i have to be. I'm not letting him beat me. I wish you all the luck and happiness also. I appreciate you talking to me that helps. And you and your family are in my prayers as well.

Take care and God Bless

I know the loneliness you speak of. You find out who your real friends are when you are taken out. I use to live for bible study and being in my group. I miss it. But, this is a different season. I also know the material now. Not saying you never stop learning. I am so sorry your husband is a selfish jerk. I read 95% of the husband's whose wives were hurt by mesh leave their wives. We have met them. On one of my appointments at Emery, I was in so much pain. The exam was brutal. The doctor looks at me and tells me how lucky I am. Believe me, I did not feel that way! He said most of the women he sees are alone and deserted. My husband was with me. But,even though he supported me in every way physically, emotionally he could not handle it. He has grown a lot since then. He still has a hard time emotionally, but I guess, so do I. Once when we got on an elevator at the Tiverton, by UCLA. I was in the wheelchair and I started a conversation with a woman on the elevator. She said I'd never guess why she was here. Well we had mesh in common. She stopped, looked at my husband and said "you're my hero". You stuck by your wife. I wasn't there. I didn't feel "stuck by", all the emotions. I felt like, if you only knew. I missed how he really was loving me, in the way he could. I was just in so much pain, barely able to make it day to day. Drugged. Etc. I was all about me. It is real hard not to be, when you are just surviving. He didn't seem like a hero then, but he is now. I was expecting him to be like the touchy feely guys in the movies. Just not reality. I have found, the touchy feely ones often don't have character. We are different. I thank God for him.

BTW: I woke up thinking about something you said. You don't feel pain when you sleep. That is a classic sign of pudendal neuralgia. Dr. Hibner told me that.

I have prayed for your husband, and will continue. As well as for you and your daughter, of course. I am so sorry for your pain and loss. He doesn't have a clue to what he has in you.

I want to ask you a question do you have a lot of pain even when standing? I have pain no matter what position my body is in. When it first started the only time it didn't hurt is when I sat on a toilet or if I stood up. And I could lay down also with a ice pack between my legs and it would help some. Some people tell me if they stand their pain goes away. I have constant pain no matter what position but sitting is the worse.

I had pain when standing. I could stand a max of 15 mins before pain got unbearable. That was in the wheelchair days. Although, like you, sitting was really painful too - another key of pudendal neuralgia. O have found getting all (I pos a few fragments running around) the mesh out. I am much better, but suffering from nerve damage and excessive scarring. Pelvic floor dysfunction. I feel like they took one of those soup blenders and let it go inside. Much more painful while mesh still in!

My mother in law could not understand how I sat on ice paks between my legs!

I guess the reason I must still have a lot of pain standing is because of the anchors. Zimmern still won't remove them he says they aren't the cause of my pain. No one believes me that the anchors are except my Gynecologist she said she thought she could feel something on the right side. I contacted his office and told them that he still says it's scar tissue without an examination. I just give up on trying with these doctors here and this is Dallas doctors UTSW supposed to be the best.

I know exactly what your saying about the ice pack. Before the urologist did my prolapse surgery and messed my nerves up worse anytime i had to drive i kept a frozen water bottle between my legs or I did have to sit i always had an ice pack but i always kept a blanket over me so no one could see. But everyone that knew said are t you worried about getting burned. I swear don't people know we take precautions i wrap mine up with my now 38 yr old Daughter's cloth diapers that i had leftover that were still new. I felt like i may need them for something i never thought it would be this.

Well precious I wish you and your family a Happy Thanksgiving. I've got a lot of cooking to do today so I won't have so much tomorrow. Please stay in touch i so enjoy talking to you as I don't have anyone except my daughter and you know she has her life but she does make time for me. Take care. Hugs

HAPPY THANKSGIVING! I don't know how to private message on here, but you're welcome to call me. I live in the middle of the woods on 95 acres. Can't get around like I used to.

Sorry for the delay in answering. We have almost 32 acres. I always had wished to had 100 acres and have a house in the middle. When we first moved out here we had no neighbors now they're everywhere. No privacy and it's getting to where there little country left and if you don't live on a 100 acres or more then you will ha e neighbors. Always problems with their cattle getting on our property because they don't have respect for the fence and they want to come to our place since we have grain planted for ours and they don't feed theirs like they should. We have good fence and they tear it down and the way Texas law is we have to fix it not them. I've noticed all the old farmers that die and the kids that inherit the property they just sell and if it's a lot of acres it gets subdivided right now we have a couple subdivisions going up in town where this has happened.

I have another email address we can write back and forth. The phone would be great too but i have a hard time where i can talk without being heard.

I went to put my email address and it says not to put your real name address contact etc. I don't know if to make a new contact through this site.

I don't know how to either. Something about private messaging. I'll see if I can figure it out. Right now I'm in a lot of pain and trying to get things ready to go to AL. May take awhile. But I'll keep praying and once we figure it out, we can probably text, if you can do that. Hang in there!

Sorry again for the delay in answering. I'm sorry that your in so much pain i know how you feel. Your in my prayers too hun. I hope AL isn't to far as I know that's going to be hard on you. Have a safe trip. And yes we will get it figured out. Take care. :-)

This sounds similar to how I’ve been feeling lately. Pain started almost 7 years ago with just vaginal and perineum pain. Over the years it’s become progressively worse with the addition of low back, hip, and thigh pain. I’ve had pudendal nerve blocks that provided relief but then the pain eventually came back after a while. I’m currently in my 3rd round of PT and although it’s helping some, this low back/coccyx pain is out of this world. Can’t sit very long. I used to be able to find relief laying down or walking but even that aggravates it even more. Nerve meds don’t help me at all. I do find some temporary relief from Valium suppositories.

Marjun profile image
Marjun in reply to cnice

Hi cnice, Have you tried the ganglion nerve impar block? That actually helped the coccyx pain for me. Unfortunately it didn’t help with the other symptoms, but every little bit of relief is helps.

Look into that injection, that might be just what you need. Best of luck to you.

cnice profile image
cnice in reply to Marjun

I haven’t tried that one yet but thank you for the suggestion. I’m switching doctors so hopefully I will find relief soon.

Yes, they gave me a combo of valium, lidocaine and flexeril or baclofen. They keep the muscles from spasming. Botox shots have helped me so much, I no longer spasm and the bad pain has stopped. I still have some pain, but minor compared to where I started.

Which doctors are giving you injections? I’m having a hard time finding them in my current location when in FL doctors were easy to find.

I get them from Dr Childs in Birmingham, AL

Thank you!

Marjun profile image
Marjun in reply to cnice

I’m in California. My doctors at UCSF. A neuroradiologist performs the injections. There’s a lot of neuroradiologists there. It’s CT guided.

cnice profile image
cnice in reply to Marjun

Thank you!

I agree with Marjun, and if it helps, get radiofrequency ablation of ganglion nerve. It doesn't use steroids that cause bone damage.

My daughter had all of the above. Constant pain for over a year. Finally she had a huge pancreatic attack and went to the hospital. After four days in the hospital she went home, pain free. Now she can tell when she will have a flareup. She watches her diet closely and stays away from alcohol. Still don't understand any of this.

Marjun profile image
Marjun in reply to 1Ginge1

Hi 1Ginge1, What was given or done for your daughter at the hospital?

1Ginge1 profile image
1Ginge1 in reply to Marjun

She doesn't seem to know what they did. She was off eveything but clear liquids. I don't understand how just that would take away the constant pain she had. She saw every kind of Dr. They gave her laxatives, opiods, stool softeners, anxiety pills. She had colonoscopies, endoscopies, cat scans, rectal and vaginal tests. It was called IBS first, that is every Drs. first call. Then thickening of the large bowel, then pelvic floor neuralgia. All she knows is it took a pancreatic attack to stop it. Go figure. I sure hope you find help.

ppdassociation.org/?fbclid=...

This treatment cured all my pelvic pain I was at the end of my rope ready to give up on life .

It’s a mindbody Illness and you can retrain your brain xx

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