Twelve years ago I was diagnosed with levator ani syndrome with excruciating pain. After seeing 19 doctors over 2 years, and trying botox injections, caudal epidural, acupuncture treatments, cold laser treatment, electric galvanic stimulation, cortisone shots, many kinds of pain medication and nerve pain medication, specialized physical therapy, & 9 nerve blocks, not much helped. I learned to live with it over the next 10 years by taking gabapentin, nortriptyline, and trazadone at night for pain and sleep, and in the daytime sitting on a cushion with a hole in the back (from Relax the Back), as my job was sitting all day. I took Tramadol in the morning, but by mid-afternoon, the pain returned. The nerve medications help considerably, but I couldn't take them in the daytime, as they cause me to have blurred vision, brain fog, and dizziness.
However, about 3 weeks ago, the excruciating pain that began twelve years ago has returned (and nothing helps), and I was in bed with the heating pad for over a week until I could get in to see my colon doctor (heating pad on high helps to take your mind off the pain, although it does sometimes cause blisters, a minor side effect). He prescribed Baclofen, which helps with the pain, and since I'm retired now, I can take it during the day, even though it gives me the blurred vision, brain fog, and dizziness. ANYTHING is better than the excruciating pain 24/7.
My doctor referred me to a physical therapist, who studied under the PT I had 10 years ago. She specializes in the pelvic floor/levator pain (internal physical therapy, TENS, dry needle therapy, wand, and exercises). I've had 3 sessions with her, and I'm also trying to get in to see a doctor (who my physical therapist recommended) specializing in pelvic pain/pelvic dysfunction. I just want to know if there are other things anyone has tried that I haven't already tried. I can't go anywhere that involves sitting, and I can't live the rest of my life with the pain and the side effects of the nerve medications.
TF from TX; F71
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Well it has taken 8 months once a week with pelvic floor therapist and cyclobenzaprine muscle relaxer which doesn't make me drowsy so I'm good with it during the day at work.... And stretches and breathing she showed me but I am about 80% better....of course mine is the inferior rectal nerve of the Levator ani and so sometimes it flares after a bowel movement but I put lidocaine in there and I also have compounded muscle relaxer lidocaine to put in now and again I just a good couple of ibuprofen really helps.... I have gabapentin in case I need it which I haven't really tried yet because I'm trying not to use anything else... Some people have tried tibial nerve stimulation and cryoblation...but I say stick with PT because it would really help you but it takes a few months and I couldn't take internal PT so I have pudental nerve glides on the exterior and also mobilization of sacral area
for some reason I can't get your website.. can you help me with this and send me a testimonial or something? I'm trying to understand what this is about...thankyou
Boy, do I understand this pain you are having! It was just my 10th anniversary for what only one doctor described this problem as levator ani. Just like you, I went through dozens of treatments. Now, I have to say I am 80% less pain, and who knows why? I have been getting injections two or three times a year. Blind, thru vagina and while they don’t seem to help at first, about 3 weeks later I can sit with minimal pain. I guess I can’t give you any suggestions except please be kind to yourself. Do what you need to do and pray for the best. My question is why haven’t doctors, especially female doctors, come up with new treatments or at least diagnostics?
There are tens of thousands of us suffering with pelvic pain. Why isn’t it being addressed like other afflictions such as cancer, disease etc. God bless you💜
I always wondered if the levator pain was caused from my having a 9 lb. 7 oz baby. I'm a small boned person weighing 115 lbs. Most of the previous doctors said the two were not related, but now that I'm finding research that does point to that, as pushing during birth puts stress on the levator and other muscles. Obviously, the male colon rectal doctor was not familiar or didn't know that the levator muscle goes from the back to the front.
I do have metal, but it was 2 years after I had the pain the first time. I was given a pain medication, which made me dizzy and "out of it," which caused me to fall and break my 2 bones in my lower arm, so that it not what caused the original levator pain, but might play a part in this recent return of the bad pain.
Thanks for you insights! It does help to know there are other people out there that have gone through the same thing. This wasn't available my first go round 12 years ago.
Yes, I've wondered that for 12 years. My colon doctor thinks it is because this is a more rare condition, and research is done only where there is a large number of people. I think medications are only researched when pharmacies can make the most money. I didn't realize back then that there were other people who had the same pain. I'll bet if some doctors had this much pain, there would be research on it! After 2 years of excruciating pain, it was actually my OB doctor that referred me to the specialist physical therapist who did the internal PT, but then she left the state, leaving me with no other options, so I lived with less pain for 10 more years. I don't know which thing lessened my passion, or if all procedures together did.
I actually said something like that to different doctors that said they could not help me. I asked my general practitioner what he would do if he couldn’t sit all day. He said I guess I would just keep looking and looking for doctors that might help! So frustrating! I’m not trying to brag but I did make a six hour car ride last weekend with minimal pain! I have been taking CBD full spectrum oil everyday for about a month now – maybe give that a try?
So do you think the CBD oil is taking away your pain and have you had any other pelvic floor PT or any other treatments medications ?I'm just curious I may try the CBD oil
It’s got to be that because I’ve been taking it for five weeks and I drove for 6 hrs with no pain! A little tightness, but popped an ibuprofen and when I got to my destination I realized it was the first time in 10 years that I didn’t have sitting pain!
My gynecologist did recommend a uro/gynecologist who started these injections. We think it is my Pudendal nerve, but she couldn’t bill it as such because insurance wouldn’t accept that diagnosis! So, it’s called levator-ani syndrome. I also had a hysterectomy 25 years ago and I’ve read that they cut those nerves and muscles around there. Who knows if they left a clamp or scar tissue was forming? Believe me I’ve done a lot of research. It helps to know others are going through the same thing, but we want relief, right?
Yes, I never heard it called Levator ani syndrome until I started researching for my recent recurrence of the pain. 12 yrs ago it was called levator muscle syndrome, but it is also nerve pain, so the new name is more correct.
All my 9 nerve blocks the first time were Ganglion of Impar Blocks, but recently I've read a lot of people have had the Pudential Nerve Blocks. If I get in to see this doctor who specializes in pelvic pain, I'm going to see if that is a possibility for me. The impar blocks didn't last but a few days at most or not at all, and insurance stopped paying for them.
Same thing when my colon rectal doctor did the "fissurectomy," he actually cut the levator muscle, but there was no insurance code for the levator, so he called it fissurectomy. It must be rare enough that there was no insurance code then, and I guess, still to this day.
When you are in such extreme pain 24/7, you will try anything, though. How do you know you are getting a good kind of CBD, though. I've heard bad things about some of them, and stores are popping up everywhere. I wouldn't know which ones are to be trusted.
To find a good cbd product. Go to LEAFLY online. It covers the basics and more of info you need to buy a quality product. Like knowing to look at the products certificate of analysis. Which terpenes in cbd help different conditions. How to do microdosing , etc. Should you buy full spectrum, broad spectrum, or isolate. You will pay more but you will be getting good stuff and not just cheap oil. The site even gives you recs for reputable companies.
Uro/gynocologist. Get a female and ask if they are experienced in this area. And I found livegreen hemp.com online has the whole plant which is supposed to be better than the hemp seed oil. Look soon, have a big sale going on. 1/2 price. I’m going to try the gummies next.
I want to try the gummies because I'm not good with oils my face usually will break out please let me know what you think of the gummies and I'm going to look at that website thank you
I looked at the gummies on the website. They come from 750 mg to 3000 mg. How much of the oil do you take, and what would that be equal to the gummies?
I used Baclofen but it just helps for a short period of time. I also did not feel well on it. If you find a PT start with floor exercises first until you build strength then move up to standing exercises. I have hypermobile joints. So, I was overextending during exercises. Now I do closed chain exercises. If you go swimming and put a noodle under your pelvis to float you can swim without pelvic pain. This would help calm your nervous system. The water is relaxing. I use a snorkel and swim in a lane. I may look rediculous but it’s only 30 minutes looking rediculous.Also, before any exercise lay down on a soft Icepack in the lumbar area to get the inflammation down around the discs. At least 10 minutes not more than 15 min, a few times a day. The idea is to minimize impact during the day to the nerves. In the afternoon laying flat on back in bed doing abdominal breathing or a couple times a day meditation . This will also calm your nervous system down and you won’t tighten your muscles. It’s time to train your body to relax as much as possible while you strengthen. It may be weak muscles like the gluteus medius causing the problem but you can’t strengthen if your nervous system is out of wack and in fight or flight mode. Try not to sit more than 20 minutes at a time. As you get stronger you will be able to sit longer. I have Obus ultra Forme for my chair support while driving which helps my right leg where I had sciatica. This gives lumbar support. I have a vertical roll pillow when sitting at work for lumbar support. At one point all my muscles were in spasm. It’s getting better slowly. I think some muscles overcompensate for the weak ones. I started with breathing and nerve flossing exercises with my physiotherapist. Then I had prolotherapy on ligament, si joint and lumbar area, but ultimately a microdiscectomy this past September. I am a couple months away from being my strongest. I tweak my day to day plans based on how I feel as to not tick off any nerves.
I am still struggling with undiagnosed pelvic pain which frustratingly disappeared after Xmas when I had the flu and was in bed for 2 weeks . I felt amazing for the first two weeks in Jan : began to exercise as I thought I was finally back to normal and the damn pain came back again???? I am convinced that it is nerve related at this stage and my latest Idea is trying a cold shower every morning - may be a crazy idea but read it’s good for the parasympathetic nerve system if you can bear it . It may do something to the nerves and help - I don’t know - it’s torture but I’m willing to try as like a lot of people on this forum I have tried EVERYTHING. Can only do 10 seconds at the moment and am hoping to build that up. Anything is worth a try at this stage though seems very low tech!
I am in Ireland and have heard of a clinic in the Netherlands that have great success with undiagnosed pelvic pain- it is a 3 day programme and the next one is available in July. I am seriously considering it - it’s the end of the road for me as I have tried every damn thing in the book.
it's really strange that you said that it went away when you had the flu because my pain went away when I had the flu too I'm trying to figure out the connection
You said you had the flu and in bed for 2 weeks. Laying down you will relax the muscles and nerves. When you stand or sit you need support for weak muscles probably spasming around nerves. Suggest nerve flossing and abdominal breathing with a physiotherapist. Then find an awesome physical therapist. Put a soft icepack under your lumbar and lay down for 10 minutes and then start the stretching. The ice will reduce the inflammation around the discs and joints.
Yes - I definitely agree that lying down for 2 weeks was the reason the pain abated. Unfortunately I have to work and don’t have the luxury of that - am trying to lie down as much as I can but it never seems long enough . Have very good PT who I have been attending for 2 years . One thing that does help is using tape to tape the area and take pressure off the coccyx . Sorry for graphic details but if you apply the tape to pull apart the buttocks it really helps. Unfortunately that tape damages the skin so I can only have it on a few days a week . I have tried Physio shorts which don’t perform same function . I could set up a shop with all the gizmos i have bought to try and solve this problem .!
When I started physical therapy after my disc surgery I started laying down pulling knees to chest 30 sec 2 x. Then putting towel behind knee of one leg pulling toward chest easy 30 sec 2 x each side. Then put one knee over other while laying down and pull towards chest 30 sec 2x.
Then bent leg and other ankle over knee push knee away lightly 3sec then push knee against hand 3 sec and back away again 3sec. Then with ankle over knee left foot off floor and push leg against knee. The idea is the nerves glide while doing these exercises. Find someone who does these exercises. I had someone using a belt around her waist and doing some exercises with my legs that were not effective. Then I progressed using a roller. I lay on the roller an unstable surface pressing my spine into roller lifting legs to 90 degrees like table top then dropping one toe towards ground holding for ten and alternating legs. Making sure your are tucked and spine to roller using your transabdominous. My right side was weak so I really had to concentrate keeping my back flat and belly button to spine not letting my right side rise while my left toe dropped to floor. Then I started using a stability ball. Laying on the ball with feet against the wall ticking and belly button to spine arms together overhead for 20 sec 3x. Then putting one hand on the ball the other overhead stretching back and forth for ten. Laying on the ball tuck and belly button to spine bringing hands out in front on the floor and using your abs to bring your legs in toward your stomach staying stable . Find someone who can do these stability exercises. I wasted a lot of time with other PT’s.
I can work 40 hours now with some difficulty. I fall back on my exercises when I have difficulty using an icepack to reduce inflammation. I do not sit for more than 20 min. I get up move around and then sit again. Set your watch. During the day I do abdominal breathing. There are some that say this does not work. They are wrong. The muscle fibers need to move smoothly. We have disrupted the smoothness because of trauma. So are muscles are abruptly moving or cautiously moving.sit and breathe in deeply watching your stomach expand then breath out down towards your chest and see how the muscle work smoothly. We need to do this often. This practice will relax the muscles around the nerves.
I suffered from this for over 10 years and am now basically cured. Weeks pass now where I don’t even think about pelvic pain. The answer, for me, was the wise Anderson workshop. I attended over a year and half ago and it’s really changed my life. I can go on into more detail but I would strongly consider it. Besides the physical therapy, which is painful, it’s fairly relaxing time. The majority of the program is learning how to use your mind to train your pelvic floor muscles to relax and not constantly be tense. It’s also about eliminating the catastrophic thinking the pain has caused. The pain is very real but you have more control over it than you realize.
Would you mind saying how much that workshop cost and if you were given materials to take with you to practice at home? I have read the book and am very interested in the workshop. Thank you very much.
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