Feeling discouraged:(

[anne77]

I am new here, and I was diagnosed with Levator Syndrome in August 2015. I am 57 years old and I have seen several specialists and have had many tests done. I am currently getting treatment with a physical therapist ( every week for over 2 months) and am trying to control the pain with suppositories prescribed by a Urogynecologist. I am getting minimal relief and am feeling very discouraged and depressed. Has anyone had success with "trigger point" injections or botox injections?

[Alyssa5]

Anne,

I was diagnosed with pelvic floor dysfunction (tight pelvic floor) and I had pain with bowel movement and I believe the Levantor and muscle was involved; I tried physical therapy for 4 months with no improvement and then had Botox and the muscles became relaxed. Pain during bowel movement went away. I would suggest that you get them to find out if that is your issue. Let me know if you have any other questions. Best

[anne77 in reply to Alyssa5]

Alyssa5,

Thanks so much for your post! What type of doctor did your botox injections? How many have you had and how often? Did your insurance cover this? Are you in the US--if so what state? Appreciate your suggestions I am glad you found relief!

[Alyssa5 in reply to anne77]

A pelvic pain specialist did it through my insurance (Kaiser permanente) in San Francisco Ca (USA). My insurance covered it and my copay was about $100 dollars. I only had them done twice. I don't remember how many ccs were injected but the procedure was not bad at all because I was under sedation. Oh I forgot to mention that I also had the sphincter injected and that was done in a doctors office; that one was a little painful but it the pain subsides within minutes after the injection.

[Karen1954 in reply to Alyssa5]

Hi Alyssa!!! How long did it take for the Botox to work? I had it done four weeks ago and am hoping it kicks in soon!! I have bowel issues too so this all sucks!!!!

[Alyssa5 in reply to Karen1954]

It took about 3-4 weeks for its full effect for me.

[Inspire-me]

I know that it is easy to feel frustrated and discouraged when you are in pain all the time. I try to take one day at a time, and find benefit from talking about it with a psychologist. A problem shared, is a problem halved, well not quite but it helps!

I hope that today is a little better for you.

[anne77 in reply to Inspire-me]

Thank you for your encouragement! I have had good experiences throughout my life talking with psychologists! I moved recently, so I will have to do a little research!

[Alyssa5 in reply to Inspire-me]

I have also spoke to a pain psychologist from the pain psychology center in Los Angeles California

[Karen1954]

Hi Anne!!!! I know exactly how u feel!!! I was diagnosed with Levator ani in April of 2015 and have tried everything!!!! I've been seeing a pelvic floor therapist for almost a year!!! It has gotten a little better with her exercises but still in a lot of pain. I also have ibs which makes it worse. I have seen colorectal and dietician and nutritionist and acupuncture and hypnotherapy and psychologist and most recently uro-gyne. Just had Botox four weeks ago and waiting for it to kick in as I was told it takes 4-6 weeks!!! It damn well better hurry up!!! Now I have problems with hemorrhoids which put sooo much pressure in the rectum it is unbearable! My colorectal said the hemorrhoid isn't bad enough. Well it's huge in the morning!!!! I know your frustration believe me!!! Btw I'm 62! I have been on permanent disability for four years due to the ibs and degenerative disk disease. I take norco for that but it also helps with the severe butt pain. I wouldn't survive without it!!!! I also take chlorzoxozone and baclofen for the Levator. I keep praying to god everyday to help me with this as sometimes I am house bound and sit on a heating pad all day!!! I can't enjoy my grandkids like I want and feel like a bad mom and wife and grandmother! !! So depressing!!!! No one understands unless they have it!!! I found out my puborectalis muscle isn't working so I have to manually evacuate which isn't fun!!!! It really sucks!!! I just want to be normal! I'm sure u do too!!!! I wish u nothing but luck!!!! Stick with the pelvic floor specialist!!!! Oh I also use a therawand to help! Please keep in touch so we can share our misery!!! Lol. Really not funny but what can we do!!! Take care!!!!

[anne77 in reply to Karen1954]

Karen, thank you so much for sharing! This journey has been a long one for me as well...I have seen several specialists: Colorectal, GI, Gynecologist, Urogynecologists (3), and a Neurosurgeon to see if my slightly bulging disc in my lower lumbar was contributing to the levator syndrome (it was not). The 3 Urogynecologists all had differing opinions (so frustrating!), but my current one works in conjunction with my pelvic floor therapist, who I feel is on the right track, but my pain is only slightly managed--it never goes away. I am getting PT every week and am using rectal suppositories which are composed of:Gabapentin, Amitriptyline, Benzocaine and Diazepam. If I use a full one, they completely knock me out, so it was suggested that I cut them in half. That is better, but it really only takes the edge off of my pain This whole thing started when I going through a bitter divorce and I bought a bike b/c I thought it would be a great way to exercise and be with friends who enjoyed riding. Well after about a week, I felt like I was sitting on golfballs and I thought I might have an internal hemorrhoid or blockage. I had neither, but was EVENTUALLY diagnosed after nearly everything else had been ruled out. I found out that I do have a moderately prolapsed rectocele, and it is difficult for me to evacuate completely. I take Miralax and fiber supplements daily, but it seems like if I can't have a bm daily, or have too many, it is the same outcome (rectal pain). At times when it is really flared up, the pain is so intense that it feels like someone is shoving a sword up my rear! On occasion, the pain will swing around to my lower pelvic area, and I have sought medical help thinking it was a urinary tract infection. My PT has said that my pain is coming from Puborectus muscle and the Tranverse Perineal Muscle. She does internal stretches, dry needling and biofeedback. I was doing the stim unit, but it seemed to make it worse, so I stopped. I can't imagine having a hemorrhoid in addition to just having LAS--you poor thing! I was prescribed Linzess (GI), but that made my condition flare. What type of doctor did the botox injections? Did your insurance cover any of the costs? I hope it kicks in for you soon! I was actually going to research that avenue as well if the PT doesn't give me more relief. I live in Greenville, SC, so I would probably have to travel to a bigger city where they do those procedures routinely? I am a mother of 3 grown children and 2 grandchildren who live out of town. Even though I ordered special cushions to sit on in the car, it is hard to drive for 6 hrs. and then put on my "happy face"! This is debilitating as you well know, and at a certain point, I know my friends and family probably don't want to hear me complain, so my new response is just "some days are better than others" (even if they aren't). You are so right--unless someone has experienced this, they have NO earthly idea what it is like. I pray daily and I certainly will add you to my prayer list I would love to chat sometime if you would like Take care, Karen--"this too shall pass"

[Karen1954 in reply to anne77]

Hi Anne!!! So nice to hear from u so quick!!! I had my Botox done in my uro-gynes office. Didn't hurt at all. Was given the most u could 200cc in each shot which was five. My Medicare paid for it as I am on permanent disability as I mentioned. Possibly could have to have the Botox again in a couple of months. My therapist seems to think I'm getting better after doing internal exams in the vagina and rectum. So much fun!!!! Not!!! Lol. I told her I couldn't feel much down there but I guess all is well. I too have incomplete bowel movements. Have tried miralax and milk of magnesia but I don't eliminate totally and hate the burning I feel from the stool. It hurts like hell! The last two days have been ok but the hemorrhoid burns like crazy and I feel like I'm sitting on a golf ball which is soooo uncomfortable!!!!! I have been on linzess for three years for my ibs. It seems to work. Yeah I know my family is tired of hearing of my pain but oh well. I feel like I am alone. My daughter is great and so is my mom but she calls me negative nelly. Well u try having burning and pounding butt pain everyday for a couple of years and u tell me how u would feel. I just want to be normal again down there. What a novel concept. Lol. I hope u find some relief soon. My pelvic floor therapist suggested I try emdr therapy which is suppose to help rather quickly. We will see. Have been researching this. Do take care of yourself and I'd love to talk sometime. I'm sorry u r going through this too. Two peas in a pod!!!

[anne77 in reply to Karen1954]

Karen, maybe a GI can prescribe a different medication rather than Linzess. In the very short time I took it, my bowel movements felt like acid passing through--horrible burning! I can't help but wonder if this is what has caused your hemorrhoid?? I also wanted to share a website which you might check out. It is listentoyourgut.com

Jini has covered nearly every topic and she has some you tube videos which are very helpful!

[Karen1954 in reply to anne77]

Hi Anne!!! So nice to see your reply!!! Makes my day!!!! My gut has gotten better but my puborectalis muscle just isn't working!!! My problem is that I'm soooo sensitive in my rectum that I can feel when stool is there and its uncomfortable!!!!!! I need to try and not think about it but that's easier said than done!!! Was told to go for a walk but that's hard too!!!! I'm sorry for your pain but it's nice to have someone to talk to. I pray every day that we can feel better soon. I don't want to live the rest of my life like this!!! I want to play with my grandkids and have them over but that doesn't happen much!!!! I go and visit them like twice a week since we live so close but it's not as much as I would like!!!! I keep saying we will get better. I have to believe that!!!! I'm here for u always!!!!

[pieper in reply to anne77]

have you ever tried taking valium. it sounds like your pain came on in a very stressful time, as did mine. now i can manage with a little valium,, but i did have surgery last year as well with Dr. Dellon,

[anne77 in reply to pieper]

Are you still doing well after the surgery? I wish Dr. Dellon took insurance I do use compounded Valium suppositories and the do relax those muscles!

[Alyssa5]

I have it done twice and I felt it kick in about week 3. I had it done by pelvic pan doctor under sedation. In San Francisco Ca. Once all my pelvic floor muscles we're relaxed and I still had pain, we determined that the pain is coming from the central nervous system (brain/ spinal cord). It is sending the wrong signal to the area. I am working on calming down the central nervous system but it is not easy.

[Karen1954 in reply to Alyssa5]

How much time in between injections? How r u calming down the central nervous system? I did therapy for a few months but didn't help a whole lot. Was told to try emdr therapy so looking into it. We will see. Hope the Botox kicks in soon. It would be nice to feel normal again. Maybe someday!!! Do take care and keep me posted on how u feel.

[kalecolbe12 in reply to Alyssa5]

Hello...I wanted to try to connect with someone the same condition I have which is pelvic floor dysfunction and laveda and I I'm just saw your post and the other ladies post I'm hoping to be able to communicate and see how you are now after 2 years...don't know if you're still on this site couldn't find one with more current postsI am taking cyclobenzaprine which is a muscle relaxer it seems to calm down the spasms but I can't take it for longer than a month at a time and then the pelvic floor physical therapy seems to be helping one week and irritating the next....if you are still on here would you please just send me a reply I'd appreciate it thank you, Audrey

[Alyssa5]

I think it was 3 months in between injections.. I don't quite remember. I finished a chronic pain course that teaches patients to calm down the central nervous system by meditations, doing yoga, tai chi, feldencreis., I have to be honest; it has not been easy. There is chronic pelvic pain the mind body connection (Facebook group) that goes more in detail. Others say that chronic pain is caused by repressed emotions.

[Karen1954 in reply to Alyssa5]

Hi Alyssa!! I read about tension myositis syndrome that sounds like what u r talking about. Nothing has worked for me regarding that. I do pelvic floor exercises which help but my problem is that my puborectalis muscle won't relax! So I have a hard time having a bowel movement. I can feel stool inside so I have to manually evacuate which causes more problems. It's been four weeks today since I had the Botox. Hope it kicks in soon!!!!! Just want to poop normally!!!!! Thank u for all the information. There's also a book by Howard schubiner that talks about unlearning your pain. Didn't help much but oh well. Do take care and please keep in touch!!!!

[Alyssa5 in reply to Karen1954]

Yes that is it.. I know that there is nothing physically wrong in the pelvic area. At least for me.

[kalecolbe12 in reply to Karen1954]

hi Karen I just contacted Alyssa also I'm just trying to find people I can talk to about this since your posts were two years ago I don't know if you're still on here but I have the same things you guys have I am on cyclobenzaprine which helps and I am doing physical therapy but no answers really so far... I would appreciate a reply just to let me know you're still out there and how things are now thank you

[downtowntiger]

So sorry to hear of your ordeal....hugs to you. I have been diagnosed with severe overactive bladder caused by transvaginal mesh, pelvic floor dysfunction, degenerative disks in my lower spine and IBS. I have had Botox in my pelvic floor and my bladder, plus steroid injections in my spine. The first round of Botox in my bladder truly helped but necessitated catheters which was horrific. My IBS has resolved itself after I got hormone pellets implanted! Who would've guessed that? Ice works on me better than heat. I, too, went to pelvic floor physical therapy for a year. It would help at the time and then, not much help. For the expense, I couldn't justify it. My urogynecologist did the bladder Botox and a gyn specialist did the pelvic floor injections. A pain doc did the spinal injections. The pain Doctor mentioned a hypo gastric pelvic block for continued pelvic pain, but I haven't had one yet. Don't give up! I battle depression all the time. I pray a lot!

[anne77 in reply to downtowntiger]

Thank you so much, and good luck to you! I hope you find answers to alleviate your pelvic pain Hang in there and keep praying God bless.

[downtowntiger]

Forgot to add-my insurance completely covers this all. I am blessed. I have the procedures done in Lubbock, Amarillo and Dallas.

[rugby13]

i suffer from levator syndrome , had the botox no luck i have just had an neurostimulator implant fitted early days yet things are looking good up to now

[anne77 in reply to rugby13]

What type of doctor did the botox injections? I am not familiar with the neurostimulator implant--what type of doctor did this for you? Thanks for sharing

[rugby13 in reply to anne77]

I know exactly what you are going through, a colorectal surgeon did the botox also tried biofeedback to no avail, have you tried using peristeen irrigation system to relieve the pressure in the rectum? the implant is a sacral nerve stimulator electronic implant made by a company called Medtronic , if you need any more information please ask had nine years of this problem

[anne77 in reply to rugby13]

Thanks so much., I will look into these recommendations! I appreciate your input sooo much

[rugby13 in reply to anne77]

Good Luck don't forget just ask for more info

[kalecolbe12 in reply to rugby13]

How did the nuerostim implant work out?did colorectal doc do it?

[prinx]

There are some states where you can use

Medical marijuana for chronic pain.

I have not used it myself so I do not have personal experience to give you.

Would appreciate anyone else commenting.

Prinx

[Konagirl60]

Anne, sorry you are suffering. Intractable pain IS exhausting.

Have you had a tubal ligation with clips and/ or have you had any female surgery with mesh?

Just wondering if you’re levator ani muscles are having issues because of a foreign object migrating near there? Happened to me.....