Need advice and help with levator ani syndrome diagnosis

Depressed and frustrated with diagnosis

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Need advice and help with levator ani syndrome diagnosis

Postby Luka » 06 Sep 2016, 11:42

Hello everyone,

As you may have read in my diary on the forum, I recently went through an exam under anesthesia to diagnosis and possibly surgically correct an anal fissure that I thought I had internally for the past 4 years. My CRS could not find anything (he said everything looked healthy and normal) and diagnosed me with levator ani syndrome. He told me it is very hard to treat. : ( He said I could take muscle relaxers or antidepressants for it (I am already on Prozac, but I know that isn't the kind of antidepressant they use to treat this) and physical therapy.

My question is: who do I go to for help with this? I have pretty basic health insurance and there are no pelvic floor specialists in their system (just physical therapists for sports and back injuries). I don't think my CRS can help me if there is no fissure and I don't know who to see for this. A gynecologist? My GP? I know there are pelvic floor specialists in the area (I live in the San Francisco bay area and there are a couple of SF and one in Berkeley), but they are very expensive and I am low on money. I know my health insurance will not cover them because they are out-of-network and not in my county.

I am so lost and frustrated right now. I don't even know if I'll get any replies to this, since this part of the forum isn't very active (last post was in July), but I figured I'd give it a try. Any help with this would be very appreciated. I am in a lot of pain and don't know what to do. : (
January 2013 - Diagnosed with fissure. Eventually turned chronic.
History of IBS and anxiety disorder, along with fear of using bathrooms other than my own caused it.
Tried Diltiazem, but eventually developed a rash.
LIS surgery scheduled August 26th.
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Re: Need advice and help with levator ani syndrome diagnosis

Postby fuzzybritches » 06 Sep 2016, 22:03

Hi Luka:

I might be able to offer you some help and advice. I was diagnosed with LAS in 2011. What are your symptoms?
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Re: Need advice and help with levator ani syndrome diagnosis

Postby Luka » 08 Sep 2016, 12:23

Hi fuzzybritches,

My symptoms vary with how my bowel movements are (which range from very soft and almost muddy to a little on the harder side). I have IBS and am stressed out a lot, so that complicates things and pretty much prevents me from getting consistent stools lately. : ( I will get burning after bowel movements (rarely during BMs) that lasts anywhere from minutes to hours after I'm done using the bathroom. The muscles ache and burn on both sides of my anus/rectum. The area that hurts the most is on my right side. The pain radiates down my legs (even to my feet) and sometimes down my arms. It also radiates up my back (especially lower and middle back) and into my vaginal area. The pain doesn't always radiate and it just depends on how my BM goes. Things seem to let up in the evening. It seems like when I get a lot of gas, the muscles relax and I don't feel as bad of pain. The pain I get ranges from burning to intense throbbing and comes in waves sometimes (like the muscle feels like it's tightening up and "pulling" from inside my anus/rectum).

I've always had trouble relaxing during BMs. I have a fear of using the bathroom outside of my house that I've had ever since I was a kid. I just cannot relax enough to have a BM anywhere else except my own private bathroom (unless it's an unusual circumstance where I have bad diarrhea away from home). It's like the muscles down there just lock up and I physically cannot use the bathroom. : ( I have no problems with urination at all, either at home or away from home. It's just BMs. I'm sure this was a major cause of my issue now and I do realize I need therapy for it. It makes going on vacation impossible for me, which causes me a lot of grief since I would love to travel.

I also have never been able to have sex. : ( I have never been able to relax the vaginal muscles enough to allow penetration. It's always been upsetting to me, but I've learned to live with that part. It's the pain from the muscle spams in my anus/rectum that are ruining my life.

Any advice you could give would be great. Who did you see for your LAS diagnosis and which treatments did you get?
January 2013 - Diagnosed with fissure. Eventually turned chronic.
History of IBS and anxiety disorder, along with fear of using bathrooms other than my own caused it.
Tried Diltiazem, but eventually developed a rash.
LIS surgery scheduled August 26th.
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Re: Need advice and help with levator ani syndrome diagnosis

Postby Luka » 18 Sep 2016, 09:32

Can anyone help me with this? I'm still having issues and don't know what kind of doctor to see about this. : ( Still struggling and have been really depressed, which definitely isn't helping anything.
January 2013 - Diagnosed with fissure. Eventually turned chronic.
History of IBS and anxiety disorder, along with fear of using bathrooms other than my own caused it.
Tried Diltiazem, but eventually developed a rash.
LIS surgery scheduled August 26th.
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Re: Need advice and help with levator ani syndrome diagnosis

Postby Savaici » 19 Sep 2016, 20:50

So difficult to know what to suggest. If it was me, I would research the hell out of it for doctors in your area, and the condition on the net. Also, if you're on Facebook, I would look for a group for this ( I know there was one for Pudendal Neuralgia, which I thought I had, at one stage, until I started doing dilation). I don't know what to suggest about your basic insurance, but I would just find someone first and then think about that.

I had so many Drs tell me I had this and I had that...I just had in the end (after a lot of suffering) to sort it out for myself. Sorry that you are depressed (can understand that - been there) but you just need to push yourself that little bit. Sorry I can't be of more help. You can read some of my posts and see what hell I went through. It does get better if you find what works for you.
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Re: Need advice and help with levator ani syndrome diagnosis

Postby Luka » 26 Sep 2016, 12:38

Thanks for your reply, Savaici. Sorry for getting back to you so late. I'm having a lot going on in my life right now and have been incredibly depressed and stressed out, which is contributing to my pain even more.

I will take your advice and research doctors and see what's available on Facebook groups. I highly, highly doubt my insurance will cover anyone this specialized, though. I think I will visit my GP first and see what she says. I'm sure she knows nothing about this condition, though. : ( Most doctors don't seem to.

I am sorry you had to go through so much hell. I have been through a hellish time myself, so I understand how it can be. Mainly I'm just frustrated right now and depressed. Having lots of stressful things going on my life right now doesn't help, either.

I hope you are doing well and thank you for the response.
January 2013 - Diagnosed with fissure. Eventually turned chronic.
History of IBS and anxiety disorder, along with fear of using bathrooms other than my own caused it.
Tried Diltiazem, but eventually developed a rash.
LIS surgery scheduled August 26th.
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Re: Need advice and help with levator ani syndrome diagnosis

Postby Alfaman147 » 14 Nov 2016, 12:31

Hello. I can give you some advice but first I will tell you my story. About 6 years ago during a very stressful time I started having this constant pressure or ache in my anus. It was there all day every day. The only rest bite I had from it was when I was asleep or after having a few beers. Having seen hundreds of doctors and had scans and all sorts I can tell you that it is all a mind body condition. Stress and simply obsessing over it makes the muscles in our anus clench. I know 100 percent through experience. I have been through everything to try and get rid of it. But I can have weeks or months or even years without it. I kind of forget it and move on and it just fizzles out. It is an involuntary clenching. I am at the moment suffering with it again and it is hard to focus on anything else. But constantly thinking about it just makes it worse. I find that if I just touch the anal entry it eases off and if I put a finger inside it is a complete relief. It is just muscle tension. One thing that can help is pelvic floor physical therapy. The internal muscles are massaged and can release alot of tension. I am terrible for trying something once or twice and giving up. But I went back to thing he docs today and asked for some pain relief. He said don't obsess about pain relief. It just keeps the cycle in my mind going. He said just take paracetamol and go back to the pelvic therapist. I also am suffering from depression and anxiety because of this problem but I know it just feeds it further. The fact it goes at night and after a few drinks is proof for me that it is muscle tension. I would advise looking for a pelvic floor physical therapist. I would advise stop looking on the Internet or reading books. You just feed it more. And try and not let it beat you. It feels like there is no way out but I am proof there is. I have beaten it about 4 times before and it's my own fault it comes back. Try sitting on a tennis ball. Or try inserting a finger in or just touching the opening and see if it goes away.
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Re: Need advice and help with levator ani syndrome diagnosis

Postby Alfaman147 » 14 Nov 2016, 12:38

Also any discomfort that is an ache or pressure is muscular. Sharp stabbing pains are nerve pains. But the tightness muscles can pinch the nerves. But I assure you that in a round about way you are doing it to yourself. That's not me having a go at you because I do the same. Anxiety and stress build up in the pelvic muscles. It's a subconscious guarding or bracing. Basically my symptom is a pressure and ache or feels like i have a ball in my ass. The discomfort feels like it's more towards the end of the rectum or in my anus. Some say levator ani syndrome is felt higher up. But levator ani, proctalgia fujax are all caused by pelvic muscles in spasm. Don't obsess like I do but Google pelvic floor physio therapy
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Re: Need advice and help with levator ani syndrome diagnosis

Postby Alfaman147 » 14 Nov 2016, 12:39

Also you mention about the sex thing. That is because of tight pelvic floor muscles. It's all related
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