Desperate due to chronic/disabling anal pain!

Hello everyone!

Im a 27 year old female from Los Angeles and just wanted to share my story. Im really hopeful I will receive some kind of support from members who suffered from a similar condition who can shed some light on this. Im simply feeling at my wits ends and looking for any type of reassurance for hope. I been endlessly searching for answers on the net for over 4 years now and after exhausting amount of research I stumbled across this place. I'am really starting to believe my issue is connected to TMS at this point but of course like many I have doubts at the structural side of things due to my situation. I'am really desperate for not even a cure at this point but at least someway to manage my pain to be able to return to somewhat a normal life. This condition has completely left be disabled. I cant work, complete day to day activities or simply just function. The depression and mood swings as a result of the chronic pain have consumed me and led to impacting close relationships. It's difficult for people to understand what you are going through when you have a throbbing pain in your butt all day with no relief from anything. The worse thing is waking up every morning and wondering if it will ever end?

I will give you guys a fast forward version into my journey since it is too complex and long to get into details. My problems started over 4 years ago. After being constipated for a few days I noticed blood spotting on the toilet paper and started to have sharp pains in my rectum during bowl movements. After a quick search on google my symptoms seemed to be associated with an anal fissure. When the bleeding continued even after my bowel movements went to normal I visited a colorectal surgeon. After a rectal exam that seemed normal I had a colonoscopy which came back normal as well. The doctor did not locate any fissures or hemorrhoids that can be causing the pain. He told me I have a first degree external hemorrhoids which cant be causing the symptoms Im describing (Almost everybody has a 1st degree hemorrhoid which is harmless) I visited this specialist for 6 months every two weeks. Every two weeks he did an anal exam and confirmed there was nothing there. In addition every 2 weeks he prescribed a new cream for a fissure to test out to see if it might help anyway. During this time I went through 6 different creams, all the typical ones that get prescribed. I did not get the slightest relief from anything including pain medication. All the typical recommendations were done such as adding fiber to my diet, taking stool softeners and suppositories. However, even with healthy bowels, the pain remained. The pain that started as only sharp stinging during bowel movement gradually became constant. There was deep, dull, burning pain inside my rectum during the entire day (worse with bowel movements) At this point I was having trouble sitting for more than 15 minutes and the only thing that gave a sense of relief was a heading pad or sitz bath. The Dr. did not have any more creams he can prescribe so he decided to do an MRI to rule out anything serious. MRI came back normal so he send me USC to be seen by another specialist.

By the time I got to be seen at USC it has been a year that I been in pain and bleeding during every bowel movement. He was the top colorectal surgeon in the department and he magically located a chronic anal fissure during my first rectal exam. He informed me since I have been suffering for so long, the only solution would be to go in for a surgery (Sphincterotomy) "This surgery is the suppose to be the easiest fix for a fissure with a 95% success rate" After my surgery the bleeding has finally stopped but the pain remained, getting worse by the day. The first few months of my follow up visits the surgeon concluded that the fissure has healed and he believed the pain is coming from the surgery incision site which didn't seem to be healing. He started using silver nitrate in the area to heal the wound. For the first time in over a year I felt my pain almost disappearing after he used the product. This made me think the fissure is healed now all we have to do is heal this wound and Ill be pain free. During my 3rd visit to him when the pain was getting worse again and I was desperate for my dose of nitrate, he informed me the incision site is all healed and Im good to go. Indeed, I was confused because the pain was still there but he stated he wasnt sure why I was still in pain. Another 6 months went by and I was in severe pain every single day despite my bowels being under control. My Dr recommend to try botox which I did, no result. All the crazy pain killers he prescribed me after the surgery did not even help the pain the slightest. He started to put me on anti anxiety medications to help relax the muscles in the area which did not help. Finally he gave up on my condition after 2 years and decided that Iam suffering from a pelvic floor dysfunction (ani levatore syndrome) He told me its a disabling condition that some people just have to live with. It has no cure or known cause and he already tried everything with no success. The last thing that was left was PT. I attended PT for pelvic floor for about 2 months with no relief in my symptoms.

Feeling at the end of my rope for the next 2 years following this I saw another 4 colorectal surgeons. None of them detected an anal fissure yet none concluded pelvic floor dysfunction either. They all had their opinions but nothing to fix the issue besides everything I already tried. I had another 40 anal exams during this time, one under anesthesia to help them go deeper and get a better look. I also had an anal ultrasound which came back normal. I was recommended to get another MRI possibly but you just get to a point where you are exhausted. At this point Iam convinced I must be suffering from some kind of tight muscles in the area that just cant relax. I do feel my symptoms getting worse when stressed, anxious or angry. The muscles inside my anus constantly feel locked where I cant relax. The amount of pressure I feel in my rectum is horrific. It always feel like passing gas or having a bowel movement can release the tension but then I end up straining and forcing a bowel movement and making everything worse. The pain is there 24 hours a day. There hasnt been a single second in the past few years where I did not feel the pain. Some days are better and some days worse. However, the past 6 months I have only experienced the worse side of things. Sleeping has become impossible due to the pain and I can only lay on my stomach. Im not sure how much of my day I can spend in baths at this point. No relief from any pain medication whatsoever.

I want to believe this is TMS because I can see how increasing exercise, focusing on changing my thoughts, keeping myself busy and just reading success stories here helps my pain. However, can Ani Levatore Syndrome be TMS when its a structural diagnosis? I read how TMS is usually not a constant pain that has a pattern but my pain is directly connected to not being able to sit on my butt and pain getting worse after bowel movements... Is it still possible that I can relax this damn anal muscles through TMS after-all and have some kind of relief despite botox, physical therapy and muscle relaxation meds failing for this condition? Another factor that makes me think this is TMS related is the amount of mysterious undiagnosed conditions I have suffered with in the past 10 years. Endless medical testing and visits to Drs with no answers and then symptoms just disappear. However, this one has lasted the longest which keeps making me have doubts. Please help and thank you!

 

Hello Hopeful 818, I'm sorry for what you have been going through.

The fact that no one can give u a definitive answer for your pain would almost suggest its TMS.

That you say you have other mysterious conditions would support it.

Have you read any TMS books?

Have you done the SEP here on the TMSwiki?

Would you consider doing the above two things, take some strong pills to help you relax your muscles & get pain relief & consult a TMS doctor or specialist?

When u have been in so much pain for so long, yr nervous system has made it chronic. Yr initial injury, or fissure has probably healed but the pain is lingering almost like learned behaviour.

You need to break that cycle of fear through understanding & knowledge.

And yes there r many here who have healed from similar pain.

Regards

Mala

 

Hello Mala,

Thank you for taking the time to read my story and reply. Iam currently taking Diazapam, which hasnt helped with the pain but at least it helps me stay asleep through the night. I have just ordered a few books of Dr Sarno and waiting for it to arrive. I also started on Alan Gordons and the Structured Educational Programs. Its only been a few days but its really been enlightening especially listening to the interviews. I guess my doubts just came in when I keep hearing if there is a pattern to the pain it must not be TMS but this is the only hope I have now.

Any other suggestions to get started? Thanks!

 

Hi,

From reading your story it sounds like classic TMS and very similar to bladder and bowel pain syndromes. I think some kind of anti depressant would really help to calm your brain down while you're doing the TMS work.

 

Hello miffybunny,

I appreciate the reply. Im currently on Diazapam which helps just a bit.

 

Hopeful818. Gd idea to stay with the diazepam for the time being. Ask yr dr if he can give u something for pain during the day too. You can come off the meds when u feel confident enuff.

I want to share this TMS wall of victory video by Sarah. Like you she’s young but instead of anal pain she suffered from pelvic pain as well as a host of other problems.

Its v insightful & I hope it helps.



mala

 

It's good you have at least that but it may be worth looking into something like amityriptylline for awhile (sorry spelling lol) just to get your whole system to calm down a bit. It's not the solution and it would be temporary but it may be a helpful tool while you are doing the TMS emotional discovery and thought shifting and focusing on your life etc... Meditation or guided mediation type stuff would also help just to take the volume down a notch. I had issues with my bladder years ago (IC) with constant spasms and it was hell so I know how distracting that kind of thing is.

 

I have tried amitripline and gabapentin (however you spell haha) I had bad side effects from both, thats the reason my Dr. had me stick to Diazapam for the past 2 years. I dont have much knowledge about meditation but its definitely something on my list to explore next. Let me know if you have any recommendations for recourses.

Im sorry you had to go through that. Any pelvic related pain is extremely difficult to cope with. Shortly after my anal fissure surgery I developed bladder issues as well which was diagnosed as IC. However, it just disappeared after 6 months. Thats what makes me think I have a bad case of TMS. Just one thing after another since I can remember.

How are you feeling now? What exactly helped
you with your bladder pain?

 

Yes I totally understand! I had different bouts of TMS throughout my life but I just didn't realize it at the time. I even had bladder surgery after a bad childbirth but fortunately the IC never reared it's ugly head again. Around the time you had your surgery, I'm pretty sure there was a lot of fear and emotions brewing so the surgery just set off a chain of haywire signals in your brain. The key is to lessen the fear level. If you can't tolerate those other drugs, definitely stay on what you're on now. As far as meditating, It was never my thing but they say that it really doesn't matter "how" you do it or what types of meditation programs you choose (there are a lot on YT and apps), all that matters is calming down your brain so it knows that emotions are safe and you can handle them no problem.

My bladder pain went away as mysteriously as it came, after months of hell but I think it's because of things that were going on in my life at the time.

 

It was good to watch this video. Thanks, Mala for posting it. Hopeful818: as a fellow newcomer I don't have a whole lot of TMS wisdom to share with you right now, but I can say that you're surely in a place where others have gone through experiences similar to yours--no one here, it seems, can tell their full story without deploying a scroll bar--and in those stories there's so much of that familiar fear and loneliness which goes with the territory of pain. A few years ago, I lost my job of fifteen years and spent a long winter in relentless back pain followed by pneumonia followed by shingles. I'm sure the back pain was a huge stress response to having lost that job. I'd been a devoted employee and was pretty much just put out on the street with little formal affirmation for all the work I'd done. I didn't argue my case. I just accepted the loss, stayed on two weeks to wrap up, and then left. The back pain came a few weeks afterwards. Could it possibly have been TMS, and not the after-effects of a weekend backpacking trip? What I can share here is that I understand something about pain--the big pain that holds the body pain--the whole laying-sidelined-in-bed-staring-at-the-ceiling-thing, day after day. I feel for you. Concerning my exploration of Sarno's approach, I just picked up some weights a few minutes ago and did a little bit of weight-lifting while watching the video of Sarah's story. Lots of fear and feelings in the process. And my back was cranky and my mind was not at all sure where any of that was going. But nice to put this out there, and share. Some years ago, by the way, I went through a long bout with hemorrhoids--for me, that was a structural problem. Anyway. my doctor's name was Dr. Butz. I could not stop pondering that, even as I lay in his office in considerable pain. Sometimes it seems that irony is life's lowbrow species of enlightenment. So, today I'm reading Steve's O book (the one Sarah held up). Not sure what's in the name there, but even though I'm only about 30 pages in, the book is helping me. Welcome, Hopeful818!

 

Mala,
Unfortunately pain meds have never helped me. Even when my symptoms started over 4 years ago and were really mild my body just didnt react to pain meds. I have tried everything under the sun after my surgery and nothing... Besides making me really drowsy and putting me to sleep with the pain still there.

Thank you for sharing Sarah's video. That was inspiring but I wish she got a little more personal and detailed with her healing process and what she exactly did. She mentions “turning to her feelings” “battling her ego” and “light bulb that went on” but I really wish I knew what the issues really were and how she faced them as far as changing her perspective/attitude/thoughts toward them. That would really help people incorporate it in their own healing process. Curious to know what she understood when the light bulb went on. As a new comer into TMS its really difficult when as Sarah mentioned you are doing all these active things and understanding the concept on an intellectual level but still not on a deeper level. Obviously just staying physically active and keeping yourself busy does not mean awareness. How exactly do you discover the emotions that have been in your unconscious mind and your pain has been acting like a distraction because of it. Also how do you cope with those emotions to help your pain go away?

 

Northwood,
Thank you for welcoming me and taking the time to share. I can relate on so many levels. I lost my job at the end of February as well. Definitely cant relate on the part of being an employee for 15 years but it was something I was passionate and dedicated to for quiet some time. I did hit rock bottom after that and symptoms did get worse. I also just spend some time on the treadmill after reading all the encouragement of staying active as I listened to Sarah’s story. The result was mix of emotions, questions and feeling overwhelmed. Mr. Butz made me laugh. I was just getting to put an order for Steve’s book. Im glad it is helping you. Keep your head up. We are all in this together.

 

i had physiotherapy for my pelvic floor (including those inner muscles being touched, somehow the penny has dropped for me and I noticed how those muscles feel and how to control them to some extend, and the opposite of it is knowing how to release them - which helped me greatly). for me it was more deconditioning, body scanning (initally some sort of mindfullness, later almost every hour) and soothing instead of digging into childhood memories and emotions. another thing for me which was beneficial is trying to face my pain 'is this really pain?' and keep on doing the things i am doing and after a few seconds it subsides (in my arms it was twitching of muscles and I just continued typing and watching the twitching becoming less intense). note it did not happen over night.

"Unfortunately pain meds have never helped me." i think this a very good indication for TMS according to my experience.

 

Nice to hear from you. I just spent a few hours reading Ozanich's book. I've highlighted many passages. I am finding it to be a powerful way to understand TMS and how it fits into my life. Have you tried Alan Gordon's Pain Recovery Program (on this site)? Each episode is short and wonderfully succinct. I've been cycling through the 21 chapters. They are providing me a framework on which to affix other ideas and explanations that are coming from long books (like Ozanich's) or the insights members share. On the web, I ran across Dan Buglio's site, "Painfree You." Each morning he goes out into his wooded backyard and gives a thoughtful and loving talk about TMS. I've enjoyed listening to him. He's learned a lot from his own experience and, for me, offers a calming and assuring presence.

 

Michael91,

Thank you for sharing. Glad to hear you are doing better. My hope is to find ways to release my pelvic floor muscles as well instead of focusing on emotions.

 

Looking forward to getting started on that book and making connections. Yes, Im currently working on Gordon’s program and the Structural Educational Program.

 

Hopeful I know what you mean but I think what I got from it was that in the end she discovered that she had to put herself before others. I got that from the bit where she says that she stopped going to parties & baby showers etc. Maybe she was a people pleaser, a perfectionist & had to deal with those issues & her pain was a way of getting her to slow down & reflect.

That's my take on it.

Mala

 

Hello Everyone,
It has been quite some time that I have been on here, my husband Bryce was suffering from a fissure for 2 months, and Praise be to God it healed! So grateful to God for that. He was still in pain and having spasms up furter in his rectum so he had his internal hemmoroids treated with Infared Heat Coagulation which the procedure is painless but the scope was a 15mm and since his internal schinter was still tight, it tore another fissure in another area. He became suicidal from the terrible and persistent pain and I kept searching online for other answers. Thankful to God for this forum and for all of you sharing your experiences and healings. From these forums I decided to call a Pelvic floor PT and she told me about the book Headache in the Pelvis by Dr. Anderson & Dr. Wise. I ordered the book and read some of it and discovered that probably a lot of my husbands pain was coming from more muscle/nerve related pain along with the anxiety/depression/insomnia he was suffering from the pain. It becomes a viscious cycle. I decided to try to call Dr. Wise since his number was in the book. To my surprise he answered the phone and he is such a great person and doctor to talk to on the phone. He said he could not advise us since he is not our doctor but he told us what he normally recommends to his patients.

1. 1% Nefidipine ointment in a neutral base (no lidocaine - can be irritating to the tissue) and diltizem can be irritating to the tissue. Apply a toothpaste size amount 3x a day if possible with finger but if not with applicator
2. Hot baths which we all know relaxes the muscle by 1/3 (3 x day)
3. Ketamine Infusions for pain

I immediately searched for ketamine places and found one in our area. They were able to get Bryce in within a week, and we were so thankful to God to have hope again. We truly believe that God intervened and put these people in our paths, and we thank God for the chemicals that he gave people the wisdom of making and helping people. We believe it all comes from God, and Jesus Christ His Son, Our Lord & Saviour.
After the very first 4 hour ketamine infusion treatment on March 6, 2020 Bryce went from not even being able to ride in vehicle laying down without tremendous pain to driving the same vehicle the very next day. He still had some post bowel movement pain, and spasm high in the rectum, so the doctor prescribed his .1 mg clonidine for protagia flugax 2 x day and oral sublingual ketamine 20 mg 2 x day. He was also already on valium 5 mg 2x day for anxiety and to help relax the muscles. And another doctor prescribed doxepin 25 mg before bed for sleep. This really helped him with sleep after about 1 week, the valium helped with the anxiety. The same type of pain even with an active fissure. Because Bryce had active fissure pain prior to the first ketamine infusion and the next day that pain was gone. Praise be to God, Glory to God! We give God all the Glory! Bryce had another infusion 5 days later with even more improvement as ketamine also helps with depression/anxiety and suicical thoughts. Then he had another 6 days later and had 95% improvement. He had a relapse of pain and high rectal spasm 3 days later and was not able to get another infusion due to the corona virus, the one in Pittsburgh shut down. The relapse lasted a few days and he did have improvement each day but still was having some post bowel movement pain and pain throughout the day with activities. So I talked to a ketamine place in Clevland Ohio and she told me they could not get the ketamine in right away due to the virus so she suggested to call a neurologist so I did. He prescribed gabapentin 300 mg 1 x day before bed and increasing to 600 mg and then if needed 900 mg. Bryce started the gabapentin 300 mg 7 days ago and Praise be to God and we give God all the Glory he has had improvement with post bowel movement pain! Also he is using the 1% nefidipine ointment 3 x day, and 2 other ointments prescribed were the first one all of these: 6% gabapentin, 5% ketamine, 3% amitrypiline, 2% tetracaine. and the other is 3% amitrypiline. These all help with both tissue and nerve/neuropathical pain. Just wanted to pass along what has with the God's healing touch helped Bryce. He is now taking 5 mg valium usually just 1 x day, 300 mg gabapentin night + 150 mg gabapentin morning, .1 mg clonidine 1 x day, 2 - GNC Tri-Sleep product at night, 20-40 mg ketamine sublingual per day.
Pray that God will bless you all and bring all His Angels down to touch each and every one of you suffereing and please pass this on to everyone. God be with you all, with Love in the name of Our Lord & Saviour Jesus Christ,
Bryce & Sara

 

Hello Sara,

Thank you so much for sharing your husbands story. It sounds like we have a similar journey which gives me hope.It is so reassuring to hear he is doing better. Im a truly believer that this is muscle/nerve pain as well. Im in such a desperate state of mind that after reading all the steps you have taken I followed by doing everything instantly. I went ahead and ordered the book just now and got in contact with a Ketamine clinic in LA which there seems to be only one in my area. Surprisingly they are open and operating. They can see me as soon as a week. They do have concerning pricing though. They told me patients usually need 5 infusions and each one costs $1800 + infusions boosts after to keep up if there is relapse. They are not in network with any medical insurances. Im just curious if that is anywhere close to what costs you guys had to pay for this?

I tried the gabapentin orally and it gave me awful nausea with a lot of side effects. The amitrypiline did not help as much.Nefidipine ointment and diltizem was what I used when I first got a fissure and that failed as well. The only thing that helped me is 10 mg Valium before I sleep and hot baths for the past 4 years.

I just have a few questions. What degree was your husbands internal hems which they decided to remove. Did they believe it was causing any of the pain or it was more of a trial error thing? Also as far as the clonidine for protagia flugax 2 x day and oral sublingual ketamine... Did the Keramine clinic doctors prescribe these? This sounds like the only thing I havent tried.

Another natural remedy your guys can try which has been really helpful in relaxing my muscles and helping with anxiety is Kalm with Kava.

Hope to hear from you soon! God Bless!