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Day 3 Feeling uncertain and overwhelmed with emotion...

Discussion in 'Structured Educational Program' started by Hopeful818, Apr 3, 2020.

  1. Hopeful818

    Hopeful818 Peer Supporter

    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 and 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 afterall and have some kind of relief despite botox, physical therapy and muscle relaxation meds failing? Please help and thank you!
  2. ssxl4000

    ssxl4000 Well known member

    Howdy...sorry to hear about your long ordeal. I hope this website gives you hope and comfort. In my opinion, you are pretty clearly suffering from TMS pain, and I believe the programs here will be of great help to you. My TMS story is different than yours, but there is some overlap. I suffered from IBS with constipation for over a decade due to stress, and developed a mild anal fissure at one point. A few years ago, a really stressful period gave me mono, which turned into Chronic Fatigue Syndrome. After a year and a half of that this program helped me heal.

    Long story short, my symptoms were all created by my brain. I healed from mono, but my brain used it an excuse to start Chronic Fatigue (which basically just feels like long-term mono). It worked very well as a distraction from the very difficult family and work issues I was going through at the time. Eventually, I figured it out, and the symptoms started going away.

    It seems the same happened to you. You probably started getting constipated due to some stress, and the constipation led to an anal fissure which can be quite painful (I've had a small one). The fissure healed, but your brain saw that as a perfect excuse to keep causing pain. Most likely, there was and maybe still is some stress in your life that your brain views as dangerous, or some repressed emotions eating away at you. This program will help you explore those things and lose some fear of anything you find.

    Regarding some of the points you made:

    Key thing to remember: when it comes to TMS, the pain/symptom is “structural.” It’s the cause of the symptom that is NOT “structural.” Levator Ani is just a name given to pelvic tension/pain with no known cause. The pain is real because your muscles are tense, but the key thing is the pain is caused by your brain. It’s similar to IBS in that it's is just a name doctors give to pain/bloating/gas/ etc. with no known cause.

    This is what Dr. Schubiner would call “medicalization.” It’s when the medical community takes a set of symptoms that they can not explain, and slap a name on it. They say they don’t know what causes it or how to cure it. It is very easy to fall in this trap. It's quite silly when you think about it as modern medicine is great at finding stuff that is structurally wrong with you. It sounds like your medical journey was similar to me in that is was extremely thorough. If you had something wrong with you, somebody would have seen it by now.

    TMS often presents illogically, and sometimes inconsistently, but make no mistake, many TMS sufferers have constant pain. Looking for patterns or inconsistencies is helpful. For example, the fact that the silver nitrate treatment worked for a while, but then stopped, is illogical. If something was physically wrong with you, this treatment would either never work, or always work. It seems it helped your muscles relax for a while, overriding what your brain wanted to do. However, eventually your brain upped its game and increased your pain to compensate. This happens frequently. With me, I started getting constipated 14 years ago. It would come and go depending on my stress, and overall I learned to live with it. Often I would find something that "worked" to help it, such as eating raisin bran or running. However, these solutions never lasted. As soon as a new stress emerged, the constipation returned.

    The fact that these treatments have failed makes it even more likely that your condition is TMS. If there was a structural explanation to your pain, than a treatment would help. One doctor thought my IBS was related to dairy, so I cut dairy and felt better for a few weeks. Then, long behold, all sorts of other foods started bothering me (I can eat anything, including dairy, now). When your brain is the cause, it will always find a way to keep the pain going until you address the root emotional causes.

    You are in the right place! Try to have hope and work through the program as best you can. Remember that healing is a long journey, and try your best not to worry about immediate relief. I know that's hard when your pain is severe, but you can do it just like all of the other success stories on this site have. Good luck!
  3. Hopeful818

    Hopeful818 Peer Supporter

    Hello Ssxl4000,

    Thank you so much for sharing your story and giving such thoughtful answers to my long pondered questions. Your answers really gave me a sense of relief and peace of mind that Im in the right place. The whole concept of Western medicine slapping names on conditions and wrapping up with not knowing a cause or cure and pretty much doing the whole “good luck” to patients has been my experience with every condition Ive dealt with. This makes sense that its TMS. Your story does have some common aspects as mine. Iam glad to hear you are doing better. At this time Im fully dedicated to the programs. I think Im just having trouble understanding how I discover these “repressed emotions” and deal with it. That area seems really vague and tends to give me anxiety not knowing how to accomplish it due to lack of information.

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