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New to Forum with Chronic Pelvic Pain

Discussion in 'Support Subforum' started by Chizzy, Jul 9, 2017.

  1. Chizzy

    Chizzy Peer Supporter

    Hello, I have been following many people stories on this forum for quite some time now, but I never really had the urge and desire to post my experiences until now. I learned about TMS from Ezer who I came in contact with on the Pudendal Hope website. I'm thankful I do not visit that site anymore because to me it feels like people go there to give up /die.... My story, like many of yours, is very long so please be patient . In April 2014 I was on a bicycle ride in Coronado California and around mile 30 I felt a sharp burning pain in the left side of my pelvis and hip. This pain was not completely unbearable, but it did hurt like hell. Within a couple days the pain was in my entire pelvis and centered in my testicles. It always felt like I had to pee, and the pain got worse when I was sitting down. Two extremely stressful things were going on in my life at the time. My first child was born in March of 2014, and I was starting a new job as a Human Resources Analyst in April of 2014. Like Sarno says, I was in the responsibility stages of my life when this pain occurred. After one year of the pain being all over my pelvis, the pain solely concentrated on the inner left side of my groin behind my left testicle. That's where the pain still lives today, and it feels like a constant stinging and burning sensation (when its there). After the first year of being in constant pain, the pain now comes and goes. I can be in pain for five days, or I can be in pain for five minutes, and have no pain for a week. My flare-ups consistently come and go, where I have absolutely no pain for decent amounts of time, and then I might be in a flare up for 8 weeks straight. It is really quite odd. Here were the things I was diagnosed with to begin with:

    - prostatitis, bacterial and non-bacterial. After being on medication for several months, I did not get better and I thought I was losing my mind so I stopped the medication.

    - the diagnosis was changed to Interstitial cystitis as my pain never got better. They treated that with multiple bladder injections through a catheter, fun...

    - CT scan of my pelvis said everything looked perfectly healthy.

    - after about 150 doctor's appointments I started seeing a physical therapist in December of 2015. This is how I found out about the pudendal nerve, which led me to The Pudendal Hope website, more fun...

    - diagnosed by dr. Sheldon Jordan in the spring of 2016 with pudendal neuralgia. He wanted to do nerve blocks, but through research, I made the decision to learn from others mistakes and not go the nerve block route. Still believe to this day one of the best decisions I ever made. To me Dr. Jordan seemed like he was making it up as he went along, very strange visit....

    My childhood was very rough. I was recently diagnosed with complex PTSD and I am working with a trauma team at sharp for the next 12 weeks in an intense outpatient program. I could talk about my childhood for weeks, but here is what you need to know:

    - I was mentally, emotionally, physically, and sexually abused throughout the ages of 4 and 18 years old (sexual abuse took place between 4 and 10).

    - I was abandoned by my family multiple times as a child.

    - I started using meth and alcohol at 13 years old. From 13 to 22 years old I was heavily addicted to drugs, and I was incarcerated off and on during that nine year period.

    - since I was a child I have always had anxiety, mood swings, rage, shame, pain, thoughts of not being good enough and other emotional /mental symptoms. These are all causes of the environment I was subjected to. This is why I started self-medicating at 13 years old.

    - on March 21st 2006 I got sober, and I celebrated 10 years sober on March 21st 2016. I worked very hard to get myself out of the life of a convict /addict into a healthy member of society with a great job in Human Resources.

    During my doctor's visits starting with the first ones in April and May of 2014 they tried to feed me every narcotic in the book for my pain. Obviously, I've declined because I know that I will abuse anything that makes me feel different (I proved this point to myself later in my suffering). In the spring of 2016 I was feeling hopeless. By this time I had heard of the mind-body syndrome (thank you Ezer), but I wasn't sold yet. In May of 2016 my wife and her father stopped talking because of something that happened during her childhood. This caused major anxiety and my pain became crippling. I could no longer face it alone so I decided to get my medical marijuana card. On May 27th 2016 I started using marijuana and the first day my anxiety was so bad that I thought the pain was going to kill me. But after that first day between May 28th and October 16th kof 2016) I was pain-free. I stopped smoking weed on October 16 2016 because it became my life, as I knew it would, because I'm a recovering drug addict. As soon as I stopped smoking weed my pain came back and it was there for a couple weeks, even though I was in Hawaii on vacation when I quit. Like usual the symptoms would come and go, be gone for weeks then be back for weeks. After close to an 8-week flare up that started in January of 2017 I relapsed again on weed on March 15th 2017. The pain was gone immediately, and gone for the most part until I stoped using weed on June 15th 2017. Over the last 3 plus weeks, I would say I've been in pain half the time but it's manageable. When my pain comes on I begin to doubt the TMS, and it drives me into a frenzy. I haven't really done any of the TMS work other than trying to feel my emotions. I feel like when I'm able to feel my emotions and not think about them my pain goes away. After 15 years of no medication (SSRI's), I have agreed to take Celexa to try to help with some of the severe symptoms that I've had since childhood. Nightmares, constant anxiety, nausea in the morning, cold sweats, a gripping fear inside of me that feels like I'm going to be thrown away if I make a mistake. I am worried because the Celexa is making me feel a little bit Hollow. I'm not really feeling any emotion anymore and I really don't know what to do. On the flip side I do feel like the Celexa is helping me not get worked up about things so much, but I'm still glued to Google (anxiety) which I know is a terrible thing to do when TMSing. Here are some other experiences during my lifetime that I've been able to pinpoint that I think are other symptoms of my TMS:

    - 4th Grade I started a new school (again) and I had severe pain in my quads and hamstrings. It was so bad that I couldn't run, and it hurt to walk. This lasted a couple weeks. My mom says it was growing pains, doubt it....

    - I played Little League for several years, and the kids on my team were bullies, this made me nervous every season. I would get plantar fasciitis on both feet throughout baseball season during my little league years.

    - when I was getting incarcerated, I had the worst IBS. This lasted several years. Basically, if I did not have access to a bathroom, and when you're incarcerated sometimes it's hours before you have access to a bathroom, I would instantly have diarrhea. This lasted several years. You guys do not want to know the stories that took place because of this disorder....

    There is honestly so much more that I could talk about, I feel like I'm only scratching the surface here when it comes to my life and what I've been through. I have two children now, both of them are perfectly healthy and very happy. But something about the responsibility gives me fear and self-doubt. I know a lot of this is because of my PTSD from childhood, but I really want to tackle the pain, because I feel the pain controls my days and nights when it's there.

    Does this sound like TMS? Does anyone have any advice for me? Should I stay on the Celexa? I am very happy that I'm finally reaching out, and I really need some advice. Thank you so much for your support.
  2. Un0wut2du

    Un0wut2du Peer Supporter

    I have so, so much to say here but I'm at work so I will type more later. I have many parallels with you. I too have had chronic testicle pain on the left side that is clearing. Many of my other chronic pains are now gone. In my opinion, and I am NOT a doctor, you are classic TMS based on all of the reading I have done and self discovery. I too took Celexa and it made me "blunted." Its a terrible drug in my opinion. Taking those meds does the opposite of what TMS work requires. They treat "symptoms" and not problems. They solve nothing. You need to make that call but for me those meds are total bullshit. I take no meds of any kind. I have a lot more I could go into about all of the things I tried for the testicle pain that were all malarkey. CT scan, pelvic floor PT, ultra sound etc. I know its my repressed emotions from child hood. While my trauma was not to the level or yours I have my own nonetheless.

    I am a recovering alcoholic/addict and reached five years of sobriety on June 19, 2017. I have taken nothing more than Advil in that time. Not even a benedryl as I also know that I cant handle ANYthing that alters my mind. I've had knee surgery and declined the opiates based on the past. Through working AA and learning recently about TMS I find the parallels immense.

    Did you work the program in your 10 years of sobriety and are you working it now? I believe this to be imperative. TMS therapy and now psychotherapy have been critical additions from me to solve the decades of knee, leg, calf, soul of foot, groin, back, carpal tunnel, numbness of arms, trapezoid pain.... Most are gone. The groin is the hold out and my TMS doc, Dr. Stracks in Chicago, has told me that the groin pain is one of the hardest and longest to get through. But it gets done... so I hope you've found hope in my note. (This was going to be short message but I just kept typing.)

    The theme you will hear over and over is - stop the focus on the physical stuff and get to work on the emotional side. You have a ton to work through it seems. Again, in my opinion the meds are detrimental to the process but thats your call. Celexa in particular I found debilitating.

    If you are working the program, good for you. If not, please get back to regular meetings, get the sponsor and work the program. Find a TMS doc and or therapist. Many on this site do it over the web via video. Keep coming back. For me, none of this is possible without my healthy sobriety first.
  3. Chizzy

    Chizzy Peer Supporter

    Thank you for your reply. I decided last night to stop the Celexa because of the some of the reasons you listed. I have been on 10mg for 10 days. I am scared of the withdraw symptoms....

    I am working a program and I believe strongly in AA. I am confident in Recovery from TMS, and I too believe sobriety is key.
    Last edited: Jul 10, 2017
  4. Un0wut2du

    Un0wut2du Peer Supporter

    That's so great to hear. One of the keys for me with the TMS work (and with my AA work) was to learn to be patient and let the process work. It takes some of us a lot of time. I got down on myself because I thought I was supposed to read a Sarno book and be cured. That's what I wanted, of course... But in finding out about TMS, reading the veterans notes hear, reading Steve Ozanich's book "The Great Pain Deception" I learned to just settle down and just do the work. I've read three of the Sarno books, Ozanich's book, I journal, meditate and go to weekly therapist appointment where we are stepping through my entire life one year at a time. There is also some self compassion work I do as I am ridiculously hard on myself. I can tell you with just beginning this work in March I have made marked improvements. This repetitive stress numbness and pain (diagnosed THIS time as ulnar nerve something etc) absolutely vanished before I was finished with Sarno's "Mind Body Prescription." Which was a remarkable breakthrough but somehow I was disappointed?!?! All the other nagging limb pains have vanished. My knee pain actually got worse after beginning TMS work as I had convinced myself that the meniscus surgery I had in 2014 was a big mistake. This was actually a HUGE help to me as I saw first hand how my monkey-brain took advantage of my fear and made the pain worse. All based on my thoughts. I am back to running 20 miles per week with zero knee pain. Sometimes it tries to poke back up or take residence in an ankle of foot etc. but I know what it is and it quickly fades. Steve O's book was a huge plus for me here.

    The testicular pain remains and as I've said my TMS doc says the groin is a more lengthy process for whatever reason. Much like yours it comes and goes. It is worse now more then ever I am convinced because I have solved other area's or chronic pain and we know that it moves around. This is its last gasp. I just know it. Too many other problems have been solved. Even the knee which was the location of a known injury to my subconscious. A severe hyper-extension caused by a moving vehicle that tore the meniscus. But I still run 20 miles a week. No problem. I have all of the faith in the world the groin pain will lift. I just have to keep working. And there was absolutely NO injury to this area. It just feels like the left testicle is being pulled up by the cremaster muscle at all times. Like I was kicked. Very painful. The pelvic floor PT just made me focus on the physical. There is just no physical problem with my testicle or groin. Ive' gone to many different urologists and MD's over 30 years and none of them have a clue. It all checks out.

    Keep at it. It takes a lot of time and effort for some of us. Especially if we are going back decades. Get Steve's Book. it is very long and detailed with his personal experience (what a story!) and all of the research and work he has done. This book is just a mountain of great info.

    You are in the right place. Good luck.

    You will see Steve post here from time to time.

    http://www.tmswiki.org/forum/members/steve-ozanich.111/ (Steve Ozanich)
    bio6626 likes this.
  5. Chizzy

    Chizzy Peer Supporter

    What was your experience withdrawing from the Celexa? I am pretty sensitive to medication, so I am expecting the worse. Lol

    It's great to have another brother in recovery that understands what I'm going through. Thank you so much for taking the time to post today.
  6. Un0wut2du

    Un0wut2du Peer Supporter

    I see: left testicle, recovery, PTSD... I am telling you this has helped me to hear someone else similar, just like in the rooms. To be honest with you I dont even remember. I was so crazed on benzos and opiates through all of that. I think I had made a transition from Celexa to lithium so it was just on from one to the next. The lithium did the same. The doc was the one who said "You look blunted." I felt nothing. I know when getting off of those meds I just did what the said. The doc had a schedule and I just did it. But again, its all a fog because the heavy stuff is what I was then going to. I stopped, very very dangerously, the benzos and opiates cold turkey. I went to the doc three days after stopping and he just looked at me like "how are you alive?" We were then on the phone to Hazeldon within seconds and the rest has been my recovery. I wish I had a better answer for you but at that point I just stopped being my own doctor and finally took his direction.
  7. Chizzy

    Chizzy Peer Supporter

    Off Celexa day 2, feeling okay. Its nice to know someone else in recovery that deals with the same pain as me.
    Un0wut2du likes this.
  8. seanpat

    seanpat New Member

    This exchange helps me immensely. I am almost 11 years sober and the parallels for us drunks and addicts is astonishing. If I am going to multiple AA meetinga and staying connected to the program and other people my symptoms disappear. When I don't they reappear. God bless you guys. right now I have right testicle pain started this morning. I have prostatitis which comes and goes along with 100 other symptoms but this one hasn't been around in awhile it is freaking me out. I have every test known to man in past five years so I know it is TMS. I worked out this morning and I am wondering if I pulled something...it didn't start though until an hour after workout which seems unlikely.
  9. Chizzy

    Chizzy Peer Supporter

    You are in the right place. Prostatitis is TMS, don't let the Docs fool you. Anything Docs cant explain like prostatitis, interstitial cystitis, pudendal nerve damage is all TMS. Get in touch with your emotions and be confident that the pain cannot harm you or that you have not done harm to yourself and it will go away. I think doctor Howard Schubiner is by far the best TMS specialist on the planet. He is very responsive, I email with him regularly. This is a life long battle that can become a very easy one to overcome. Train your mind to forget and let go. This is a good video I cam across recently, check it out:

    Watch "Explaining chronic pain: The role that stress plays and the creation of learned nerve pathways" on YouTube
  10. seanpat

    seanpat New Member

    Good stuff. I have been at this for years with varying degrees of success.

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