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Feeling lost

Discussion in 'Support Subforum' started by riverrat, Jul 26, 2018.

  1. riverrat

    riverrat Well known member

    I have been so back and forth since the big onset of this pelvic pain this spring. Though struggled years back but had recovery for 7 years. This time is kicking my butt. After much stress in 2015 this came one, but then just kinda got better in 2016. Then major pain return in spring 2018 after simple UTI. That is fully cleared now. Only " diagnosis" I get is tight ab muscles pulling on my hip causing misalignment causing pelvic floor pain. I was feeling so much better last week. Tried sexual activity on the weekend which is a trigger and fear for me. Though only sometimes. And big flare up 2 days later. Though rarely pain during activity. What does that indicate?
    Now All summer- some good days, then bad, then better, and back and forth. Everytime im having a few alcoholic drinks, I am almost 100% pain free. I don't drink often, but everytime I have, pain goes away. What does that mean? I can feel so OK one day, and a collapsed mess a few days later wanting to just die from the severe pain. For days.
    Having so many times of improvement through my life of various pelvic pain should give me all the inspiration I need to kick this time to the curb. But it's sticking around for some reason. Someone help me understand. I am trying so hard to just live life and not give it focus, done Alan's program, drove myself crazy trying to journal and find repressed emotions. I can not afford private therapy, so not looking at that option. My stress is less than it was, I have a good life now again if it wasn't for the pain. I can't stop fearing pelvic pain. I had IC years many years ago after a UTI. But recovered fully a few years later. Never had another UTI since until this spring. So it did bring back a lot of dark memories of that time. And I think that's why I'm so scared of the pain now. I just need somebody to tell me how to make myself think right and gain my confidence in trusting my body to heal again. This isn't even a complicated thing to heal. Thank you for any hope or advise.

    Oh and this weeks flare up compared to others, the pain is moving locations and sensations more than ever. Some even new sensations of pain all throughout the pelvic floor. I really pissed things off to create intense pain afterwards by pushing on and trying to work out this tight muscle trigger point on Monday. Now if I hardly even touch where it hurts the most, I just make it way worse. What's up with that too?
    Last edited: Jul 26, 2018
  2. Ellen

    Ellen Beloved Grand Eagle

    Lizzy likes this.
  3. riverrat

    riverrat Well known member

    Thanks Ellen
  4. plum

    plum Beloved Grand Eagle


    I learned the hard way not to play with trigger points :(. Seriously they were a guaranteed way to ramp pain. I'm aware of the relationship between them and tms (@Gigalos has written some great posts on this), but for me it's a big no-no.

    So there's that. As to your other woes, you don't need someone to help you to think right but you do need to actually and actively nurture a good relationship with your body. For me this involves ensuring I make time to indulge in the activities that bring me pleasure. Mainly this entails a couple of hours at the pool (an hour in the jacuzzi) twice a week and lots of sleep. I simply function better and feel better with this as a baseline. It also makes it easier to add on other nurturing, pleasurable activities because my body feels grounded and nicely gooey. Do you have anything that may serve a similar purpose for you?

    Please don't feel the need to post about this but is there some reason for sexual activity to be a trigger? Or is it more the case that it is a conditioned response?

    Plum x
  5. riverrat

    riverrat Well known member

    Thanks plum,
    I just don't get why it comes and goes so much.

    There are sexual issues cuz I chronically tighten the pelvic floor. Not even knowing I am. I suppose it has to do with being raped, as i guess that's when I started with my weirdness. Also researching ( which I don't do anymore) I just would come across too many pelvic pain stories of other people where sex was a trigger.... so just associate fear partly because of that too.
  6. plum

    plum Beloved Grand Eagle

    Given that you've had success before you absolutely know you can overcome this again. My suggestion is that you ease your focus off the pain and emotional issues and instead devote yourself to generally feeling better. I have found it incredibly helpful and healing to effect this shift from the specific to the general because it relaxes our emotional self.

    When we focus so hard on healing we tend to funnel and tighten our emotional bodies thus creating excess tension. This naturally lessens when we release our hold and let ourselves and life be a bit more. I know it is hard to be at ease when we are in pain and afraid but it is possible and it gets easier.

    This is why I love to lean into pleasure. It is leaning into the soothe side of Sarno's rage:soothe. It's such a fundamental interpretation of the equation that it is easy to miss, the elusive obvious and all that.

    And by pleasure, I don't mean sexual pleasure necessarily. Within this context that could be seen as too specific where you may want to go more generally into softer, more sensual, less erotic pleasures. We've had a heatwave here and one these soft pleasures for me has been resting on my balcony, basking in the mellow evening warmth as a gentle breeze caressess my skin. I cloudwatch before drifting into the darling sleep of a babe. Pure bliss. Such natural experiences profoundly soothe and heal body, mind and spirit.

    Plum x
    riverrat likes this.
  7. kimaya

    kimaya Peer Supporter

    Hi iam a newbie but i think if you beat it once you can be sure to beat it again as you are familiar with it and if it did go once it could go again .
    Also if you don’t mind can you explain how did you get rid of ic like symptoms first time iam also struggling with them after a uti .
  8. Renee

    Renee Well known member


    This is a selfish question, but how did you overcome pelvic pain in the past?

  9. riverrat

    riverrat Well known member

    Renee honey that's not selfish at all!
    Well as it turns out I went to get checked and I have another UTI. They figured it out after it was cultured. Negative first. Since I've been struggling so much since April after having one, and never actually had it cultured after antibiotics, could it be the infection never fully cleared, improved but never totally eradicated? It's just so weird since I hadn't even had one in 15 years, now 2 in less than 3 months? Whatever I dunno anything for sure. I'm Just going to do treatment for that part. The muscle stuff is still mind/body. ... could the UTI even be TMS? I will say though it's confusing yet comforting because it never caused any urinary pain whatsoever, or frequency, only perineum, and pelvic floor pain.

    Kimaya and Renee,
    You asked about IC/ pelvic pain and how I healed it before. It's so hard to say for sure cuz I think it was a combination of things. Just to note that was bladder and urinary symptoms back then. Still healed from that. My pelvic issues on and off since 2015 are different.
    I didn't necessarily apply TMS theory but I did incorporate a lot of reading of how the human mind can heal anything and soaked myself in stories of healing the incurable whatever illness that may be. And believed in my body's ability to heal, and spoke affirmations. One big thing is I STOPPED saying things like " I have IC". I only said I'm healing from pelvic pain. Don't say " I have" something. that only gives power to it and claims it over yourself. I used visualizations of a healthy body a well.

    But I did need to do physical stuff in addition. What got me started healing was a book called " Along the healing path" by Catherine Simone. And I did some of the things she recommended to soothe and repair my body. Like taking slippery elm and aloe Vera. Then I followed the gentle detoxes in a book called " the detox book" by Bruce Fife. All was helpful and eliminated all my allergies.
    But I had a TMS/muscular side to it and I found tremendous help from an alternative type of chiropractic called NUCCA. He did some really helpful muscle release as well. It's not like regular chiropractic. They never helped. PT never helped. NUCCA believes your body can heal, keeps it simple, and doesn't make you keep coming back every week because it's more permanent. I know this goes against TMS teaching, but it was a turning point for me to alleviate the pain I was feeling. I've since seen many friends benefit from it as well. Again, it helped me heal. Or maybe it was the belief I knew it would help me because of the optimism of the dr. ? I looked to it as supporting me body to heal.
    Some may argue it's placebo. Whatever it worked. I've never had pain like I did prior to it. I was pelvic pain healthy for several years after it.
    I didn't know much about TMS then, so all I did was visualize, and believe in healing, and allowed the physical stuff to support my body to heal with my mind believing in it.
    When symptoms crept back in 2015, I had been under the most emotional stress I'd ever gone through- so it's no wonder tension crept into my pelvic floor muscles. I knew the bladder healed, so TMS couldn't go there. Then it just kinda went away in 2016 after I stopped thinking about it. Then had major legal issues going on in 2017 from a crazy person stalking me. Was very stressed. And scared. Then this UTI thing occurred in April 2018. I'm still trying to figure out if it is all TMS or the actual UTI caused it all. Or TMS caused the UTI. But like said, I have zero actual bladder pain with it. It's hurts in other areas. So it sure acts like a TMS strategy, even through there's a real infection. I just don't know- what do you think?

    Sorry to break TMS rules and sharing the physical things I did, but I do believe they helped in combination with calming my mind through believing in the things I did. The NUCCA dr gave me a sense of peace of it working to relax my nervous system so I guess I calmed my mind by believing that. Any healing comes from belief, whatever that that belief is.
    Renee likes this.
  10. riverrat

    riverrat Well known member

    Thank you so much!
  11. Renee

    Renee Well known member

    Thank you for taking the time to respond Riverrat. I will check out those books and NUCCA. I've never heard of that kind of therapy! I've done the SEP but am going to go through Alan Gordon's new program. Have you done it yet? I have a hypertonic pelvic floor also. I have tried everything even pt didn't really help. I think I've held so much tension there for so long that I don't even realize it anymore except when I have a flare up. It seems like Alan's program is based around fear and anxiety so maybe it's worth looking into. I think pelvic pain is TMS but since it affects a person physically I don't think attending to both is a bad thing at all.

  12. riverrat

    riverrat Well known member

    I agree with you. I think there's just different causes to pelvic pain. If it's primarily muscles and nerves, I think it's gotta be TMS, right? I liked Alan'a program much better than SEP. journaling has never been helpful to me and only fuels pain for me. Many will disagree but both times I got better I feel like staying of forums and the internet and just not thinking about the pain helped a lot. I'm just more wondering about this infection thing now being the reason it's been going in since April since that UTI In April and I felt fine before it and now came back last week. Do you think there's a TMS component to UTI's or infections?
  13. Renee

    Renee Well known member

    Dr Sarno writes in his book "The Divided Mind" that many physicians refuse to believe ulcers are psychosomatic because of the discovery of a bacterium in the stomachs of people with peptic ulcers. It is claimed patients are cured with antibiotics. This is one of the many examples of medicine's inability to confront the reality of psychosomatosis. The presence of bacteria in the stomachs of some patients in our view is merely part of the process.

    In another part of the book he says the unconcious mind may decrease the efficiency of the immune system and render the person susceptible to infection. Recurrent infections are usually an indications of this process. The infections must be treated medically, but they will continue to recur if they are not treated psychologically as well. I think you said you are not having bladder infection symptoms, that the pain is in other areas? I know from my own experience that when you have a bladder infection the pain and burning is almost unbearable and gets worse if not treated. It's almost impossible to not run to the doctor because of the discomfort. So if you are not feeling the actual symptoms maybe go back and ask for a second test and culture explaining to the doctor that you are not having actual bladder infection symptoms. Once I had symptoms but the test and culture came back negative both times. My doctor wanted to send me to a urologist but thankfully I knew about TMS and the symptoms eventually left. Maybe the antibiotics you took in April didn't fully cure the infection, but I would think you would have bladder pain and burning. If the infection is not completely gone you definitely wants to take another round of antibiotics along with a probiotic.

    I've had a short bout with back pain and 1.5 years of neck pain that I conquered with TMS knowledge but this pelvic pain is a whole other thing. It just seems so much more difficult and when pain affects you in such a private area it makes it all the more worse. But I am better than when I was younger at least. I hate to say this but I try to follow a low oxalate diet which does help because my tissues have been compromised by a tight pelvic floor. Even though this goes against TMS I'm too afraid to eat anything I want because I had a horrendous flare up a few years ago that lasted 9 months. I'm not as strict with the diet as some people are though so I tell myself that I haven't totally bought into it:) I'm not much help but I sure know what you are going through, and it sounds like you have made progress even though it might not feel like it. The only time I was completely free of my pelvic pain was for a short time 20 years ago when I was over the moon in love which proves it has everything to do with emotions and anxiety.

  14. Time2be

    Time2be Well known member

    Riverrat, sorry you are still bothered by this! The UTI has triggered the pain (muscles clench) and the fear of being in pain did the rest. Your pain memory has been actualized. I think the pain will stop eventually, with or without your contribution. The best is to trust in your body and your psychological strength. I was always getting better again and it happened whenever I stopped being fearful or tried to hard.
    Wish you the best!

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