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Introduction. Really need some emotional support right now.

Discussion in 'Support Subforum' started by LouVes, Oct 28, 2018.

  1. LouVes

    LouVes New Member

    Hi everyone,

    I wish I could say that I'm excited to be here - as we often are on forums where we're looking to chat with people who share the same interest on whatever the forum is about - but if I had a choice, I wouldn't be here!

    Very long story short - I have pudendal neuralgia. It started in January 2018 at the same time as a kidney stone, bladder infection and vaginal infection. This was just two weeks after I met a lovely man (who is still around after all this heartbreak and pain, by the way, which makes him a saint because it hasn't been easy for him).

    Yes, I have tried everything - the meds, meditation, sophrology, physio, osteopathy, homeopathy, neuroplastic exercises and am waiting for an appointment with the pain clinic and the pudendal specialists. The meds (Amitriptyline) worked very well for the nerve pain. So well, that I came off them in the beginning of August because they'd made me pick up 6kg and I had the feeling that under the very meagre dose there just wasn't enough pain to justify the 7 drops of drug every day and the extra weight it was packing on. I'm 45 years old, slim and very sporty but I'm not someone who is obsessed with my weight. I've never dieted as I've always been active and I was just very uncomfortable with the extra 6 kgs all around the tummy area, and worried that it would keep packing on until I was 30kgs overweight.

    The first 10 days of coming off the meds were difficult. I had pain and then...it just STOPPED for 42 days! Not completely but I remember thinking, "If this is what was under the meds, I can live with it for the rest of my life". Minor discomfort. I was so proud of myself as I had started mindfulness meditation at the same time and felt so happy and positive. I had my life back! Not the same one as before but a pretty darn good one - my partner, my children and my job.

    I must add that the pain has always been in the right side of my pelvis between the hips and the vagina up towards the tummy area. This makes sex painful during a flare but possible and enjoyable when there's no flare. But, after 42 days - literally out of nowhere - (although I had been doing so well that I'd gone hiking 3 times in one week instead of the normal 1-2 times, was wearing tampons and jeans and was back into the full swing of things at work full-time for the first time since this all happened to me), the pain came back. I felt it like an instinctual twang as I was taking my makeup off one evening and I looked at myself in the mirror and thought, "What was that?" I was confident that it was a flare and that I could deal with it. Ice packs, meditation, anti-inflammatories etc... and I lasted 26 days until I became a fragile, sobbing wreck. A flare has never lasted this long, normally it's between 7-10 days, but that's when I was under meds, so maybe I just had no idea and this was the level of pain under the meds and the 42 virtually pain-free days were just the last of the meds working its way out of my system.

    So, I ordered cannabis oil which I've been taking since Wednesday and it has calmed me down emotionally and it's also taken the edge off the pain, although the pain is not gone. And this is what is upsetting me - it's changed. I now have burning at the top of the sacrum where the nerve exits the pelvis and down the buttock as well as the pain I've always had that I described above. And, I can't do any physical activity because it just makes it worse! I'm also finding it difficult to sit down. I've had to change so many things and have been so patient with this medical problem, I've read Dr Sarno's book and I've done all of the other things I listed above and I cannot understand why this pain has come back and why it's become worse. Is this how neuralgia works? Does it change and get worse? And is it even neuralgia or is it in my mind?

    I'm at the end of my rope. If I have to live with this, fine, but not this way. No more trail running? No problem, I'll hike. No more tight pants (and by that I mean anything that isn't pjs)? No problem, I'll wear dresses and harem pants. No more tampons? Got that covered. Sex only when it's possible? At least it's not off the cards completely. But, more pain and in a different place and now no exercise at all and difficult to drive because of the pain? That's just asking too much. I had tried to stay positive by thinking that at least I can still walk and take in nature, I can still travel around with my kids and live a little, go on holiday....I just don't know what to do now and I'm so, so tired of this. So tired of the pain. So tired of the stress. So tired of not knowing and so tired of trying to convince myself that I can do this for the next 30 years of my life without freaking out.

    I also feel like I should just give up because I've been so proactive but I'm just not winning this war, am I? What now? So, as a last resort, I'm coming back to what I did before and hoping that something will work again. As I said, I read Dr Sarno's book and I remember saying to a friend that I was finding it difficult to read as it was making me uncomfortable and I didn't actually finish it. I'm going to read it again and I've also bought Unlearn Your Pain by Howard Schubiner on Amazon but it won't arrive for another week normally.

    I realise that I'm on a forum for the mind-body connection and that everyone here will tell me that I can get better with this method. I also realise that a lot of you will think that meeting a new man obviously had something to do with all of this and the fact that I found Sarno's book uncomfortable to read a good sign (and I really want to believe you), but I'm so tired and scared that I just don't know if I believe anything anymore.

    I'd love to hear from you all though and am looking forward to your thoughts. I'd also love to hear of similar experiences if anyone has any. Or similar paths even if the manifestation wasn't the same. Thank you so much for reading this far.
    starseed likes this.
  2. starseed

    starseed New Member

    Hiya, welcome onboard. Pretty new myself but I feel your angst and although I don’t have much knowledge on your condition I do have paresthesia which I’m working on. You can do a search on here for your condition on the wiki search engine as others have had pudendal neuralgia. I’m sure you will get lots of support. Best wishes
  3. LouVes

    LouVes New Member

    Thank you Starseed. Best wishes to you too!
    starseed likes this.
  4. Time2be

    Time2be Well known member

    First of all: welcome! I think you have already an understanding what this forum is about. And I really feel your desperation and anxiety.
    You had these infections in the beginning of this year and the pain stayed or is expressed in a different part of your body, you call it pudendus Neuralgia. I am not an expert on this, but I know that it is difficult to diagnose and that there are many misdiagnoses. If you haven’t been officially diagnosed or if you do not trust your first diagnosis, I recommend to get this done. A proper exam by a doctor is really helpful. There are TMS doctors who can evaluate your diagnosis, if you are in doubt.
    All sorts of pelvic pain have most often their source in muscle tension. And muscle tension comes from emotional issues. If it is the new relationship or maybe an old relationship that bothers you, I can’t tell. However, usually there is a reason why pain sensations linger if there is no clear structural abnormality.
    The anxiety you feel feeds the pain. You need to look at this. As many others here I listened to Claire Weekes (on YouTube, numerous talks). It from the 50s and 60s, but it is so helpful!
    I wish you patience and courage! Yes, you are right, we will tell you that you get better - because you do!
  5. BloodMoon

    BloodMoon Beloved Grand Eagle

    Hi LouVes,

    A warm welcome to the forum.

    I agree with Time2be, especially when she says:
    I too suffer with pudendal neuralgia-like pain (amongst other symptoms and types of pain) which has shifted from one area to another. 3 years ago the pain was 'burning' in nature and high up in my vagina and extremely intense for over year. Then I had a period of about 6 months with the pain being somewhat milder, only to suddenly suffer with anorectal pain, which was horrendous to start off with, but now fluctuates in position and in intensity...sometimes it radiates into my left buttock and down the back of my leg and gives me the shivers as it can be very sharp in nature. The mere fact that your pain shifts around is indicative that it's TMS, albeit the general advice is, of course, to always get yourself checked out before assuming that it's TMS...which is what you are doing.

    I recommend reading Ezer's success story for encouragement and to heed his warning to consider really carefully before ever opting for surgical interventions or other invasive treatments should they ever be offered to you: http://www.tmswiki.org/forum/threads/pelvic-pain-healed.8680/ (Pelvic Pain - Healed). I don't know that the way Ezer got better from his pn-like pain is for everyone (he discovered his TMS was due to not feeling his emotions on a day to day, moment to moment basis) because, from what I've learned so far from being on this forum, is does seem that we all have to find our own way to recover...Some have recovered from unearthing their buried emotions by journaling etc., others meditate like you did before, and some use affirmations and visualization techniques with success like ACE1 did; you can find his success story and tips here http://tmshelp.com/forum/topic.asp?TOPIC_ID=7664 (TMSHelp Forum - Recovery story with keys to recovery at the end).

    I'm not as yet free of all of my symptoms, but I'm making some progress. Something to make a note of re your symptoms is that you'll probably find that they are less, or even may disappear for a while, when you're engrossed in doing or experiencing something that you're enjoying - it's another sign and way to prove to yourself that your symptoms are TMS. Key to my believing that my pn-like pelvic pain is TMS was reading this book called 'The Psychology of Pain' by Dr James Alexander https://www.amazon.co.uk/Hidden-Psy...1540752626&sr=8-2&keywords=dr+james+alexander in which Dr Alexander elaborates more than Sarno did (and backs it up with some research references) about TMS pain being caused by the brain reducing the blood flow to our muscles, tendons and other tissues, which causes mild oxygen deprivation. Dr Sarno said that, although mild, this hypoxia can cause extremely severe and intense pain.

    If you want to get started on TMS work while you wait for your copy of 'Unlearn Your Pain' to arrive there's the Structured Education Programme on here that you could do http://www.tmswiki.org/ppd/Structured_Educational_Program (Structured Educational Program). Many people do both the SEP and 'Unlearn Your Pain', one after the other.

    I hope something I've mentioned might be of some help or encouragement to you.

    With all good wishes.

  6. savasana

    savasana Peer Supporter

    Check out Abigail Steadley. (not sure if thats how she spells her last name) she successfully healed from pelvic pain! you will too!

    You're going to be ok.

    Best wishes
    MWsunin12 likes this.
  7. LouVes

    LouVes New Member

    Thank you, Time2Be. I live in France in a remote Alpine village and there are no TMS doctors around here, nor would I know where to find one. But, my doctor seems to think that this is caused by stress and anxiety because all of the tests have come up negative. And yes, I agree that anxiety feeds the pain. I just wish I could find the on/off button...
    The new relationship is not the problem. He has been here through it all and still is and he's a wonderful man but I had one very trying and tiring relationship and another just disappointing one before having met this man. I really wish I'd met him earlier in life! I'm sure that I've dealt with thefallout from those two relationships - I feel like I'm always just trying to work through things and was happy to have finally gotten to a point where things were really good when this pain started. So, it's all a bit overwhelming for me.
    I will most definitely check out Claire Weekes when I have the time. Thank you!
  8. LouVes

    LouVes New Member

    Hi BloodMoon,
    Thank you for your message and I'm sorry to hear that you still have some pain. I do hope that soon yours will be a thing of the past. How long have you been working on the programme?
    I will take a look at the two links you posted and I wanted to say that I have started the programme. I'm on Day 2. It's early days but that's just another way of saying that it's better than no days at all!
  9. LouVes

    LouVes New Member

    Thank you Savasana! I can't find her...maybe the spelling is wrong?
  10. BloodMoon

    BloodMoon Beloved Grand Eagle

    I've been doing mind/body techniques for quite a number of months now, but I've only just finished day 5 of the SEP. I'm going to depart from doing the SEP at least for a while though, in favour of doing the mind/body work in Scott Brady's book 'Pain Free For Life' - as one of the people featured in the SEP said he owed his recovery to doing the work in that book...which impressed me.
    This is Abigail Steidley's new website https://abigailsteidley.com (Home - Abigail Steidley).
  11. JanAtheCPA

    JanAtheCPA Beloved Grand Eagle

    It's quite possible that there is something much much deeper going on with regard to relationships that has NOTHING to do with this individual. Going much, much farther back in your life. Some kind of negativity, some kind of fear, some kind of guilt or shame or event or issue or... ??? something, that your brain simply does not want you to uncover and face, because it thinks that to do so might cause your demise.

    It would not be at all fanciful of me to suggest that the fact that this new man IS so wonderful could be the trigger that started your current distress. Stranger things have happened in the dark depths of the human psyche, after all. It could be a very tangled web.

    Seriously, LouVes, your description of how much you have worked on the TMS theory, and the really great success that you have had, only to have it all come crashing down upon the start of a new relationship at this stage of your life, indicates that there is SOMETHING going on deep down. If it's buried that deep, you might need professional help to uncover it in a way that feels safe to you.
  12. LouVes

    LouVes New Member

    Hi Jan,

    I had a break-up with a man who left me for someone else in June 2015. I started having neck pain and upper back pain in January 2016. When I met my current partner, I was doing very well. I'd never heard of Dr Sarno and hadn't done any work on my pains other than seeing the physio. I was doing ok. The first three weeks with my current partner were great. I had no pain anywhere and then a got a UTI, vaginal infection and kidney stone all at the same time and once it had all quietened down, this chronic pudendal neuralgia was there. And still is. I took my meds for neuropathic pain and started trying lots of things to heal myself. One of the things was Dr Sanro's book which I didn't even finish because it made me uncomfortable and I don't know why.
    I stopped the meds and started mindfulness meditation and everything calmed down for 42 days and then it came back and now I'm here!
    I just wanted to put the timeline straight.
    Seriously, my current partner is the man I would have liked to have met when I was 20. He is a wonderful man but I am well aware that I got sick when he arrived. Now, it could be because of the three health problems and the fact that the doctors didn't find the kidney stone for 2 months during which time I was terrified because everyone kept telling me I was fine but I was in so much pain and thought I was dying. In which case it has nothing to do with him at all. Or, it could have nothing to do with that and everything to do with the fact that I am afraid of the commitment, afraid of losing someone wonderful, feel I don't deserve him....we could go on and on (I don't mean that I think these things literally but am suggesting that things like that could be the triggers when you meet someone new). Although, it's interesting in itself that I've said those three things, as someone else might have said three other things....
    Sigh. Long road ahead. But, I'm on it now and that's what counts.
    Lizzy and JanAtheCPA like this.
  13. LouVes

    LouVes New Member

    Thank you!
    BloodMoon likes this.
  14. LouVes

    LouVes New Member

    Good luck! I hope it works for you. Keep me updated.
    BloodMoon likes this.
  15. BloodMoon

    BloodMoon Beloved Grand Eagle

    Thank you, @LouVes...all good wishes for your recovery too! :)
  16. Time2be

    Time2be Well known member

    LouVes, I think Jan has a point here. However, maybe your emotional conflict is not so deep down and covered. Maybe it's simply fear of repetition (failed relationships) and your body reacts to the fear with pain. There is usually a reason for anxiety.
    Congrats to your doctor. He/she seems to be educated enough to see the psychosomatic dimension of it. That's very good! In this case you don't need a TMS doctor.
    Let us know how you are doing!
    And it sounds wonderful to me to live in the French Alpes!
  17. LouVes

    LouVes New Member

    It could be Time2be. It has been....eventful in the realm of relationships, to say the least. In my twenties, I chose someone who resembled my father to have children with. My father was irrational, prone to rages, selfish, patriarchal....I recognise now that I was just repeating patterns and gravitating towards what I knew. I left him when the children were 4 and 1.5 years old. We're on very good terms now, live 500m from each other and each have the kids every other week.
    Almost immediately, I met a man who was completely different at first glance. Much better suited to me. But, he liked the ladies a lot and in the five years we were together I think he regularly cheated. In any case, the message from him was clear - he needed more, all the time. No matter what I or the children did, we weren't good enough. And it was always our fault, no matter how irrational his behaviour. It was hard and I think he had some very challenging mental problems so I left. I didn't feel safe and I didn't want my children around him anymore.
    Then three years later, I met a man who was sweet, kind and affectionate, but didn't want to commit. The idea sent him running straight into the arms of someone he'd just met and three and half years later they're still together (they live far away from each other and - to me - I can see why that appeals to him. He doesn't have to make any real commitment). His last words to me before he left were "If we live together, I'll lose my independence". I must point out that we'd been together for 2 years at the time and out of the blue HE suggested us living together. The incentive did not come from me so you can imagine my confusion when he made the proposition, let me start looking for a flat big enough to accommodate him, me and our separate children and then did a runner a month later with someone he barely knew. That one really knocked me down for a while and, I admit, I'd just had it with men.
    At this point, I'm feeling a little dysfunctional. As in, what on earth is wrong with me that I cannot see that these men are bad choices? To be fair, I could never have guessed that number three would do a runner. He seemed like a good man - kind, respectful.
    Fast forward three years and imagine me in a really good place emotionally, I'm at a party and suddenly there's this man I've known vaguely for 20 years and we're having a chat. He's lovely and intelligent and interesting and funny. He asks me if he can phone me and I say ok. I go home and think that if he does, we'll see what happens and if he doesn't, it doesn't matter. No big deal. I'm used to being alone and it doesn't scare me. I actually like it, so whatever.
    He did phone. And it was lovely for two/three weeks and then BAM. UTI, vaginal infection, kidney stone and then chronic pain and I'm wondering what on earth my brain is trying to protect me from because I just want to get on with living my life with this wonderful, kind man who is lovely to me and my children and who makes me feel safe.
    I just don't know what to think.
    Last edited: Nov 1, 2018
  18. JanAtheCPA

    JanAtheCPA Beloved Grand Eagle

    Interesting how many sentences you wrote about your adult relationships. And less than one to describe your clearly dysfunctional father.

    One's ability, or not, to form healthy adult relationships is directly related to parental relationships.

    It always goes back to childhood.

    And I suspect you're going to say that you've dealt with that in therapy. And I'm going to say... probably not, not really. Not deep down, not where a little girl suffered the ultimate loss, bereaved of love and protection and security from a man who should have made a lifelong commitment to unconditionally love, protect, and cherish his child.

    Your brain has been protecting you from the worst of that abandonment for a long long time.

    It. Always. Goes. Back. To. Childhood.
  19. LouVes

    LouVes New Member

    Actually Jan, I've never dealt with that in therapy (cue the collective dramatic gasp from the horrified people reading this sentence) :eek:
    Ok, I'm not being flippant, nor am I pooh-poohing the idea because I completely agree with the fact that it always comes back to childhood. But, what is there to say exactly?
    He was a difficult man to live with, he drank too much, he had irrational behaviour that frightened us. He touched people inappropriately and thought it was charming to flirt with anyone in a skirt, right in front of his 3 daughters and his wife.
    I know this is what he was like and I don't fight it, I accept it. I make no excuses for him. He died when I was 21 and that was the end of the that. I got on with life. I'm not sure what I'm supposed to be saying about it other than what I've said above.
    I spent a lot of time as a child and teenager being angry and frustrated with his behaviour and angry at our mom for always taking his side and I KNOW that that is why I am very independent and very prepared to walk away from a relationship if it is making me or my children unhappy - because I don't want to be like my mom. She was dependent and submissive but she's not a bad person. She did what she could. What else is there to say? She's not perfect, just human and yes, I was angry with her for a long time but I've let it go now because it serves no purpose anymore.
    I don't quite know how to phrase it any other way. I've just let it go.
    And deep down, I sort of feel that what I'm going through now doesn't have anything to do with him. I'm 45 and I've had some very hard times that did have a lot to do with him, but I've made my peace with it over the years and through the hard times...or at least, I think I have. But yes, I could be wrong. Very very wrong.
    And you know, what should I be doing about him in therapy really? Crying? I've done that. Being angry about it and punching a pillow? I don't feel the need. I really don't care anymore. At some stage, one has to move on. I have. Does it always have to be done in therapy to be valid? Will everyone accept that I'm ok with it ONLY when it's been done with a therapist or is it a viable option that I've worked through it over the years and I've moved on?
    Do you see what I'm saying? All valid questions....and like I said above - I could be wrong. I'm open to that too.

    And the thing is that time will tell. I'm doing this programme and I'm putting in the work seriously. If I hit a bump that indicates "unresolved daddy issues - please see a therapist", I will. I will do whatever it takes, Jan.
    Last edited: Nov 1, 2018
  20. Time2be

    Time2be Well known member

    You had a difficult relationship with your parents - mainly because of your father it seems. And you ask what a therapeutic approach could do about it. One thing is that you learn how you really feel about the relationship. The anger and all other unpleasant feelings.
    My relationship with my parents is very problematic. My father is a very unfriendly, insecure, anxious but also violent man. In affect he once started to strangle me. This is something I tried to forget. But when I was at home 33 years later and he started shouting at me I felt very anxious and I the night I had a terrible flare. When I entered my room were I slept the immediately locked the door. I was that terrified. This is something you can tackle in psychotherapy. However, I had psychotherapy and I am still not there where this things don’t have this kind of effect on me.
    The problem is often how to learn new behavior and how to learn a new emotional setup.

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