Frustration, Grief, and Navigating Invalidation from Doctors

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  • #47879
    Emma
    Participant

    Hi, I’m new to the Forum. I’m in my early 20s and I’ve been coping with sciatica for 7 years now. It’s the main reason why I’m here, although I’ve got some other things going on too (unexplained episodes of chest pain, painful periods, depression, social anxiety, and OCD). My pain is not constant and that’s really lucky. But when it’s bad it’s BAD and my main issue is—I just want to know why this is happening to me. I was not in any accident. I’ve had an X-ray of my lower back and hips and Doc said everything looked normal. I’ve been to physical therapy but the pain just comes back. Maybe I’m too soft spoken or I downplay my symptoms. The sciatica flare ups seem to coincide with menstruation, but they also seem to be triggered by lack of exercise or over-exertion. I’m still looking for my Goldilocks exercise routine. There doesn’t seem to be a lot of info circulating that relates sciatica to menstruation. During my last gynecological exam I was told, “huh, that’s weird. Your uterus is inflamed.” No action was taken to treat the inflammation or gather more information as to why my uterus was inflamed. My periods have been painful since I began menstruating. I get hot flashes and cold sweats and the cramps are unbelievable. Sometimes they respond to over the counter pain meds, sometimes they don’t. I would have to miss school when my period started. My teachers said my face turned grey. I would carry myself to the nurses office, curl up, and wait for my parents to pick me up. Then I would crawl to bed and alternate between kicking blankets off and desperately pulling them back on as I burn myself with a heating pad and wait to be unconscious. Once I happened to be in the ER for psych reasons when my period started and I fainted. The nurses said my blood pressure had dropped significantly when they re-measured me afterwards. I don’t know. At this point I just don’t want a uterus anymore and I wish I could cut off the leg affected by sciatica because I can’t move anyways. I know that’s silly but I’ve read that self-harm thoughts like this are not uncommon for people who struggle with chronic pain. I’m just… angry. And sad. I’ve lost so much time to my pain and I still don’t know what’s behind it. I just want a diagnosis. I just want treatment beyond yoga stretches and over the counter drugs. I want a doctor who’s just as curious about the root cause of my pain as I am. Why don’t they care? I don’t understand. I must not be communicating well enough.

    Oh my, that was angsty. Thanks for reading. I just don’t want to be alone in this.

    #47880
    CarolinaHarry
    Participant

    Hello Emma,
    I am so sorry to hear how much you have been suffering for so long with your pain.

    I have been suffering with sciatica symptoms for about 2 years but I now feel I am on the slow convoluted road to recovery.

    Rather than saying too much here, I would suggest you listen to podcasts by Nicole Sachs , or her videos on YouTube.
    So much of our suffering is exacerbated and sustained by our emotions.
    I am a professional therapist and my experience working with people over many years has illustrated this to me many times over~ but I never applied this awareness to myself until I was faced with daily incapacitating pain. My issue is that I cope very emotionally to flare ups which delay my recovery.

    It doesn’t hurt to listen to alternative views about our pain, especially if you have had no real explanation from the medical profession so far.

    I wish you all the best ~ with love, Caroline

    #47882
    Lc
    Participant

    Hi Emma, welcome to this site, there is also lot of info,at the top of this page highlighted in blue have a look under pain relief and resources. also would recommend you get yourself under a Pain Clinic, as they would be able to help further in your diagnosis and get your pain under more control ,than a GP can. Just ask your GP if they could refer you to a Pain clinic. it is hard to live with pain and even more so when there is no actual diagnosis, which can play havoc with your way of thinking and emotions. over the 23+ years I have been suffering and been going round in circles through the system. have learnt to use all the tools through pain clinic /management CBT and mindfulness and alternative methods ect ect. have learnt to stop chasing rainbows and except that this is how I am and cope and deal with it as best I can. and with the intense therapy I had about 7 years ago learnt to let go and live in the here and now without judgement within myself and others, in a be kind to yourself way. That doesn’t mean you should stop fighting, to find what your problem is , as with a diagnosis it helps you find the right treatment with medication and other methods to be able to deal with it all better. take care for now and best wishes ,Lee

    #47884
    Emma
    Participant

    Thank you both, Caroline and Lee!

    I’ve definitely been having a really emotional reaction to my pain lately. It’s probably not helping my muscles or my breath. Sometimes I joke to myself about how unreasonable it is that I should expect to be able to stand up from sitting or walk 5 ft. And those jokes help because they are silly—of course it’s not unreasonable to want to be able to move. I think I need to nurture that sense of humor more. But also, I do need to stop chasing rainbows. Or rather, I need to progress further along the path toward radical acceptance. Right now I feel like I can’t accept my pain, or my reality; like I can’t accept the lack of meaningful medical care I received as a kid. That’s a lot of resistance and it’s hurting me. But I know acceptance is on the horizon, and I’ll get there some day—little by little.

    Thank you for the podcast recommendation. I will definitely check out Nicole Sachs. I watch YouTube videos from Jessica Kellgren-Fozard sometimes and she helps.

    This might be kind of stupid but I didn’t know you could just ask to be referred to a Pain Clinic. I guess I thought I just kind of had to wait for my GP to come up with that idea on their own. Can you just straight up ask them? Should I phrase it or preface it a certain way? What if they say no? Do I have to have a referral?

    I’ve gone through DBT and that has some CBT qualities to it but more would probably be good. I have a therapist now. We’ve been focusing more on interpersonal issues lately but I want to make more space to talk about my physical pain with her too.

    Thanks again for your advice and for understanding, friends. I really appreciate it.

    #47885
    Helen H
    Participant

    Hi Emma,
    I can really relate both to feeling marginalized as a woman patient, and having pain with no definitive cause. I am 52, and have had chronic pain on and off for years, and constantly for the last 6. I still can’t believe that there is nothing on an xray, haven’t had an accident etc to explain it. I remember asking the consultant if I was a freak, and was really shocked when he said that chronic pain for no apparent ‘problem’ was not uncommon.

    I do hear what you say about not feeling heard, and wishing you could remove the parts of the body that are in pain. Unfortunately when you express this to Drs they will just presume you are depressed rather than reacting to intense pain. In my experience GP’s often don’t know that much about how to manage chronic pain.

    Re fainting etc, (if you have had everything else checked), it could be that you have a form of POTS , which i have. Essentially it is when your blood pressure drops suddenly and you faint unexpectedly. Dehydration,hunger, heat and stress can all exaserbate. It is usually managed with electrolytes and other measures.

    I am happy for Jan to give you my email, if you would like more info, as it is not really pain related.

    Best wishes
    Helen

    #47886
    Lc
    Participant

    Hi Emma,Helen as thought of another reason it might be. I would not know. As you have been like this for many years ,just lay your cards on the table with GP and say that you have heard of pain clinic and as you cannot really keep my pain under control with no actual diagnosis, and you feel that it would be best for some sort of in depth investigation as to why all this is happening and to get pain under some control could you please refer me to a pain clinic. If your GP says No. then ask why not. and dont let them fob you off. and just say you want some sort of investigation into why I get all this pain, to get some understand as to why, so you can get the help needed to control all this better. and think that pain clinic could help me better, than the last 7 years. and feel like you have had not much help.
    You could find your nearest pain clinic by searching the web and get their number and try giving them a ring directly and tell them your situation and see if you can get a consultation with them, but they may say you need to go through GP tell them you have tried but they wont refer you. But If this is the case just keep badgering GP for the help. As pain clinics can do more than what a GP does and get you to pain management CBT, psycho therapy,medication reviews. what ever you need to help you cope and deal with your situation.
    take care and best wishes, Lee

    #47893
    Jan Sadler
    Keymaster

    Hi Emma

    There are two pages on my website that may give you more information and advice and also a ‘Diagnosis Check List’, link to it here:
    https://painsupport.co.uk/wp-content/uploads/2014/11/diagnosistipsandchecklist.pdf

    Pain Clinics and Pain Management Programmes

    Getting the Best Out of Medical Consultations

    #47911
    Aurora
    Participant

    Hi Emma
    What you are suffering from sounds very much like Endometrosis. You need to be seen by an endo specialist . I can totally relate to the very severe pain you are describing relating to your periods. I have had three surgeries the last one in November. You really need to be seen by someone at a specialist centre. Endometrosis Uk runs a helpline their number is 0808 808 2227. General gynaes don’t have the expertise to deal endo. Give them a ring and they can help put you in the right direction.
    Xxx

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