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Stage 4 Endo/DIE/Severe Neuropathy/Dissociations - Help -

Hello all, I am finding myself here after another sleepless night and concerned about what my next steps will be - I was diagnosed a few years ago after living with stage 4 endometriosis and adenomyosis for the majority of my life. I am now 42, I have lived a very active life until I reached a point where I could no longer stretch or twist without internally pulling and tearing. I had a major radical hysterectomy at 40 removing everything (apart from my right ovary which was still viable) including my cervix. I had multiple large cycts removed in addition. I have no children, but believe I had a miscarriage in my late 20's - this is the first time I've ever spoken or written about it. I didn't realize after the de-bulking of my reproductive organs and my visible endo growths and lesions that had wrapped around my left kidney ureter and pulling down on my bladder that I would suffer extreme nerve damage in my lower back, abdomen, and legs. I've done pelvic floor therapy many times - about to be going back for aqua therapy, I have routine abdominal wall injections every three months and rotate between steroidal and localized anesthetic which block pain receptors in my illioinguinal nerve. I have recently been referred for pelvic floor injections which I am very much looking forward to as my abdominal wall injections don't seem to be working as well as they did when I first began having them a year ago. My pain is so bad that I frequently (now daily) have dissociations caused by my pain - I have been on a prescription of opioids for the past three months that help reduce my dissociations but this is simply a tool and I don't want to be on them long term, I am trying to get in to see a pain psychologist, and consistently do art therapy which reduces my pain as well, but when it is in a major flare I am at such a loss and the pain overwhelms me. I have begun using a cane to help stabilize me as I walk, but my life activity has been significantly limited to what I can do which is not much these days. I have done everything from anti-inflammatory diets, every natural remedy known to man (that's probably a slight overexertion) to cbd rubs and edibles but because of my medications can't do the thc anymore - I have several comorbidities. I am currently on 120 mg of Duloxetine which helps with my nerve damage, my major depressive disorder, and my functional neurological disorder - drop attacks, lack of muscle control, and seizures, I am also on 15 mg of norethindrone, and propranolol. When not taking the opioids I take clonazopam sometimes to help reduce my panic attacks. I was the girl who never took anything but the occasional ibuprofen and primarily used naturopathic and homeopathic remedies. I have learned to lean on an allopathic approach in addition to naturopathic and osteopathic medicine in combination. I am scared as I can't seem to escape my pain and my dissociation have grown more intense. I have a therapist and I am becoming a mental health practitioner myself. I am deeply saddened by what has transpired and while I try to be so optimistic I am struggling. Any encouragement, tips, suggestions and advice are welcome. I am eager to learn of things that perhaps I have not tried before and pray for sustainable relief daily.

  1. Hi , thank you for your raw and honest story. Your resilience is truly something to admire. I'm so sorry you've been suffering with unresolved pain for such a long time. Please know that you're not alone in this. We are here to support you on your healing journey. Your desperation for relief is something that so many of our members can relate to, so feel free to reach out any time you need listening ear.

    I can understand why you feel nervous about using opioids as a long term solution. I think it's wise of you to search for alternative options. I hope the pelvic floor injections are successful! Please keep us updated.

    I wanted to send you a couple links from our community page that I think you might find helpful. I hope you they can give you some answers.

    Complementary and Integrative Therapies for Endometriosis - https://endometriosis.net/complementary-alternative-treatment

    Chronic Pain and the Brain -
    https://endometriosis.net/living/chronic-pain-brain

    Managing The Pain of Endometriosis -
    https://endometriosis.net/chronic-pain

    Sending healing thoughts <3
    - Kat (Team Member)

  2. I am so sorry you have had to carry so much for so long. I remember feeling overwhelmed when pain started affecting normal parts of life, and it can be really hard when you have already tried so many things and still feel stuck. I hope you find something that gives you even small moments of relief because living with this level of pain is exhausting.

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