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Levator ani syndrome, pudendal neuralgia or tms?

Discussion in 'General Discussion Subforum' started by nml, Mar 30, 2021.

  1. nml

    nml Newcomer

    First, I apologize for my poor English.

    I'm 28 years old woman from Finland. In my country tms seems to be a condition nobody knows about so I've been searching answers from this forum and I've read many stories that sound exactly like mine.

    I've been in pain for almost an year now. It started suddenly, in one night, without any good reason. I was living stressful times and developed bad anxiety disorder. So the case is constant pain in my rectum and tailbone too. It's getting worse especially when sitting but never disturbs sleeping. Also drinking alcohol seems to be a way to get rid of this pain for a while. Last spring - when this started - the pain was horrifying. One time I fainted because of my pain and my boyfriend took me to hospital. I was afraid of endometriosis cause this pain started 4 months after I stopped taking birth control pills that I took for almost 14 years. But the gynecologist said that this kind of pain doesn't match with endometriosis. Also nothing was wrong in vaginal ultrasound and the pain didn't follow menstrual cycles etc. The doctor mentioned levator ani syndrome as one of the possibilities causing the pain. After that I went home. Sometimes pain was worse (the most difficult pain lasted about 30 minutes at a time but never went fully away expect at nights) and sometimes there were days or weeks with only mild pain. Sometimes there's also electric shock feelings in my rectum, vagina and urethra. Sometimes I feel knife-like pain when urinating. One doctor mentioned also pudendal neuralgia because the symptoms match quite well with that.

    I've seen almost 10 different specialists. Nothing in gynecologist examinations (I've seen 5 gynecologists because I couldn't get rid of the fear of endometriosis) , nothing also in mri pictures of brain, pelvis or spine. Nothing in blood tests and enmg-test. Everything seems to be normal. The only "finding" was quite tight anal. Still I'm suffering from this every day. My anxiety is getting worse and the pain seems to follow my feelings; it's usually worse when I'm stressing more or feeling really anxious. It feels like I can't relax my anal spinchter at all, even when trying. When in pain, I'm truly afraid of endometriosis, even though I know my symptoms don't fit in that syndrome and I don't have the most important symptoms of endometriosis. And when I'm afraid of endometriosis and start to think of that, the pain is getting worse. That's one hell of a cycle I can't get rid of.

    I'm taking pregabalin and amitriptylin for my pain, also sertralin for my anxiety and depression. Nothing helps. Luckily it's not as bad as it was last year and the electric shock feeling comes seldom. Oh and there's also muscular fasciculations in my whole body every day. That started about a month later the pain started.

    So I'm starting to believe I have tms. Cause there seems to be nothing wrong with me. Could it be possible? Pudendal neuralgia, levator ani syndrome, tms... Nobody seems to know. So I'm asking your help. What should I do next, what should I think?
    Last edited by a moderator: Mar 31, 2021
  2. JanAtheCPA

    JanAtheCPA Beloved Grand Eagle

    Hello and welcome, @nml. The answer to your question, strange as it may seem, is YES - absolutely this can be true. Many of us have experienced this truth for ourselves.

    There is a book by a medical doctor from Oregon, Dr. David Clark, MD, titled They Can't Find Anything Wrong. Dr. Clark is one of the founding members of the PPD Association - a group of health professionals dedicated to expanding awareness of and treatment for mindbody disorders - the disorders that we on this forum still call TMS in honor of Dr. John Sarno, MD.

    Although they are probably not available in Finnish, your English is obviously excellent, so I would recommend reading Dr. Clarke's book, or one of Dr. Sarno's books - I like his last one, The Divided Mind (which includes six chapters from other medical or mental health professionals) or the one before, which is The MindBody Prescription.

    Either of these books will give you the general knowledge you need to decide how to approach your symptoms. You can also start working on the free Structured Educational Program (SEP) which is on our main wiki. There is no commitment or sign-up needed, and the program is divided into manageable daily programs that don't take too much time.

    Good luck,

    nml and Ellen like this.
  3. Ellen

    Ellen Beloved Grand Eagle

    I agree with Jan. Sounds like it is very likely TMS. The best thing is to jump in and begin reading about TMS and doing the SEP. I also suggest reading the Success Stories on the Success Story sub-forum.

    I once had a diagnosis of endometriosis, which followed with a hysterectomy. After that I was symptom free for about 6 months, but then developed fibromyalgia. My TMS symptoms just morphed into something else, which is common. You can read my Success Story by clicking on my profile.

    Let us know if you have any questions or need support. We are all here to be helpful and supportive.
    nml likes this.
  4. Mars497@

    Mars497@ Peer Supporter

    Hi @nml - I struggle with this too but I have found it only comes when I am very stressed. Things that help me are staying hydrated as I’ve found constipation can trigger it. When it hits in the night, don’t get up. Don’t sit on the toilet either. Just try to calm yourself, keep water by your bedside and drink some as you try to sooth your reaction as I know how frightening it can be. It always passes. I have also found magnesium supplements help me tremendously. Magnesium glycinate specifically. I have diagnosed severe endometriosis through laparoscopy and although it may exacerbate it (maybe?) many men suffer from this so my guess is it’s just a manifestation of our stress and anxiety.
    I hope this helps.
    nml likes this.
  5. nml

    nml Newcomer

    Thank you all for the answers. I think my obsession with endometriosis is the main reason I can't get rid of this pain. Even tough I know I don't have the main symptoms of endometriosis (there's no need for medication for period cramps and pain doesn't start before bleeding or last more than one or two days, for example) and I developed this too suddenly. The clear mri picture is the also quite strong proof that I'm wrong (among untrasounds etc) - still I'm keeping my mind and fears and don't even know why.

    I think the healing process would start immediately if I trusted there's nothing to do with endometriosis. I can list all of the reasons why I'm wrong but still can't go on. So frustrating.

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