Pelvic pain and weird nerve sensations allover left side of body

Hi everyone.
I believe this is my first post here.
I have been experiencing my symptoms for 2.5 years now.

I was completely healthy. I was 21 years old.

Then, I decided to get a copper IUD for birth control, because taking pills daily was annoying and I didn't want to have to remember. Well, this was the beginning to what I'm going through now.

The insertion of the IUD was painful, and I knew the pain can remain for a couple days. But days went on and on, turned into weeks. Also the one period I had on the copper IUD was absolutely awfully painful.

30 days after the insertion I went back to my gynecologist to check if the IUD is in a correct position, etc. Between the insertion and then, due to pain, I was doing some research as I was kind of worried as to why the pain is not going away. I read that the IUD might get displaced, even fall out, or perforate the uterus. I was afraid that maybe this was what happened to me. But I went to the gynecologist and everything looked perfect on the ultrasound. She didn't know why I still had pain. She gave me some antibiotics "just in case" I had an infection. It didn't help, so I went to get a second opinion.

The second doctor said that the IUD was displaced, and he took it out. The removal was a bit painful, and the IUD came out bent, which made me think that really something might have really been wrong with it. I remember feeling immediate relief when it came out, I don't remember if it was full relief though, I don't think so.

2 weeks later the new doctor inserted a hormonal IUD instead. I did it because I thought the copper IUD was the problem, so now with a hormonal IUD everything will be perfect. Well, the pain still remained. So after another 1.5 months I went back again to get it taken out.

And the pain didn't go away... So I freaked out a bit. Especially because a few days later I had a flight for a trip across the world. I went there for 2 weeks and was pretty miserable the whole time, because I still had pain, I kept thinking I have PID or something, I kept googling. When I came back to my home country, I went to another gynecologist and to my surprise, she said everything was okay... She again gave me some antibiotics "in case" I have an infection. Needless to say, that didn't help either and that's when I broke down completely because I didn't know what to do anymore.

So of course I went down all possible medical rabbit holes, went to probably 20 different doctors, had probably 20 different tests. The pain in the meantime kept just changing, spreading.

I believe I found out about TMS, neuroplasticity, sensitization etc pretty early on - probably less than 6 months into my pain. I tried to apply the techniques, I even had a great deal of hope when using curable. And I quickly got frustrated when it wasn't working, scared again.

I'm trying to apply these methods again now... But I feel like I've been through so much and I keep asking myself "why hasn't anything worked?" when I did have brief periods of time when I was not as depressed about my pain I think...

Currently, my pain is in my pelvis (low abdomen, pudendal nerve especially the left one, but also right, next to my left sitbone, clitoris), sometimes my legs hurt and I feel nerve sensations on them, such as cold, and I also have "weird nerve sensations" allover the left side of my body - in my face, shoulder and arm, leg. The nerve sensations are near constant, I sometimes catch brief moments when I THINK I feel normal... The pudendal sensations are also pretty much constant and get a bit worse with sitting, I also get these sudden stabbing, shooting electrical like pains.
I even have spots in my low abdomen where if I press, I can recreate some of my pelvic pains... That scares me a lot.

It all started with a stupid IUD and I can't forget about this. I'm scared because I haven't had a single day of no pain ever since. I think the pain is pretty much the same everyday, doesn't fluctuate much, and most often I see that people's TMS comes and goes so that's why I'm having doubts and losing hope that this can help me.

My theory is that I got so stressed out over the IUD and worried that it damaged something, that this put my nervous system in high alert mode.

But at the same time I don't understand why I also got NERVE PAIN and that it has not gotten better yet... It's been 2.5 years.

If anyone read my story and can offer some advice, feel free.

 

Hi, @GlitteringKiwi -

I think you are correct. Your fears about the IUD kicked you into panic mode and you got flooded with adrenaline. That can cause all those weird nerve sensations. And they’re scary! (I know, because I have them.) The books by Claire Weekes are phenomenally comforting. They explain what’s going on and how to soothe your nervous system. They are short books and very easy to read. They also come in audio.

But you also have TMS. (Most of us have sensitive nervous system systems and TMS, so you’re not alone.) TMS is a form of anxiety, actually.

You might be wondering, “Why did this all happen when I got the IUD?” Well, your brain picked that incident because it knew it would be scary for you and you would believe something was wrong. If it didn’t pick that it would’ve picked something else. Your issues were starting to become a problem in your subconscious and they wanted to bubble out to your conscious mind. Your TMS brain doesn’t want that to happen— so it got you all distracted with your body. It’s hard not to be distracted when all these things are going on!

But now you’re on the right track— and it’s— I hate to say —a lot of work. Some people cure very fast, but others have to do a lot of homework. Everyone who’s had to do a lot of work has always said that they wouldn’t trade it because of everything they learned about themselves and how much happier they are having done all the internal work it takes to feel better.

You are absolutely in the right place —so stick around here. There are so many good people who know what to do. You can get good advice and tons of inspiration! But ultimately you’ll have to craft your own journey.

 

I'm a 27 year old male so can't relate to your specific problem but I've been experiencing dizziness for over a year and a month or so ago I was doing face massage on my jaw, a few minutes later I got these weird sensations of dripping/bleeding in my head. These have been on going for 5/6 weeks, I've had burning in hands and feet and my legs tbh. I have weird nerve sensations that feel like rain drops hitting different parts of my body. Basically a whole host of weird nerve symptom's.

I've only just completed healing back pain and really only starting my healing but I wanted to at least comment to give you reassurance that others are experiencing these random weird sensations.

I totally relate to you being frustrated at the iud and wishing you never got it because I think the same, like why was I pressing so hard into my face etc. To be honest I think this is exactly our problem, we're still focusing on negative fear based things. Who knows if me pressing into my face caused my issue, and same goes for you. Maybe that's just were it appeared because that's where your attention was at the time.

I think it's important to look at yourself and be honest, do you over think, panic, stress yourself out, have you lived in fear? Because when I ask myself these questions , I know them to be true. So I'm terms of tms, people like me have been living their whole life suppressing emotions and at some point somethings going flare up.

It's hard going through this but I'll be happy to keep in touch with you, to offer support. I've really been struggling myself as I hate not feeling well (this is something I'm spending time on). But yea just know that others are going though similar things and we can support each other on this journey. Wishing you all the best

 

"It all started with a stupid IUD and I can't forget about this." I forgot to mention, start here. Stop torturing yourself by constantly reminding yourself that it was the stupid iud. You can't change the past and holding onto it with fear, anger, resentment isn't going to help you. Spend on this, remind yourself that worrying is only making things worse, accept the iud, and the pain and look at any and everything that you think could be causing your stress or anger and work through it.

 

I had the same experience when my pelvic pain started. Antibiotics were ineffective, but they ruled out infection.

I didn't have this many tests but I had a urologist that I was seeing at the time. I became disillusioned with the medical establishment that had no cure for me. I also found in my research that surgery was a likely outcome if I kept taking their advice, so I decided to explore other options.

What I found while following the Wise-Anderson protocol was that there were trigger points in the muscle tissue of the pelvic floor that would replicate the symptoms when palpated. Trigger points appear to play a role in generating the disorder somehow, but I abandoned physical therapy altogether when I started employing Dr. John Sarno's treatment.

I've had 16 years of relief from the pelvic pain as well as other TMS equivalents. The key for me was to get back to living again once I had the confidence in Sarno's diagnosis. The symptoms were being caused by my brain trying to defend against repressed emotions. Eventually I found some answers as to what the repressed emotions actually were with Arthur Janov's books, but Sarno's method was really what gave me my life back.

 

That's great to know. May I ask how long did you have your pelvic pain for and how long it took for it to go away? Was it also constant?

 

@GlitteringKiwi — don’t forget everybody’s different. there’s no way to know how long it will take for you to get better. so it’s good not to even ask these questions! It will only discourage you if you aren’t the same as someone else. Just do the work keep your chin up and know that you will get better. Try to relax while you’re working on it. I know easier said than done! But that’s what it is!

 

I know... But deep down I am still so scared, doubtful and tired of the pain. I don't want to write all about how awful it is, not to be depressing. But anyone who has/had chronic pain, one that's constant, and in a delicate area, can probably understand how exhausting it is to deal with it for years.
I know the way out is to calm my nervous system and find safety. I know it takes time to rewire neural pathways that are sensitized (I think I am sort of a believer in a hybrid of emotional and neuroplastic pain?). But I'm just so afraid that it really is something that won't go away, because it's already been 2.5 years. I keep seeing people getting better sooner, or sometimes if they had symptoms for years like me, usually their symptoms weren't constant, 24/7. That scares me and I'm still searching for stories similar to mine I guess.

I feel like I never actually 100% committed with full belief to the emotional work. I don't know if I'm capable because of how scared I am. It just feels too real and is too daunting.

 

Just want to bold this because it's important.

 

@GlitteringKiwi
Hugs! I hear you! I’m just going to be honest with you. I’ve explored all angles of how to heal from TMS, including the neuropathy strategy. I think the Sarno method is more empowering. You take action, you explore your emotions, you challenge your symptoms by living anyway despite the pain. With the neural pathway method, you are passively waiting for these new channels to build in your brain.

Nobody really knows all the answers. I know the neural pathway method has worked for some people. That’s undeniable. But I also think there’s a risk of wasting time while you’re waiting for these neural pathways to develop. I have extremely debilitating TMS and I’ve had it for four years. I’m somewhat housebound, although I’m trying to fix that. Just like you, I was frantic for relief. So many mornings I just wake up and think I can’t possibly do this another minute. But at some point you have to shoulder the reality that emotions have caused this. You have to find what is causing the rage and turn it off. You have to do the homework even though it’s excruciating sometimes.

I took the ACES test that Jan mentions earlier in this thread. Did you take it? I scored a six out of 10— which means my childhood was pretty bad. That kind of impact affects your whole life. You can’t just lay down and quit, because it will basically destroy you. You have to find something inside you that makes you willing to fight— and that includes doing the therapy, doing the journaling, doing the self discovery that it takes to change everything needed to improve your life and make your TMS brain turn this off.

It’s a journey. It’s not a switch that can be thrown. If I told you the only way you could get better is to take a very, very long hike with a very heavy backpack, but there’s no alternative. Would you take the hike to save yourself? I decided I would. I’m 65. I really don’t have a lot of time to waste feeling like this. But however long it takes— the day I get better, it will all be worth it. Slowly slowly, things have been getting better for me over the past year. And there were so many days I didn’t think it would. Many of the people that have quick cures— or neuropathway cures, have symptoms recur later on. Then, they come to the conclusion that they have to do “The Work.” Don’t waste any more time; just get down to it. It honestly won’t kill you any more than you’re already in misery. Start digging your way out. ❤️

Have you considered the structured educational program? It walks you through a lot of self discovery. It seems to be helping quite a few people. It could be a good place to start. Also: If you go to page 139 of The MindBody Prescription by John Sarno, in that chapter, he lists a detailed way to start digging out.

Trust me; I’m in the thick of it with you! As so many of us are here on the forum. TMS is not for the faint of heart. But, the truth is what other choice do you have? This is the answer. You are really blessed to know the answer. Don’t be afraid— there is nothing from your past that can kill you —no matter how horrible. There is no change you have to make that’s impossible to make. Just put one foot in front of the other. Do it one day at a time. Fight to get your life back!

 

The symptoms started when I was 17 and they were constant. I was really messed up for about 3-4 years if my memory serves, and I collected many accessory disorders as well like tinnitus, migraine headaches, jaw pain, sciatica, anxiety symptoms, etc. I read Dr. Sarno's book, The Mindbody Prescription when I was about 21 and the pain was resolved within a few months. That was 16 years ago.

My testimonial is here: Chronic Pelvic Pain Syndrome - 16 Years of Relief, Routes into the Subconscious. | TMS Forum (The Mindbody Syndrome)

 

This is the best Sarno book in my opinion! Thats a great success story!

 

I was surprised—your symptoms are so similar to mine. I have pudendal nerve pain and pain in the sacrum, coccyx, and lower back. I also have nerve sensations in my legs, feet, arms, hands, and face, just like you said. When I touch my lower back, the pain reflects in the pudendal area—vagina and anus—and I also feel nerve sensations in other parts of my body. We also have in common that our pain started with what seemed to be a real injury. My pain began after forced penetration, a sexual assault. So the big question is: did our real injury turn into learned pain?

We both experienced intense fear around our symptoms. Honestly, I recommend that you approach the pain as TMS, because if you’ve been in pain for two years, it’s worth trying. A nerve injury typically heals in six months or maybe a year—but not all injuries do. Still, I believe there’s a good chance you have TMS. If you want, you can read my full story—I explain it in more detail https://www.tmswiki.org/forum/threads/after-a-sexual-assault-i-started-experiencing-pudendal-nerve-pain.29533/ (After a sexual assault, I started experiencing pudendal nerve pain.)
.

 

I have a friend who healed from pudendal nerve pain using the TMS approach, and he also had leg pain. The difference from our case is that his pain started due to stress, while ours apparently began with a real injury. But both of us were very worried at first about having some kind of damage—you were really concerned that the IUD had caused harm, and I felt the same way after the assault. It’s possible that this fear maintained our symptoms and triggered TMS, and that the brain learned the pain through neuroplasticity.