I need some support… I’m freaking out.

So, I’ve posted about this in the past and I just need to remind myself that things are going to be okay.

back in sept of 2022, I experienced an irritant contact dermatitis from a antifungal medication. It burned the hell out of my vulva around my inner labia and vestibule. I was SUPER stressed out and scared and thus ended up being diagnosed with pelvic floor dysfunction and vulvodynia. However, accidentally, I healed from that burning pain condition. I was totally normal before this happened to me. I could have intimacy with my partner with no issues, and just was totally normal.

Then my next wave of pelvic issue came along. I had a very high alert, emotional reaction to my first pelvic floor physical therapy appointment… I was so scared that my PT would tell me I have lichen Sclerosus (a really scary genital condition that I found online in pursuit of finding answers with no known cause or cure, it causes itching, white patches and structural changes to the genitals). I went to the appointment and was diagnosed with PFD, however the very next day, I woke up and suddenly had itching.

a year and a half later, I still have it. I’m in a flare right now. I have an appointment with a vulvar derm in October but I am terrified that I have lichen Sclerosus. Every time I tell someone about my itching, they’re like “You need to get a biopsy. Sounds like lichen Sclerosus”. Which scares me more. I’ve been to many doctors and they always tell me they don’t want to biopsy me because they don’t see anything worth biopsy-ing. I check my vulva regularly and see no changes to my skin. No redness, no sores, no discoloration or atrophy. Only itching sensations that move around. Now it’s even in my rectal area (but I think that may have been because I was using wet wipes back there but have since stopped to see if that resolves the issue).

I am just so scared. Usually I don’t let these things bother me but I made the mistake of going on Reddit and asking a question and then having people be like “oh, sounds like you have lichen sclerosis” as if they want me to have it. It really upsets me. I panic almost every time I feel the itch coming on. It’s cyclical with my menstrual cycle, it comes on when I’m stressed or think about it and it’s been flaring up since I’m on my period and started at a new job. I also just started wearing pants daily again too as I had anxiety about anything touching my pelvic floor. The itching comes and go at random but lately it’s been almost constant and it’s messing with my mental health. I have all kinds of tests that come back negative for everything. The only thing I haven’t done is a biopsy but all of my doctors have advised against it because they don’t see anything worth a biopsy.

I want to believe this is TMS as I have had other mind body syndromes in the past (headache, knee pain, random nerve symptoms around my body, random itch sensations all over my body, itchy ears, urinary urgency, frequency and burning, tooth pain, anxiety, depression, etc), but this one has me in a vice grip.

the itch will go away if I tap the area and the spot where the itch happens won’t itch again if I touch the area. Much like when you get a phantom itch on your arm or something, you scratch it and then it goes away. I want to believe it’s just dry skin or my brain using the itch as a means to distract me considering how terrified I am of the itch and the idea of having this chronic pain condition…

I’m just having a moment of weakness… I want to feel normal again. My symptoms seem to go away when I drink alcohol though and idk if that means anything…

 

Recently, Dr. Schecter was interviewed by a Men's pelvic health therapist (someone who took years himself to figure out his own issues were TMS) and Dr. Schecter said that almost 100% of the clients he's had with pelvic issues have TMS.

It's OK to rule out the physical with a doctor but if you are chasing, seeing multiple doctors and ONLY going down the medical rabbit hole of course it's hard to believe it's TMS, because you haven't gotten the option in the past to even consider that it's mind body (I'm assuming).
The message above, you've related how you notice your thoughts and emotional state, stress and distress leads to more symptoms.

How you begin to see it could be something else is by beginning to do the TMS work and noticing any changes in yourself. That begins with changes in your thinking and mindset usually.

I can't tell you everything will be OK. That's not my job. It's YOUR job to take responsibility for yourself, to stop victimizing yourself by catastrophic thinking and take some responsibility and action to find a way to stop suffering.

How do you do this.

1. read a book by Dr. John Sarno who explains TMS and why it happens and tells you what to do about it. Self-education goes a long way.

2. THEN if you'd like, why not try the free Structured Educational Program here at the WIKI.

3. Because you are so terrified, I suggest you read Claire Weekes Hope and Help For Your Nerves; she is such an easy read and has amazing techniques to deal with anxiety and fear

Let us know how the work is going! We're here to help you manage through the work.

 

Do me a favor and don't ask questions or browse medical stuff on Reddit subreddits. That's exactly how I spiraled with my symptoms.

Cactusflower has given you 3 great tools to start the work! Good luck. We are here for you.

 

Maybe try Dan Buglio? He has a number of videos on freaking out and how to stop.

 

Yes… I know. I know that I’ve allowed myself to spiral and yes, I realize that I am acting as a victim. I’ve been going to psychotherapy for mind body syndrome, I have silently been working through the SEP, and I have been watching Dan Buglio’s videos and listening to curable and Nicole Sachs. I’ve been doing the work but I just had an extinction burst moment a few days ago with my anxiety and depression. I have another mind body syndrome called PMDD and it’s difficult to prepare for it sometimes. My health anxiety flares up during my luteal phase with other symptoms and sometimes I lose the battle between logic and fear. But I did work through this fear and now I am doing fine. But I wasn’t feeling safe a few days ago and the techniques weren’t helping at the time. I couldn’t pull myself out of the hole and I just had a weak moment, like I said. I don’t want to be put on meds and I am slowly getting better, I’m giving my nervous system all the time it needs to recover. I just got scared and was looking for support because I fell down the “I have a structural problem” rabbit hole and couldn’t quite pull myself out. But I go on here and read success stories, watch the resources and do the work. Even if I don’t state it. I’m taking it day by day. But yes, I still have moments of feeling traumatized by everything that’s happened and I’m in psychotherapy for it. Having chronic pain of any kind is life changing and trying to get out is a journey. A year ago, I thought my life was over. I was bedridden and couldn’t walk due to the pain I was experiencing and today I can exercise, do whatever I want, I can drive my car again, I started working again and I am doing a lot better. So, even though I don’t state it, I’m doing the work.

And honestly, until it was stated, I didn’t realize I was still thinking in the physical. Jan is so right. I need to tear myself away from that line of thinking. Sometimes I just need it to be pointed out because I can’t see the big picture.

Thank you to everyone who responded.

 

@GhostlyMarie - Look at all that progress! You are doing great! It’s a hard journey and some days are better than others.

 

Thank you! I didn’t expect to get the responses I got to my post. I was just scared and asking for help and reassurance. But I am doing my best! Everyone’s journey looks different!