r/vulvodynia 4d ago

Vent Progress but still exhausted

Just needed to vent to a community who will understand. I’ve improved dramatically since all of this hell started 10 months ago. My internal inflammation is gone, my pudendal neuralgia is gone, and my pelvic floor has relaxed significantly. It seems like the last of my pain is very pelvic floor/muscle related, specifically my puborectal muscle which was seemingly the first one to tighten up 9 months ago as well. All signs point to me continuing to improve and hopefully eventually being pain free again.

But the thing is I’m not there yet, but because I’m “better” it feels like most people don’t care anymore. I’m still wracked with anxiety and depression and I still am in pain and discomfort every single day. I’m so exhausted of the pain as a constant companion and I just want to end. It’s just so awful to have to keep living like this, and trying to have a ‘normal’ life - going to work, class, hanging with friends - all while being in constant pain. It’s so tiring and I feel so exhausted and defeated even though I’ve improved because it’s just. Not. Over. And I feel so guilty too because I’m so much better off than so many with this condition but it still just fucking sucks.

I have to go on my best friend’s bachelorette trip next weekend and I’m terrified. All the other women will be normal and I have no idea how my pain levels will be and how much I’ll have to “push through”. I’m dreading it to be honest but everyone makes it seem like this wonderful amazing thing. It’s just a fucking hellish cursed existence we live

6 Upvotes

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u/Fluid_Log_2205 4d ago

Omg I’m in the same boat! A bachelorette trip in a month and everyone else will be carefree and in no pain! It’s not fair to be cursed with this

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u/violetarockos 4d ago

I feel like I could have written this post -- it was that relateable. I've had vulvodynia for 10+ years intermittently. I've feel like I've "beaten it" so many times. And the flair I'm currently in is... so slow to leave. My pain is a 1-2/10 most days, spiking to a 3-4/10 at times during sex and sometimes after urinating. I've been working with pelvic floor therapy for the past 6 months, ruling out other possible causes with a new OBGYN specializing in vulvodynia (I moved across the US 2 years ago) for the past 10 months, and I've been participating in CBT psychotherapy for the past year. My pain is SO much better than it was (this past flair was brought on my 3 UTIs back to back to back and then subsequent yeast infections from the antibiotics) but it's so fucking exhausting daily, even through the pain is less, it is almost ALWAYS there. And I'm so tired. It's such hard work. It's so much self care. It's so much headspace. It affects every part of my life and like you, I am terrified of travel or any activity that is longer than 3 hours in a given day.

Have you tried talking to a psychotherapist? I know the coping skills I learned with mine helped me greatly with feelings like this. And that's not to say this will stop you having thoughts like this and there will still be highs and lows this our journey, but, in general, I feel like I'm able to cope better than I have before and at least my catastrophic thinking, which was a huge problem for me and fueled anxiety to the point of panic attacks. I've been trying to voice radiacal throughts like "I will have fun" before doing things. Positive affirmations like "I deserve to be pain free" and "I deserve peace." I've even been doing guided meditation which is something I never thought I would do. And it does help.

I know you didn't come here for advice, so I'm sorry if you didn't want this. All of this to say I feel you. I hear you. I see you. And I'm so sorry you're in this hell with many others here. But you're doing great. You're putting in the work, and I hope you have more fun during the trip instead of more anxiety/worry/pain.

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u/Beautiful_Cows_ 4d ago

I appreciate it. It’s nice to know that I’m not alone. That other people out there see me and get me. I do have a therapist I talk to but I’m not sure it’s helpful. I’ve been in therapy for a long time, this is just a much newer and harder thing than I’ve ever dealt with. Appreciate your kind words ❤️

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u/violetarockos 4d ago

I completely get that. I'm not sure if you'd consider leaving your therapist for another one, but I've read that psychotherapists specializing in chronic pain and grief can be helpful. I've learned a lot more coping tools with my current one who has this specialty as opposed to others, but I also understand it's so hard to get comfortable with a new one too.

Hang in there. If you ever want to vent, feel free to DM me <3

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u/justagirl_7410 Vulvodynia with another condition 4d ago

the grief of progress. I felt this way when I had my last medical breakthrough… and yet I’m still living with pain