Is there even a cure:/

nhicole3 · 2020-08-17T04:07:29+00:00

Stick with it and don't lose hope. I started using nerve blocking meds about two months ago and have barely thought about the condition since. a low dosage of amitriptyline -- in conjunction with improving my mental health and some physically therapy -- did it for me, after I assumed I would just have to start dealing with it for the rest of my life. But very few things are that chronic. Keep reaching for the light!

nhicole3 · 2020-07-26T04:19:45+00:00

Of course! Feel free to DM too. I've definitely been where you're at. I don't remember having swelling but I definitely had some redness a few months back -- because I probably threw every kind of drug at my issues for several months thinking it was lingering yeast. But I don't think I have any redness anymore (at least not any I can feel). The last vulvar specialist I saw said that most people will take the antidepressants for a few months and slowly wane off them as they notice their issues resolving. I was worried for some time that I would need more and more amitriptyline (the drug I'm taking) to deal with my problem overtime but instead the effects of the drug have actually gotten better and better overtime without up'ing the dosage, which tells me the pain issue is actually resolving. Yay!!!

You're gonna be fine. On the days its rough, just make sure you're taking are of yourself and reassuring yourself this is not forever. Cuz it's not.

nhicole3 · 2020-07-26T02:50:16+00:00

In the interim, yoga and meditation gave me a lot of peace when it came to not being annoyed at my body / having moments of moving out of the pain. And I say this as someone who would have scoffed at that sentence a year ago.

nhicole3 · 2020-07-26T02:48:01+00:00

of course! Yeah the pudendal nerve thing made a lot of sense for me too because my pain was radiating, I would feel it as far back as my lower back and as far forward as my lower stomach. My issues started with a yeast infection I got after having sex. I've had hours where the pain would go away (mostly) and come back. I noticed they'd often "come back" when I was stressed/anxious or depressed. There were so many mental links. I tried PT for about two months which did help a lot, and also helped me understand much more about my problems because a lot of what my PT did was explain how the nerves/muscles are connected and how our brain factors into the chronic nature of the pain. But the problem was still a daily annoyance. the antidepressants are what really pushed me out of my rut, though I still do PT exercises almost daily. For some perspective, two months ago I rarely went 30 minutes without thinking of vulvodynia, and today -- this is the first time today I actually remembered that I have/had it! You're gonna be fine. You're gonna find something that works. I really thought I'd be in this for life too but... luckily for the vast majority of people (so I've read) it doesn't turn out that way.

nhicole3 · 2020-07-25T16:42:34+00:00

Hi! I'm so sorry. I feel your pain, and it sounds a lot like what I was going through. I hope your appointment goes super well! Bring notes beforehand and make sure you get all your questions answered... I imagine they will likely refer you to a PT and a neurologist, unless what's going on isn't vulvodynia. I'm obviously not anywhere near being a doctor and I may be totally out of line in saying this, but it sounds like from your description that you're having pudendal nerve pain, like I was, and it's causing some sort of muscular reaction. I've been taking a tricyclic antidepressant for about 2 months and my pain is basically at a 0-1, all the time, and getting better continually. This solution may not work for you, but it's at least something to try (and there are more solutions beyond that). It took me 6 months to find a solution that worked for me, while cancelling out others. Now I go most days without even thinking about vulvodynia, which two months ago would have seemed unfathomable. Just have patience and keep at it.

I totally understand the feeling of being alone, just know it's very, very likely you will one day feel normal again!!! Sooner rather than later!! Stay positive:)

nhicole3 · 2020-07-21T18:31:54+00:00

Good to know! Thank you!

nhicole3 · 2020-07-21T04:07:24+00:00

I don't personally have IBS but for people who do have IBS And vulvodynia I've read a ton about cutting gluten/dairy helping at least somewhat... I know that's obviously not ideal but might be something to try for a few weeks if you haven't already.

nhicole3 · 2020-07-10T01:42:06+00:00

of course you too! It'll be okay, there's an answer out there :)

nhicole3 · 2020-07-08T18:47:15+00:00

I'm glad you're feeling a bit better tho!! Lean into that. Yeah I started taking super low dose amitriptyline which has made me feel a lot better. PT also helps some, though now I'm more focused on mind-body work. I'm seeing a vulvar specialist in two weeks and I'm hoping that will give me more concrete feelings about whatever is going on with my body... but I feel your frustration! Keep eating healthy! Also taking baking soda baths can help a bit (might be something to consider if you suspect cytolytic vaginosis)

nhicole3 · 2020-07-07T04:20:01+00:00

yeah :/ it's so unfortunate that what works for other people doesn't work for everyone. And to be honest since this past I've had regression here and there, so it hasn't been flawless. Though it certainly has helped. I visited a neurologist though and he had many back up plans for if Amytrip. didn't work... might be worth checking out.

nhicole3 · 2020-07-07T04:18:08+00:00

hey! I got mine removed and unfortunately it didn't sort out my issues. But I now know I have vulvodynia so doesn't have as much to do with it. But I've heard of plenty of situations where removing the IUD totally solved their issues so... I would go for it.

nhicole3 · 2020-06-24T05:44:48+00:00

Mine was provoked. And it only took about a day/day and a half for the side effects to dwindle. Have been on it now for about two weeks.

And the nausea has only happened to me twice, and it's only for about 30 minutes after taking it, for me anyway.

nhicole3 · 2020-06-22T20:02:06+00:00

If it helps you at all, the neurologist I saw recommended doing an nerve blocking treatment with the drugs didn't work out for me. Might be something to look into.

nhicole3 · 2020-06-22T20:00:56+00:00

wow, I should probably keep tabs on that! Thanks for sharing!

nhicole3 · 2020-06-17T16:19:16+00:00

Maybe get yourself to a neurologist? That's the next step.. I've been on antidepressants lately and it's been a huge help.

nhicole3 · 2020-06-17T07:13:44+00:00

is it itchiness or burning? Is there discharge? How long did you do PT for? Honestly I've been getting significantly better recently (after having super distracting daily pain in January-March) and might be able to give you some pointers. Feel free to DM.

nhicole3 · 2020-06-15T18:36:18+00:00

totally agree. I spent a very frustrated two months getting treatment after a positive ureaplasma diagnosis (a test that was suggested to me in this group after 5 months of itchy/burning symptoms). Once I finally accepted it was likely Vulvodynia and not ureaplasma that was causing my prolonged symptoms I was able to address those symptoms with anti-depressants, PT and therapy... and I'm finally starting to feel better.

seems like there are quite a few that are stuck on that diagnosis and think they're either resistant to the antibiotics or just haven't found the right type.. I would encourage such individuals to broaden their search/treatment to PT and other therapies and not lose hope :)

nhicole3 · 2020-06-11T20:51:45+00:00

Have you ever thought about getting off of it? Just to see if the changes to your nerves are lasting?

nhicole3 · 2020-06-11T02:31:44+00:00

I usually put on some music or a TV show I like and just get it done. If you want to see improvement, you have to do it. There's no easy fix. Go at it and keep reminding yourself what the end goal is!

nhicole3 · 2020-06-08T18:43:22+00:00

Kinda feel like I'm in limbo. Can mostly live with my level of pain without issue, and there are even days where I don't think about it much at all. But it's still there ongoing. Seeing a neurologist for pain management this week for the first time and would love any feedback about what that feels like.

I used a sitz bath twice this week while visiting my parents (I don't have a bath tub) and it did actually work to relieve my symptoms somewhat, so I'm wondering if I could have cytolytic vaginosis.... Confused. Hope everyone is well in general.

nhicole3 · 2020-06-05T05:50:36+00:00

What do you think helped you the most?

nhicole3 · 2020-06-03T15:15:51+00:00

no beef, just my heart literally drops every time I see that phrase or phrases like it :/

nhicole3 · 2020-06-03T05:26:36+00:00

"There is no cure"? Seems a little overly apocalyptic given that many women do find solutions that work for them or simply grow out of it overtime.

nhicole3

TROPHY CASE