New Here

[breezy5469]

Hi!
I'm new here too and never thought I'd land on this forum either. Our conditions sound somewhat similar and my heart goes out to you because I know exactly what you are going through. I was diagnosed with IC and was given Valium suppositories (among other things). Oddly, they do sometimes help my pain with PN. It's something you could ask about. I do a lot of driving and sitting with my job and also had issues with the arousal sensation. I haven't had that since my first nerve block so maybe it goes away.
Wishing you all the best!

[Violet M]

Sara, good for you for not trying the squats.

Was Dr. Marvel not able to advise you on how to switch over to cymbalta? I don't know -- with amitriptyline helping as much as it is I can see why you would be leery of switching. I tried cymbalta but it wasn't the right drug for me (too many side effects) but I've known other people who really liked it so really it's a matter of trial and error to find out what works for you.

Violet

[Sarajoy]

Hello. Dr. marvel did tell me how to switch, but I was nervous. I have started to switch over now in the last few days. I am cutting back on my ami while starting the Cymbalta. One thing I have noticed is that I have deep muscular pain in my sit bones, more so on one side than the other. The pt has been working on it and I am working on it at home. I am hoping maybe this is the "magic bullet." If that pain goes, maybe that will free up the nerve. Anyway...still taking it day by day! I am much better than when this all started but damn I wish I felt normal again. Valium does help! Honestly, it didn't work for me vaginally, but it helps when I take it orally. But is that because of the muscle relaxer or because it just relaxes in general and helps me with anxiety. Anyway...just checking in. I really hope that eventually my check in is going to be that I am better. I really want to show you can recover from this awful condition. Thank you for listening!

[Sarajoy]

Okay. Cutting down on ami not a good idea. I have been doing pretty bad over the last week or two. I had sort of a pow wow with my family...actually there was a lot of me crying and asking for help...and I am going to see a psychiatrist. I really need some help dealing with the anxiety and depression over all of this. My family has tried this whole time to tell me I was going to get better, and I wanted to believe that...so I have been slogging through day after day kind of in triage mode. I think my loved ones kind of thought that this would pass and so everyone, including myself, has been acting like this was just temporary. And I have had periods where I HAVE felt a lot better. But this last relapse...or what ever you want to call it....really messed with my emotions, and I'm starting to believe...accept....that maybe I am not going to get better. I'm not sure if that's a good thing or a bad thing to believe or accept that. I realized that if I had some other more understood problem there would be a local doctor I could go to who would help me manage my symptoms.

I had a brief email exchange with Dr. Marvel, and I realize now that if he is going to be my main doctor, I will have to travel to Annapolis every time for an appointment, and I can't do that a lot because of work. So, I need to find someone locally who can work me with try various things to manage my pain. I think a lot of the anxiety and depression I'm having is because I do not have effective tools to manage the pain and crazy feelings going on in my body all the time. I feel totally powerless and helpless. I guess I'm starting to accept this as a chronic illness...or chronic pain syndrome. Wow. It is really hard. I feel such a sense of loss. It is so hard to cope with. I know you all understand.

So...right now I am on 40 mg cymbalta...so far I cannot see any help with my anxiety or depression, but it has not been that long. And I am on 30 mg. amitriptyline. I am still using the estrace cream, but the burning when I pee is back, so....who knows? I never had an MRI, so I might do that just to check for anything else that might be causing problems.

Okay...update over!

[Rosemary]

Hi Sarajoy

Have you got a Pain Psychologist locally who you could see ? - i went to one rather than a psychiatrist through my Pain Management clinic - the depression and anxiety is because of trying to deal with the pain and things not getting better rather than being depressed per se if you follow me.

You mentioned that your dad is a doctor so i guess he knows the best places for you to look.

This all messes with your head - you are not alone.

Rosemary X

[Sarajoy]

Hello All! I am writing with some amazing news...that I really hope I am right about!!!!

I had a "breakthrough" the other day. I went to a restaurant to eat, and I was nervous because I was sitting longer than usual. When I got back to the car, I noticed some of the burning starting. My husband was driving, and it was raining, and the next thing I knew I feel asleep. But my husband woke me up a minute or so later. I immediately noticed the burning had stopped. I kept thinking about that. It didn't make sense. I started thinking more about when I took valium and how I felt better. My doctors said it was because my anxiety reduced, but I knew it was more than that. I physically felt better.

Obviously, I had been told that pain is a cycle, and the more I relaxed the better I would feel....etc...but after putting two and two together, I realized that I was PHYSICALLY causing myself pain by tensing my pelvic floor muscles so much that I was hurting myself. This must have started with my initial infections. I was in so much pain for several months that I must have gotten so used to tensing my pelvic floor that I no longer realized I was doing it. It's also possible that I had been doing this to some degree for years, but my infections tipped me over the edge. The valium, like sleep, allowed my muscles to relax.

I went back to my Heal Pelvic Pain book by Amy Stein and started googling everything I could about hypertonic pelvic floor and tight pelvic floor muscles. For the past few days I have been taking hot baths twice a day, meditating to some Bellaruth Naperstek affirmations and doing the pelvic exercises in the book. I have also been making a very conscious effort to relax my pelvic floor, which sounds easy, but is not. I constantly find myself tensing up, and I am using the breathing techniques I learned in PT and stretches to make sure I am keeping relaxed.

The pain is GONE! It is amazing.

I am cautiously optimistic, but I feel more optimistic than I have felt in a year. I feel like I have control over my pain. It makes sense. I know that this might take a big lifestyle change from me---that I could have stressed myself out so much that I was physically sick from it. But I would happily make whatever change needed to stay pain free. I also do not know if this means I do not have pudendal neuralgia, that I do but my stress was making it worse or that I did but that is no longer my main problem. I think I am going to try not to think about any diagnosis right now and just hope I stay well.

I will keep checking in periodically, and hopefully I will continue to stay well.

I know that many of you are suffering very greatly, and I know that this is not the answer for all of you, but I felt like if this post could help one person who might be doing the same thing that I was doing---I could not report back.

Roxanne

[Violet M]

Well, that sounds like great news, Roxanne. If your pain is stress-related it's definitely worth a try and hopefully over time it will become easier to relax.

Violet

[Rosemary]

Hi Sarajoy

Just wondered if you have read Ezer's recent posts on here about mind body connection - his references may help you.

One consultant told me that the brain is a monster when it comes to pain - last few days my pain has felt quite numb and less painful - i am sure this is because so much has been going on around me with xmas and family here that my brain has been occupied elsewhere.

All my problems started after a period of stress - i was 'wound up' before any pain started and i do believe that is why the pain got a grip as well.

Rosemary X

[stephanies]

Great new Sarajoy, wishing you continued pain-free days!

Stephanies

[Susanjane]

Keep going Sarajoy! Looks like you have started to break the cycle. Continue to feed your optimism now, instead of your fear. Although the triggers were different, there are many similarities between our stories. Absolutely agree with Rosemary re. Ezer's references too. Good luck on your road to recovery. Susanjane