Health Organization for Pudendal Education

I sure hope so. My arousal flare has been pretty intense the past week. Guess I'm stressing a bit with all my appointments coming up.

I made it through the dentist today with no local. I'd asked for some last week when I confirmed my appointment, but my hygienist started today without it, and I felt like too much of a sissy to ask for it again. Luckily she was as gentle as could be, and I didn't feel like jumping out of the chair like I did last time.

Next week I have counselling again, and my own doctor. I plan to discuss my diabetes with him, and also the Topamax option. I don't think it's going to be an option for me.. I plan to look into some pelvic physio, at least an assessment, to see if they think my pelvic floor muscles are too tight.

Next month I have my 2nd diabetic clinic, and in March I FINALLY got a follow-up appointment with Dr G..

I welcome the new bird as a distraction from my stress, worrying and appointments! Falling in love with his feisty little attitude more every day!

DES, I hope you can find a good PT -- I think that assessment/evaluation is very important and hopefully will provide some valuable info into what is going on with you.

Violet

Gosh, it's been ages since I've been here. Time's at a premium & I just haven't had time to get back here.

Going to see Dr G for a follow-up in a few hrs. (I should have been in bed ages ago, but I stress.. & I digress!) Going to get his thoughts on a referral for pelvic PT, see if there's any progress on the Botox study, & discuss ideas about my meds with him..

Since becoming diabetic, I've drastically altered my diet. Bought a new treadmill (which I still have to set up!), & I've dropped 22 pounds (9-10kg?) so far.. Trying to lose 28 more by the time my birthday rolls around, which gives me 2 1/2 more months..

I've found a lump in my breast (which really sucks). Hoping it's 'just' another cyst (I've had 2 before), but I never felt the other 2, & this one's definitely palpable & seems pretty big. I go to see my own doc on Monday about that, but if he thinks it warrants a follow-up, the mammo will take weeks to arrange.. Just what I need, more worry & stress!

On a brighter note, I've spent some time 'taming' my parrotlet, 'Squeak', & he takes seeds gently from my hand & submits to head scratches.. He still wants to bite my arm off, but at least he's learning a few manners!

I'll update this when I find out more about what Dr G suggests. Wishing you all pain-free days!

DES, congratulations on the weight loss. You are doing great with it!

That's crazy about the long wait for the mammogram. If it's potentially something concerning it seems like you should be able to get in right away. Anyway, I hope it turns out to be nothing serious.

How did your appointment with Dr. G go? -- did you learn anything new?

Violet

Thanks, Violet! I appreciate the support for my weight loss. I think I'm over that last plateau, so I hope to be able to make up for lost time.

I went to see my family doc about the lump. He aspirated (needle biopsy) some nasty-looking fluid from it and sent it off to the lab. In a very surprising move, I got an ultrasound two days later (Wednesday), so he should get the combined results for those next week. I'm hoping it's just cyst fluid and he was able to draw most of it out.

Dr G went over my EMG results with me. Seems my left side is somewhat abnormal. Apparently when the other hospital did my MRI, they didn't use the protocol settings he wanted for it, so he's ordered me an MRV instead. Anyone want to wade in on that one and shed some light on it? I think it's much like an MRI, except it shows the veins instead, using contrast dye?

That one will (again, surprisingly!) be next month, early-ish April. I sure hope it shows something, otherwise I won't know where to turn next.

Dr G doesn't recommend that I get pelvic PT at this time. He said it's more for pain than arousal, so we'll hold off on that.

He's hoping to include me in two studies (one which is 'unofficially' closed), so I'm waiting to hear if they get permission from the board to open it back up. The other is the botox study, which could be 6-9 months away.

I got another budgie Tuesday also. He's hand-tamed and very sweet. We're not 100% sure it's a boy, but I guess we'll find out in a few months. Both the birds seem very taken with each other, but they'll live in separate cages. Parrotlets are a bit too territorial, and I'd hate something to happen to my new baby!

Wishing you all relief from your pain..

I got word that the PGAD study has been opened back up to include me. I'll see Dr G's nurse when I go down to have my MRV. If for no other reason, I hope that this study will benefit doctors and patients of PGAD in the future. There has to be a reason for getting this..

My test results from my needle biopsy/ultrasound came back as a cyst/fibromyosis. I'm very relieved it's nothing worse.

Has anyone had an MRV, and would be willing to share the experience with me? I know it's similar to the MRI, but just wondered if there was anything different about it? Thanks!

I've been through a prolonged pain cycle. This one lasted 2 1/2 weeks, and was a combination of intense tingling/itching, and a pinching and burning sensation. I know it wasn't an infection.

It started after sex, and right after my last period, and it's carried over to the first couple days of this period.. For those doing the math in their heads, I often get 2 periods in a month, & they usually last 9-12 days.. Adenomyosis, according to Dr G and my latest MRI..

My PGAD had calmed down to a tolerable level, likely overshadowed by the pain, but it's back now that the pain is over. I've really resisted taking extra Lyrica, because it makes me feel fuzzy, confused, sleepy and fat.. I'm hoping in the next month or so to wean off of it and stay with the Cymbalta for now, but perhaps I might have to increase my dosage if it's allowing this pain to surface and last so long. This was my longest pain cycle to date in almost 2 years.

Just wondering if anyone's had GOOD results from Botox? I know the study's a ways away, but if I get included, I'd like to have as much info as I can. I know there can be poor results or no change also, but has anyone had some good relief from having it done?

Next week is my MRV. Is there any co-relation between having varicose veins in the legs, and having them in the pelvis too? I know I have some in my legs.. I've also got fibroids, adenomyosis, and nabothian cysts.. Apparently these will be less of an issue (or perhaps no issue at all) once I'm menopausal. (I can only hope!)

I had botox but into my piriformis muscle Des, it helped the muscle pain but I still got the nerve pain unfortunately (scar tissue) I guess a botox injection may determine if your problem is from tight muscles, will they include physiotherapy in the study do you know as this could indicate the same although for a therapeutic response the botox will be more instant and hopefull 'persuade' any tight muscles to 'stop their nonsense' . Hope it works for you when you get there.
Had to giggle Des, with an added few 's when what (not saying all, however) we have to look forward to is getting older and the menopause but the fact is that many of us are simply playing a waiting game, including me (tho' I'm post menopause )
However, I determined today to really pay attention in looking after the rest of me from here on in. It's sort of my own take on cognitive pain management, you know when you feel an absolute ton better when you look well, and it's something that I can concentrate on now, rather that 'w. a. .i. . .t. . . .i. . . .n. . . .g!! Heaven knows it's about time! Lets see how long this will last. . . .there is a task ahead!! . . . but I do want to try and become more spiritually aware, meditate, do that umbrella breathing, whatever, well! whatever doesn't involve too much cost You see tho', just putting that down here, I now feel the need to buy something floaty to wear and have lots of bangles
I forget if you have tried something like tramadol for pain? I take it on top of cymbalta and lyrica and it does helps.
Take care,
Helen

Helen, you're too funny! Buy something floaty & wear lots of bangles! Perhaps you need a string headband & a peace sign around your neck too? *sigh* Yes, wishing to 'get older' & be past much of this stuff seems wrong somehow, but we women have to put up with much more complicated 'workings' than men do..

No, I haven't tried tramadol for pain. Is it an addictive medication? I'm really hoping to stay away from those ones if I can..

The MRV went okay. I'm not really too claustrophobic, so being inside the machine didn't bother me. I'm not super-wild about needles, & had to coach the tech where others have gone wrong. She gave it a good try, but admitted to 'fighting' with it to get the IV port into my arm. I've got a bruise from her efforts, but thankfully she only needed to stick me once! Last time I had the dye, it took a tech & two nurses 4 tries to get it right.

Aside from forgetting to tell me to breathe once (after what seemed like an eternity!), I managed to cope with the whole procedure. Sometimes when I lie on my back that long I get a muscle spasm, but luckily it didn't happen this time. The tech said Dr G would get the results in 3 or 4 days..

After, I went upstairs to see Dr G's nurse, so she could complete the study on PGAD with me. I just answered about 4 pages of questions, & she said he'd include any findings from my assessment, & that was it..

Dr G's nurse encouraged me to make an appointment while I was there, so I could discuss the results of the MRV with Dr G. I'll go back to see him in early May for that. Since I didn't see Dr G, I'll have to ask him about another MRI if this MRV doesn't show him anything.

I'll be going to see Dr G on Friday. I'd seen him & one of his residents back in May. She did another genital tactile mapping test on me & I ended up getting some topical cream with lidocaine & gabapentin in it for the pain.

I'd resisted using it until yesterday, but figured I better try it before I go back to see him. It did help quite a bit, so I'm grateful I have it.

I'm just going back for a follow-up visit. I guess he can tell me if anything on my MRV would be contributing to the pain. My arousal is very much under control for now. I know it flares when I'm stressed, but it's nowhere as intense as it was a few months ago, thankfully. I think my 'condition' is morphing into something else. It's much different than when it started just over 2 years ago. The pain is a prickly, burning, stabby pain & the last pain cycle was about 6 weeks. I'd almost rather have the arousal than the pain.

I think increasing my Cymbalta to 90mg from 60mg was a good move. I don't want to think how much pain I'd be in if it wasn't for that medication..