Health Organization for Pudendal Education

Hi Violet,

Again I haven't been here in a long while. That's really interesting about the sunflower oil treatment.. I've never heard of it, but it does sound like it might work for some..

I still have my headache. I'm now on 60 mg of Nortriptyline once a day. It's helped a tiny bit, but not as much as I'd thought. I had another massage a couple of weeks ago. Different masseuse because my favourite gal was already booked. It didn't make my headache worse, & my sinuses felt better that day & the next. I had two MRIs since I've been here last. One was of the neck (typical degeneration of some of the vertebrae) & the other was my head again. I've not heard back with the results of the head one yet. Maybe this week..

I'm still finding I have my PGAD flare-ups when I get tense/stressed. Much milder than they were a year ago at this time. Every time I have an appointment booked with a doctor, I notice a flare-up..

I've got an appointment next week to see the gyno. Last time I saw her, she wanted me to go on a hormonal IUD to try to straighten out my periods. After looking at my ultrasound results, she & I both decided I wouldn't be a good candidate, due to the odd shape of my uterus.. Too big a chance of perforation from the IUD. So she gave me a prescription for a low-dose birth control pill.. I took it to the pharmacy & discussed with the pharmacist the side effects, etc.. Again, because of my age & family history, I'm really afraid to use it, since my grandfather had a stroke & my Mom passed from a heart attack (complications from COPD).. Now I'm looking into endometrial ablation, but need to see if I'm a candidate for that, since I've heard that women with adenomyosis may not be candidates for some of the methods.. *sigh*.. I'm also a bit worried that if they do the procedure, it may make my PGAD flare up again..

My SIL has endometriosis & recommended that I look up 'chaste tree berry supplement'.. She uses it to regulate her periods & she said it helps with her vomiting & migraines associated with the endo..

Has anyone heard of this and/or used it to any degree of success? I'm also wondering if it would help me or any of the women here control PGAD flare-ups, or diminish their symptoms? What I've read is that it helped the monks maintain celibacy more easily.. Worth looking into, perhaps??

I'd like to know your thoughts, folks..

DES, I don't know much about chaste tree berry supplement but I was reading that in addition to menopausal irregularities it can be helpful for headaches. http://www.webmd.com/vitamins-supplemen ... HASTEBERRY
Maybe it's worth a try but if you are on other meds you probably want to check with your doc and pharmacist to make sure there aren't any interactions.

Violet

Thanks, Violet.. Yes, what I'm reading leads me to believe that there are numerous drug interactions, as with almost any other med or supplement you take.. It's unbelievable the number of side effects for each drug, never mind the interactions with others you may be taking.. I've got a couple of days to research before I see the gyno on Tuesday..

I haven't posted in this thread for awhile. Lots has happened since I last did. I'm experiencing tailbone pain & I'm scheduled for an injection on Tuesday. The list of potential side effects scares me, but the pain is almost unbearable. I just want it to go away. I also have a flare-up of sciatica, sore hips & my RLS is bothering me a bit more. I'm already taking 500 mg of magnesium for it & it's the only thing that helps. I don't know if the RLS & sore hips are acting up because of the way I sit to avoid tailbone pain.

I still have my headache, almost 2 years now. I've had 4 nerve blocks for it, & only this last one helped (C5-C6-C7). It took the pain down to about 50% of what it was, just for the day. The docs want to repeat it to see if I get another positive outcome, & if so, I'll be a 'good candidate' for nerve ablation.

My PGAD is still there, mostly when stressed about something. Otherwise it's at a manageable level & I rarely have to take the Gabapentin/Lidocaine cream for it. Not sure if stress has anything to do with the tailbone pain either.. Maybe a tense pelvic floor can affect the tailbone?

I've recently experienced pain inside the vagina, near the G-spot. It almost feels like it's been irritated by sandpaper or something prickly. Again, not sure if it's because of the way I'm sitting.

My meds had caused me a lot of side effects, mostly depression. I stopped taking everything except Metformin for my diabetes, iron & magnesium. My doc wanted me to go back on Ramipril (Altace) even though my blood pressure is pretty good. I started back on it in January. I take the Gaba/Lidocaine cream when needed.

Constipation was a big problem for me last year, but so far this year it hasn't been. Maybe one or more of those meds I quit was causing it, because I'm pretty good at getting my water & fibre most days.

The gyno I was seeing was less than helpful. When I returned to her & told her I didn't want to take the low-dose birth control pill for my adenomyosis, & told her I was doing some research online for endometrial ablation & researching the meds, she got very offended, practically tossed my file at me & told me to make another appointment.. She cancelled that one & the next one I made, so I'm guessing I've been 'fired' as her patient. My own doc used to be a gyno, so maybe I can talk to him about my female issues. I thought that a woman would understand better though..

Over all, my depression hasn't been an issue for me so far this year.. Last year was such a trial for pain, finances & overall depression that I wanted to throw in the towel more than once..

I'm hoping I can get some pain relief from my current issues & break the cycle, because it wears me down something awful.. :S

Hey DES, I see you are still out there fighting through this -- with multiple issues going on like so many of us have. Thanks for the update and good luck with your upcoming injection.

Violet

Thanks so much, Violet.. Yes, still out there & still kickin'..

Scared to death of this injection coming up, tho.. I still don't know if the doc will inject the area around the tailbone, or what.. ((o_O)) He took Xrays, but I haven't heard what he found, if anything.. I know I've had more than one fall on it in years gone by, plus bicycle riding & horseback riding awhile back..

Who knew all this stuff could come back to bite us.. well.. in the butt again years later?? ;D

Well, if it's a ganglion impar block chances are you will be just fine and will hopefully experience some relief. I'll be interested to hear how it goes for you.

Violet

I had the cortisone/lidocaine injections the other day. Near as I can tell, there were 6 of them round & about my tailbone. It wasn't as horrible as I imagined, but it wasn't pleasant either.. I just wish the doc had let me know when they were coming.. ((o_O))

Very shortly after, I could sit flat on my butt, something I haven't been able to do for so long now.. It's still a bit tender, but much improved over what it had been since October/November.. I can't sit for too long just yet, but I'm sure that'll improve some.. I go back for a follow-up appointment in early April to let the doc know how long it lasted & to discuss what to do next.

I had high blood sugar for a few days after. It's still higher than it normally is, so I'll try eating more veggies & fewer carbs & see if that helps.. I also had a stronger headache than I normally do, & my face, neck & chest were a bit flushed. All 'normal' side effects, from what I understand..

Now, I also understand it can decrease libido/ability in some folks.. Is it possible it can have the OPPOSITE effect? My PGAD has spiked the past three days, & I don't think it's just a coincidence.. It's been at a manageable level for several months now.. Any feedback's greatly appreciated.. Thanks..

DES, I don't know what type of block you had so I can't say for sure. One of my PN blocks caused an increase in PGAD after several days that lasted for about a month. My guess is that it was from the steroid irritating the nerve but I can't say for sure. Hope you feel better soon.

Violet

Thanks, Violet. My PGAD is still at a more elevated level than before the injections, but nothing I can't manage so far.. As long as I can sit flat with much less pain, I'm happy. The one thing that the injection messed up was my period. I've had very strong cramps off & on for several days. There is no 'flow'.. It's just faint spotting. I've read it can mess with my cycle for several months.. Guess I'll find out soon enough.

I'm not sure what kind of injections I had. It was lidocaine & depo-medrol, injected into the muscles around the tailbone. Three injections on each side, the lowest part of my back/upper & inner glutes, just above & alongside the tailbone.. Whatever it was is working so far..