New To This Site and Hoping For Help...

[DoubleEdgedSword]

Hi folks!

I've just joined the boards and wanted to say hi. I've come to find out more about the various pelvic disorders and I'll take awhile to navigate around and see what's what.

I suffer from PGAD myself. I'm currently on my third episode. The first two times I had it, I had no clue what was going on. By reaching out to a call-in show I managed to get a name put to the disorder, and I've been researching it for several months now.

This episode has been the most intense and longest-lasting of the three. Today starts Week 19 for me.. I'm hoping that others who have suffered or are suffering from PGAD will be able to offer me advice on what to explore next.

I have talked to my doctor about this. He had never heard of it, but so far has been willing to help me find out what may be causing it. I firmly believe it's stress-related for me.

I had my blood hormone levels tested. Normal.. I had a pelvic exam done, and they found a non-significant fibroid. I had a pelvic ultrasound also. The GTM test found my areas of sensitivity were on the right side more than the left, and also on the ischial spine, if I got that right.

I had a pelvic MRI a couple of weeks ago. The other day they told me "nothing significant" was found, so I'm left wondering what to do next. I've had absolutely no relief for more than 4 months, and aside from making another appointment with my doctor to see exactly what the finding are, I'm wondering what to do next.

If anyone can help me out, I'd be really grateful, thanks!

I

[helenlegs 11]

Hi there DES,
Welcome I was so pleased to read that your doctor is helping you, that is such a bonus. I have only heard of this symptom, PGAD, in relation to PN, maybe it can be as a result of another problem? but I have not heard of it. So what to do to help. . . Ice is always a good start and really does help. With regard to any medication tramadol seems to work the best for many people, there is a slow release form as well as the usual tablets.
Maybe because your symptoms seem constant, a slow release kind may be appropriate? To be honest the whole medication side of it is experiment until you find what works for you. I would suggest an anti depressant too maybe citalopram or cymbalta (I prefer cymbalta personally) I don't know if anyone else has any suggestions? Maybe a muscle relaxant if it is stress?
I would also try some physio. There is a list of physio's on the home page, hopefully one near you. There are a few Canadians on here, they may be more help. There is a PGAD thread on here too which is active now too.
I think that because you have had bouts of this on and off there is every hope that once 'stabilised' you will be fine but if the problem does return hopefully advice offered here will allow you to be able to deal with it again.
take care,
Helen

[calluna]

Citalopram or escitalopram was suggested by my GP as it often has the side effect of preventing arousal. But tramadol worked very well for me.

[Lernica]

DES,

I'm from Toronto. You may want to start taking steps to see Canada's PN specialist, Dr. Allan Gordon, from the Wasser Pain Management Centre at Toronto's Mount Sinai Hospital. It takes about eight months to see him and you need a doctor's referral. He will be up on all the current medications for dealing with PN symptoms.

I'm sorry you are having to live with this horrible symptom and hope you find some relief soon.

[carolynm]

DES,

Do you have any of the other PN symptoms, most specifically, "sitting" pain? That is usually a common denomintor of PN. If you go the home page you can see a list of symptoms.

My PGAD and clitoral pain were extremely horrific. None of the meds listed above helped and I tried them all. You may have PN and be in a very bad flare. My best suggestion is to remove any of the causing factors, i.e. bending, reaching, sitting, etc to calm that nerve down. I used ice a lot.

I would cry into the night with this symptom. I am so, so, so sorry you have to go through this.

Please write us if you have any other questions.

cari

[DoubleEdgedSword]

Thanks so much for the welcome ladies! After feeling like a bit of a freak for so long (I prefer to think of myself now as a "rarity", like perhaps a pewter-coloured butterfly?) I'm glad to be amongst folks who truly understand the pain, frustration and sometimes desperation that can become our lives.

So ice helps? I'll have to find my recipe..

I'm a bit leery of meds at this point in time. I'd try some if it didn't take away all desire, as I'm happily married for 24 years now. I don't want to live the rest of my life on them, and I've read where some of them can make it worse. Has anyone experienced that aspect of PGAD and can enlighten me on it? What meds made it worse, and was coming off of them a problem?

Has anyone had positive experiences with physio, and are there specific exercises that help and those to avoid? I haven't yet found the Physio thread but I'll keep looking. What about a TENS unit? Where would one need to place it?

My PGAD is aggravated by crouching, sitting, wearing snug pants (I can't wear tight ones), sometimes reaching, and driving my car. Standing sometimes relieves the pain a bit, but not always. Hoping anyone can provide me with some guidance? Thanks so much!

[helenlegs 11]

The other thing that helps in humour and spirit, and you seem to have those covered. good one! Not sitting (properly) is a good help. I bet those times when standing up doesn't relieve the problem is when you have just sat that bit too long, done too much bending, crouching etc. . . Quite a bit of changing position and unusual sitting positions help too (I think) kneeling, best side sitting, tucking one leg under, whatever it takes
I am mainly numb so don't have the 'pants' problem, I'm sure we had a 'going commando' thread once, it's a bit chilly for that here at the moment
As for medication I can understand your concern BUT it is important to try and 'break the cycle of pain' as things can escalate. I was a total non tablet taker but I have tried quite a lot now. It's an experiment to see what will work and what won't as everyone is different.
The physio has to be tried but with someone who knows what they are doing, check out the list of physio's on the home page. As for exercises or stretches at home it's difficult to advise as again everyone is different. Not much help, am I. sorry!
The other thing that does help me is trying to put the pain in a box and taking it down a few levels. This may be similar to some parts of cognitive behavioural therapy, which is highly recommended by many. I have not tried CBT, but I think I just 'get' it anyway and do think mind set can often work wonders. It can work the opposite when stubborn too as I know as well as my husband (who shakes his head at me) but some things are worth the recovery time, like a week of grandchildren but then some things, housework, painting the fence and cutting down trees I now recognise as plain silly
Helen

[carolynm]

Double-edge-sword,

I have been too scared to try to have an orgasm....I thought it would be horribly painful, but it sounds like you are still able to have a normal sex life with your husband?

Do you have clitoral pain with the PGAD?

cm

[DoubleEdgedSword]

Thanks again for your replies ladies..

I'm going to do more browsing and I've taken down your suggestions so I can meet with my doc again and weigh the options. I'm sure he has some experiences with these meds and we can discuss what might help and is least likely to make it worse.

Seems I might be entering another pain cycle, and when that happens, I don't want a sex life until it passes. When there is no pain, hubby tries to accommodate me, but sometimes the demand is too much for him. When I first got PGAD this time, it was 'fun' for a few weeks but even then I was asking too much. We've reached a compromise. When we found out that having orgasms can exacerbate the symptoms, I tried to make a conscious effort not to give in to the urges. I can sometimes go 3 days without one, but that's about my limit. Then when I ask, 'no thanks' really isn't an option.. Relief lasts anywhere from around 3 hours to 10 minutes.

I had pelvic congestion for quite awhile, and during the pain cycle I've had the throbbing, the burning urethra, the itchy labia and the sore vulva all at once, and toss in my period cramps just to keep it interesting. It feels like a hormone overload.

As far as sitting comfortably, it's really not possible. I also have Restless Legs Syndrome that really flared up for a few weeks. Sleeping in a fetal position helped, then flat on my back, but I don't like to sleep that way. 'Going commando' hasn't been an option since one of my symptoms is excessive wetness and I have to change pantyliners several times a day. Lounging around in my unmentionables at night helps though.

[DoubleEdgedSword]

I have looked at the list of Physios on the home page and I'll do my research before I commit to driving to any of them. I'm learning what chores I can still do and which aggravate the PGAD. Chopping veggies and vacuuming usually bring on an orgasm. I've gone through a couple of weeks where nothing in particular sets them off though. Mildly embarrassing but they're not the 'When Harry Met Sally' kind. I Skyped with a girlfriend and she couldn't tell I was having them, so I'm getting better at hiding them.

Another girlfriend has suggested I look into the 'Mindfulness' program for stress management and maybe getting control of this problem. Has anyone had a positive experience with it? Learning to control the symptoms instead of having them control me has been a long road, and I'm not always in control but I'm getting better at it.

I look forward to your input and to browsing the boards and getting more familiar with this place. Seems like there are lots of helpful people here.