Pgad.

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Pgad.

Postby coz69x » Mon Feb 13, 2017 1:33 pm

So new to this and spent the past 3 days crying but I think I have finally got abit of a grip, earlier this week I started developing awful feelings/symptoms.. when I typed them in Google the worse of the worse happened, it said PGAD. After 3 days of writing my life off (I'm only 20) my mom and boyfriend forced me to the doctors where I was given some codine and referred to a gyno. I've been struggling to sleep, and it's weighing me down mentally as I have a 5 day a week job in health care. My symptoms are like heaviness, uncomfortable tingle sensations, slight waves. I just wanted to post really as I do feel slightly alone, I know what has triggered this off as I spent 3 years with a contact interstial cycitus and it was having a bad day and boom, this werid odd pressure won't stop. I've seen people saying they are suicidal which made me panic but I think I've become slightly more accepting. I'm just hoping to be referred and maybe even go down to London to see one of the pgad doctors if this consists. I know there isn't a cure but I just wondered how many people have flare ups and flare downs? And how to cope when it's a bad flare up.

Thanks
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Re: Pgad.

Postby Andy_Pablo » Tue Feb 14, 2017 12:36 am

Hey there. Im so sorry you are suffering at such a young age. Please dont panic. You are most definitely not alone. There are many here who understand the issues surrounding this situation & will want to help in any way we can. I hope that as you investigate the cause of your issues that you find a positive answer that can move you forward. Keep pushing your doctors & if you have any questions then dont hesitate to ask. I wish you good luck going forward. Andy.
Credula vitam spes fovet et melius cras fore semper dicit...
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Re: Pgad.

Postby Violet M » Tue Feb 14, 2017 6:14 am

Hi Coz,

The proper treatment can depend on what is the primary cause of your symptoms.

You can read my article in the newsletter at the following link for ideas on treatments that have helped to relieve PGAD that is related to pudendal neuralgia.

http://www.pudendalhope.info/sites/defa ... ne2013.pdf

Some of the symptoms of IC and pudendal neuralgia are similar. The pudendal nerve innervates the bladder sphincter so pudendal neuralgia can cause urinary symptoms.

Yes, I had flare-ups although mostly it was 24/7. One thing that helped me sleep was to insert ice balloons vaginally. The cold can be pretty intense so you may need to take the balloon in and out a couple of times until you get used to the cold but it can help numb things up and allow you to get to sleep. Clonazepam also helped me get to sleep. I am mostly cured of PGAD and there are other people who have been too.

Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
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Re: Pgad.

Postby coz69x » Tue Feb 14, 2017 12:26 pm

Yes, I didn't even realise but I could well have pn - kind of scary, last week I felt these lesser symptoms coming on but carried on as normal just sat down, had sex etc so now i feel annoyed at myself!:( just hoping for the best really and for symptoms to calm down slightly with some life style changes as I am not in actual excruciating pain just urethral discomfort and fullness, along with some sensitivity in all areas. I am only young so haven't any children etc and am worried how this can impact me now for the rest of my life :( with relationships and having a baby as that was the plan soon as I am recently engaged - Im scared if it never get better i will never be able to do anything sexual again too!!.. have to wait for my gyno appointment - concerned an NHS gyno might make it worse to be honest. How will they know if its IC or PN causing my flare up? Is there a way of telling or? I have suffered IC symptoms for 3-4 years, had slight pgad symptoms in June 2016 to now, then last week it started and now I'm feeling less sexual symptoms more of sensitive and heaviness. Its mad that a nerve in the body could become inflammed (is that what happens?!) and it cant repair itself!! I dont know if its pne as that sounds agonising and i can manage my pain witj just cocodamol really, but have to see - thanks for replies:)
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Re: Pgad.

Postby Violet M » Thu Feb 16, 2017 6:17 am

Some doctors believe that IC and PN can be related -- that IC can be caused by an irritated pudendal nerve. I don't know if that's true. My understanding is that there can be changes to the lining of the bladder with IC and I have not heard that to be the case with PN. If you read the symptoms of IC, http://www.health.harvard.edu/womens-he ... l_cystitis
they sound very similar to PN however typically with PN diet doesn't seem to make a difference. Are you able to control your IC symptoms by making dietary changes?

Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
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Re: Pgad.

Postby nonsequitur » Thu Feb 16, 2017 8:05 am

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Last edited by nonsequitur on Fri Feb 17, 2017 3:28 am, edited 1 time in total.
“Unexpressed emotions will never die. They are buried alive and will come forth later in uglier ways.”
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Re: Pgad.

Postby coz69x » Thu Feb 16, 2017 10:24 am

I think i do have PN, went to the doctors in pain but luckily my nan is a doctor so she came with me and made him prescribe pregabalin, pain killers and I've got 13 days off work singed off. The pain has dropped considerable amounts in one day, I have paid for initial consultation with micheal durtnall in London for 8th of march as I'd rather try and help the problem not just mask it (however he is expensive) but hopefully it's worth it :) I asked the doctor about having children and he said it should be ok just to have a cesarean so I'm feeling a lot better about everything. The Dr said it is rare for someone my age to be dealing with this when there has been 0 trauma. I'm just thankful pgad seems to have disappeared that's was the worst!! I still have pain with IC symptoms so I do believe I have that aswell.
Thanks :) x
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