swarke wrote:Hi, I get this PGAD everyday and I am at my wits end. I have recently had bilateral pudendal surgery a wheel ago and wondered when is can expect some relief. I have only just today told my partner, and he was shocked at what I have had to put up with. I've also been told that Botox can help. Can anyone help me?
Thanks Shirley
Hi Shirley,
New research published about botox and PGAD but I see mixed info about its effectiveness on posts. Dr. Conway who I recently saw has referred me for nerve blocks. Have you had any?
People do NOT understand how awful and life-altering this condition is...when I told my primary MD about my PGAD, she actually had the gall to say,"I bet some people would like to have this." You can't understand unless you live it. Violet is right, we have to keep trying everything. Her story gives me hope that one day we will all be PGAD free and return to our normal lives. I miss feeling normal. I miss being active. I miss so much. My heart is sad for you for missing out on so much.
People do NOT understand how awful and life-altering this condition is...when I told my primary MD about my PGAD, she actually had the gall to say,"I bet some people would like to have this." You can't understand unless you live it. Violet is right, we have to keep trying everything. Her story gives me hope that one day we will all be PGAD free and return to our normal lives. I miss feeling normal. I miss being active. I miss so much. My heart is sad for you for missing out on so much.
Thank you for understanding. I've actually avoided forums and looking up stuff on the internet when it comes to my conditions....especially this one because it would just fill me with hopelessness and anxiety that I too would never get better and live with it for years. That is my biggest fear. It's been 6 months and I never thought it would go on this long. However, I do find it nice to read what all of you have to say and the things you've tried and it's nice to feel like SOMEONE out there can relate to me. I feel like I'm so alone even though I tell my husband , he can't possibly understand. I am going to Dr. Irwin Goldstein in San Diego for the second time tomorrow at 1pm. I will keep y'all updated.
Bladder frequency since October 2011. PGAD since May 2013.
LucySky
Hi my name is Debra I live in Australia. Im glad to find this site I have been 14 yrs dealing with this horrible disorder. Started when I was around 10 I would feel this horrible orgasmic pressure and urinate. That makes it worse and I would push my legs together and orgasm which would feel a lot better, as a child always wondered what this nice feeling was. On and off through to my teenage years I would get very mild feelings which would go away overnight. I always thought EVERY woman gets this horrible feeling now and again. When I was married I never orgasmed for 15 yrs, still didn't know that feeling I did now and again to get rid of this horrible feeling was an orgasm. Well one night I had an orgasm that went one after the other and was like electric lightening it scared me abit. Well for a week I had sex and then always orgasmed. THEN it was like a switch turned on and this HORRIBLE orgasmic arousal never stopped. I explain this to drs as I know its 100% it started after I orgasmed first time. I then got a horrible uti it made the symptoms UNBEARABLE I had to orgasm over and over while crying and hands shaking I didn't know what to do with myself. If I pee its like the bladder neck opens and makes the symptoms unbearable again unless I have a very full bladder and the acid feeling dies down im abit more safe. I have been to every kind of dr and yes had very rude horrible drs say the worse things to me. It gets me I was a virgin when I was married and I get this perverted horrible feelings. I cant stand much at all my toes are always curled as I don't know what to do with myself. Only thing is when I sit down near the anus section it likes cuts the feeling down abit. Ive been to a physio therapist that is supposed to be the best in Australia but to be honest how the hell is that going to do anything doing little excercises. There is a gyno called Susan Evans that is waiting until my pelvic floor is softer and then going to do botox and pudendal nerve block but another gyno says it wont work if I don't get these muscles soften. Its been 2 yrs and still waiting. Im so OVER this I went off the endep after 2 yrs but im 49 and haven't had my periods for 3 months and its flared so much im stuck at home and hubby has had to go to functions himself. I have 3 children they are supportive. There is NO WAY I can hold a job. Im FED UP with using a vibrator it makes me feel gross and vile. I tell people its like having a crap half out of your anus and that pressure feeling well make that 10 times worse and try being social while your toes are clawing and you feel like smashing your fist through the wall. Its the WORSE thing I have ever felt. Pain is so much easier to deal with. Ive never cryed so much lately. I know my arousal comes from the urethral wall where this g spot is meant to be and ones side of the vulvar near the clitoris. They say I have vulvadynia but If I touch the urethra its like a blocked nose feeling and HORRIBLE arousal feeling.
Hi Debra,
I am sorry that you have had this disorder since childhood and even with medical treatments, not much progress has been made. I spoke with a gynaecologist who also believes that the urethra is an important component in chronic pelvic pain of various natures.
It was not clear to me, but to you mean that an uncontrolled urine stream makes the PGAD worse, or is it just the fact that you are urinating? If it is the uncontrolled urine stream, a PT should be able to give you Bridging exercises to help balance the pelvic floor muscles.
Have you considered consulting Professor Thierry Vaincaille in Randwick or Dr Angela Chia in Parkville, VIC? They are both treating this disorder and maybe a second opinion could provide insight.
Glad that you have a supportive family, you will find more support on this site.
Best
Laurina
Hi thanks for writing back. I meant that everytime I urinate it flares it up. I can keep urine in my bladder for hours and I only do this to keep sane otherwise just like now im so flared up after urinating an hour ago. My stream is very good and I don't leak any urine. THey said my muscles were too tight and im trying to relax the pelvic floor all the time. These other drs do they have other woman the same as me? I don't read much of other ladys that it stems from the urethra. The whole tube is hot and give out the WORSE urinary arousal pressure. Ive had utis a lot but the last year not so many as im spending a lot of money on acidopholous powder and other things to keep the bladder clean.
I have this along with many other symptoms. Does pelvic floor Botox help or would piriformis Botox help. My pelvic floor is strong and tight, physio not helped, my piriformis is spasming everyday, PGAD constantly need to urninate, I want to try Botox anyone had it? Does it help, have you had it in uk? How much does it cost its not done on nhs is it? I feel suicidal too x
Melanie, do you urinate a lot during the day? There is no way as these stupid fowl urinary arousal feelings are sooooo unbearable. Im better if I leave my urine in for hours. If anyone else felt what I felt they would rush to the toilet to get some relief but.... I cant it makes it sooo much worse and soooo urinary acidity. When I do orgasm its like im peeing acid feeling and I fell like pushing all the fluid out like when you have the spasms after orgasm. hang in there Melanie I know how you feel
People do NOT understand how awful and life-altering this condition is...when I told my primary MD about my PGAD, she actually had the gall to say,"I bet some people would like to have this." You can't understand unless you live it. Violet is right, we have to keep trying everything. Her story gives me hope that one day we will all be PGAD free and return to our normal lives. I miss feeling normal. I miss being active. I miss so much. My heart is sad for you for missing out on so much.
Thank you for understanding. I've actually avoided forums and looking up stuff on the internet when it comes to my conditions....especially this one because it would just fill me with hopelessness and anxiety that I too would never get better and live with it for years. That is my biggest fear. It's been 6 months and I never thought it would go on this long. However, I do find it nice to read what all of you have to say and the things you've tried and it's nice to feel like SOMEONE out there can relate to me. I feel like I'm so alone even though I tell my husband , he can't possibly understand. I am going to Dr. Irwin Goldstein in San Diego for the second time tomorrow at 1pm. I will keep y'all updated.
Lucy- how did your second appointment go with Dr. Goldstein? I am seeing Dr. Echenberg in PA this week. Not sure he will be able to offer much more than Dr. Conway, but I am going to see.
Melanie9999 wrote:I have this along with many other symptoms. Does pelvic floor Botox help or would piriformis Botox help. My pelvic floor is strong and tight, physio not helped, my piriformis is spasming everyday, PGAD constantly need to urninate, I want to try Botox anyone had it? Does it help, have you had it in uk? How much does it cost its not done on nhs is it? I feel suicidal too x
MElanie if you read my past post maybe on page 27 or 28 you can see all that I've tried. Botox being one of them. IT did not help my PGAD and made my bladder problems worse! Now I have retention and have a hard time emptying my bladder and there's nothing I can do but wait months for it to wear off.
Bladder frequency since October 2011. PGAD since May 2013.
LucySky
I've also been told that Botox can help. Can anyone help me?