Yes, it reduces my symptoms by more than 50% most of the time, so definitely worth asking your doctor about. Once you can break the pain/arousal cycle & get some relief, you'll wonder how you lived without the topical cream. At least that's how I feel about it.. Good luck!
On the road of discovery to see what is causing my PGAD.
I am new to this website. I have been suffering with this condition for 8 years now. I am 34 years old. My symptoms stated out as just Vulvodynia, then burning spread to my butt :S and from there I started getting deep stabbing vaginal pain after bowel movements that radiated down my legs. Shortly after I developed PGAD. The most torturous of my symptoms. I agree that it is torture. So violating. I also have creep crawlies anally/rectally.
I have not had sex in 8 years and I probably never will again in my life. I have been through the gamut for trying to manage this disease and I am so tired. I don't have much hope for any quality of life anymore. I haven't worked in over 5 years and I feel very alone. I don't know anybody who has this type of pain. My family doesn't understand how it is to live with day in and day out. I cry a lot. Everything I see in the world reminds me of what I have lost to this pain
I have found that Benzos and Seroquel help with my PGAD. They almost completely turn off this symptom. However, having an orgasm is an absolute no no. I pay for it greatly. Sometimes it just happens in my sleep. I hate this. It's like waking up from being assaulted. Anyways, without these meds, I am off the charts in delirium because this symptom is so violating. I am going to be travelling to Pensylvania to seek treatment from Dr. Robert Echenberg who is very knowledgable in this area. He uses bladder instillations to treat IC, which also helps to relieve PGAD because the pudendal nerve is connected to the bladder, urethra and clitoris (and everything else down there).
Has anyone here been treated by Dr. Echenberg?
I am hoping it will help.
Welcome to the forum. I haven't been to Dr. Echenberg but some other have posted on the forum about him. You can do a search in the upper right corner on his name and then skim through the posts about him. I hope he will be able to help you.
Best,
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.
Hi Gina,
I just wanted to reach out and say that I understand. I'm so sorry that you have been dealing with this for so long. Do you have a partner or children?
Please let us know what treatments work for you. It certainly sounds very nerve related. Do you have any idea what triggered it?
I also have pgad 24/7 and burning and itching and its utter torture. I have 2 little girls and a boy on the way. I can hardly be a mum to them, I'm just so tired and depressed.
Keep us updated and all the best for your upcoming treatment.
Rosie
Sorry to hear that you are suffering from this problem. There are several doctors that provide treatment for this problem. Recently I was reading about some famous people with scoliosis, who are also getting treatment for this. Sarah Michelle Gellar is one of those celebrities.
Milton, are you saying Sarah Gellar is getting treatment for PGAD or for scoliosis? Who are the doctors you are referring to who treat PGAD?
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.
Just wanted to reach out and say I know how you feel. I haven't had sex in more than 8 years and don't think I ever will again and I also get very agitated and upset when I see things I can't have on TV or whatever. It just constantly stays in my mind - why can't I have that? I work on trying to say to myself each of us in this life has something to regret and I must try harder to deal... which only leaves me more infuriated LOL Best thing I find is to talk to others and lend/receive support. I also noticed you got good results from Seroquel (as did I) but I simply could not tolerate the medication. I've considered Lyrica as I've heard good/bad about it.
Also, I get burning and spasms after every bowel movement (even when I'm lucky enough to have an easy one) I had anal manometry ? where they test the anal sphincter for any issues. They found nothing wrong other than I was very sensitive and when they blew up a little balloon inside the rectum I cried uncle faster than most do. So he said you're just very sensitive. Really? LOL I could have told him that. Sometimes I think all my issues are rectal related. I've tried rectal valium suppositories... maybe you could try those. Lots of women use them in the vagina but I felt they did a little bit more good rectally.
Anyway, hang in there. If you feel overwhelmed come on and chat. Always happy to listen.
L
Hi, I am new to this forum but have been reading all your accounts for the past 3 months. When I first found it I didn't know whether to laugh or cry with relief because I have been feeling such a freak. I have had this condition for the past 4 years and it started with a breakdown after everything went just from horrid to disastrous in my life and i just kept working harder and harder till i couldn't cope anymore. I ended up 4 days of not sleeping, and being nearly voluntarily sectioned. I resisted and went on antidepressants and low dose of diazepam. I kept explaining that i felt there was a knife stuck in my vagina and i felt like i was being raped all the time. The psych people just looked on blankly and since there had been a history of various abuse it was all put down to that. The internal electric shocks were also put down to being just a perception in my mind. I felt so powerless and since when these attack come on i feel so out of control i finally decided to term them panic attacks since that was the only thing they seemed to understand. I managed for work again for a while and then it all got worse again. I have now not worked for 3 years and live a pretty lonely existance. I have not family and very few friends and very or rather no support of any form during the day or week. Sometimes i just want to give up because i have no life and I propably wouldn't get out of bed or go out if it wasn't for my dogs and cats who need feeding and their walk.
The symptoms are pretty much there all day now. A couple of months ago I printed out whatever i could find about pudendal neuralgia and gave it to my doctor and psychiatrist, saying, here, its not just in my mind and i would like a referral to Greenslade and a physio. Much to my surprise they have taken it on board and i have even managed to get a referral to Mr Greenslade in Bristol in Sept. And physio for internal manipulation after the first physio decided she couldnt do it. The physio who did the internal was very gentle but it felt as if she was running her fingernail down the inside of the vaginal wall and that was very sharp and painful. She had only used her fingertip with light pressure and was pleased because it showed up at least part of the problem.
I am confused though because my symptoms move around so much, sometime it feels like its in the vagina, uterus, then clitories, then urethra, than anal, down thighs which feel like they have ants crawling under the skin, around buttocks, into hips, pubic bone and it seems to change sometimes hourly. Does anybody else have this.??
By the way, i asked my GP for something that can sort of control the vaginal arousal symptoms and she gave me Instillagel which i insert and rub around inside. Just wanted to offer this up to anyone else how might need another way of dealing with this horrid sensation. I must admit that sometimes it works and sometimes it doesn't! Can't figure out why it doesn't at times and the only thing i can think of it that the symptom is coming from the bowel? Or I am not getting it in high enough or left it too late. Who knows. I have also been using Buscopan which is a bowel antispasmodic and that seems to calm the constant movement/peristalsis down which can also make things worse. Codeine helps me cope but i try to only use 2 tablets late afternoon and before bed although this past week everything has got worse and i have had to resort to Codeine and diazepam from 3pm onwards just to stay sane. Not ideal.
I must admit that I have trepidations seeing Mr Greenslade as some of the forum feedback was not all encouraging, eg bei g referred to Mr Wong and then there being no aftercare. Having an injection in the troublesome site and sitting for an hour may be classified a sufficient diagnosis but even that seems to be debatable. I am not sure what to make of this.
I also want to say a HUGE T H A N K. Y O U to Violet for this forum and for being there with advice and wisdom. If I hadn't found out about the Pudendal neuralgia and the issue of PGAD raised on this forum I would stil be disempowered. So a big thank you! Also a big thank you to all contributors as your accounts have helped me understand that i am not alone and given me the courage to speak me frankly about it in the appropriate circles.
Welcome to the forum Cintapoppy. I am sorry to hear of all the pelvic pain problems you are having but glad you found the HOPE forum and the information has allowed you to be proactive in your care. Many of us on this forum, like you, figured our own diagnosis and took information to our doctors and said "this is what I have." Good for you for being your own advocate!
Many of us have symptoms that do move around. Personally, I think that is because of pelvic floor muscle spasms, trigger points and cross-talk between nerves in the pelvis. I do not have published research to back up everything I am going to write but there is some literature. Trigger points radiate pain to different areas and if they are more aggravated one day than another then the pattern of pain would be different. If there is a day that pelvic floor muscle spasms are worse than the nerves they are spasming around will vary. Like you, I have problems with my legs as many on this forum do. There are some secondary conditions that sometimes develop with PN such as piriformis syndrome or spasmed obturator internus muscle. If the obturator internus muscle spasms the obturator nerve runs through that muscle and then the inside of the legs will burn, tingle, or any abnormal sensation that goes along with neuropathic pain. If the piriformis has trigger points or spasms the butt will throb and/or ache and if will spasm around the sciatic nerve which then gives neuropathic pain symptoms down the back of the leg. Sadly, many doctors don't think about how complicated the pelvis is, that there can be cross-talk between nerves that one nerve that is firing can recruit a nearby nerve that is totally unrelated to give a new set of symptoms.
Some patients find valium (use the pill directly) suppositories either rectally or vaginally help with pelvic floor spasms. Some patients have specially compounded suppositories that include valium and baclofen for the spasms. I used lidocaine cream rectally before PT for a period of time to help decrease the flare when they worked on me.
You have really done your homework. Like I said before, good for you for being so proactive. That is 1/2 the battle.
2/07 LAVH and TOT 7/07 TOT right side removed 9/07 IL, IH and GN neuropathy 11/07 PN - Dr. Howard
6/08 Obturator neuralgia - Dr. Conway 11/08 Disability, piriformis syndrome - Dr. Howard
4/09 Bilateral obturator decompression surgery, BLL RSD - Dr. Howard
9/10 Removed left side TOT, botox, re-evaluate obturator nerve - Dr. Hibner
2/11 LFCN and saphenous neuralgia - Dr. Dellon 2/11 MRI with Dr. Potter - confirmed entrapment
5/11 Right side TG - Dr. Hibner 2012 Left side TG - Dr. Hibner
Hi nyt
many thanks for your response. I agree with your thoughts about many muscles and nerves being affected and hence the moving around of the various symptoms. I asked a pharmacist whether there are diazepan pessaries and she said here in the Uk they would only be prescribed "off the book" or something like that. For some reason i pressed on my seatbone yesterday and the muscle felt like a red hot golf ball so no surprise that i get sciatic type pain. I am not too familiar with all the muscle and nerve names and get bogged down with the complexity of it all. I have bought Amy Steins book Heal Pelvic Pain and i might try some of the exercixes in there. The Gp keeps wanting me to take meds again neuropathic pain and having tried several with very bad reactions to the meds, including being off my head, i would rather stick to what works for me with the least side effects.
I will try the lidocan rectally instead of the diazepam which i can't get here and see whether that makes a difference when it doesn't work vaginally. Thanks for that tip!! Had not thought of that.
