Health Organization for Pudendal Education

Deb, I know lot of the PN docs think the pudendal is the problem for many people with PGAD. So, you are very likely on the right track - but you also want to rule out possible spinal nerve root impingements such as tarlov cysts if you haven't already. Can't remember if you had an MRI of the lumbosacral area.

Violet

I'm posting here in case folks don't see it in the Welcome Forum..

I also have PGAD. It's been at a much lesser level than it was last year. I've got a host of gynecological problems too: Menorrhagia, subseptate uterus, & adenomyosis to name a few. My SIL has endometriosis. She's aware of my long periods (up to 2 weeks) & suggested I research 'chaste tree berry supplement', which has helped regulate her periods, & her vomiting & migraines..

While researching, it's been suggested that the monks use this supplement to quell sexual urges.. I started thinking 'Would this also help those of us suffering from PGAD?'..

My question is, has anyone tried this supplement for this purpose, & found that it works? I'm interested in hearing your thoughts.. Whether you think it would help or not. I've got an appointment next week with my gyno, & would be interested in discussing this with her.. If it could possibly help some of the folks here suffering to a greater degree than I am right now, that would be great!

For the ladies who are nearing the end of your rope with horrible arousal symptoms, believe me, it CAN get better! I've had PGAD for just over 3 years now. Last year at this time was much worse.. Keep trying different treatments & meds! If one drug doesn't help, switch to another. We're all different & react differently to them. What works for me may not work for you.. I'm on 60 mg of nortriptyline once per day. It's a tricyclic antidepressant, but I feel it's helping with my arousal. Cymbalta did help me quite a bit, but it was cost-prohibitive for me & I got breakthrough pain, so I stopped that.. I have a topical cream that I apply when I have pain, & ice is always an option too. Hang in there, don't give up, & know that you aren't alone.. Others have gone through or are going through similar experiences.. We understand & we care.

It's been a LONG time since I wrote on here and I apologize in advance for this being so lengthy. I have had PGAD for over 14 months now and everyday I suffer. Everyday I cry. I have a 1 year old and 5 year old. It is SO hard. I have never been in the moment with them. It takes all I have to get through every day. I have no friends. No family. My husband helps as much as he can but he works and this disorder has torn our marriage apart. I have tried just about everything for this disorder. I live in southern Cali. I have travelled everywhere. I will be seeing Dr. Echenberg at the end of this month as my last doctor that I will probably ever see for this because I am just plain exhausted and then after seeing him I will have to make a decision between whatever his regimen will be, Dr. Goldstein's proposal of a vestibulectomy and my pain Dr's proposal of an intrathecal pain pump. The latter two are no picnic. I've exhausted everything else. Below is a list of everything I've done. If you don't see something on there , it's probably because it's already been discussed with one of my doctors and decided for one reason or another it was best not to do it. I will keep you updated on which plan I decide on. Something must work. I have no life. My kids need me. This sucks.

MEDROL DOSE PACK (these helped in the beginning but do not help at all anymore)

NEURONTIN (been on anywhere from 900 to 3,000mg a day for long periods of time. Not much benefit to stay on them)

PELVIC FLOOR PHYSICAL THERAPY (flared me up worse . Did this for months prior to and after PGAD occurred.)

BILATERAL PUDENDAL NERVE BLOCK (many performed by Dr. Dimon in Michigan with no benefit)

NERVE BLOCKS DONE CLOSE TO CLITORIS (one done by Dr. Dimon in Michigan. PGAD free for one night)

VALIUM 2-4MG UP TO 3X  A DAY ( no help)

VALIUM VAGINAL SUPPOSITORIES (no help)

CYMBALTA (no help)

TRAMADOL (does not really help with pain but if taken enough will help the brain to be distracted enough from the pain but the side effects for me are dizziness and very very talkative and constipation)

CHANTIX (made me violently ill)

TESTIM (was not absorbing this medication)

ESTRADIOL (Did this for many months to see if cause could be part hormonal. Did not help).

WENT TO A SEX THERAPIST ( this was no help at all. Very stressful to try and explain something so rare and embarrassing to someone who has never dealt with it and talking about it does not help. Just want it to go away.)

HYPNOTHERAPY ( concluded I was unhypnotizable)

ACUPUNCTURE ( Did 4 sessions with no results)

REIKI (did about 5 sessions with no results other than feeling more relaxed)

ATARAX (was not able to take because it make me so tired and I couldn't function with my kids)

EFFEXOR (made me very sick to my stomach for a few days)

EXERCISE (still the only thing that helps with the PGAD for the time I'm working out)

YOGA (helps a little)

PERCOCET (does not help)

VICODIN (does not help)

LYRICA (does not help better than Neurontin)

CELEBREX (does not help)

INTERSTIM THERAPY (does not help PGAD or bladder)

MEDICINAL CANNABIS ( very dangerous if you have children to experiment with this! I ended up in ER. Although I will say I had no PGAD..but I also could not feel anything on my body. Was completely numb for about 2 days. I would love to know the right dose to keep PGAD at bay without being paranoid to the point of feeling like you are squashing your baby when you feed her or falling of the edge of the earth. NO fun. I need a high CBD and pretty much no TCH form and I have had no success.

CYCLOSPORIN (very dangerous drug. Did nothing. Idea of Dr. Peters)

VOLTAREN ORAL (thought this might work since prednisone did. It did nothing)
BOTOX (Mistake. Did nothing for PGAD but they put some in my bladder to see if it would help my frequency and it gave me retention.)

CLONAZAPAM ( helps to sleep at night but does not help PGAD although I tried this because I read it helped a patient get rid of their PGAD)

BUPENORPHINE (BUTRAN PATCH) 5MCG / HOUR (did not help PGAD and caused hands to go numbs for weeks)

NUCYNTA (NARCOTIC / OPIOID) 50MG ( did nothing)

VIIBRYD (ANTI DEPRESSANT) (did nothing)

EMLA CREAM (does help with numbing the clitoris for an hour or so but eventually causes sores on the delicate skin area)

VEIN SCLEROTIZATION TO THE LEFT SIDE ( had this done 1x by Dr. Hibner because he saw mild congestion. But no benefit)

BILATERAL DORSAL NERVE BLOCK ( 2 times by Dr. Hibner) ( terrible systemic side effects from the steroid component that I am STILL dealing with. Anxiety, agitation, insomnia, increased appetite, "roid rage". Can't wait for this to be out of my system. I am not getting 3rd block. I have had no benefit from these blocks other than the first 12 hours or more right after the procedure. It's definitely the dorsal nerve because once it's numbed I am so much better! Not perfect. But tons better. Not worth going through the systemic side effects that happen around week 3 or 4 though….especially since I am not getting any long term PGAD relief. Not even for a day.

SOMA- Didn't help

VALTREX (was told by another patient that this may help even if you don't have the herpies virus) Some days I think it mildly lessens the
PGAD but it's not consistent.

ALPHA STIM- This is similar to a TENS unit but supposed to be way better. It is made by Allevia Health. It made me so much worse. I gave it a month.

DOXYCYCLINE- Was on this antibiotic for 2 weeks because I was positive for ureaplasma. Did not make anything better however.

SPINAL NERVE BLOCK OF S2,3 & 4. -This was done by Dr. Prager at UCLA. It left me paralyzed for about 6 hours and it did mostly take the PGAD away. He thinks because of this that a intrathecal pain pump would work. However, I am not crazy about that idea because it's a big surgery and a huge device would be placed in my abdomen with medication that would be put into my spinal fluid for pain relief. I have a follow up with him next week. We will also talk about another version of neuromodulation. It would involve having to take out the Interstim that Dr. Peters implanted and doing a new one Dr. Prager's way. Ugh. It never ends.

Insurance denied neuromodulation.

SEROQUEL- This is something Dr. Prager just started me on early June 2014. . 12.5mg at night. So far, no benefit.

TEGRETOL- Just starting this med on 6-22-14

TOPAMAX-

STARTED A NEW DIET THAT IS NON-VEGETARIAN JUNE 2014. I HAVE BEEN VEGETARIAN FOR 8 YEARS. SEEING IF EATING ANIMAL PROTEIN WILL HELP ANYTHING. (never worked)

STARTED ON MEDICAL CANNABIS IN JUNE 2014 UNDER THE CARE OF DR. ALLEN FRANKEL. TRYING HIGH CBC AND LOW THC LEVELS AND SLOWLY INCREASING THE THC UNTIL I SEE BENEFIT OR HAVE TOO MUCH PSYCHO-ACTIVITY. (never worked)

Well, no one can say you haven't tried, that's for sure.

Do you have any bladder issues at all? If so, I'm surprised insurance wouldn't cover neurostim. Maybe it would need to be coded differently than it was?

What about PRF of the dorsal nerve? If the dorsal nerve block is the only thing that worked.....I don't know.....maybe it's something to ask Hibner about.

Wishing you luck with whatever you try.

Violet

I will say this. Dr. Prager is over 90% sure that an intrathecal pain pump will take away the PGAD sensations. There's a trial for this. So you would know first if it would work for you. I haven't had the trial done yet. If you don't care about a big tuna can shaped device sticking out of your abdomen ,especially if you are on the thinner side, then I would say MOVE INTO ACTION AND GET THIS GOING…
Dr. Goldstein's proposal of removing the peri urethral glands makes sense somewhat to me but it's weeks of recovery and I am not sure if I can risk up regulating my nervous system even more and potentially making things worse by doing surgery on my genitals.
I am going to See Dr. Echenberg next week and I think it's work hearing what he has to say since he has a non surgical approach but I do know that one of his methods is bladder instillations and that I just won't be able to tolerate. Some of his patients do them at home by themselves! I just couldn't imagine! My urethra is just so tender and painful and I"m SURE that's part of the problem but I don't know why. Maybe he can figure that out for me. I will have way more information when I return on the 31st.

LucySky wrote: My urethra is just so tender and painful and I"m SURE that's part of the problem but I don't know why.

The urethral sphincter is innervated by the pudendal nerve. Dorsal clitoral nerve is a branch of the pudendal. Definitely makes you wonder if it's the PN that's the culprit. Hopefully Dr. Echenberg can help you sort this out.

Best,

Violet

There is an interesting article on RGS/PGAD in the current (July/Aug) issue of Scientific American Mind titled 'Endless Arousal: When the Brain Gets Mixed Messages"..

A friend pointed it out to me, otherwise I wouldn't have found it. Online links take you to the first paragraph or so of the article, then they either want you to log in or to purchase the article to finish reading it. I found the magazine in a good-sized bookstore here in Canada.

I found that article, and it is very sensitively done. Thanks for the info about how to get a hold of it.

A long time ago, when every doctor was experimenting with medications, I had it. I am glad we are talking about it. I did not know what I had and was seeing the Chief of a Pain clinic in a medical school who was shooting lidocaine into my private area twice a week so I could digest a half a sandwich without throwing up and sit for a few minutes. I had lost 35 pounds in a few months, had five more spinal surgeries and wound up at a pain clinic with "unknown source of pain" - UTMS AT SAN ANTONIO, TEXAS. Dr. Walsh was trying to enable me to breathe after almost two years of this mess. Trying different medications. Topamax was tried. This happened to me. I was seeing a phychologist once a week and we discussed recipes since I did not see pink elephants and did want to live. I told her and SHE flipped out. (a young woman) I never told anyone yet. I am now. I had to learn to walk again and took long walks several times a day. I was watched like a hawk by my husband, so I took the pill, left the house to walk. After this incident, I spit it out, threw it in a bush and walked on. In a week, he said, "you seem better now". I should. They were over-medicating me and everybody knew more than me about my body. The bush is full of pills and so is the toilet. If you are taking this pill and have this problem, decline it. You will feel better. I did not need this problem along with the pain I was in. Nobody discussed this later on when I arrived at Mayo, but it was tied to Topomax for me. Carlie

feeling like i am going insane today...pgad is thru the roof...i am on 150mg of lyrica twice a day and 25mg of endep at night...nothing is helping today..dont know why it is playing up..pain in my back is horrendous too...just took some valium to see if that calms it down...omg i feel like I'm going mental today..if anyone is out there please talk to me...will this calm down again or i will go insane..