PGAD - persistent genital arousal disorder

[Laurina]

The MRIs did not show pudendal entrapment; my specialist told me before I went for this test that it wouldn't, as MRIs are not yet advanced enough. However she said that even if nothing showed up on the MRI, it wasn't because I didn't have a problem(s).
She diagnosed me with pgad, vulvodynia, pudendal neuralgia, painful bladder, uretheritis and a revved up nervous system (where I feel more pain than what there actually is).

[Laurina]

Radioembolization is used to treat pelvic varices, which can keep the blood in a certain area and keep it from flowing back out. It is usually performed by interventional radiologists.

[adelaidedeb]

Laurina what is your symptoms? Sounds abit like me but do you have the constant edge of the worse acidity orgasm pressure? Where the g spot is feels so engorged and like a inflamed full bladder in that wall

[ladybird]

Hi Laurina and AdelaideDeb,

Wow....you guys are describing my world....and obviously none of us want to be experiencing this debilitating condition....but given that we are....it is SO good to be able to connect with people who can understand this prison, speak this pain language and breath some hope into this nightmare.

I have had unwanted arousal on and off for 20 or more years. I can relate to the acidic orgasm and acidic wee. My pelvic floor is too "strong/tight/activated" which makes my bladder, bowels and clitoris irratated most of my waking hours. It's the unwanted arousal that really upsets me. That experience/sensation is something that I should be able to decide when and where it happens. Feeling fully engorged and throbbing is the other "wonderful" (not) daily sensation I get.

I have been doing the dilator stretches, relaxation techniques (slowed breathing, hot baths, planned nice activities throughout the day - reading, craft), exercise...., getting on theses forums/realising that I am part of a cluster of people - not just a freak on my own, seeing my pain specialist counsellor and "unpacking" a whole lot of blocked discussions I haven't been able to have because of idiot doctors telling me it was all in my head.....and basically setting up a "pain management plan" to improve my quality of life. I am also trying to avoid surgery but am getting to the point where I am strongly considering the botox or nerve block with Dr Vancille. Lyrica and Endep make me to groggy so I just take a sleeping tablet at night and pandaol during the day to help clear my cognitive fog.....and try my best to function.

Have you guys had the botox or nerve block? Thanks so much guys - I've really gained from reading your honest accounts on this forum. x

[Laurina]

Hi Deb and Ladybird,
My symptoms were more that I "felt" my bladder was full when I would sit for any length of time, but when I would get up to go, if I waited a bit to watch the end of a news story on TV, well I would forget why I got up - a true need to urinate was not there obviously, but my specialist explained it as irritation on the pudendal nerve sending wrong signals again. To this day, I will quite often get burning upon urination, without any bladder infection.
I did not see Dr Vancaillie, but a urogynecologist in my part of the world. She got me on Lyrica first; I stuck with it even if it made me terribly drowsy and eventually it got to be less bad. I'm afraid that without it my symptoms would come back, as we did a 4 month trial without the medication, and I went into a pre-PGAD revved up nervous system state. The doc explained that this is one of those meds that people don't believe it is helping until they stop taking it, which was my case.
I did go for 3 sets of R & L sacral and pudendal nerve blocks at about 2 month intervals. My doc used lidocaine and steroids. From the first time, it reduced my symptoms tremendously. The doctor explained that she was not the sole cause of my success, but I had to factor in all the other things that I had been doing like PT, getting my head in the right place, counselling, swimming, etc.

[Violet M]

no I haven't had any nerve blocks yet. Never heard of that other nerve block you are talking about?

Inferior hypogastric plexus block would be to see if possibly you have a different nerve other than the pudendal as the culprit. It innervates the Frankenhauser plexus that goes to the cervical and nearby areas. You can read more about it in this article. http://www.bumc.bu.edu/sexualmedicine/p ... -function/ You can go to the article and search on the word "Frankenhauser".

[adelaidedeb]

can you girls work? There is no way I could hold a job its bad enough being just at home. Like now its sooo acidity and on edge I don't know if I should pee or orgasm. I have no social life at all atm and I cant even get to the shops my toes curl in pain when I stand. I cant really sit either that is why im so glad to have this recliner I can just lie with my legs bent up on an angle to block it abit. Lately its constant. Just rang Susan Evans rooms and shes busy until early next year!!! So upset I cant live like this anymore

[Laurina]

Deb,
Yes, there is much more quality to my life now; even if I am not in the official work force right now (for unrelated medical reasons) I do quite a bit of volunteer work, and I keep active during the day.
Regarding Dr. Evans, may I suggest 3 strategies that might help:
1. phone her office and ask to be put on a cancellation list as you require urgent care
2. find out what the doctors clinic days are, show up early on one of those, and ask if the doctor can see you as it is an emergency. Say that you are willing to wait until she finishes with her other patients... Apparently here a doctor cannot refuse to see you if you have an upcoming appointment, but you cannot possibly wait. The only thing that would interfere with this strategy is if the doctor has to perform surgery right after office visits, or has an important prior engagement.
3. see your primary care doctor and ask him or her to directly contact Dr. Evans, as things have deteriorated and you need medical care of her expertise.
Food for thought. Maybe others on the forum would have suggestions on how to get in faster with a doctor who has a long waiting time.

Glad that your recliner provides much needed relief. Get the rest you can.

[Violet M]

no I haven't had any nerve blocks yet. Never heard of that other nerve block you are talking about?

Inferior hypogastric plexus block would be to see if possibly you have a different nerve other than the pudendal as the culprit. It innervates the Frankenhauser plexus that goes to the cervical and nearby areas. You can read more about it in this article. http://www.bumc.bu.edu/sexualmedicine/p ... -function/ You can go to the article and search on the word "Frankenhauser".

I got distracted and forgot to finish my post so I just wanted to add an article that discusses how Frankenhauser's plexus and the cervical area can be involved in orgasm. Not saying it is in your case, Deb, but I'm just throwing out information to consider. If you google it, you can read more about nerve sparing surgery to preserve the ability the Frankenhauser plexus in order to preserve the ability to orgasm.

http://www.ncbi.nlm.nih.gov/pubmed/8263867

J Reprod Med. 1993 Oct;38(10):781-90.
Cervical removal at hysterectomy for benign disease. Risks and benefits.
Hasson HM.
Author information
Abstract
An assessment of the risks and benefits of total and subtotal hysterectomy for benign disease was performed using the published literature, including a MEDLINE search, on all studies dealing with hysterectomy and related topics from 1946 to 1992. The shift from subtotal to total hysterectomy occurred before cytologic screening was accepted. Currently, SIL is diagnosed by cytology, evaluated by colposcopy and treated preferentially with cone biopsy. Prophylactic removal of the cervix does not eliminate the risk of cancer: it may shift the risk to the vaginal epithelium. The cervix has a role in sexual arousal and orgasm, probably due to stimulation of the Frankenhauser uterovaginal plexus. Bladder and bowel dysfunction following total hysterectomy may be related to loss of nerve ganglia closely associated with the cervix. Increased operative and postoperative morbidity, vaginal shortening, vault prolapse, abnormal cuff granulations and oviductal prolapse are other disadvantages of total hysterectomy. The cervix is not a useless organ and should not be removed during hysterectomy without a proper indication.
PMID: 8263867 [PubMed - indexed for MEDLINE]

The fact that you seem to have urinary sphincter issues points more toward the pudendal nerve than Frankenhauser's plexus since the PNE innervates the bladder sphincter as well as playing a role in orgasm but when I was in bad shape I would have left no stone unturned in figuring out what was wrong and how to fix it so I thought I should mention other possibilities for you to consider just in case.

I'm wondering if you could get into Dr. Vancaillie if you can't get into Susan Evans sooner.

I don't think I could have worked when my PGAD was really bad. I pretty much quit going places I felt so horrible but now that PGAD is essentially cured I am working again.

Violet

[adelaidedeb]

Hi sorry haven't been on here for a while. I managed to get a cancelation appointment the 5th of September so at least its only 2 months away. I have gone back on endep as im desperate to have at least the edge taken off. The last few days ive managed to move around abit more and even went shopping with my daughter. Went back to the other doctor that was doing the neural therapy with needles. But because the last two horrible needles in my groin and stomach didn't work she doesn't think it will work on me. Having another blood test to check my hormones. When I was breastfeeding was the best in those 3 yrs and as soon as I stopped its been worse and worse. 3 yrs ago it really went bad and I reckon its when I was starting to menopause. First time in my life my back has gone out and oh boy the pain but NOTHING scares me like this dam urethral orgasmic unbearable irritation. Im thinking it must be my pudenal nerve what else can it be??