Editorial Note: Following on from The Princess and the Frozen Pea, this is a second post in a PGAD series. There will be one more on the range of conditions mentioned here that are often linked to PGAD – interstitial cystitis, pelvic floor dysnergia, prostatitis and others. See also PGAD Video
Persistent Genital Arousal Disorder (PGAD) has been associated with SSRI use and/or discontinuation in some individuals. For example, SSRI use was noted as a trigger for symptoms onset in 20% (n= 23) of Jackowich et al’s sample (2017).
Waldinger & Schweitzer note 11% of their sample of 18 women report an onset associated with SSRI use or withdrawal (2009).
Leiblum & Goldmeier report five case studies of women who had their onset of PGAD on or while discontinuing SSRI’s (2008). Other case reports exist (Freed (2005); Goldmeier & Leiblum (2006); Goldmeier, Bell, Richardson (2006); Mahoney & Zarate (2007).
PGAD is often comorbid with other medical conditions and pelvic/urogenital conditions (Jackowich et al, 2017). For example, Jackowich et al. report the prevalence of the following conditions in their sample: irritable bowel syndrome (36.5%, n= 42), pudendal neuralgia (16.5%, n= 19), overactive bladder (16.5%, n= 19), interstitial cystitis (14.8%, n= 17), and generalized vulvodynia (13.9%, n=16).
Waldinger (2009) report comorbidity between PGAD (referred to as Restless Genital Syndrome in his article), overactive bladder, and restless leg disorder.
The relationship between SSRI use and/or discontinuation and other pelvic/urogenital conditions besides PGAD has not reported in the literature. However, RxISK has case reports of individuals, such as myself, who developed these conditions in this context. I developed pudendal neuralgia and interstitial cystitis when withdrawing from an SSRI. We need to get case reports published.
Frying Pan or Fire
Pretty well everyone with PGAD and/or with associated pelvic/urogenital conditions finds themselves in a difficult situation when it comes to treatment. These conditions are often hard to treat and a lot of trial and error is involved.
One of the first line treatments for PGAD is SSRI’s, SNRI’S, or tricyclics, as well as anticonvulsants such as gabapentin or pregabalin. The last thing someone who has a drug-induced injury is likely to want to do is take more psychotropic medication. It may also not be feasible since the individual may not longer be able to tolerate these medications or adjustments to them (i.e. they now invoke akathisia).
The following additional medications have also been used for PGAD: leuprolide, vasopressin, Chantix, Requip and other dopamine agonists, beta-blockers, antipsychotics, mood stabilizers and benzodiazepines.
Topical lidocaine gets tried. Other medications can be applied topically, made at a compounding pharmacy.
As an aside, in addition to SSRI induced PGAD, some individuals develop PGAD via other routes, proposed to be neurological, vascular, pharmacological (other than SSRI’s), and hormonal., which (partially) explains the range of medications tried.
Some lower-risk options to consider may be applying ice (See the Princess and the Frozen Pea). Though, relief is very short-lived. Lifestyle modifications can include avoiding sitting (difficult to you also have medication-induced nerve damage to the feet like I do) and other movements that are triggering, avoiding tight clothes and underwear, and using a pudendal sitting cushion.
When the etiology is hormonally related, some people have figured and find improvement by reducing soy intake.
Pelvic floor physical therapy is another low-risk option for secondary muscle tension or if the pudendal nerve is being compressed by the muscles. Some find some relief with using a transcutaneous electrical nerve stimulation (TENS) unit applied to the sacral area. (If anyone finds an alternative site to place the electrodes for the TENS, that would be helpful to know).
If these lower risk approaches aren’t helpful and one does not or cannot embark on oral medications outlined above, one may try pudendal nerve blocks. While there is much to be learned about the mechanisms of PGAD, Waldinger (2009) offers compelling evidence that PGAD is both associated with pelvic varices and also with sensory neuropathy of the pudendal nerve and the dorsal nerve of the clitoris. Pudendal blocks can be conducted manually, as well as with ultra-sound, X-ray, or CT guidance. CT guidance is considered the gold-standard due to accuracy of delivery of the lidocaine and steroid injected.
Results are variable: relief may last as little as a few hours or could span weeks or months. A series of blocks is often recommended though there are a finite number of times one can do the block, as the risk for (further) damaging the nerve increases. It’s also possible to have adverse events from completing a single block. If pudendal blocks are successful but relief is not long-term, some consider radiofrequency ablation of the pudendal nerve or sacral or pudendal neuromodulation.
Implanting a neuromodulation device involves two surgeries (one to implant the leads temporally for a trial period and one to permanently implant the leads and device). Additional surgeries are required to replace the batteries (i.e. about every 5 years depending on the device).
If entrapment of the pudendal nerve is believed to be causing the PGAD, some elect for surgical release of the pudendal nerve entrapment. This surgery has a long recovery time with many risks. There are some case reports that botox is helpful for individuals with PGAD by blocking the dorsal nerve of the clitoris.
If the pudendal nerve block does not produce relief, one may be left hunting blindly in the dark for which nerve or nerves are involved. There are other blocks that could be tried but they can only be done so often if a steroid is used. If you try pudendal nerve block, it would be helpful to know which block(s) helped, if any.
Additional treatments for PGAD includes clitoridectomy and ECT, which appear too radical to many, especially those previously harmed by treatment. Clitoridectomy also does not eliminate all symptoms. ECT is used based on the theory that it alters the serotonin and dopamine systems that create PGAD symptoms.
If pain is part of the presentation and/or you have pudendal neuralgia, some have resorted to opioids. Ketamine, baclofen, or even an intrathecal pain pump have been used.
We Deserve Better
PGAD and associated pelvic and urogenital conditions can be absolutely debilitating not only in enduring unpleasant sensory experiences and/or pain but the impact these symptoms have on functionality at work, school, and in relationships.
SSRI induced harms such as PGAD bring people to their knees. They are left wary of more harm from treatment but desperate for relief. We need more options. Help us find a cure for PGAD and associated conditions.
The best option out there should not have to be learn to live with it. Having tried many treatments and taken more risks that I would have liked, that’s what I’m doing for now.
Katie B-T: See previous post Girl on a Hot Tin Roof
References:
Goldmeier, D, Bell, C & Richardson, D (2006). Withdrawal of selective serotonin reuptake inhibitors (SSRIs) may cause increased atrial natriuretic peptide (ANP) and persistent sexual arousal in women? Journal of Sexual Medicine, 3, 376.
Goldmeier D, & Leiblum, SR (2006). Persistent genital arousal in women—A new syndrome entity. International Journal of STD & AIDS, 17, 215-216.
Freed,L .(2005). Persistent sexual arousal syndrome (letter). Journal of Sexual Medicine, 2,743.
Leiblum, SR, & Goldmeier, D (2008). Persistent genital arousal disorder in women: Case reports of association with anti-depressant usage and withdrawal. Journal of Sex & Marital Therapy, 34, 150–159.
Jackowich, R, Pink, L, Gordon, A, Poirier, E, & Pukall, CF (2017). Symptom characteristics and medical history of an online sample of women who experience symptoms of persistent genital arousal. Journal of Sex & Martial Thearpy, 0, 1-16.
Mahoney, S & Zarate, C (2007). Persistent sexual arousal syndrome: A case report and review of the literature. Journal of Sex Marital Therapy, 33, 65–71.
Waldinger, MD & Schweitzer, D, (2009). Persistent genital arousal disorder in 18 dutch women: Part II-A Syndrome clustered with restless legs and overactive bladder. Journal of Sexual Medicine, 6, 482-497.
Waldinger, MD & Schweitzer (2010). New insights into restless genital syndrome: Static mechanical hyperesthesia and neuropathy of the nervus dorsalis clitoridis. Journal of Sexual Medicine, 6, 2778-2787.
David T Healy says
Should PGAD be categorized with Female Genital Mutilation with educational and other public health measures aimed at reducing its occurrence?
David
Anne-Marie says
Wow two different systems becoming entwined. I would say FGM is forced physical, psychological and social abuse done without the consent of the victim but similar is done with the victims of antidepressants because PGAD and the possibility’s has not been explained to patients. This is a form of physical, psychological and social abuse as well. It may not be forced in many cases but the lack of information makes it a form of abuse when it is a known affect by the manufacturers and Dr,s (but they don’t care)
If google and the internet says so then its is fact the world lives now by the internet. These drug and other companies will go out of business because no one trusts the authorities anymore.
FOLLOW THESE PEOPLE TO FIND THE TRUTH: NO ONE CARES ABOUT YOU ITS ALL ABOUT MONEY, MONEY, MONEY, THEY ARE ALL ALIENED WE ARE ONLY SHEEP TO THEM. They dance with one another across the globe in finances, they love wars because it brings more money to them. They are EVIL and will engineer it that we all hate each other than hate them. Wake up normal people dont be fooled by them, dont take their drugs and dont let them make you fight with your neighbours because thats what they want (divide and concor, dont do it). FIGHT THEM INSTEAD!
Politicians
Business
banking
Healthcare
LIERS
They do not care about your loss or healthcare. Wake up! Dr are made to not care for you either, money is shoved under their nose to ignore your complaints. They want your money not your side effects.
Carla says
Well articulated, Anne-Marie : )
You have me on your side and I am not ashamed to agree with you.
What will happen if the minority grow and overthrow their flawed monopoly?
The liars NO LONGER WIN!
I left the flock a long time ago and no longer need to sheep follower.
I am FREE.
I am in charge of my own health.
It is mine and no one can control my mind, body or spirit.
Control, money and lying are all part of their modus operandi and if you speak the TRUTH you are black listed!
Anne-Marie says
Wishing you Carla and Rxisk and anybody else out there a very healthy and happy New Year 2018. I’m free now too from the drugs, even if it has left behind some extensive damage, I’m now also in charge of my health again thank god.
Sally Macgregor says
So, the options for women crippled by PGAD, are poky drugs ranging from SSRIs (which may have caused the problem in the first place) through to opioids – all the usual pharmaceutical suspects, when the cause of a problem is unknown and pain/distress intense.
Or attempts to block the nerve pathways, ranging from lidocaine (I wonder how much that stings?) to botox, a tens machine or the far more invasive implants.
Or – surgery. Just how desperate must one be to agree to surgical genital mutilation, a clitoridectomy, which for sure will permanently erase sexual satisfaction. But, as Healy suggests, PGAD is a form of genital mutilation anyway….as is its counterpart, genital numbness. Public health measures would thus, presumably, educate all of us that all drugs that destroy sexual feelings should be banned and anyone supplying them subject to criminal proceedings?
Thank you for this eye watering account of just what is done to women in an attempt to ameliorate a ghastly condition.
dawn dodd says
I am so scared I have this, I have all the symptoms after stopping venlafaxine 5 weeks ago. My anziety is through the roof, doctor dismissed my questions about it. I feel like my life is over
Loz says
Did this ever get better for you?
Staci Kelley says
Did you find releif? Noone will lisen to me. So frustrating
Spruce says
Sally i think i agree with you that a lot of these drugs should be banned ot their use be at least severely limited. I especially feel there is a strong case that SSRI’s should be banned, or at least only reserved for a small minority who have failed to respond to a number of non pharmaceutical ways of treating mental health conditions (of which there are a number, and of which many can be genuinally helpful) .
I know Dr Healy and a lot of people think banning these drugs or very severely limiting their use is too far a measure, but based on a number of factors i think i disagree with this.
Here are the reasons i think a lot of these drugs should be banned, or at least limited to a very small minority who have failed to see improvement after other options have been tried.
* They cause more harms than they do benefit. I know some would disagree with me, but i know a lot of people who have taken these drugs, both by talking to people in general, and i have also spent a lot of time in support groups for people who have taken these drugs both online and in real life. While i have met a few people who seemed to have gotten some short lived benefit from these drugs, and have managed to get off these drugs relatively unscathed, the majority of people who i have met who have taken SSRI’s wish they hadn’t taken them, and have often been greatly harmed by them. If the risks outweigh the benefits, i think prescribing should be at least severely curtailed.
* We cant predict the minority of people who might benefit from SSRI’s, and who is likely to be harmed by them. Taking an SSRI is like playing russian roulette with at least 3, maybe even 4 bullets in the cylinder. It is high risk. Because of this risk, they are not safe and should not be given to what are often some of the most vulnerable people in society. You would never sell a car to someone if it had a 50-60% chance of the brakes failing. The principle should be the same for SSRI’s. If we cant closely predict who will be helped or harmed, then the risk is too high, and therefore prescribing should at least be severely limited, if not banned.
* Often they simply dont work, and they aren’t effective for treating the “chemical imbalance”which is a too simplistic and inaccurate way of explaining depression anyway. Not only do they have no benefit for a large minority, by taking them you are exposed to all the harms they can cause.
* Most doctors are ignorant to the immediate and long term dangers of these drugs, and also the vast majority of doctors have no idea how to safely and correctly withdraw people off these drugs. If a train driver was employed to drive a train but didnt have the skills to do the job safely, and he caused a number of crashes and fatalities, there would be a big public outcry, and great measures would be taken to make sure that it didnt happen again, and that all train drivers were correctly trained and knew how to drive the train safely. This is exactly what is happening with these drugs. Most doctors dont know what they are doing in regards to side effects and withdrawal, and because of this a lot of people are getting badly damaged and killed. Yet there is no public outcry and no reform so that doctors can prescribe these drugs more safely. This is totally unacceptable. No train driver would be allowed the responsibility of taking care of the passangers lives, if he couldn’t do the job safely. If the doctors dont know what they are doing, they shouldnt be allowed to prescribe. Peoples lives are at risk!
* There is no informed consent. A lot of the dangers of these drugs are not well known to the doctors, and as we know are often concealed or greatly minimised by the drug companies. If a patient is not informed of the real risks, then there is no informed consent. The patients aren’t aware of the real dangers, so are being misled into thinking these drugs are safe because they come from a doctor. If there is not informed consent, i think there should be no prescribing.
* The system that regulates the safety of these drugs is deeply flawed and broken. The drug regulators have a massive conflict of interest, and often a lot of their employees are ex drug company employees, or have strong ties to the drug companies through having shares in the drug companies. If the drug regulators cant be transparent and honest and competently monitor the safety of these drugs, then no prescribing!
These are the main reasons i think a lot of these drugs should be banned or their use severely limited.
Spruce says
Sally i especially warmed to the idea of criminal proceedings. Preferably leading to custodial sentances where people have lost their lives or have been severely damaged. Or in my case possibly never being able to enjoy sex ever again for the rest of my life.
Carla says
Hi Anne-Marie,
I wish you and all the RXISK members, all the best, also.
We can never buy good health however, we have survived so much and we should be proud of ourselves.
As far as I am concerned, these drugs should have never evolved.
Carla says
We, the true survivors are a little black box that can never be deleted or destroyed and when our souls depart from this universe, we will all make history. Our spirits will live on and on and the truth is out there for all to read. RXISK is the little black box.
https://www.youtube.com/watch?v=AX2kp2FDCK8
Anne-Marie says
This is such a cool song Carla! a few people mentioned MH370, (very, very sad : (. It was made in 2009 before that happened though but I agree it fits victims of any deceit and lies nicely.
Left on my own at 600ft deep, I was looking out for help while everyone else was looking out for themselves. (Soooooooooo true)
Thanks for posting it!
Carla says
I agree with you, Anne-Marie,
They place the blame on us when they play dirty.
They want to accept no accountability for their wrong doing.
Then they make us look like liars.
Yes,
Some of them, as the song describes very well:
‘Left on my own at 600ft deep, I was looking out for help while everyone else was looking out for themselves’ ~ Very true!
I am not ashamed of speaking up!
Thank you, Anne-Marie for your concern.
There were many who did not care, when we needed support and help.
Spruce says
Carla you are 100% right about how they like to shift all responsibility about the damage caused to you by their drugs back to the patient.
I experienced this when i tried to complain to Avon Wiltshire Partnership about the PSSD i had been left with, and the over rapid way the psychiatrist tried to take me off benzodiazepines, which left me with all sorts of problems which lasted many years.
AWP stonewalled me, avoided questions, deliberatly stalled the complaint process, and answered my questions with answers that weren’t even relevant to my questions. They also twisted the truth on a number of issues, and also outright lied on two occasions, which i was actually able to prove, and which the ombudsman did NOTHING about!
They also tried to paint me as “out of control, violent, and someone who had abused his medication, and who cant be taken seriously, because i have had a mental health condition etc” .
None of this is true, and i have no history of violence, and i took my medication as prescribed. I also can be taken seriously, and i know that what happened to me was real and was caused by their drugs.
They managed to stick there head in the sand about everything that had happened to me, and the end conclusion was that i am “the problem”.
The way i was treated by AWP was nearly as bad as suffering the PSSD for 10 years and going through the benzo withdrawal which also lasted years. It was really bad. I still cant believe people can treat other people like that. Especially people who are vulnerable and are suffering from mental health problems, and/ or going through protracted withdrawal. It came close to pushing me over the edge. I am still very angry about it.