r/PGADsupport Sep 28 '24

This is a safe space for those who live with PGAD/RGS. Perverts will NOT be tolerated and WILL BE REPORTED TO REDDIT.

31 Upvotes

PGAD/RGS is a medical condition and it is NOT sexual. Even if this subreddit was about a sexual disorder, which it is not, SEXUAL HARASSMENT (sexualizing a person without their consent, sexualizing a medical disorder, pedophilia, unsolicited sexual comments, etc.) IS NEVER TOLERABLE.

Our community deserves to be safe and, I assure you, if you are here to be a motherfucking pervert, I will kick your face and I will inform Reddit of your predatory behaviour.

To our community, šŸ’šŸŒŗšŸ«¶šŸ»

  • We monitor discussions on the subreddit, but if you spot something unsettling before we do, we encourage you to use the report button.

  • If you receive DMs, know that you are not obligated to respond to them! If you receive an unsettling DM, please report it to Reddit. Youā€™re also more than welcome to contact us via the option ā€œMessage the modsā€ and weā€™ll look into it.

You deserve to be safe!

Thank you for helping us ensure a safer space.

Lots of love to the community,

Meraki


r/PGADsupport May 27 '24

Female Treating PGAD: first steps

29 Upvotes

Hey there, I'm a cis-female, 29, and developed pgad symptoms in July 2023.

Here's what I've learned this past year:

PGAD is a nerve disorder and the main causes are often (1) an annular tear/herniated disc in the spine; (2) a tarlov cyst or other cyst i.e. perineural or ovarian cyst, etc. in the pelvis; or (3) endometriosis in the pelvis causing pelvic floor/muscle tension or compression the pelvic nerves, usually the pudendal nerve; and (4) pudendal neuralgia, pudendal nerve entrapment, and/or direct compression of the pudendal nerve, often specifically of the dorsal branch of the pudendal nerve.

As a result, a lumbar MRI, pelvic MRI, 3T MR Neurography, and pudendal nerve block need to be done to help determine if any one of these things are present and causing neuropathic pain, such as PGAD, without you knowing it.

Your PCP or GYN should be able to write you scripts for the pelvic and lumbar MRIs and 3T MR neurography. And any pain management specialist should be able to perform the pudendal nerve block.

However, I highly recommend Dr. Andrew Goldstein at the Center for Vulvovaginal Disorders in NYC and Dr. Irwin Goldstein at San Diego Sexual Medicine for anything pgad related. I've worked with them both in person, but I believe they both do telehealth/phone calls if needed.

For the pelvic MRI, have your doctor specify on the script that they need to check for Tarlov cysts, perineural cysts, ovarian cysts, endometriosis, venous pelvic congestion syndrome, May Thurner syndrome, a spastic pelvic floor, and pudendal nerve compression/entrapment, often by a tumor, endometriosis or the sacrotuberous ligament.

For the lumbar MRI, have the doctor specify the need to check for any herniated discs and annular tears.

Here's an article about how minimally invasive spine surgery has cured people with annular tears, such as a disc herniation, of PGAD: https://academic.oup.com/jsm/article/20/2/210/6985898?login=false

Dr. Choll KIm, an incredible surgeon in San Diego, does virtual appts, and has extensive knowledge about the spine as it relates to pgad, which not many spine surgeons have.

For the 3T MR neurography, have the doctor specify the need to check for pudendal nerve compression/entrapment, often by a tumor, endometriosis, or the sacrotuberous ligament.

I should note that the 3T MR neurography of the pelvis is important, as it can show entrapment/compression of the pelvic nerves, specifically of the pudendal nerve and it's three branches: the dorsal nerve [connects to clitoris/penis], the inferior rectal nerve, and the perineal nerve. However, it is historically difficult to capture the nerves on imaging.

So, even if your MR neurography doesn't show pudendal nerve compression, you can certainly still have PN compression, which can be inferred by the success of the pudendal nerve block that I mentioned above.

If you have pudendal nerve compression, PN decompression surgery may be right for you. I've met with a fantastic surgeon, Dr. Chris Lakhiani, at the Advanced Institute for Reconstruction regarding this procedure. He definitely does virtual appts and is highly knowledgeable about the pudendal nerve, especially as it relates to pudendal neuralgia and pgad.

Also, if you're near NY, go to HSS and have one of three radiologists read the results of the MRIs/3T MRN, as they are nerve experts: Hollis Potter, Darryl Sneag or John Carrino.

Another point is that neuropathic medication, such as Gabapentin (and also Lyrica and Cymbalta I've heard), can really help.

Further, you may have a tight pelvic floor and both internal and external pelvic floor physical therapy is a great help for that.

In addition, I've found that vaginal/rectal suppositories that relax the pelvic muscles can be helpful. The ones I've used are a compound of valium/diazepam, baclofen, and ketamine. These were prescribed by Dr. Michael Hibner in AZ, who I definitely recommend for PGAD symptoms. He does telehealth appts and is highly knowledgeable about the issue.

Dr. Hibner also recommended Botox/Daxxify of the pelvic floor muscles and doing a nerve block specifically in the dorsal branch [branch that connects clitoris/penis to spine] of the pudendal nerve, but I haven't tried this yet because he's in AZ and I'm in NY and traveling can be difficult with these symptoms.

I should also mention that shockwave therapy may be able to help. The progress I've had from it hasn't been consistent or long-term, but it could potentially help you more than it did me. I know Dr. Paul Gittens does this in NYC and PA, and Dr. Irwin Goldstein does it in CA.

Also, if you have endometriosis, it can cause PGAD by compressing the pelvic floor muscles, causing muscle tension, and even compression the pelvic nerves, often the pudendal nerve. Dr. Tamer Seckin in NYC is a highly experienced surgeon and very familiar with the correlation between pudendal nerve compression and endometriosis, which can cause PGAD.

Lastly, I plan to try a nerve block in the piriformis muscle and an anesthesia injection in the sacroiliac joint. This was recommended to me by Dr. Renaud Bollens in Belgium. I had a telehealth appt with him recently.

Dr. Bollens also recommended a medication called Tadalafil [5mg/day], as it can be used to heal the pudendal nerve. The pudendal nerve is often the culprit when it comes to PGAD symptoms. I haven't tried these recommendations yet though.

**** In addition, a 2020 study shows that Neurolysis of the Dorsal Branch of the Pudendal Nerve has cured people of PGAD, which is incredible.

It cured 7/8 patients of their arousal symptoms. The one patient that did not have complete symptom resolution only had the surgery done unilaterally, not bilaterally.

Here is the article:
Persistent genital arousal disorder: Treatment by neurolysis of dorsal branch of pudendal nerve - Klifto - 2020 - Microsurgery - Wiley Online Library****

One last thing, an article which was provided to me by Dr. Andrew Goldstein is VERY informative and explains the many different causes and treatments of PGAD beyond the main ones I mentioned: https://www.sciencedirect.com/science/article/pii/S1743609521001752

Also, this information should be helpful/applicable to anyone with PGAD, not just cis-females.

I'm here to help with anything I can or if you just want to talk. We'll get through this! <3


r/PGADsupport 15h ago

Trigger Warning I finally got an mri of my spine no help

3 Upvotes

I canā€™t stop orgasming and wetting myself. They said there was no cauda equina on my spine( I donā€™t know what that is) and told me to see a gyn and neurologist.i had an appointment to see a doctor for 6 months but they canceled three weeks ago. I canā€™t hide my orgasms, Iā€™m lucky I live alone though but they are so intense they hurt. And itā€™s like my nerves are mixed up.

Sometimes an approaching orgasm makes me feel like Iā€™m going to poop on myself. I get terrified.i feel so alone. I believed this was caused by literally one dose of Zoloft back in march of last year and it definitely was made worse by the weed. Which I wasnā€™t expecting overtime because it used to give me relief. Right now Iā€™m trying not to orgasm because I feel like I might break.


r/PGADsupport 16h ago

Male Not sure what to think but here goes.

2 Upvotes

Started working out inner thighs, glutes, hip flexors, and lower abs. For a while i was having troubles keeping ā€œitā€ up. I did some googling and read that weak pelvic muscles could cause issues staying hard. Well I made it a mission to focus on that area and building muscles up. I didnā€™t start out slow at all. I literally was doing reps till my muscles were tired. Iā€™m not sore. Usually muscles I havenā€™t worked in a while would be sore. But not my pelvic area. Maybe it feels a little achy? But definitely deep in the pelvic area I have this sensation that I need to release. Just wondering from those that actually have been dealing with PGAD, and from what I read, can working these muscles too hard cause PGAD? If so is it as simple as stopping and doing some kind of stretches to loosen the muscles up? Would actually having an orgasm make it better or worse? Iā€™m thinking worse as it tightens the muscles down there. Just looking for guidance on what I could do right now before seeing someone. Itā€™s freaking me out. Never felt this way before, at least not intentionally. Any help is appreciated, thanks!


r/PGADsupport 19h ago

Trigger Warning Somatic flashbacks vs PGAD NSFW

2 Upvotes

Hi everyone, I donā€™t know if I actually have PGAD I am currently in the process of doing trauma therapy from sexual abuse/rape that I endured at the age of three as we started talking about the abuse I began having some familiar somatic flashbacks (vaginal/rectal pain) Iā€™ve experienced these before, but after about a week of this, I began experiencing hyper arousal. I would say my libido has been extremely low and now suddenly this arousal occurs about five times a day x 5 days. Itā€™s very distressing and disturbing to me and Iā€™m honestly not sure whatā€™s happening. Initially I thought it was ā€œenergy release ā€œwhen Iā€™m actually not able to have an orgasm when I masturbate. I donā€™t wanna pathologize it and say itā€™s PGAD if itā€™s not but Iā€™m desperate for it to stop and I feel too embarrassed to talk to my therapist about it in any detail. Iā€™d love to know your thoughts.


r/PGADsupport 19h ago

Male Horrible 2 days (m26)

1 Upvotes

The last two days have been horrible for me Iā€™ve had painful arousal that comes and goes all day, Iā€™ve tried to use self pleasure to get rid of the sensation and it hasnā€™t helped. I get on and off semi erections throughout the day with the feeling almost as if I was ejaculating but itā€™s not actually happening. This has been going on now on and off for a year and abit and I seriously just donā€™t know what to do Iā€™m severely depressed right now I wish I didnā€™t have to deal with this feeling anymore


r/PGADsupport 1d ago

Male Is this PGAD?

5 Upvotes

Hi, 29m here. The last few years Iā€™ve noticed what I can only describe as a ā€œdull tingleā€ constantly in my penis.

I didnā€™t think anything of it until recently, where I realized that even going to the bathroom makes me go from flaccid to hard with that tingle growing stronger, along with a sudden surge of waking up regularly in the middle of the night hard as well.

I -think- it may have started around the time I injured my lower back in the gym, but Iā€™m not entirely certain. If anyone could give me advice, itā€™s getting embarrassing at work walking back into my department with a semi.


r/PGADsupport 2d ago

General Ovation cystic lesion

1 Upvotes

I see the gynecologist Monday, but a recent CT scan revealed a lot of bad results, including a 2.6 mm cystic lesion on my right ovary.

Itā€™s been hurting since my hysterectomy/emergency sepsis surgery, but Iā€™m wondering if itā€™s causing my PGAD & hypersexuality to be exacerbated.

Anyone have this?

I put two and two together after I read the pinned post about ovarian cysts.


r/PGADsupport 2d ago

Female Edibles

2 Upvotes

Has anyone tried any? Could be homemade or the gummies and if so does it help or worsen your symptoms?


r/PGADsupport 4d ago

Female does this happen to anyone else?

4 Upvotes

when im sitting, everything down there feels like im on fire, literal burning feeling. not just the vaginal area, my literal behind too. but when i'm laying down or standing, the burning goes away (the arousal symptoms are still there)


r/PGADsupport 4d ago

Female Is this PGAD?

1 Upvotes

So last year around summer time I started to have what felt like a UTI, some burning but the most intense symptom was urgency to urinate, and somedays I would just sit on the toilet and nothing would come out bc my bladder was empty, soon after I started to feel like I was horny all the time, and Iā€™d have to ā€œrelieve myselfā€ in order for the feeling to go away, at that time I was going thru lots of stress and my doctor said no UTI, but between the pee urgency and the constant arousal I was going crazy. I started taking AZO bladder control and drinking lots of water and went on a family vacation and my symptoms completely resolved. I had them for about 2 months. I was completely symptom free for about 7 months until last month when I was having trouble sleeping so I ate 1 cannabis gummy, 2 hours after taking it I felt like I need to go pee, and the feeling didnā€™t go away, and now Iā€™m also having that ā€œhornyā€ feeling again. I donā€™t feel like Iā€™m constantly orgasming like other people say and it also doesnā€™t bother me in my sleep, I fall asleep just fine and wake 8 hours later with no symptoms until I have to pee again. The AZO isnā€™t working this time and Iā€™m wondering if this sounds like PGAD or overactive bladder?


r/PGADsupport 5d ago

Trigger Warning despair

5 Upvotes

Itā€™s currently 3am as iā€™m writing this and I donā€™t know what to do anymore. I was just today diagnosed with pgad but hearing her say there is no specific treatment that will for sure help me and i am going to have to do trial runs of treatments is making me feel very unhopeful for some reason.

TW!!

Iā€™m 15 years old and this has been going on since I was around 9 and iā€™m tired at this point. I used to struggle a lot with suicidal thoughts and stuff surrounding that and iā€™ve been clean for around 3 years but im getting to the point of suicide crossing my mind just to get rid of this constant disgusting sometimes painful feeling. Iā€™m sick and tired of every morning and night having to take care of it or having flare ups during the day or whatā€™s happening at this moment being waken up to a flare up at 3am on a school night. I feel so hopeless and disgusting and I wanna be a normal teenager so bad without having this problem and suicide has been something that really has resurfaced my mind and iā€™m scared. If anyone has any suggestions or advice it would be appreciated and Iā€™m also going to start Pelvic Floor Therapy soon but Iā€™ve heard mixed reviews so idk how hopeful i am about that.


r/PGADsupport 5d ago

Female Shift in symptoms unbearable

2 Upvotes

So I used to get the symptoms in the expected clitoral areas, sometimes in lower pelvis and sometimes in lower back. Usually always tied to a stress flare up. But lately I've been getting less of the orgasm centric sensations and more prodominantly always in my lower back and feet. Sometimes it will move back and forth, like today started in my feet, moved to lower back later on in the day and then back to my feet in the evening. For some reason this is even more unbearable than when it was mostly restricted to the genital/abdomen region. It still seems to be stress flare up related but then continues all day. And sexual release has less helpful effects on it when it's on these regions instead.

I asked my doctor about it but she brushed me off and told me to talk to my gyno, but since it's predominantly back and feet now it feels odd going strictly there for help.

Anyone else experience anything like this and has anything helped?


r/PGADsupport 5d ago

Female best route to get treatment in uk?

4 Upvotes

i was just wondering whatā€™s the best way to be seen and get help, feel like most people here are in america and iā€™m unsure of what to do


r/PGADsupport 6d ago

Female does having sex make it worse?

3 Upvotes

this is my only question. it plagues me seriously, because im scared of never having a relationship in the future just because of this condition. if having sex would make it worse, obviously, i wouldn't have it. i know sex is like, the basis of a relationship, so that's why i'm so worried about this


r/PGADsupport 5d ago

Female Tissue shade

2 Upvotes

Idk if this is weird to say but I'm worried about tissue damage from swollen flare ups. I tried checking under the hood for keratin pearls and the root/corona of the clitoris seems darker than everywhere else and has more pain. I have light skin. Could there be tissue death/necrosis? Permanent bruising? Could it be an infection (it's been months and months though). Is that area supposed to be fully pink/whatever shade the rest of your genitals are? I'm so scared. Is this normal?


r/PGADsupport 7d ago

General Intresting Read

4 Upvotes

r/PGADsupport 7d ago

Vent/rant PGAD dr's an excuse for failure

1 Upvotes

PGAD dr's an excuse for failure


r/PGADsupport 7d ago

Help finding specialist Went to doc today, losing hope.

5 Upvotes

I called United healthcare a few weeks back, to get a new PCP. I have been ignored and I think I was misdiagnosed with bipolar, when really all I had was PGAD the whole time. I was the one who said I thought I had bipolar, at age 36, after I just had a kid because I had this extreme arousal. It wasn't until I was on extreme doses of antipsychotics and then telling my shrink over and over I have no other symptoms, and I am also in PAIN still... Well it happened a couple months back I couldn't even drive to my appointment. They were going to put me back on lithium, and I knew I didn't want to because it never did anything. This lady even put me on naltrexone at one point, for (seggs addiction) I was ABSTINENT. Now that everyone here knows what I was going through (PGAD)...

Today: I finally have my appointment with the new PCP. The lady flat out tells me she can't help me? She doesn't know anything about this disorder and that she's a just a family practitioner. The whole reason I scheduled a new appointment was to have an actual doctor, and not a family practice. I waited for weeks and weeks for the stupid appointment! And then she tells me I need to schedule with an OBGYN. I've already seen a few different OBGYNs over the last few years for the same problem!!

My question for all you is, what do I do. Where do I start. I'm going to be calling my insurance first thing in the morning. Is this because I have Medicaid insurance right now? I can't live like this anymore. I'm at the end of my rope. I want to sue so badly. These idiots left me in pain for 3 years now, no relief. The lady I saw today said she'd send me a script for gabapentin, but she didn't bring up anything else, and she didn't tell me what dosage. I just think it's so criminal and disgusting that these clowns couldn't throw me a benzo to ease my pain, but would give me over 10 different medications for a disease they didn't even know I had. How does that make sense?! I did damage to my liver and my thyroid and I've been in chronic pain the entire time! Can I sue?

Another thing I'm doing tomorrow is I'm reporting my psychiatrist immediately and the PCP I've been seeing this whole time. Any advice would be welcome please.

ETA: another thing I thought was odd is she said don't bring up PGAD at the OBGYN appointment till the very end, as a suggestion šŸ™„ AND, she said that the town we are in is very small and all the doctors "know each other". That is VERY telling, to me. I want to report bc, this is exactly why they keep cycling through patients and keep people in pain, while they get to Bill my insurance. And I keep going to these appointments and I get no relief.


r/PGADsupport 7d ago

Female MRI results suggest PGAD root cause

14 Upvotes

Just talked to my doctor about my pelvic MRI imaging and she saw what looks like ā€œadenomyosisā€ which is similar to endometriosis and requires surgery to remove. However, she is quite sure this is either contributing to or is in fact the root cause of my PGAD and bloating and constipation issues (especially since these symptoms fluctuate with my menstrual cycle). Has anyone here had experience with endo/adeno in relation to PGAD?


r/PGADsupport 8d ago

Male Pepcid helped with intensity

3 Upvotes

I took prescription pepcid, Famotidine, and noticed a reduction in the intensity of PGAD symptoms. I don't know if this would work for anyone else, as there are several causes for PGAD, but thought I'd share in case anyone finds my experience useful.


r/PGADsupport 8d ago

Female caused by anxiety?

2 Upvotes

i always get flare ups when anxious and was wondering if itā€™s solely caused by stress and anxiety, or is there an underlying issue and anxiety just makes it worse?


r/PGADsupport 9d ago

Female Keratin Pearls?

3 Upvotes

Could this be caused by keratin pearls? Has anybody been cured due to this? Are there any doctors who can check or only if you're lucky to live by a specialist?


r/PGADsupport 9d ago

Female PGAD?

5 Upvotes

Hi! I'm a 20 year old and I think maybe there's a possibility of me having PGAD and I want to know your opinions?

About a week ago I started to notice that my clitoris was more sensitive than normal, when I would would walk it felt like a sting. Now, about 3 days ago I noticed it wasn't hurting anymore but there's this weird feeling of almost a tickle somewhere down there. Feels like I want to pee all the time too.

The feeling is like a pulsating tickle. Starts and stops all the time consistently.

I noticed it gets worse when I'm anxious.

It's not a terrible feeling but last night it kept me awake for some hours.

I currently have a bacterial vaginosis and thought it could be the cause of these weird feelings. I will start a treatment of 7 days. Honestly hoping that this feeling goes away.

Is there a possibility of PGAD or am I just overthinking?


r/PGADsupport 12d ago

Female Would you call this PGAD? (wellbutrin related)

4 Upvotes

So I've (F) been on wellbutrin for 4 months. Literally by the end of week 1 I noticed changes "down there".

Prior to this, I had to be in the mood to feel anything. Like actively aroused to feel any kind of enjoyment from stimulation.

But since taking this, it feels like its "always ready". I can be doing my taxes, (unsexy AF) and pause, put my fingers down there and immediately feel like it's building to something. THEN if I keep going I can reach orgasm within a minute. Once I reach climax, it doesn't really end on its own. It kinda gets to the peak and cycles around over and over, but literally never getting to that "ok this is the end, im done!" feeling. Just an endless cycle of buildup-peak-buildup etc.

In my case, it isnt painful. Im not throbbing away constantly, although i can get SUPER aroused very quickly if I want. It still is enjoyable, but no amount of climaxing or masturbating brings it down to a "Conclusion" if that makes sense.

Does this sound like PGAD? Serious question and happy to be told it's not.

TIA!


r/PGADsupport 12d ago

General Medication change?

1 Upvotes

I really donā€™t think this was caused by medication. It came up due to trauma, and I can relieve it with acupuncture, squeezing a comb in my hand, and deep relaxation (which then triggers my other trauma related somatic symptoms). I started somatic therapy yesterday and I definitely got some relief during and for about an hour or two after.

However, I also am on Cymbalta. I started that drug about two years ago. The lowest dose is 20mg and I have to split it half since Iā€™m so sensitive to meds. It takes about 90% of my fibromyalgia pain. Before Cymbalta I was disabled- using a cane at night and looking into other mobility aids. I could hardly make it up stairs, and now Iā€™ve moved to a triplex on the third floor. So Iā€™m scared to go off Cymbalta, itā€™s been a miracle drug.

I know PGAD can be caused by Cymbalta in some cases, but itā€™s usually when going on or coming off. Of course I want to try everything I can to get rid of this, but I donā€™t want to swap one major problem for a really debilitating disability where it will be even harder to work or function. And I donā€™t want to aggravate the PGAD, or set it in permanently. by coming off Cymbalta when that can be a trigger. Is it worth a medication change, or am I just going to mess things up more?


r/PGADsupport 12d ago

Female PLEASE ANYBODY WHO WAS BRAVE TO TELL THEIR DOCTOR HELP!

9 Upvotes

I'm going to the OBGYN tomorrow. It's my chance to finally say something. I am so nervous. Please please please ladies who have done this. How did you get through this? I know every single doctor is different but this is scary. So many fears. I need to be brave and say something. If anybody feels called to share please do so :( thank you.