r/PGADsupport

Hey guys do you have any specific recommendations for relaxing pelvic floor muscles? I searched on Youtube but I’m not sure abt which one Is the best.

Are there any Turks among you who have this disease?

Does anyone else experience this? My clitoral area feels constantly restless, creating a persistent sense of pressure. My brain keeps sending 'pushing and pulling' signals to that area, as if there is something that needs to be evacuated or discharged. On top of that, I experience split-second electric shock sensations, and this cycle repeats every 6 to 7 minutes. I feel relatively comfortable while walking or standing, but sitting or lying down is absolute torture. Has anyone lived through this?"

Hi, has anyone here tried vaginal trigger point injections with lidocaine and hydrocortisone for PGAD symptoms?

I'm 17f and I know I've had pgad since I was 15. I never got diagnosed but I know that's what I have. Yesterday I had an episode that lasted 4 hours and it wouldn't stop, I was literally dying and fighting for my life and after 3 hours I started shaking and shuddering because I couldn't take it anymore, I thought I would have to call the ambulance I didn't know if I'd have a panic attack or not. These sensations I get feel far more intense than a normal orgasm and I don't know what I'm going to do in my future life while having this condition. Literally anything triggers it like strong emotion, going into a certain position on accident or even unexpected physical touch from someone. I don't get pains or anything but I just don't know how I'm going to deal with this.

I know I need help, medical assistance and all that but I'm too embarrassed or scared to tell my parents, they're gonna think I'm just hyper sexual or that I can't control my body. I already know their view on these things and they think masturbation and all those stuff are unruly and unlawful. So me telling them I have pgad I feel like they're gonna label me as those terrible things. I have no one to talk to about this, I feel like just anyone on the whole that I say this to is gonna take it the wrong way and tell me I'm just "horny".

Hi, I read that squashing your feet helps calm down symptoms and it seemed to (with my hands). I assumed a shiatsu massage machine would not be good but actually it has helped me. I think the foot pressure confuses the nerves a bit and also is comforting like it's hugging your foot.

I'm really glad I got it and while it wasn't super cheap it also isn't crazy compared to say the price of an expensive takeaway or two.

As well as the compression stuff (which is the main reason I use it) they also have rolling balls under your feet, and heat, and some have vibration (but I avoid that). I would say when choosing a machine make sure to get one where each of those settings is adjustable separately, including being able to set them to off. I would also recommend one with a remote. I will put more info in what to look for in a machine below but I just wanted to let people know the thing that has helped me the most other than medication

Hi, I’m posting because I’ve been dealing with what seems like persistent genital arousal symptoms for years and I looked through the internet to find our what's wrong with me and I’m trying to understand if others here experience something similar.

I have a constant or recurring throbbing/pulsing sensation in my genital area (mostly clitoral). It’s not connected to feeling mentally aroused or wanting sex. It just happens a lot. I don't orgasm but it hurts very badly.

It tends to get worse when I’m stressed or anxious And in uncomfortable situations (even things like hearing others having sex)

Sometimes it comes with increased wetness/discharge, even though I don’t feel sexual desire at all.

Also may be relevant:

• Direct clitoral stimulation feels way too intense or overwhelming, so I avoid it
• The sensation feels intrusive and nothing pleasurable
• Trying to ignore it is hard because it’s physically very noticeable
• It’s been happening for years, not something new

Something to note is I take Lamictal, Wellbutrin, Concerta, and Desyrel for my Bipolar 1. It happened before that as well though.

It could possibly be connected to child sexual abuse because it happened in my youth.

I’m not sure if this fits PGAD exactly or more of a nerve/sensitivity issue, so I’d really appreciate hearing from anyone who has similar symptoms.

Has anything helped you reduce the throbbing or calm the sensations? Especially things that can be done at home.

I don't think there is any doctors in Turkey that would really understand my issue. And I'm a bit embarrassed to go. So, I'm also trying to see if it is worth it to go to a doctor.

Thanks

26F, symptoms started in February and I was going crazy. Everything I read made me think this was permanent and I was so terrified. Multiple gynecologists had no clue what was going on and just dismissed me after figuring out my life wasn’t in danger (“it’s hormonal, get on the pill, give it a few months to settle”).

The one person who confidently said she knew what this was and had seen it before was my pelvic PT, who said it was 100% possible for it to go away. I finally went to see a pelvic pain expert she recommended and I’m so happy I did! He did the most thorough exam so far and figured out the issue was the dorsal branch of my pudendal nerve, which got irritated during intercourse because of my pelvic floor tightness and internal muscle spams. If you’re in the NYC area, I cannot recommend Dr Reutter enough!!

It’s been a few weeks of pelvic PT plus the medicine he recommended (oral pregabalin + valium and baclofan vaginal suppositories) and I feel so much better. Before, I had flareups that lasted a week nonstop, became intermittent, then kind of faded before coming back full force. Now I haven’t had a flareup like that in weeks; it comes back for a few hours here and there, but it’s significantly more reduced in intensity and always goes away after a bit. He warned me it would be this way and that it would take time for the nerves to settle/for it to fully go away, but the improvement is so noticeable compared to a month ago when I started this treatment.

Both the pelvic pain doctor and my pelvic PT said many women do not get relief because gynecologists don’t take them seriously and often don’t even know about PGAD/its causes, which made me feel so seen. My pelvic PT also said many women end up being seen by unqualified “pelvic PTs” who actually just took one class on pelvic health, so they don’t know about PGAD and make it worse by telling patients to strengthen their pelvic floor muscles rather than downtraining. If you haven’t tried a good pelvic PT and/or a pelvic pain expert, please consider it! It changed the game for me.

I understand some people here have struggled for years without relief from any of these methods, but if your symptoms just started and/or if you haven’t tried this, it’s worth a shot! If it helps anyone, I’m also happy to talk about the symptom management plan my care team (therapist, PT, and pain doctor) came up with while we wait for this to settle. I know I got EXTREMELY lucky to have found such qualified people, so I’m happy to share any resources I got!

It can be used for when you're desperate for relief. Usually takes up to 45 min to kick in. Do not use it everyday, can cause dependency and the withdrawal can worsen the symptoms. If like me you are a virgin, inserting might be painful and difficult, so use your pinky and choose a very small dose so it can pass through your hymen. If you are a man, I'm sorry, I do not know how I could help...

PS: This is not medical advice. My doctor prescribed me this and I decided to share. It's not a permanent solution and the symptoms return a day after.