Hello all I have been doing some research on PGAD for a while and I thought this would be the best place to communicate what I’ve been going through and see if I can get any support or any tips or ideas of what to do now please see below from my story.
A little bit of my background I am a 28-year-old female with anxiety, depression, and OCD. I am currently on 15 mg of BuSpar and I am now currently on 30 mg of baclofen for the muscle spasms associated with my PGad symptoms.I usually take about one or two a day depending on how bad it is someday I can go at least a day or two without needing them, I can bear through the pain.
So back in February I went through something really really traumatic with my ex partner finding out that he was a sexual predator. As well as being on the registry in addition to that, I was extremely stressed out at work because of my boss and I was also getting ready to move out of my old apartment that was infested with mold, so I was literally under severe amounts of stress when this happened,
This caused me to go through a OCD spiral and I was masturbating more frequently using it as an anxiety relief. Keep in mind I have been masturbating and using vibrators since I was a teenager I never had any issues or problems with it until that day .
One day I was masturbating, and after I was finished the sensation of needing to have an orgasm, but not leave. I just thought maybe I needed to go again but after three or four times the feeling would not leave and I thought maybe my clitoris was just overly sensitive and maybe I had overdid it, but the feeling kept getting worse and worse and worse over the next couple days I started having extreme flareups my clitoris was so swollen. It was literally the size of my thumb and I was having vaginal spasms inside and outside. I would have huge clitoral spasms after I would have orgasms on my own without trying ..that would last for minutes at a time I would have these extremely painful and uncomfortable orgasms That were so scary and so intense the first month of dealing with it was horrible. It took a huge on my mental health, my physical health. My blood pressure was high all the time I was so emotional I literally felt like my entire life was over I felt disgusting and I felt like a weirdo. I fell into a huge depression. I had multiple doctors brushing my off including my primary doctor and at the emergency room who literally trying to tell me that it was a fucking yeast infection like I’m stupid . I felt like my whole life was gone. I’m also heavily involved in the BDSM community, so I felt like being involved in that community I was done for , all the things I have brought me joy I couldn’t do anymore I couldn’t sit in the car. I couldn’t catch the bus I couldn’t take a train I couldn’t go for walks. I would literally be in my bed all day every day missing weeks of work, and it was so stressful ,Traumatizing and horrific. I was also dealing with a cunt of a boss at the time, who would literally gaslight me and make me feel bad every time I had to go to the hospital and make me feel like my job was at stake. This would cause me to stress out more down the line I realsise that stress can cause pgad flare ups .Luckily now she’s retiring thanks to me, reaching out to HR and her quitting to save face .so I won’t have to deal with her anymore . After getting neglected by multiple doctors kept trying to brush off my symptoms. I finally got sent over to a gynecologist who has been analyzing my symptoms She’s probably been the most helpful because at least she listens to me and doesn’t try to brush me off. She frequently checks up on me and asked me how I’m doing . other than my psychiatrist. No one has been made aware of this condition or has heard of it, which has been extremely frustrating. I’ve been doing a lot of research on it, and I think I can figure out the things that may have caused it in addition to me, overdoing it with masturbating and using one of those magic Wand vibrators I also have Pcos and I know I had really really bad hormone imbalance. My OB/GYN put me on birth control and metformin, which I will admit did help the symptoms some it stopped making it as intense and as bad
fast forwarding to April now I am waiting for a pelvic MRI to confirm that I have nerve damage either the dorsal nerve or the Prudential nerve but I am unsure , some days my symptoms are worse than others. When I first was going to the emergency room, they were giving me the liquid lidocaine not the ointment but the literal liquid one that was 5% that had helped a lot but then when I went back to the doctors, they wouldn’t give me that same dosage, and they only gave me 2% which had actually somehow irritated it more. I was able to get the lidocaine ointment when I was first having my symptoms, and that helped a lot but now that the symptoms are not as severe the lidocaine actually irritates the area more that helps so now I just Take muscle relaxers. I also have to start going to physical therapy and my physical therapist has tried to get me to start doing breathing exercises to help relax, my pelvic floor .I noticed that it gets really really bad right before my period that’s when everything seems to tighten and flare up. I noticed that sometimes I have orgasms in my sleep or it caused me to have sexual dreams that lead me to have orgasms probably because I’m suppressing that part of my life now because now I associate sex and everything that involves sex, including orgasms as something bad or something that shouldn’t happen. While they come and go regardless when I’m sleeping sometimes it’s not a daily occurrence. Sometimes it’ll happen a couple days in a row and then it won’t happen for a week at a time. I’ve also noticed that maybe it was from the position I was sleeping in on my right side, which maybe was putting pressure on the nerve while I was sleeping that could’ve also been causing me to have the orgasms in my sleep so since then I’ve been only sleeping on my back or on my left side I haven’t had any of those dreams or orgasms in my sleep since so, so I’ll keep you updated on that .I’ve been really struggling with this a lot and been trying to figure out where I can find Support. I’ve also trying to figure out what’s going to happen after I get the MRI if they’re even able to see that I have nerve damage which I’m pretty sure I do or what my life is going to look like after this …ever go back to normal again or am I just stuck like this permanently and if I am stuck like this, and even if I somehow did manage to go back to normal with masturbating or having sex or stress, cause it to come back, I have so many unanswered questions, and I really don’t know where else to turn … or how I am supposed to meet people have relationships or have sex ? ..being involved in the BDSM community or even just enjoy my life , but I’ve noticed now about my symptoms I usually have irritation mostly in the mornings and before bed they did give me 10 mg of baclofen I can take three times a day. I usually just end up taking one or two. I’ve hardly need three unless it gets really really bad , it it has made things ALOT more barable .. I can at least get through my day to day now . but I’m just wondering if what my other options are what other solutions are or how do I even continue my life after this I don’t know if the damage I did was permanent or not since my symptoms aren’t necessarily as bad as when they started, I want to pray, and hope that my body is healing slowly, but surely, but I won’t know for sure, until I get the MRI I’ve been doing a lot of research on nerve blocks and other types of treatment but I’m not really sure those treatments are permanent or short term it’ll make it better or worse. I am also on 15 mg three times a day of BuSpar which I’ve been taking for a year prior to this happening for anxiety. My psychiatrist also wants to put me on Zoloft as I have OCD, she thinks that that might help with the symptoms as well, or even the reoccurring thoughts that come with having this condition . What I have noticed is irritation and flareups and pain in two different areas. Sometimes the left side of my clitoris which is the side that I would favor when I would masturbate it seems like there’s some type of lump right under/on my clitorus so I’m wondering if the nerves are bunched up or stuck on my clitorus the other thing that I’ve noticed is on the Vulvadina right below the clitoris on the left side as I’ve noticed that I can feel a nerve there and sometimes that nerve feels like it’s being pulled or it’s agitated I’ve confirmed this because usually if I just slightly press on it or touch it, I can literally feel it bubbling or throbbing . so sometimes my symptoms fluctuate from my clitoris to that nerve or both, I don’t have any pain or irritation on the right side. I’ve also can feel that nerve sometimes in my tailbone, or twoards my butt when I said, so it feels like a long stretched out nerve, but I don’t feel arousal person in the back, but I can feel the irritation. I know that sometimes people can have Taylor cysts and I can cause PGD as well, so I’m going to look into that, but mostly I just wanted to know how I can get support if any of you have gone through something similar or what the options are like I said, I do believe that my hormonal imbalance was definitely playing part Because even when I would be ovulating, I would be so horny. It was almost unbearable since I’ve been on birth control, ovulating has been a lot less minimal and this is actually the first light. I’ve had which has made the PGD symptoms more bearable than the last one I’ve had but I’m still dealing with them sometimes it’s hard to tell if I’m really getting better because I have days where it’s more bearable, and I have other days, work flareups happen or out the blue I just start feeling pain or irritation . I also noticed that caused me to have some muscle spasms all over my body often on so I’m also wondering if magnesium might help as well in the beginning I wasn’t able to wear any sort of tight clothing or underwear and I’ve made minor adjustments since then I only wear loose underwear and usually when I sleep I don’t sleep with any underwear just giving my vaginal pelvic area a chance to breathe at work. I have taken a yoga mat and cut it into some type of cushion which has helped bring me a little bit more comfort. I tried to sit for two hours, and stand for two hours, so it’s not irritated throughout the day I do walk daily I try to hit between 3000 and 5000 steps. I have noticed that walking seems to help a bit with the irritation, especially in the morning I have also tried to get into pelvic relaxation exercises right now I’m only able to do about two positions without overly irritating the nerve .I would really appreciate any support or guidance that I could have. I currently live in California in the south bay area . so I would really be grateful for any type of help or assistance or knowledge with other people who are going through this Thank you for not judging me and thank you for listening .
Possible PGAD and needing support!!
Re: Possible PGAD and needing support!!
Hello Ayanna,
I'm sorry to hear you are going through such a difficult time, especially when you have so much of life ahead of you.
I'm not sure what all you have tried yet but my first impression is that you might need some more diagnostics to determine a diagnosis -- such as an evaluation by a pelvic floor PT, an evaluation by a pudendal neuralgia specialist and possibly a nerve block if they recommend it. And I think you are on the right track getting the MRI. It's great that your gynecologist is proactive and that you are finding some medications that are helping. It can be important to avoid any activities that trigger the pain, so that is something to consider.
I can't say for sure what the outlook is for you, especially since you don't have a firm diagnosis yet. I don't know if there is damage from the wand, but if so, hopefully it will heal over time. I had some similar symptoms as you, and I am doing well now, and I know other people who are doing well with the proper treatments, so I think there is reason for hope. So, please stay strong and keep fighting. Since you are young, you have a better chance for healing than an older person might, and it sounds like you are proactive and doing a lot of research which is great.
Violet
I'm sorry to hear you are going through such a difficult time, especially when you have so much of life ahead of you.
I'm not sure what all you have tried yet but my first impression is that you might need some more diagnostics to determine a diagnosis -- such as an evaluation by a pelvic floor PT, an evaluation by a pudendal neuralgia specialist and possibly a nerve block if they recommend it. And I think you are on the right track getting the MRI. It's great that your gynecologist is proactive and that you are finding some medications that are helping. It can be important to avoid any activities that trigger the pain, so that is something to consider.
I can't say for sure what the outlook is for you, especially since you don't have a firm diagnosis yet. I don't know if there is damage from the wand, but if so, hopefully it will heal over time. I had some similar symptoms as you, and I am doing well now, and I know other people who are doing well with the proper treatments, so I think there is reason for hope. So, please stay strong and keep fighting. Since you are young, you have a better chance for healing than an older person might, and it sounds like you are proactive and doing a lot of research which is great.
Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
Re: Possible PGAD and needing support!!
Hi violet !
Thank you I really appreciate it . It has been really really hard on me and I haven’t taken it too. Well it’s been a lot of my mental and I catch myself having a lot of breakdowns and just trying to meditate through it just been trying to practice these breathing exercises and doing what I can I can’t really contract as much as my pelvis without almost causing a flareup so right now I’m just sticking to the breathing exercises. I think I’m actually going to set up a call with my gynecologist and just give her an update on how I’ve been feeling and just talk to her about what while we’re waiting for the MRI in June . I will definitely look into finding a Prudential neuralgia specialist , do you know what category that falls under medically? Is that the same as seeing A urologist or do you recommend that as well? Also, what exactly is a nerve block and what does it do? I’ve done a little bit of research about it, but I’ve been seeing a lot of different answers but it seems I’m still a bit confused about exactly what it is. I’ve only seen some people say that it helped other said that it made it worse.
As far as try not to trigger it, I do my best but honestly sometimes it’s hard when I have a office job and my desk is not one that can move up and down so if I’m standing, I’m usually hunching over my desk. I’m not sure how I can make it any more comfortable at work, buy some type of cushion like a pelvic cushion off of Amazon, but I’m not really sure if those flat ones with the memory foam would be better or a donut would be better. I’m thinking maybe a donut that way I won’t have any pressure on my pelvic area , Do you have any recommendations for that as well if possible? Or any information on that.
I also tried to take the light rail home because it’s a very very light ride isn’t very bumpy. I’ve stopped ubering to work back because I can barely handle being in the car unless I absolutely have to be.
Also, again, thank you so much for your response and your support. I genuinely appreciate it. I’ve been on a lot of different forums with no response. This is the first time someone has responded to me so I really appreciate it a lot. I’ve been feeling so alone and what I’m going through.
Thank you I really appreciate it . It has been really really hard on me and I haven’t taken it too. Well it’s been a lot of my mental and I catch myself having a lot of breakdowns and just trying to meditate through it just been trying to practice these breathing exercises and doing what I can I can’t really contract as much as my pelvis without almost causing a flareup so right now I’m just sticking to the breathing exercises. I think I’m actually going to set up a call with my gynecologist and just give her an update on how I’ve been feeling and just talk to her about what while we’re waiting for the MRI in June . I will definitely look into finding a Prudential neuralgia specialist , do you know what category that falls under medically? Is that the same as seeing A urologist or do you recommend that as well? Also, what exactly is a nerve block and what does it do? I’ve done a little bit of research about it, but I’ve been seeing a lot of different answers but it seems I’m still a bit confused about exactly what it is. I’ve only seen some people say that it helped other said that it made it worse.
As far as try not to trigger it, I do my best but honestly sometimes it’s hard when I have a office job and my desk is not one that can move up and down so if I’m standing, I’m usually hunching over my desk. I’m not sure how I can make it any more comfortable at work, buy some type of cushion like a pelvic cushion off of Amazon, but I’m not really sure if those flat ones with the memory foam would be better or a donut would be better. I’m thinking maybe a donut that way I won’t have any pressure on my pelvic area , Do you have any recommendations for that as well if possible? Or any information on that.
I also tried to take the light rail home because it’s a very very light ride isn’t very bumpy. I’ve stopped ubering to work back because I can barely handle being in the car unless I absolutely have to be.
Also, again, thank you so much for your response and your support. I genuinely appreciate it. I’ve been on a lot of different forums with no response. This is the first time someone has responded to me so I really appreciate it a lot. I’ve been feeling so alone and what I’m going through.
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Re: Possible PGAD and needing support!!
Ayanna28,
I am so sorry for all you have been through. I agree with Violet’s suggestion for an evaluation with a pelvic PT. Perhaps there is a muscular issue putting pressure on the PN and causing your PGAD or you have SI joint dysfunction. I also think for PGAD that an MRI of the pelvis is a good idea to look for potential issues that could be the underlying reason you are experiencing it. One small study showed a connection in some people between PGAD and Tarlov Cysts at the sacral nerve roots. An MRI would rule them in or out. I’ll link the study for you.
https://pubmed.ncbi.nlm.nih.gov/22594432/
I have a Twin Cheeks (extra firm) cushion made by Cushion Your Assets. It helps me some, especially with driving.
https://cushionyourassets.com/shop/twin ... ng-cushion
Take care,
Stephanies
I am so sorry for all you have been through. I agree with Violet’s suggestion for an evaluation with a pelvic PT. Perhaps there is a muscular issue putting pressure on the PN and causing your PGAD or you have SI joint dysfunction. I also think for PGAD that an MRI of the pelvis is a good idea to look for potential issues that could be the underlying reason you are experiencing it. One small study showed a connection in some people between PGAD and Tarlov Cysts at the sacral nerve roots. An MRI would rule them in or out. I’ll link the study for you.
https://pubmed.ncbi.nlm.nih.gov/22594432/
I have a Twin Cheeks (extra firm) cushion made by Cushion Your Assets. It helps me some, especially with driving.
https://cushionyourassets.com/shop/twin ... ng-cushion
Take care,
Stephanies
PN started 2004 from fall. Surgery with Filler Nov. 2006, Dr. Campbell April 2007. Pain decreased by 85% in 2008 (rectal and sitting pain resolved completely), pain returned in 12/13. Pain reduced significantly beginning around 11/23.
Re: Possible PGAD and needing support!!
Hi Ayana,
There are different types of doctors who deal with pudendal nerve issues. Some are surgeons, some are gynecologists or urogynecologists, some are pain doctors, some are neurologists. It really depends on whether they have an interest in learning how to treat pudendal neuralgia. If you go to our homepage at pudendalhope.org and scroll down on the left you can click on Find a Doctor or Find a PT for a list of providers who treat PN. Many of them are knowledgeable about PGAD and may treat it also.
Here is a link to a description of nerve blocks. https://www.pudendalhope.info/category/ ... ve-blocks/
I haven't heard of very many people who got permanent relief from nerve blocks, but they can be a valuable diagnostic tool to determine if your pudendal nerve is the problem. Some doctors can block just the dorsal clitoral nerve which is one branch of the pudendal nerve.
Regarding cushions, it's kind of trial and error for each person. I never really found one that allowed me to sit a lot so I'm probably not much help in that area. A roho cushion helped some. You can read the seating section of this forum for more ideas.
Violet
There are different types of doctors who deal with pudendal nerve issues. Some are surgeons, some are gynecologists or urogynecologists, some are pain doctors, some are neurologists. It really depends on whether they have an interest in learning how to treat pudendal neuralgia. If you go to our homepage at pudendalhope.org and scroll down on the left you can click on Find a Doctor or Find a PT for a list of providers who treat PN. Many of them are knowledgeable about PGAD and may treat it also.
Here is a link to a description of nerve blocks. https://www.pudendalhope.info/category/ ... ve-blocks/
I haven't heard of very many people who got permanent relief from nerve blocks, but they can be a valuable diagnostic tool to determine if your pudendal nerve is the problem. Some doctors can block just the dorsal clitoral nerve which is one branch of the pudendal nerve.
Regarding cushions, it's kind of trial and error for each person. I never really found one that allowed me to sit a lot so I'm probably not much help in that area. A roho cushion helped some. You can read the seating section of this forum for more ideas.
Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
Re: Possible PGAD and needing support!!
Hi Stephanies
thank you for the support. I genuinely appreciate it that seat cushion actually might help me a lot. I noticed sometimes I put stuff under my thighs and it seems to take some of the pressure off my pelvis so I might look into that. I’ve been looking on Amazon, but I can’t seem to find a really really good one that might work for me so I might get that one and maybe you’re correct. I never thought about it that way, I’ll definitely keep that as well and at that when I speak to my doctor, I’ll also search for specialist on here as well .
So leave MRI isn’t until June and that’s the earliest one I could get so I’m just popping muscle relaxers like skittles until I’m able to get one. It seems to be the only relief that I get for a few hours.
thank you for the support. I genuinely appreciate it that seat cushion actually might help me a lot. I noticed sometimes I put stuff under my thighs and it seems to take some of the pressure off my pelvis so I might look into that. I’ve been looking on Amazon, but I can’t seem to find a really really good one that might work for me so I might get that one and maybe you’re correct. I never thought about it that way, I’ll definitely keep that as well and at that when I speak to my doctor, I’ll also search for specialist on here as well .
So leave MRI isn’t until June and that’s the earliest one I could get so I’m just popping muscle relaxers like skittles until I’m able to get one. It seems to be the only relief that I get for a few hours.
Re: Possible PGAD and needing support!!
Hi violet !
Thank you that actually helps a lot when I do some research this week on my day off. I will look more into that and see what doctors I can find under these categories that specialize or treat PGAD or PN. I’ll keep you updated on what I find.
I’ll also do some more research on the nerve blocks and I will look for some doctors. Hopefully, I can find some on here in my area that my insurance covers.
I never heard of a roho cushion, but I will look into that as well. I’m willing to try anything I think I’m just so scared of the outcome and not knowing what’s next for me or what’s gonna happen it just sucks because it just feels like my whole life is on hold. I feel like I’m holding back so much of myself until I’m getting this taken care of, I’m praying that I find a solution
Thank you that actually helps a lot when I do some research this week on my day off. I will look more into that and see what doctors I can find under these categories that specialize or treat PGAD or PN. I’ll keep you updated on what I find.
I’ll also do some more research on the nerve blocks and I will look for some doctors. Hopefully, I can find some on here in my area that my insurance covers.
I never heard of a roho cushion, but I will look into that as well. I’m willing to try anything I think I’m just so scared of the outcome and not knowing what’s next for me or what’s gonna happen it just sucks because it just feels like my whole life is on hold. I feel like I’m holding back so much of myself until I’m getting this taken care of, I’m praying that I find a solution
Re: Possible PGAD and needing support!!
Hi Ayanna,
It would be very hard to put your life on hold when you are 28 and in the prime years of your life. But you have a positive, proactive attitude, so I am very hopeful for you. Will say some prayers for you.
Hugs,
Violet
It would be very hard to put your life on hold when you are 28 and in the prime years of your life. But you have a positive, proactive attitude, so I am very hopeful for you. Will say some prayers for you.
Hugs,
Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
Re: Possible PGAD and needing support!!
Hi violet , it really really sucks because I am such such a fun animated person. I have so much of a life and so much of a social life before this and right now everything is just on hold. Honestly, I’ve been going through a really bad depression lately. I’m just praying that I have some more answers with the MRI. I honestly don’t know what to do if I’m stuck like this for the rest of my life or how I’m supposed to have sex or even be involved in the community or have relationships. :/
Re: Possible PGAD and needing support!!
Yes, Ayanna, it's a very difficult journey you are on right now and it can be very isolating because it's such a private subject. Is your family very supportive or do you have anyone you can talk to? When I was going through the worst of PNE/PGAD I found a good sex therapist to talk to who was very professional and understanding. I don't know if your insurance would pay for it, but it might be worth looking into.
Violet
Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.