Hey, I would like to share my story as I am pretty confused and frustrated. Sorry for mistakes, english is not my first language.
I got PGAD after a fast SSRI withdrawal. It took about 2 months to get rid of it and I was symptom-free for 3 years.
18 months ago I gave birth and started to feel heaviness in my ladies bits. It felt more like a prolapse but nothing was found. A friend of mine recommended me to go to a specialist of pudendal neuralgia. He checked my pudendal nerves and indeed the right side was painful and sensitive. He recommended to do a nerve block with steroids to see if it helps. Well…and then it all got completely messed up. Its been 3 weeks from the nerve block and I started to have completely new symptoms and this craziest symptom of all - PGAD. It drives me crazy. My right butt cheek area hurts. It feels extremely sore. I hate myself for letting him do the nerve block as I had no information beforehand. I did not know I can have this wild reaction. Is here anybody who experienced something similar? Why is it that I got PGAD after SSRI withdrawal and now after 3 years after the nerve block. How is this all connected? And do you think it will disappear again or that the nerve block could have caused me a permanent damage? I am really desperate.
I'm sorry to hear about this. I have not had this experience, but I did have flares after two nerve blocks---they were just upticks in pain, though, not pgad. Sometimes the flares seemed to last a while---a week or two maybe---and then they did go away. I think permanent damage is very unlikely. Have the symptoms declined at all? Have you contacted the doctor about this?
Thanks for your comment.
The doctor said that the nerve block rather just relaxed the muscle tension and that the effect of the anesthetic wears off within 30 minutes. He said that “because it was temporarily relieved, and then it stopped again, another part of the nerve is irritated. It is best to start physiotherapy as soon as possible”.
I am so angry with myself I did not find more information about nerve blocks before I let him do it.
I went to him to only check my potential prolaps and vericose veins around my uterus and this is how i ended up…
The pain is more like sore muscles so I am able to live with that but the PGAD makes me furious.
I am convinced that these experimentations in the pelvis of women are simply based on ignorance. But this is my personal opinion.
In the meantime, it is also known in scientific terms that SSRIs can lead to sexual dysfunction while they are being taken, but also even after they have been discontinued, and that they have to be withdrawned very very slowly. Unfortunately, sexual dysfunction is usually understood to mean numbness of the genitals and often of all human feelings, but PGAD is also one of them.
If you want, google the Sex Lab at Queens University of Toronto. They have put together some stuff on PGAD, but they don't have a solution either. In Germany, Prof. Krüger is doing research at the University of Hannover and did a study a few years ago, but until now I couldn't find an evaluation. However, in a TV program he said that in his opinion the neurotransmitters in the spinal cord are the problem. This seems logical if the problems start sometimes after taking SSRIs.
I read on German websites that the anesthetic "Propofol" can cause sexual feelings in the hypnagogic phase, when you are slowly waking up. It is often used for short anesthesia because it is easy to control. However, I have not yet read that the feelings go on after waking up.
For the pain in your buttocks try a bit streching. But have a look at, if it is good for you. Normally streching also reduces PGAD.
I recommend things for the whole body, because for me it is a big problem of the central and the autonomous nervous system. Perhaps you look for a breathing therapy. We all are breathing in a wrong way and with learning to breath in a good way we can learn to steer most of all the autonomous nervous system.
I'm sorry to hear this is happening to you. Most people who have flare-ups after a nerve block get better in a month or two so hopefully your nerve will calm down soon. I know one person who got long-term PGAD after having multiple nerve blocks but it's very rare. Are your symptoms primarily clitoral or vaginal, or both? You could try ice packs or alternating hot/cold sitz baths which can help with healing. I did them 4 times a day -- 2 minutes in very warm water and 30 seconds in ice water alternating back and forth 4 times for a total of 10 minutes. Some women use ice balloons inserted vaginally to relieve symptoms. Other people use topical medications such as extra-strength vagisil or salon pas lidocaine patches to dampen the symptoms. I know one woman who uses Icy Hot patches that have menthol in them. But anything that worsens your symptoms you probably want to discontinue.
I don't know what connection there might be between your original PGAD from SSRI withdrawal and what you are experiencing now. I'm glad to hear that there is research being done on the topic of what causes PGAD but it's a pretty complicated topic.
If PT or stretching aggravate your symptoms, my impression would be to discontinue PT, or anything that aggravates the symptoms, for awhile. In my experience, if the nerve is already irritated, it doesn't make sense to do something that would irritate it more. But if PT or stretching helps the symptoms, it would make sense to continue it.
Are you able to sleep at night? If not, your doctor should be able to prescribe something to help you sleep. It's really important to be able to get your sleep - it gives you a break for a little while.
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.
I am so sorry to read of this new symptom after a nerve block. Blocks can be irritating to the nerve and the ones I had caused me long lasting flares. I hope you can report back improvement in the PGAD soon.
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.
I also have Pgad and in Poland dr Hibner wants to perform botox in my pelvic floor and a pudendal nerve block with steriod , he said ussualy botox in pelvic floor is done with this block....i am also afraid of this block tbh since i don t want flares.I have pelvic problems for 2 years ( especialy urinary ones ) but after i stopped Zoloft in may in 3 weeks i also have Pgad....i feel better now but still Pgad is bothrering me.I think botox can help since i barelly urinate my muscles are so tight but i am afraid of pudendal block with steroid to not make my Pgad or urinary symptoms worse or even give me other problems.Is normal to have a pudendal block with steroids when you have botox ? The side effects are frequent and long lasting ? Ps : i had a normal block in february 2023 with lidocaine only ( 3 hours of block , a diagnostic one ) and 2 weeks i had a flare with my urinary symptoms ( no Pgad back then )...so if a diagnostic block gave me this i am really afraid or a steroid one....any comments and opinions are welcomed.I think i read somewhere on a Pgad group a patient also got Pgad after a pudendal block ( not sure if it was permanent )....
Ps : i hope you will recover like you did after Ssri sttoping....pgad is not joke but 9 / 10 urinary symptoms non stop are also a hell .I hope we will all get better
Aristocat wrote: ↑Mon Oct 30, 2023 1:25 pm
Hi Kammulka,
I am very sorry for what happened to you.
I am convinced that these experimentations in the pelvis of women are simply based on ignorance. But this is my personal opinion.
In the meantime, it is also known in scientific terms that SSRIs can lead to sexual dysfunction while they are being taken, but also even after they have been discontinued, and that they have to be withdrawned very very slowly. Unfortunately, sexual dysfunction is usually understood to mean numbness of the genitals and often of all human feelings, but PGAD is also one of them.
If you want, google the Sex Lab at Queens University of Toronto. They have put together some stuff on PGAD, but they don't have a solution either. In Germany, Prof. Krüger is doing research at the University of Hannover and did a study a few years ago, but until now I couldn't find an evaluation. However, in a TV program he said that in his opinion the neurotransmitters in the spinal cord are the problem. This seems logical if the problems start sometimes after taking SSRIs.
I read on German websites that the anesthetic "Propofol" can cause sexual feelings in the hypnagogic phase, when you are slowly waking up. It is often used for short anesthesia because it is easy to control. However, I have not yet read that the feelings go on after waking up.
For the pain in your buttocks try a bit streching. But have a look at, if it is good for you. Normally streching also reduces PGAD.
I recommend things for the whole body, because for me it is a big problem of the central and the autonomous nervous system. Perhaps you look for a breathing therapy. We all are breathing in a wrong way and with learning to breath in a good way we can learn to steer most of all the autonomous nervous system.
Take good care of you
Aristocat
You have a big knowledge about Pgad.I kinda have also since i suffer from it....i talked with doctor Kruger secretary but no answear after 2 emails...will try again.I even talked with Hibner and Goldstein and Hibner this sunday in Warsaw will do some botox in my pelvic floor even if my Pgad started after Zoloft stopping but i also have other pelvic symptoms ( non stop urethral.pressure , rectal one , super tight pelvic muscles etc ) so we both think Zoloft is only a part of my Pgad and the other is the pelvic floor.
I have a question i don t understand the connection Ssri and spine neurotransmiters.maybe you can explain more.Doctor Goldstein thinks Pgad after Ssri appears csuse of serotonine/ dopamine inbalance in brain and the fact you have alot of dopamine send alot of blood in pelvic area and could give Pgad.
Balenul wrote: ↑Mon Nov 13, 2023 4:58 pm
I also have Pgad and in Poland dr Hibner wants to perform botox in my pelvic floor and a pudendal nerve block with steriod , he said ussualy botox in pelvic floor is done with this block....i am also afraid of this block tbh since i don t want flares.I have pelvic problems for 2 years ( especialy urinary ones ) but after i stopped Zoloft in may in 3 weeks i also have Pgad....i feel better now but still Pgad is bothrering me.I think botox can help since i barelly urinate my muscles are so tight but i am afraid of pudendal block with steroid to not make my Pgad or urinary symptoms worse or even give me other problems.Is normal to have a pudendal block with steroids when you have botox ? The side effects are frequent and long lasting ? Ps : i had a normal block in february 2023 with lidocaine only ( 3 hours of block , a diagnostic one , did nothing for my urinary symptoms ) and from next day 2 weeks i had a flare with my urinary symptoms ( no Pgad back then )...so if a diagnostic block gave me this i am really afraid or a steroid one....any comments and opinions are welcomed.I think i read somewhere on a Pgad group a patient also got Pgad after a pudendal block ( not sure if it was permanent )....
Hibner told me he would also want to do a dorsal block ( one of the pudendal branches , not sure if with steroid or not , but prolly steroid also ) for my Pgad but i am afraid of this block also.any feedback on this block also ? Whar problems can this give ?
Ps : i hope you will recover like you did after Ssri sttoping....pgad is not joke but 9 / 10 urinary symptoms non stop are also a hell .I hope we will all get better
kammulka wrote: ↑Sun Oct 29, 2023 8:58 pm
Hey, I would like to share my story as I am pretty confused and frustrated. Sorry for mistakes, english is not my first language.
I got PGAD after a fast SSRI withdrawal. It took about 2 months to get rid of it and I was symptom-free for 3 years.
18 months ago I gave birth and started to feel heaviness in my ladies bits. It felt more like a prolapse but nothing was found. A friend of mine recommended me to go to a specialist of pudendal neuralgia. He checked my pudendal nerves and indeed the right side was painful and sensitive. He recommended to do a nerve block with steroids to see if it helps. Well…and then it all got completely messed up. Its been 3 weeks from the nerve block and I started to have completely new symptoms and this craziest symptom of all - PGAD. It drives me crazy. My right butt cheek area hurts. It feels extremely sore. I hate myself for letting him do the nerve block as I had no information beforehand. I did not know I can have this wild reaction. Is here anybody who experienced something similar? Why is it that I got PGAD after SSRI withdrawal and now after 3 years after the nerve block. How is this all connected? And do you think it will disappear again or that the nerve block could have caused me a permanent damage? I am really desperate.
