PGAD relief tips

[Lolliesandcakes]

Hi all, I am reaching out to see amy tips you may have for relief? Currently lasts 24 hours a day, worst is at night but never goes away. Its very distressing and I cried again today as am just so exhausted. Have seen a urogynacologist and am now trialling HRT patches (hysterectomy in 2018) plus estrogen vaginal suppositories. Taking sleeping tabs and occasional valium for the anxiety its causing. Have stopped socialising. Has anyone had botox in the vulva/clitoral area? I have done pelvic floor therapy, meditation, CBT and my doctors always say Im the first they have seen and to see how it goes in a few weeks. I try not to stress and I do breathing exercises, take cool baths to help numb it and have stopped coffee too but at 51 Im now beyond desperate . Thanks fellow PGADers

[Tree_Tops Moderator]

Hi Lolliesandcakes ,

I'm sorry to hear you're going through this. Have you had an MRI scan of the pelvis?

[Lolliesandcakes in reply to Tree_Tops]

Not yet. Ive had MRI on brain and Xray of pelvis and ultrasound of pelvis.

[Normie-Orms in reply to Tree_Tops]

Yes and nothing. various ultrasounds as it started straight after I had my gallstones removed. So now emotional levels effect the pain level. So yeah some devotional healing to do. Norms

[Normie-Orms]

hi there i, sorry to hear of your suffering bacause im the same so i know how youre feeling.. For nealy 4 years and yes 24/7 although once I'm asleep it eases off its just getting to sleep that's the hard. I say you try falling asleep with someone kicking you in the groin!!! I round m6 answe Islington a vape,with dope in it. Works every time. Mine is a lot of Ptsd from abusive marriage so getting high really works. You,can also get one that helps sleep. Hope this helphelps. In this world, I've learnt to have to help yourself. SendSending love, Norma

[Lolliesandcakes in reply to Normie-Orms]

Thanks norma. I have diagnosed PTSD. I didnt realise they were related! How interesting. I will ask dr about THC here under a script.

[Normie-Orms in reply to Lolliesandcakes]

Yes you go for it! I have to kesrne to live my self and put myself first before others too. I'm people pleaser.

[CernCrystal]

Something that really helped me manage it (and I still do) were reverse Kegel exercises. I was eventually diagnosed with an overtightened pelvic floor by a gynie physio. Drs knew nothing but the g physio said she had waited all her professional life to see someone like me. She really helped, despite me being her first patient. She also got me to look at reducing and controlling my anxiety (which makes it all worse). It was life changing for me and is now part of my day.

[Lolliesandcakes in reply to CernCrystal]

Thankyou. I do reverse kegels too which at first never knew was such a thing as we are always taught to do 'tightening kegels' my physio said to think of it as an octopus releasing its legs. I think it helps. My physio said i have overtightened pelvic floor as well. I think when im anxious I clench there. Its taken me 2 years ti speak openly, I think very embarrassed but now so desperate.

[CernCrystal in reply to Lolliesandcakes]

Addressing the anxiety is key - consciously doing something else instead of clenching. The relaxing is important too - many of us go to the gym and tighten up the area without realising - apparently it isn't supposed to be tight and flat (tummy) and can do damage. Best of luck with your journey. I'm in a great place but do manage things every day - a positive part of my daily routine.

[Rosalita60]

HI all, I have suffering from this dreadful syndrome for 8 years. I literally feel your pain.

[Lolliesandcakes in reply to Rosalita60]

Im so sorry to hear this. It really is dreadful

[Rosalita60]

Hey Lollies.

I am actually writing a book about PGAD - not a misery memoir but a real serious look at the medical and personal implications including interviews with patients, docs, physios and researchers.

Would you like to hear more about the book? If so happy to tell.

If not I get it. 😍

[Lolliesandcakes in reply to Rosalita60]

Absolutely would love to hear more about it. Well done!!! I think this condition needs to be more 'public knowledge' but everyone I tell thinks its a great issue to have not realizing how debilitating and soul destroying it truly is.

[Rosalita60 in reply to Lolliesandcakes]

Hi did you email me on [e-mail]?

[Rosalita60]

email me - [e-mail] - we can chat more offline 🤗

[Lolliesandcakes in reply to Rosalita60]

Sent you

[69yearoldmale]

i'm no expert but i have it also and have researched a lot. Seems like your docs are treating the symptoms not the problems. i believe it is caused by nerve entrapment in the pelvis. i would seek out a neurologist.