I want to leave

[Gardening51]

Thanks Alaine and Stuart; I'm afraid I'm not prepared to stay on the forum, where I receive posts that are so very depressing, and usually totally irrelevant to my pudendal neuralgia. It has been a thoroughly disheartening experience. But I can't see how I go about expunging myself - can anyone give me a last bit of help? Thank you, and I wish you all well.

[bantam12]

Right hand top of the page is a box with Following and a tick, just click on it to unfollow the forum.

[kalecolbe12]

I am going to pt and my therapist does pudental nerve flossing where she is loosening the area around the nerve...she just has one hand pressing on inner buttock and moves my leg... She does both size and I find this really helpful.... Also she relocates my muscles and bones to loosen up the pudendal nerve...It's all just physical therapy however she did say for difficult cases you may need the interstim which is a small implant just below the skin surface which interferes with pudendal nerve signals and correct it

[electricjaws in reply to kalecolbe12]

Kakecolbe to butt in but who do you see? I have had pudendal neuralgia for 10 years and would dearly like to see a decent pelvic physio ( preferably a female ) ( I can't seem to get a decent pelvic physio on the NHS , private message me if you want !)

[Hidden]

I am not a regular user here because my PN is part of a systemic disease so I mostly use other communities.

However the role of health forums is partly to get support if you need it but also to support others.

If you don’t want support or to be supportive to others with pelvic pain related issues (not just PN) or just be a silent follower then to leave HealthUnlocked just click on your own avatar and scroll to delete your account until you reach “delete account” - it’s very simple I believe.

If you just want to stop following this particular community then just click unfollow and you won’t receive anymore unwanted posts for this community in your emails.

[Gardening51 in reply to Hidden]

I'm afraid I don't understand your instructions. How do I find my avatar? And I would try to support others if I had anything to offer, likewise I don't find support in the forum, just appeals for help, which I am unable to give, and stories of pain.

[Hidden in reply to Gardening51]

I can’t help you with technical issues - I’m just a health forum punter like you so you just have learn to navigate the various pages as I’ve suggested ie click on your profile top right hand side and use your common sense to delete or whatever. If you can use a word like expunge then I’m sure you can find a way of deleting your own account.

All health communities have a number of people issuing pleas for help and this one is no exception. Once upon a time people would do this while sitting in doctor’s waiting rooms or form self help groups and use the phone. Of course these can be sad places because pain generally makes people sad. But I use several communities that have given me amazing support and friendships so it is possible.

Maybe PN is too unusual and relatively rare and many like me go undiagnosed with it because pelvic physiotherapy in the NHS is a scarce resource, waiting lists long etc and doctors don’t recognise it easily.

However you have so far only posted asking for technical help with HealthUnlocked so I don’t really see how you can gage whether or not it’s a supportive community.

What you are doing is a bit like attending a function and deciding it’s not for you - which is completely reasonable if you just leave or stay quietly without making a grand fuss and making people feel more miserable in the process. But if it’s not for you then just slip away because it’s hard work for the admins to provide emotional support and info about pelvic pain - they aren’t usually paid or trained to give technical support to help you escape HealthUnlocked. Just browse and you’ll find the exit!

You have been advised by 2 of us how to find the door - but we aren’t looking for the door so may not know how to delete accounts. You also had a comment from someone saying what physiotherapy exercises have helped. I hope you can find a way to navigate this community/ website and then decide to stay or leave - your call of course.

[electricjaws in reply to Gardening51]

A avatar is your photo/ picture ( mine is the collie sheepdog as you can see

[Alaine1 Administrator]

Hi Gardening51

I’m sorry to hear you want to leave. Unfortunately in any health forum there will be times when everyone is posting depressing news about their conditions including the same ones you have. Having said that it is useful to stay even if you on,y come on here once a week to take a look as other pelvic pain often responds to the same treatments eg pelvic physio therapy. A lot of people hold increased tension in their pelvic floor in response to pain from their condition. This then sets up a vicious cycle where pain at times can be almost non stop. Pelvic physio for pain does often result in an increase in pain initial but over time and with repeated treatment it is often found by both medical professionals and also patients that the pain decreases and the level of pain during and after each session disappears more quickly. I don’t know if this is something you have tried previously? I know the thought isn’t partly attractive of trying Women’s or men’s health physiotherapy but the reality is with all pain including pelvic pain physiotherapy is often one of the treatment options used in addition to pain medications or on its own, with lifestyle changes etc. I’m due to go back to work now but will look on here again after 3pm UK time once I have finished work for the day. I hope this information helps both yourself and others.

[Empowered-patient]

Simple advice - don’t stray from conventional medicine and avoid Dr Google

[ViviVex in reply to Empowered-patient]

Interesting. This is exactly opposite the advice that I would give, although I completely respect that everyone has their own journey.

I've certainly found more helpful information and techniques in forums like these than any doctor has ever provided. In my experience, Dr. Google is better at guiding me to the right KIND of conventional medicine than a conventional doctor is (the irony!).

Best wishes, Gardening51! I hope you find the right places for you--here or elsewhere.

[Ala2189]

What a shame. I find this forum very supportive and knowledgeable and especially relevant for pudendal neuralgia. Bye x

[Yacoub]

Sorry that you will leave.. but you have to do what's right for you!! I too sometimes feel when I get a text, I just can NOT read this today. Many times people in pain just find it depressing and sometimes feeling hopeless. Since so many have tried everything you can imagine, read about or Google, and yet nothing has worked! When I know my Levator Ani is not common, I also feel like maybe I'm not on the right blog. I have still learned much. 3yrs of pain changes you, as you know. When many had said the Ganglion impar Block did not work for them, it didn't stop me from trying, all bodies are different. Even the first one I had did help. Still set to do another. My really last step after is Botox. Others say it doesn't work, I'm still going to do it!! I don't know if you use meds, but I was on Hydro 10/325 (highest) and Hydromorphone16mg, Dilaudid scary stuff with Diazapam as needed. Gods will but the only company who is authorized to make the new Rx pads was back logged and I could not get these. I had been on these meds for years, so the alternative pain management Rx's helped me so much, no withdrawals. Much lower amnt of opioids!! Something my Dr who checked for possible prolapses said you HAVE to get off, and then explained how the pain circle is interrupted. He was RIGHT! So with deep tissue massage weekly, I am for the first time in years in very little pain. Sorry this is a book.. just want to help, if I can with my personal experience. I wish you the best of luck, and blessings. I so want for you to get a resolution, as we all deserve to have a pain free life! 😘🙏🙏🙏🙏🙏🙏

[Chica1943 in reply to Yacoub]

Yacoub, please forgive my asking you to repeat parts of your message that I cannot understand. What are the alternative pain mg Rxs ? And what did your Dr want you to get off of? I’m happy for you that you are feeling better.

[Chica1943]

We all know that the same things don’t always work for everyone. So we decide if we want to just keep trying. It may be that you could gain more info and support from the PN support groups on facebook. But I wish you well in whatever your decision. 😊

[Susiebic]

I know it can be difficult to hear all the things people have tried that do not give you relief. I don't know your case. Do you have a trapped nerve? Did you have surgery? Where do you live?