BACK AGAIN, SCARED

[clo236]

Hi I havent posted on this forum in a wee while.

Since the last time I had posted I thought the pain was getting gradually better and If I avoided things like continuous sitting then my pain could be kept quite low. Since this all started whilst losing my Dad at the same time I also have been diagnosed with an anxiety disorder, this pudendal issue has literally driven me crazy.

The problem with this whole thing is my age, im 21 and was invited down to a friends 21st with travelling I sat on my neck cushion which I got away with as I had my suitcase aswell, the problem was when we were in the bar, i had no choice really but to sit there and I couldnt bring my cushion because tbh I didnt want to be laughed at/bullied by people I didnt know so I sat there (they were soft chairs) I didnt really notice any increase in pain at the time which was good. But after going to Paris aswell we were mainly walking about during the day anyway but sitting for dinners (I would have been mortified to bring a cushion out). Anyways I have returned home and this whole travelling/seeing friends lasted about 10 days). Well the day after I returned thats when the pain has increased. Im terrified and depressed that this pain was all my fault its been 4 days and the pains still here.

Have I damaged it or is it just a flare??

This is like a living nightmare and noone my age seems to understand , every doctors Ive met said that sitting wont damage the nerve but i dont really believe them, some say I might have this pain the rest of my life, for a 21 year old this is quite frankly depressing


Chlo xxx

[April]

Chlo,
That sounds really difficult. And I can totally understand how this could give you anxiety. My guess is that you did not damage anything by sitting. I have had several flares when I thought I was getting better—one that lasted 4-5 days. So, in my experience with this (just 8 months) flares come and go and usually for reasons I can’t identify. So, I think as long as you avoid things that irritate the nerve, the flare should pass. Have you tried lidocaine? I got that fairly late in the process, but it is a great substitute for icing if you are burning.
April

[clo236]

HI April,

Im really greatful you replied, its easy to feel so alone in this and even talking to someone who has had the same issues kind of reduces the anxiety a bit cause you understand. LIke god if this pain was anywhere else like my arm or leg its like a raw toothache feel. Its been 7 days and the flare up is still here, I mean does sitting damage the nerve if i was sitting sometimes without a cushion for 7 days, im just so annoyed that the pain is delayed as I would have stopped if I was feeling sore.

Im just really blaming myself I feel like Ive damaged it further , its so hard to know what constitute as a flare and damage as the days go on I start to panic more.
ahhh yea thats a good idea, where would I get lidocaine from, im from the uk so I dont know if they would sell it over the counter or anything.]


Thanks,

Chlo
xxxx

[stephanies]

Chlo,

Hang in there, hopefully this flare will subside shortly. I know anxiety can be difficult to keep down when you are experiencing unusual pain, but if you are feeling stressed and anxious that is likely contributing to your heightened pain as well.

Stephanies

[April]

Chlo,

My lidocaine is a prescription and the tube just says lidocaine hydrochloride jelly usp 2%. I think ice is better at relieving pain, but this is, of course, better when in public. If you can find a doctor from the list on this site, I'm sure you could get a prescription for this. You might want to talk about other prescriptions as well. I also think anti-inflammatories (e.g., ibuprofen) help a little.

Flares are hard, but, as Stephanies said, just hang in there. It should get a bit better with time.

April

[Dusty_in_Hope]

Hi Chlo

I am not a physician but I too don't think that you'll have done yourself any permanent damage. When I didn't have a comfortable cushion my pn-like pain got so bad that, upon getting up from sitting, the discomfort was so intense it made me feel nauseous and faint. A few weeks later, with doing as little sitting as practically possible and, having found as comfortable cushion as possible to use, my pain is considerably less.

tbh I didnt want to be laughed at/bullied by people I didnt know so I sat there (they were soft chairs).........but sitting for dinners (I would have been mortified to bring a cushion out).

Why not in future use your cushion despite the circumstances and who you're with? - If it were me I'd put it in a discreet cover so that people don't see that it's shaped with a hole in it (or whatever) for those that might have piles or gynae problems etc., and - maybe you're more principled than I am about telling a fib, but I would consider just dismissing any questions about said cushion by simply saying that you've got sciatica or something. They might still tease you a bit, but, if they do, I'd just try to play along with it until their interest wanes - which it inevitably will. (I've just bought one of these cushions that comes with a discreet cover, which I've found to be very helpful http://putnams.co.uk/collections/pressu ... ff-cut-out and this one is designed for vulvodynia/pn pain relief too http://putnams.co.uk/collections/pressu ... ts-cut-out and this one's a bit smaller to carry around and has a choice of cut outs http://putnams.co.uk/collections/pressu ... ce-cushion. The company is in the UK but they ship to other countries if you're not in the UK.)

Since this all started whilst losing my Dad at the same time I also have been diagnosed with an anxiety disorder, this pudendal issue has literally driven me crazy.

Assuming that you have been checked out for anything sinister going on other than pn, have you considered doing some mind/body work? My pn-like pain/vulodynia is very real like yours is and I am currently taking/exploring this route as I feel that it has got to be worth a try. Perhaps have a read of these success stories which might inspire you: Bunny's story http://www.pudendalhope.info/forum/view ... =74&t=6428; Ezer's story http://www.pudendalhope.info/forum/view ... =74&t=6222; Susanjane's story http://www.pudendalhope.info/forum/view ... =74&t=6322; Kris's story http://www.pudendalhope.info/forum/view ... =74&t=6221; Abigail's story (you can just read her blogs and download her free e-book, you don't have to subscribe and pay anything) https://abigailsteidley.com; Lorraine's story (again, you can just go for her free stuff, in this case her 'mind/body kit') http://radiantlifedesign.com and Mary Ruth's story http://pelvicpain.org/professional/blog ... ences.aspx - she went for cranial sacral therapy which would of course cost something, but she also has some free resources on her website http://healingthroughchronicpain.com/pa ... -bodymind/

I am so sorry to hear about your Dad...When I lost someone close to me I eventually ended up going for some grief counselling and found it very helpful - (Tbh I found it surprisingly helpful as - although I didn't feel right - I had thought that I had gone through the whole grieving process, but it turned out that I actually hadn't).

Kind wishes

Dusty

[clo236]

Hi everyone,

I know Stephanie I was thinking when I get back to university to try and get back into exercising even a walk if the pains bad and some light running hopefully when the pain subside to try and get my anxiety down.

April thanks for the advice I didnt even know you could get lidocaine as it was never offered by the docs, i take 600mg pregabalin and from this flare up at the minute where i take 2x10mg dihydrocodeine.

Hi Dusty, yeh I think you're right I really need to suck it up and sit on the cushion anyways regardless of what people say, i think I only started sitting in short periods cause i thought i was getting better but i probably should have been more careful. In the last 10 days I havent sat at all apart from last night as I had already arranged to meet family for dinner. I brought by togu cushion to sit on for about 2 hours, depending on the type of seat i swap and change to a neck cushion sometimes. Am I ok sitting with cushions if the pain has flared obviously I dont want to have to sit but if I have to? Like ill be going back to university next week and ill need to be travelling and going to classes.

Yeh I think I was in denial tbh about what had happened with my Dad and I think with the whole pudendal pain I think it contributed with me being diagnosed with mild OCD a few months ago. I see a CBT therapist which helps with that. I think im going to get back into meditating again to try and reduce anxiety. Thank you guys for your help it means alot

Thanks

Chlo xxx

[Dusty_in_Hope]

Hi Chlo

Am I ok sitting with cushions if the pain has flared obviously I dont want to have to sit but if I have to?

I can only speak from my own experience and tell you that during the worst of my symptoms - even when I was experiencing horrendous pain in my private parts - I chose to sit (when I had to) using the most comfortable cushion I could find....and my pain still eased.

I see a CBT therapist

As you're already doing some CBT work, I thought you might be interested in the information and suggestions on these webpages http://www.drdavidhanscom.com/5-stages/ ... cond-step/ and http://www.drdavidhanscom.com/2014/10/w ... onic-pain/ They are webpages from Dr David Hanscom's website. Dr Hanscom is a back surgeon who cured his own back pain the mind/body way and wrote a book about it http://www.amazon.co.uk/Back-Control-su ... id+Hanscom. The techniques Dr Hanscom used and describes in his book include CBT to calm the nervous system down to reduce/alleviate pain (not just back pain) http://www.drdavidhanscom.com/category/ ... l-therapy/ (As mentioned on the latter webpage, Dr Hanscom used and recommends others use a CBT book called “Feeling Good” by David Burns M.D. http://www.amazon.com/Feeling-Good-New- ... good+burns)

Best wishes

Dusty

[clo236]

Yesterday my pain flare calmed down and I was so thankful, I'm so stupid am really kicking myself, I was kind of reclining on the sofa with my legs up and I had a pair of keys in my hands like 2 metal keys and I dropped them between my legs. I mean SERIOUSLY I'm just destined for more pain . Would that cause me more damage? I hate this because I really start to panic and punish myself Thanks Chlo xxx

[Dusty_in_Hope]

Hi Chlo

First of all, please try to stop beating yourself up. You have to move around and live!

Did you hurt yourself in moving forward to retrieve the keys from between your legs or did the keys fall on your genitals and hurt them - or perhaps it was a case of both? - Whatever the situation, I can't see that you will have done yourself any long-term physical damage.

I am not making light of any pain that you are feeling - as I am sure that your pain is just like mine - very real!...But I believe that there is likely to be a mind/body connection and doing some mind/body work will help and might even result in a cure/healing for us. Even if I am wrong it still can't do any harm to try it...As long as you have already had yourself checked out to make sure that you don't have anything sinister going on except 'pn', my advice is to put your attention every day on doing some mind/body work to calm your autonomic nervous system down. Perhaps start immediately with some 7/11 breathing; I find it gives such - almost instantaneous - relief http://www.liferesolutions.co.uk/upload ... 0sheet.pdf

I've will be sending you a private message in due course.

Best wishes

Dusty