Is it worth it? I don't know anymore

I am really struggling but really good at hiding it

I have had fibromyalgia & widespread myo-fascial pain for 16 years, if that wasn't bad enough after antibiotics that gave me terrible runs and then severe constipation I strained so hard I felt a searing pain in my rectum on the right side from up where my bum joins to the front of my vagina, long story short was told a fissure probably, did th usual arsenal of gtn ointment , etc..been examined a few times even under anaesthetic told yes a fissure, no it isn't , oh yes it is , recently told no it is not pain from a fissure, over the 6 years I have been to dr de Mello who Said it was right sided pne( but at that time he couldn't get NHS funding for c.t guided injections , so a while after that( 2014) saw dr Greenslade Bristol who wasn't sure I was right sided pne so woul not give me a c. Guided injection , my partner and. Are trying to sort out seeing prof Robert in France to see once and for all if i Do hav right sided pne or pain from another source, I feel like a rung out dishcloth all the time , no meds help any of my pain and I have a strong chemical intolerance to so many of them now so can't tolerate them, I cannot believe in this day and age why there are not more specialists who can diagnose pne or pudendal nerve pain, in the U.K or I can barely sit, I can't stand for long , I never feel relaxed , my posture is bad because of the myofascial pain and fibro etc... and I am thinking is it worth living with this anymore, I have become virtual recluse not by choice,at least before the bum pain I did go out more , my partner gets cross with me at times with frustration at our situation which I do understand , I keep thinking as I don't have any family and only one good friend is my life worth living , I feel like I am drowning in quicksand and I keep trying hard but I can't get out of this quicksand, explained to g.p but he can't do anything, I am at a loss, I just don't know what to do, just want to give up permanently

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  • I completely understand how you feel, it is a debilitating and isolating condition to have. You need to get to Nantes to try and get a diagnosis. That will make all the difference as you will have answers and maybe some solutions. Don't give up. Talk to your partner, your gp or a helpline. It is like a bereavemen process that we go through. Everyone on this site knows what chronic pain is like and how it wears you down. Take care and I hope you can get to Prof Robert soon.

  • I so feel for you. Thinking to myself today whilst at opticians carrying 3 Tempur memory foam cushions. Down/ up stairs, weak ankle, for appt. Not easy, moving of cushions and seats several times, finally get to see optician only to find I can only use 2 cushions. Appt finished, but I have to ask assistant to take 1 cushion upstairs for me as there's no time for me to put on coat and arrange cushions for carrying. Just as well I didn't have walking stick with me as I sometimes do. I get so fed up of always having to take these cushions with me if I know I will have to sit down. And like you I am limited to minutes of standing. Your words of " I never feel relaxed" are so true as are your other observations. I feel I am fortunate if I get 4 hours uninterrupted sleep. My PN is bilateral as far as I know. But I still feel my life is worth living even though I know it's not the life I envisaged I would have had over 19 years ago. And the only people who really understand are the people in the same boat as you. There's some kind of an answer out there. I now have several indoor hobbies and I find that helps. There is also mindfulness. I got the book + CD but it's still on the shelf ! But I will get around to listening to it one day. But I do know people who have found it helpful. There is an inner you, that can and will see the way ahead.

  • I too feel your pain. Please don't give up. We here are all in the same boat. Be it a fissure, a fall, surgery, child birth or some other reason for our pain. We have all been through these same situations with our families, friends and partners but unless they actually know the pain you are feeling they just don't get it 100%. I actually have lost many ppl in my life. Most of my friends. I'm lucky that I have a very good man by myself. I pushed him out of my life once but he wouldn't go. Lol. Lucky for me. What I did with my family was I made them all watch a video off the pudendalassiciation.org site. A doctor on that site actually spoke about the horrors that we all go through. It worked for my family. I think the worse I get every time they see me is when they also realize things. So, getting back to not giving up. I've been fighting this actually for 16 years now. Two years prior to the actual terrible pain I suffered a lot with yeast infections. Then in 2001 I was blessed with this. Like everyone else on here, we have all been to hell and back. You have to stay strong and not let it beat you. For the last 5 weeks I have been in such a very bad flare up after getting an external stimulater. That usually works for most. It didn't help me. Then again convential tens units was never my friend. I've literally been going insane with the pain. Many sleepless nights and haven't left my house. So, my pain management doctor is doing yet another nerve block to try and calm down this flare up. (9th one now). I guess what I'm trying to say is I won't give up for you and for everyone on here. I'll keep doing everything until something works besides surgery. That's my last resort right now. I just started a medication called P. E. A. Please everyone. LOOK IT UP. if you are not already taking it. It's OTC. My specialist in Philadelphia recommended it and gave me 3 research articles to go with his recommendation on what it is doing for pelvic floor and pudendal neuralgia pain. It's very popular in London. I ordered it from there and it took me a month to get. I will keep you posted on the status. Also I'm gonna look into cryoablation. I found 3 doctors that I'm researching now. I will keep this group informed on every step I take. So, please. DON'T GIVE UP. ๐Ÿ™๐Ÿคž๐Ÿ™‹๐Ÿป๐ŸŒนโค๏ธDeb

  • I tried looking up P.E.A but had no success. I'm in the states. Could you please tell me more about this? Thanks

  • Look up peacure.com and read about it, but just because it is natural doesn't mean it comes with no side effects and if you are on other meds you could have bad interactions, i spoke to my g.p about it and he says not to take it as i am on antidepressants called amitryptiline, also don' t take it if you are on high blood pressure tablets, before buying it you need to know the risks, do. research it first , maybe put pea supplement on Wikipedia, people tend to think if something is natural and not man made it will be good for you but with all natural things there are side effects as well that people don't realise

    My partner started taking the recommended dose of vitamin d3 recently and ended up in a bad way , 3 days of stopping them right as rain, started them again to see if it was them and was badly again , so threw them away

  • Thank you. For making me wise to this. I should have been from the start. Most of the time I am. I trust my doctors but sometimes we have to be advocates for ourselves. I had some of the side effects. Stopped the medication before it caused more harm. Debbie. ๐Ÿ™‹๐Ÿป

  • Glad I posted them Debbie, the owner hing is if you see something is natural we automatically think it is good for us, but unfortunately that is not how it works!!

  • Thanks again. ๐Ÿ‘๐Ÿ˜๐Ÿ˜‚

  • I am actually from the U.K

  • I just started them. My doctor gave 3 research articles with the thoughts that it might help. Thank you I'm so desperate to get out of this pain. I never thought of the possibility of interacting drugs and possible side effects. I usually do. But I've been in such a bad way lately that I didn't think to. Thanks for the reminder. I should know better. Deb ๐Ÿ‘

  • Also I live in New York. Deb

  • I just want to let this site no I stopped taking that medication P.E.A. Thank you so much for the kind words. I did the research that I should have before taking it. I had some of the side effects going on. So thank you guys. This site is great. Much appreciated. God bless. Debbie. ๐Ÿ˜๐Ÿ‘

  • Is it PNE, PN stretch injury or neuroma. I was afraid I had PNE but I had two neuromas.

  • Can you tell me what a neuroma is? Thank you.

  • A nerve injury

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