Un-ending pain!

I am very down because of pain and distress. I have PN and spinal cord injury and nothing ever seems to be "ok!" I am home bound and a doctor comes to my home monthly. I just find her and so many others with a lack of empathy. I am only on Percocet which is a joke. I really don't believe anymore that any pain pill gives relief. I have tried alternatives which make my conditions worse. I read this forum every day and am amazed at the pain all of you tolerate! I think at times of ending it all, but some how prayer or grace keeps me hanging in there. Do any of you feel that spiritually, God keeps you going, but do you still get the urge to give up? I can't let go of life as I once knew it! I admire all of you and keep you in my prayers. I ask you to help me "not give up!" with your prayers. Life is very hard and I don't always feel a reason to go on. I am scared I might give up! Thanks for listening to me!

Sending hugs & blessings and relief from your pains!

trishj46

20 Replies

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  • I too struggle to let go of a life I used to lead. A pain free life. But after 4 years of pain and huge life modifications you would think I would have accepted my lot eh! .....

    I try to keep my spirits up and be greatful for the small things.

    I found a mindfulness for health book and cd really helpful. Have you ever considered anything like that??

    Keep on at it.... We are all here together!

    Xxxxxx

  • Trishj46, I hear you. I've felt like throwing in the towel many times. I've spent way too much time in the last 24 years in pain and fatigue...and frustration.....with no doctors who seem to really be able to help. So I go through phases where I medicate more and stay in bed. Sometimes, I get a renewed strength to go on, and to get back to the search for doctors and answers with a new hope that something will work. When I've been disappointed with the doctors and outcomes time and time again, I think it's just not worth the fight, and I end up pulling the covers over my head. All of the surgeries and money to get the little amount of help here and there, has it been worth it? My kids haven't had their mommy, so much of the time. My husband has been depressed at times because of this pain and what it does to me, and the extra load he has to carry. It's a tough life. We've hung in there. I've hung in there, for all these years. And I do believe God has given me the strength. We are stronger than we think sometimes. I know you are too. If you've been diagnosed with pudendal neuralgia, and all other things have been ruled out or treated, there are some people out there who may be able to help, if you can get up the ability to travel. Because chances are they're not very near you. But it's worth it to try. I've improved a great deal in the last year or so because of the doctors and therapists I've finally found. I'd also recommend a mental health therapist who specializes in people with chronic pain. They can really help find ways to cope. And it helps to talk, because we all know that none of our friends can really understand. Prayers are with you, Trish.

    -Shanelle

  • Thank you for your reply and kindness in taking the time to do it.

    Yes I do have Mindfullness book and cd, it is helpful, but after a while of trying all these things, I just go back to the feelings of emptiness!

    I do see a psychologist every Tuesday, and without her I don't think I would still be here! Stay well! God Bless!

    Hugs!

    trishj46

  • Hi Trish,

    I cried when I read your post...thank you for being brave enough to be so honest and transparent. I too have PN and like you have had thoughts of giving up. You sound like a strong woman of faith. My relationship to Christ is what has helped me through the toughest of times. Letting go of "how things once were" is very, very difficult, but with Him you will make it through those times and move through the different stages of grief. I didn't think I would ever accept the reality of not being able to sit comfortably again. So much of what we do with our friends involves sitting as we visit with one another. I still don't like it, but it is a constant reminder of how much I need Him in my life. I have had pudendal inter-stim surgery done for my PN with good results, it doesn't "cure" all of my symptoms but they are much more manageable. You can search pudendal interstim here to read more about it if you are interested in that form of treatment for PN. I stumbled across a daily email devotional that has really encouraged me and thought of you today when I read it. You can find it at RestMinistries.com. All devotionals are written from men and women around the world who suffer from some kind of chronic pain. Sometimes God uses their insight to lift my head and I pray that will be true for you as well. Don't give up hope!

  • Thank you RLH356! What a coincidence that I also belong to Rest Ministries!!

    I read and write daily on that site. It is so helpful and inspirational! Just one more thing to help me get through! Like you I cannot sit at all. I miss so many things. Reading the sufferings of others makes me realize how much others are hurting! I have heard of inter-stim, but don't know if it relieves nerve pain from PN. If I thought it did, I would look further into it! So you have more comfort?? I have to lay on bed with icepack off and on.

    Good luck with it! Sending my prayers off to you, remember me in yours!!!

    Hugs!

    trishj46

  • That is SO neat! Thank you for being a part of that ministry. I am thankful that you find comfort and strength from them as well. Below I have included information for the two doctors in the united states that do the inter-stim procedure specifically for PN. My doctor is Dr Benson, he was taught by Dr Peters. They both have had much success with this procedure and I would encourage you to look into it. I don't know if either of them are in your area. We drove 6 hours to Dr Benson and I have no regrets. He is a very skilled, caring, compassionate doctor who sees women like us...and his staff are equally as caring. I was in severe pain daily 8 - 10. Now my pain level never goes above 5...I still have to be careful how much I sit...I doubt I will ever get that fully back, but I am much more comfortable than prior to surgery. Hope that helps you understand better what my success has been. If you have any questions, don't hesitate to ask. I pray the Lord directs you to the answers He has for you!

    Dr Kevin Benson

    Sanford Health

    Sanford Female Pelvic Medicine and Reconstructive Surgery Clinic

    1500 W 22nd St Ste 402

    Sioux Falls, SD 57105

    (605) 328-8750 (Office)

    (605) 328-8751 (Fax)

    Dr Ken Peters

    Beaumont Hospital Women Urology

    3601 W 13 Mile Rd

    Royal Oak, MI 48073

    (248) 898-0811 (Office)

  • Thank you for the information, but I am afraid that I am too far away. I live in Collingdale, Pa...Its difficult for me to go from house to someone's car to go to a Doctor! With the spinal cord too I can't get far. This has been the same problem with a lot of others I have wanted to see. I appreciate your help! These are the kinds of things that convince me there is no help out there for me! God Bless! Good Luck again!!!!

    trishj46

  • I'm so sorry Trish...I understand how difficult; if not impossible travel can be because the bouncing up and down of a vehicle is probably the biggest trigger of all for pudendal pain. That would be a LONG way for you...I don't want to come off as pushy, but just want to throw an idea out there. I purchased firm, cot-sized foam and a mattress topper in the same size and put it in our SUV with one side of the seats lying down and that's the way I was able to travel. Also, if you just wanted to speak with Dr Benson or his nurse, Judy to see if you even sound like a candidate for this surgery that would be possible. I know the Lord will clearly show you the path he has chosen for you to take. Prayers and best wishes.

  • I too cannot sit, so any car journey longer than a few minutes I put a couple of pillows in the back and lay on the back seat.

    If you can manage to speak with the consultants RLH356 has mentioned that would be a massive help to you. You just never know what help is out there.

    Xxx

  • Thank you for the offer of your mattress and etc, you are very generous!

    I wish I could but its just not something I could do. When I use to go out to Doctors I also put pillows in back seat and have to use ice packs always!

    Thanks to all of you for your kindness and input. It means a lot to me that people do care! Stay free of pain and I will remind God to look after you!

    Blessings & Hugs!!!!!

    trishj46

  • I totally get it and am so sorry...Stay strong Trish...praying for relief for all who are afflicted.

  • RLH356 You have nothing to be sorry for my friend! You have extended yourself and reached out with so much empathy and generosity--------more so then some of my so called friends! Don't ever be sorry for offering a part of yourself to someone you don't even know! I hope we can chat sometime if we happen to reach out to each other! You and others on here have helped me get through the day! I thank you for that! That's all we can do is one day at a time. So promise you will not be "sorry" for anything you reached out to touch someone else's

    heart today! OK???? I am going to get some sleep & ice, and promise to remember you in my prayers tonight!!

    I feel like I have known you for a long time---a gift from God!

    Hugs!

    trishj46

  • Trish...thanks so much for your sweet reply. I had a bad day physically and emotionally and the Lord really used you to lift my head. I think sometimes people who suffer from chronic pain tend to think they no longer have purpose and that's really far from the truth. We listen, encourage and uphold one another in prayer. That is an important role we play in one anothers lives even though we haven't "met" one another. Thank you for praying for me...the Lord keeps bringing you and others I have met here to mind. The connection a person has with others who have "been there" is strong. Let's keep in touch friend. :)

  • I read a book on chronic pain and the reason a lot of patients suffer is because doctors are worried they may become addicted (ugh).

    Have they offered you a fentanyl patch so far? how about a caudal epidural ?

    I once had horrid neurological symptoms in the form of nerve buzzing/vibrating and those went away for good while taking magnesium....they do come and go and magnesium controls this. I think the central nervous system stops working properly for us and then chronic pain happens, since not everyone with nerve damage gets chronic pain!

    What I did when I first got ill was read a LOT about neurological conditions and CRPS. I think it helped me because it calmed down my anxiety because I then understood what was happening.

    I don;t know if this is worth mentioning, but 6 months ago I started having excruciating back pain (in my 20s!). I could not bend over, my back felt incredibly stiff and sore. I went to a lady who did a session of Alexander technique with me. I kid you not, after the session I could feel my back getting warm. I was able to walk free of pain for about 4-5 hours afterwards. Alexander technique is usually used by musicians and actors to make them aware of posture and body tension. It also works to "release" areas of muscular tension. It wasn't a cure, but it felt like a huge relief for that time!

  • Your sad but honest and brave note echoes much of what my wife has experienced since her chronic pain in her right buttock was diagnosed 13 years ago (after some extensive and sore trigger point injections) as inflammation of the sacroiliac joint. Since then she has been subject to a myriad of treatments including painful physio sessions and injections into her sacroilliac area which made the pain worse. She has also attended a local pain clinic but they seem to have run out of ideas. Over the last 3 years or so, she has been in the care of Dr Baranowski in London in 2 guises - initially on a private basis but mostly through the NHS. The former guise gave us a lot of hope and promises but when the policy ran out, we were able to get her referred to him through the NHS. We've probably seen him 3 times over the last 2 years in London but for less than an hour each time so not much treatment given. I do believe though that it would have been more productive if my wife had been a local. Dr B did change the diagnosis to one of damage to the central nervous system but he and his team have not been able to explain that clearly to us. They say the pain is real but the message to the brain is distorted in some way. Now the local Pain Clinic has more or less said that they have done all they can do! I share your frustration!

  • I feel for you. I feel guilty when I wish I was dead just as a way of getting rid of the pain. I am a widow wih two adolescent boys who are at the difficult stage of getting launched into training. i envy your faith in God- it would be good to believe. I should join the Quakers.

    I am only wating now for a pain specialist- I only hope it helps. I don't know if anyone else gets tramadol- I am afraid of being addicted so try not to take it -

    anyway the effect is limited.

    it's a struggle =sometimes just surviving. I have a therapist which helps but she is away for August- so survival.

    i find it helpful to listen to sleep hypnosis pain tapes especially Jody Whitely on You Tube when the pain wakes me up.

  • I'm sorry to hear about your suffering.

    I'm a male with chronic pelvic and urogenital pain; for the past five years I've known nothing but constant pain, irritation and unwanted feelings of stimulation in this region.

    So many times I've wanted to end it.

    Doctors have generally been useless and dismissive, often telling me it's in my mind. I don't think they realise how destructive those sorts of comments are.

    However, somehow I've persevered. I guess, deep down, I don't want to end it and besides, I'm too afraid to actually carry it out.

    I wish you every strength. Look into supplements that could help if you don't already take any. Do you have any hobbies?

    Above all, work on being compassionate with yourself, as it's far too easy to start getting hard on yourself.

  • socirul sorry for your pain too! Today is agony for me, so just laying on bed with ice pack. I probably sat too much yesterday and then I pay the price. Yes, for me it would be easy to end it all, there is no fear. I just would not do that to my family an I guess my faith in God will not allow me to carry it out. Try to believe that you are strong and with a spiritual outlook you can get by one day at a time. Its the only way I can do it! I find life very hard at times! I love to read books, especially poetry which soothes me! I like spiritual books, and tapes. The tapes help me to get some sleep---try it!

    Also the computer but not able any more to stay on it as long as I would like.

    I don't have the energy I use to have, but once again, one day at a time. You too have compassion for yourself, its very important for people like ourselves! Thanks for writing---I needed that!

    Hugs & blessings!

    trishj46

  • I have multiple abdominal adhesions from about 6 operations (myomectomies, Caesarian and hysterectomy (nearly dies on the table, massive bleed ended up being opened up 3 times in all for the one operation). Have had adhesions ever since my second op 20 years ago and as some of you may know (I am a nurse, no longer in clinical practice but after 35 years....) adhesions are caused by surgery (not everyone gets them so don't worry). So I have multiple adhesions now and internal Caesar scar attached to bladder. in pain almost daily, back probs too, haven't been able to take my daughter to school for a couple of years.

    I have been like this for 3 years, constant pain...depression et al, I have back problems too, v. painful

    My faith too is sorely tested, and I have felt and still do feel the same as you.

    Has anyone ever had a Spinal Cord Stimulators? to relive the pain

    Thanks

  • Hi, I understand 15 years of excruciating flare ups and temporary relief from treatments until this latest flare I am now 53 and wonder if it's worse due to aging this time my stress is so bad , I also wonder if it's worth getting up at all but my kids , though 19 and 26 would like me around hang in there you are not alone

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