Have any of you developed chronic ins... - Pelvic Pain Suppo...

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Have any of you developed chronic insomnia because of the pelvic pain and discomfort you are experiencing?

Lovetocycle76
Lovetocycle76

Hi,

I'm going through turmoil. I've now developed chronic insomnia which started because I missed one or two night's sleep due to the pain and discomfort I was in but now even when the pain isn't as bad I'm still unable to sleep. I got up at 3:25am yesterday for work and I haven't slept since because I didn't sleep a wink last night. I'm tired yet I just don't feel sleepy or able to relax enough to shut off and if I do get to sleep, I usually wake up again 10 minutes later and I'm unable to get back to sleep. It's absolute torture. I'm stuck in a vicious circle and feel irreparably broken, dysfunctional and tremendously sad. I suspect it's probably stress which is causing me to stay awake in that horrible tired but wired state that doesn't allow one to rest and relax properly. I just can't seem to get out of this mess. I don't recognise my life now from where it was 3 years ago and I'm losing all hope. I think when you are exhausted it's hard to face the day and remain positive. I always used to sleep well but since September when my symptoms really deteriorated I've been struggling badly. Have any of you experienced chronic insomnia and have you had any success treating it?

29 Replies

Jia Wei GUI Pi Tang I like the powder because you can add just a little to help you get back to sleep. These are chinese sleep herbs. One little spoon to 2 little spoons . Google it. Try a tiny amount at first to you make sure you don’t have any allergy. Got me off of any and all sleep drugs. Worth a chance.

Thank you so much.

Ive had chronic insomnia for a million years even before i had chronic pelvic pain. I take sleeping pills which i was planning to stop taking by seeing a therapist specialized in insomnio cognitive behavioral therapy. That is apparently a more long lasting solution. I am however scared of doing that right now because at one point this year i had a huge flare up of my pain symptoms (vulvodynia) and now ive tried a million diffeerent and nothing seems to work. I have started PT a couple weeks ago so im gonna see how that works. Id recommend seeing a psychiatrist and perhaps trying sleeping pulls for a bit until you can get back to sleep. Insomnio is horrible so i understand everything youre going through (currently experiencing waking up in pain even tho i take meds). Good luck!

Thank you. Best of luck with your PT. Let us know how it goes please. I'm waiting for a defecography and biofeedback with a PT but think I'll be waiting a while. I had a sigmoidoscopy which revealed prominent rectal veins. That could explain the constipation issues and pain after defecation. What are your main symptoms if you don't mind me asking? Is it pain and urinary frequency/urgency in the genital region? It's horrible having pain in that area. It's that that triggered my sleep problems in the first place. I wish you well.

I have vulvodynia which was properly diagnosed a little over a year ago but had to go to a million drs before they did, as is always the case from what i see. Having pain down there is rly the most awful pain ive felt in my life, and ive had plenty. Righy now im taking amitryptiline and cyclobenzaprine and i think it seems to be helping. Its either that or the PT!

I'm glad to hear something is helping. I hope your improvement continues. Thanks for the update. Happy New Year. God bless x

Try using passionflower tablets. I hope they work. I couldn’t sleep without them. They calm down the agitated Sympathetic Nervous system.

Passionflower spray helps me return to sleep- luv it!

Thanks for the suggestion. Merry Christmas to you.

Merry Christmas to you as well.

Thank you.

Hi..... tailbone removed 7 years ago and terrible anal pain ever since,.,,, chronic stressed clenched sphincters,,,,, if u don't have a great dr who will give you meds.... load up some one Benadryl,,,, have some cereal and mild 1/2 hr before bed,,,, if you have a dr,,,, XANAX is far the best,,,,, I mg or even 1/2 will calm you like a baby,,,,,, I take a small dose of Xanax and then a little while later 10 mg of Abien ( zolpidem _),,,,,, trust me I have have GAD panic anxiety since a little boy on top of the pain and I have taken this regimen every single night,,, hope it helps I pray for all of you on this thread, we all deserve to get and answers and relief but rarely do until we suffer for soooo long! god bless and merry xmas!

I pray for you too my friend. Your story really resonated with me. God bless you for trying to help others whilst you are suffering so much yourself. I hope and pray that there will come a time when nobody has to suffer from pelvic pain, because it's truly the spawn of the devil. I wouldn't wish it on anybody. It messes you up so much mentally and physically. I've often thought I'm not afraid of dying as it will be a relief from this affliction. Merry Christmas and a Happy New year to you all.

I lay here wondering, how can it be that no one can help after 10 years of EVERY single day this horrible pain on my right internal spinster as is someone was clenching it with a vice grips.... every dr I go to or pt has lied to me telling me you'll be better soon after I treat you...on feb 4 I see dr Reddy the best colorectal dr in the country at Yale. I don't even know what too say anymore,,,, It's like so rare that they just don't have the time to figure it out so more pills more pelvic floor exercises! uhhg and nothing happens,,,I have prayed to God so much yet God has his own timing and reasons that are so above our thinking. I want my life back. I can't even remember what it was like,,,,yeas actually I do. Playing piano concerts all over the country and with my band, feeling so fulfilled and even performing at many nursing homes doing GODS will. I had a future. Now all I see is pain and people seeing me a a huge failure.... I haven't been able to sit for years....I cannot pull my own weight.....How do people not just end it from this king of sonctant pain for years and years? Actually I read that pelvic pain syndromes re the highest cause of suicide yet no one ever even talks about it! there are so many charities yet where are the commercials for people like us who need more drys taught the workings of the pelvic floor.... My appt is on Feb 4.... I'm so worried about what I might do if I get another " sorry there's nothing we can do "! God bless you all who are suffering...It feels so lonely,,It consumes your every thought almost as though you are on automatic pilot and cannot even feel the happiness of anything.... No wonder depression and severe anxiety accompany pelvic pain..... My girlfriend has had it with me. I canny even talk to her anymore because she's so sick of seeing the vibrant talented funny great lover she had turn into a loser who can't even tighten his own pelvic floor muscles to have sex or provide the money I sued to from performing! How do I even live through this anymore? God bless you all!

I know you will probably be sick of hearing this my friend but please don't give up hope. I understand everything you are saying with regards to pelvic pain that is deemed untreatable and the terrible effect it has on our emotional and mental well being. It is the loneliest of roads. I liken it to being at a crossroads and not knowing what direction to take so you choose a road and every road you take seems to lead to a dead end. It's truly despairing. I'd be lying if I said suicide had not crossed my mind. It has, more times than I care to imagine, but then I think about all the people that that would hurt. I couldn't do that to my daughter. I believe this life is a real test of our courage and moral fibre. We were put here to pass the test and learn about ourselves. Taking our own lives would mean we have failed the test of life. We are only here a short time anyway. I guess we will all be better placed when we finally make it to God's Kingdom. We will have learnt perseverance, how to battle on and hang in there and have the empathy that comes with hanging in there in very tough situations. All great qualities. I realise that this won't help you now but God loves you and many others too. Any time you want to chat feel free to message me. We could all do with a lift at the minute. I hope and pray that you have some success and see some progress with your February appointment. I've been diagnosed with pelvic floor dysfunction today after a proctogram examination. I will now need biofeedback with a therapist and to see a colo-rectal surgeon. Stay strong mate. Keep us updated.

Thank you so much..... I will pray for you......I had a hugeeeeeeee breakthrough last night.... I got my girlfriend to listen to me because I needed here to go through timeline with me and see if we could figure this out ourselves since no drys have the time no matter how great they are..... How long after the tailbone pain did this other rectal pain start. She goes about 5 months.... then I said isn't that when after all kinds of stuff they tried they to address it they gave up and pay me high doses of oxycodone?.... She says yes,,,,,, I go during that months and months after the pain med made severely constipated.... she said yes..... That was when I was pushing and staring till my eyes bugged out trying to get the stool out of me day after day after day..... At that time drys didn't even tell me this was going to happen and I remember one day I pushed so hard I was actually sweating,,,,,,,, she wasn't living with me at the time and she says.....OMG AL!!!,,,,,, NEVER BEVR DO THAT!!!,, and I go ever since then I actually force myself to go to the bathroom even when I'm not totally ready in fear of this stuff happening again even though I am taking still softeners now and have linzess what I did was Damage the internal sphincter muscle on my right side,,,,, I am very strong right side Dom because of all the sports I played,,,,so weird appendix burst right side of course,,, then after that hernia repaired right side should elbow injuries all right side,,,,,,,,, I can put my finger right on where it is damaged . the muscle on that side of the ring is hard very painful to the touch where on the left side of the internal sphincter ring it is smooth and totally non painful to the touch,,,,, It appears I damaged it have continued to damage it every single time I have gone to the bathroom incorrectly!!!! for years.. Imagine breaking your ankle and then instead of putting a cast on it and staying off of it for 6 weeks you go outside and run on the broken ankle day after day!!!!!!! that is what I have been doing for 10 years!! The dr who took my tailbone was right, my tailbone was hanging by a three and that pain after about 3-4 years finally stopped but this pain has gone on,,,,,Now I have to be totally retrained,,,, diet...How and when to defecate the right way and complete lifestyle changes,,,,The pain is going to last for a long time but at least now I have hope and reason which without one leads to so much mental anguish!!,,,,,,, I pray for you to be better and out of pain asap,,,,,, thanks for listening,,,nice to have a friend going through the same pelvic floor pain issues to talk to ,,,God Bless! al

Thank you my friend. I too have prayed for you. I'm glad you are speaking to your girlfriend again and hope that you can work things out. It's so difficult because we have to investigate things ourselves and narrow things down because knowledge and treatment on these issues within the medical community is so lacking, which is a real shame. Keep fighting buddy. We will find some permanent relief one day I hope. Until that day comes, keep the faith. Keep us posted on your quest for relief. God bless you.

You are such a kind person god bless you too me too will pray for us all here🌸🦋🌴

You're not alone. Lack of sleep can bring confusion, anger, sadness, a lot of mixed emotions.I used to sleep about 20 min at a time from my pain. I broke my sacrum, pelvis, s1, l5, l3, l2, and some other bones.

There were times I didn't sleep for 7 days straight with only 20 min here and there.

My body slowly adjusted to the pain but I also learned some tricks. Pillows help stack em where ever you need. Medication definitely helps. Xanex works very well but doctors do not like prescribing it for sleep.

An old yoga technique is to soak hands and feet in cold water before bed... The rapid drop in blood temp helps relax your body and will enduce deep sleep. I use a heating pad with great results. When the hour timer shuts it off my body temp drops and I get much better sleep (I set my a/c to 69 also) . Similar to yoga technique.

Also block all light or wear an eye mask. Light interrupts your natural sleep cycle.

If you are able to change the bed you sleep in every now and then.

The best thing for insomnia is getting back on a sleep routine, so hopefully some of these tips might help.

You are not alone. It's 5:20am I haven't slept yet today. My wife hates it but it's just part of my life with chronic pain.

I don't like it, I hate it, but if I'm not truely ready to sleep I will just lie in bed awake all night.

I think acceptance and knowing your not alone can help.

I truely wish you the best and hope you find your balance.

Good luck friend!

Thank you so much. I shall try the cold water technique on hands and feet. It sounds terrible what you have gone through. I hope you are somewhat better now though I doubt you ever get over an injury like that!

Same to you. I wish you well.

I am so sorry to hear that Lovetocycle76.

You are not alone. I have had insomnia for years and for the majority of the week, I have been known to get 2 hours sleep a night (pain can wake me up, stress, worrying about my health and going to the toilet multiple times a night also disturbs my sleep too).

I have tried sleeping pills aromotherapy, massages, acupuncture, you name it. The only thing that consistently has been working is a deep tissue massage and or meditation.

I tried; youtu.be/SyRcMXOTH9o

For the meditation.

Not one thing will work for everyone but this has worked for me and I was able to get over 7 nights sleep in row with the meditation alone. That was the first one I found, if you dont like it, try another. Most of the time I fall asleep before the video has ended and one or twice, I just restarted it and then dropped off before it ended.

Having suffered insomnia for such a long time, I know how difficult it can be. You only need a few good nights sleep before you start feeling better. Dont give up!

Ps. I also asked my GP (pre covid) for a referral to a sleep course and was accepted and found it useful, even if it was just to confirm that you are not alone and that we can survive on little or no sleep and that it will get better.

Thinking of you ♡ xx

That's so kind of you to post. Thank you so much. I keep reading about the benefits of meditation so I must get trying to do some. I shall have a go at the video you posted. God bless you.

Hi, sorry to hear that. Insomnia is so overwhelming. Depending on where you are in the world, the following has helped me:

1. Melatonin. I took this 5 or 10mg a night for about a month and it regulated my sleep pattern. For many months after that I slept very well. Sometimes we can lack natural melatonin. Melatonin is only on prescription in the UK but many other countries sell it over the counter

2. Valerian root (tablets) are a very good *short term* relief for Insomnia. Could take that at night for a maximum of a month.

3. Magnesium glycinate. Magnesium is a relaxant so taking 400mg before bed has been great for sleep.

4. I'm told lavender tablets help calm people to sleep better

If you use any of the above it's important to address the issue of stress too.

5. Meditation daily is key to helping change the way the brain responds to stress

6. Trying to be present and mindful in everything you do

7. Some sort of talk therapy, CBT or counselling. Its important to address what's causing the stress

8. There's a book on Acceptance and Commitment therapy called The Happiness Trap by Russ Harris. If you practice the advice it can be life changing. For example I have severe pain in the middle of the night, before I wouldn't be able to go back sleep. I'd get only 4 hours a day. Now, thanks to this book, I can sleep through the pain. I don't stress about it, I say to myself it doesn't matter and I fall back to sleep. It teaches you to observe the issue without judgement.

9. Daily exercise of 30 minutes duration which is medium or high intensity daily. Never in the run up to bed. Earlier in the day is better

There are techniques to help you fall back to sleep at night:

- counting in your head from 1000 backwards in 7s... so 1000, 993....

- thought blocking: saying "the" to yourself every two seconds

- picturing every aspect of a beach or wherever you feel calm, the warmth, the blue sky, the sand beneath your feet, the waves etc etc

- observing your breathing without judgement and once toy feel calmer a body scan, no judgement, just observing each area

- could also learn progressive muscle relaxation (videos on YouTube) to use in the middle of the night

I've had chronic Insomnia for 10 years but a lot of the above has been so helpful. I now sleep at least 6 hours and sometimes over 7. Worth trying the techniques above.

Do speak with a doctor if things have got too much.

Best wishes

Thank you for the wonderfully informative post. I took a valerian tablet last night but still had very little sleep. I'm so tired but just can't sleep. My wife says I always jerk when I'm about to go from light sleep to deep sleep but when I jolt it wakes me up and I can no longer get back to sleep. It's almost like a bolt of light shoots through my brain and jolts me awake. Can these Cognitive therapists be found privately or do you need a doctors referral do you know? I shall look into everything you have mentioned. It's very kind of you to post. I'm just so stressed because I don't see a way out of my current situation but I know I'm going to have to change my thinking but it's so difficult. You are a good person. I really appreciate your advice so thanks again and Merry Christmas to you.

Hi, I totally know how you feel. I have had many occasions where I feel like it will never end but I do have times when I sleep well. So nothing is permanent even if it feels this way now.

It sounds like your mind is too active so processing that is very important.

If you are in the UK there's something called IAPT, if you Google it you can self refer to your local provider for free. Otherwise you could do it privately. You specifically want a specialist in CBT Insomnia. The other thing is high intensity CBT is very important. The low intensity version will not be as effective.

Doing it privately will definitely be quicker but I suppose its worth asking your local provider how long the wait is and if they'll offer you high intensity. They normally only start with low intensity but that varies based on the situation. You don't need a referral for private

bacp.co.uk/about-therapy/ty...

If you're in the UK, there's also something called sleepstation (the middle level course is free). You can refer yourself, they ask your GP to confirm they're happy for you to do it. They teach a lot of techniques to help you fall back to sleep (the ones I detailed and more). They also do something called sleep restriction to help regulate your sleep. It can be really hard to do but it does help something like 80 percent of those with Insomnia. Sleepstation course is a CBT insomnia course so worth thinking about if you can handle sleep restriction for a month or more. I started on a max of 6.5 hours in bed per day, then increased by 30 mins each week.

If you have any questions let me know and I hope things improve.

Merry Christmas 🎅

You're a Godsend. Thank you very my friend. I really appreciate you taking the time to help me. God bless you.

Hello lovetocycle76. Did you know there is a Facebook group for Pudendal Neuralgia and Pelvic Pain UK which has nearly 900 members or should I say sufferers. You may like to join as there are quite a few men in there who have pelvic pain and they may be able to help you. If not I wish you a Merry Christmas 🎄💕🔥💕

Thanks Marion. Merry Christmas to you too.

The doctor has prescribed some amitriptyline for pain relief and to aid sleep and my own GP has said to consider 6 months on the anti depressant Citalopram. I understand depression can be a cause of insomnia and I'd be surprised if I'm not depressed to be honest. Thank you to everyone who has responded and reached out to me. I appreciate all of you.

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