I have pelvic pain I was on nortriptyline at 10mg for 6 months and now it’s increased to 50mg

[PainNoPain]

hey - I was on nortriptyline for 6 months at 10mg , was advised by pelvic specliast to stretch and not strengthen, my symptoms are worse and was put on 50mg , I’ve been on increased dose for 4 weeks but still haven’t noticed any difference in pain…my question is , I know everyone is different…anyone experienced this where they have suffered from pain, managed to control it, done something , the pain got worse , their medication was increased..how long does it take for the full affect to kick?

Thank you all

[Dondonsm23]

Hi there I have been going through the same but over a long period trying different medication over the last 4 months I too have been on northtriptyline increasing to 50mg along with a buprenorphine patches 7 day ones at 10mg up to 25mg this has not been working for me I am still in pain which is still effecting my everyday life I still use hot water bottles Trial error name keeps popping up yet I honestly feel why is northtriptyline is even giving to patients nerve pain 4 months down the line I am still no were pain free I have been under pain specialist at 1 of the very best pain hospital in England here in Liverpool

I feel for you now my doctor for chronic pelvic pain is lowering my northtriptyline meds taking me off them to start with something else but still have my pain patches I am back and fourth really gets you down go back ask for patches maybe that is also another med that could help you good luck

[PainNoPain in reply to Dondonsm23]

Thank you for your reply. The 10mg was kind of work for me but it took about 4-6 months to start seeing a difference in pain… but when they increased it, they should it would take 4 weeks but I’m not feeling any difference. I have symptoms of PN but have been checked a couple of times and they said I don’t have the entrapment and my pains are due to tight pelvic floor…this is where is gets tricky for everyone around the world and drives everyone one mad about what exercises you can and can’t do…I’ve spent thousands, one says stretch, one says strength, then the other says do this and another says do that and in the end they are all exercises that they give you , you can pretty much find on YouTube or online? The lady i was seeing ( I’m a male ) 25 years experience in pelvic floor issues with me and females, tells me to buy a book and follow the stretches on there? Bizzare….anyway the exercises she told me to do made things worse….I have asked for it to be increased to 60-70mg as you can go up to 75mg for notriptyline. Maybe I just need to be a bit more patient….im sorry it has hasn’t worked for you…

[Dondonsm23 in reply to PainNoPain]

Maybe hanging on little longer as mines been 6mnths trial & errorWish you better & loads of luck x

[Builderboy in reply to PainNoPain]

Hi I’ve never heard of your prescription before I’m on gabertentin , what symptoms do you exactly get I get a burning sensation between my buttocks which makes sitting uncomfortable I’m having two nerve blocks tomorrow

[PainNoPain in reply to Builderboy]

Hey - so I have shooting , pulling and electric shock- tingling sensations in my glutes predominantly on the left side when sitting and lying down which radiate in my groin thighs and testicles …but the second I get up , they disappear….now I’ve been around the houses , one tells you to stretch? One tells you to stenghthen? Others tells you to work on your breathing exercises…the stretching made my worse so I stopped it… what injections are you getting?

[Builderboy in reply to PainNoPain]

I’m having nerve blockers in both sides of the pudendal nerve, and I’m praying I get some kind of a result

[PainNoPain in reply to Builderboy]

Good luck with everything. It is a horrible pan, which nobody really seems to understand or know how to treat in the medical field. You do your back in and straight away online there’s a million different exercises but when it comes to this issue…there’s a huge grey area which is sad. There are soo many people out there now as we speak suffering in silence trying to get through a normal day just by sitting down and not being pain….i managed to control it, I trusted this pelvic specialist and I’m worse off….this happens a lot , they tell you to listen to your body? I’m in pain 24/7 so what do I do after the exercise when the pain is back? Does it mean it hasn’t doesn’t work or do I carry on 3-6 months even if I’m in pain just like we have trial all these different meds to see if they actually work?!

[Midori83 in reply to Dondonsm23]

It takes at least 6 months to start noticing an improvement with nortriptyline.

[Midori83]

Hi. From what the urogynaecologists told me, it takes at least 6 months to start seeing any improvement with nortriptyline. I am also on gabapentin, prescrived by a neurologist, and I am on a waiting list for nerve blocks. Have you tried this route yet? I found the urogynae help very limited, that is why I decided to see a neurologist and a pain management specialist at the hospital. I hope this helps

[PainNoPain in reply to Midori83]

That’s what i thought…it took about 6 months for 10mg to kick so now that I’m on 50mg I think 4 weeks is a little short….i will be more patient…how long have you been on it and does it help with pain??

[PainNoPain in reply to Midori83]

I have tried steroid injections , two in my sit bones as they hurt when I sit, and Botox injections in my tight pelvic floor but they didn’t do anything….so now waiting for the meds to kick now that I have increased them. I did think 4 weeks was little short when he said I would see a different so going try for 3 months and see…otherwise will try duloxotine again….a lot of people say it’s really good but side affects are not great…whereas nortriptilyne apart from constipation and dry mouth that’s all I’ve really had …

[Tryingtolive62]

hi I’ve had pelvic pain for 5 years now it’s horrific I recently started ketemine treatments for severe depression and nevre pain hope it helps and stay busy and walking helps 🙏🏼

[Karen1954 in reply to Tryingtolive62]

Hi!!! I just read your post and I too have had pelvic pain for 10 years and did ketamine treatment five times for excruciating pain and depression but it didn’t work!!!! I really hope it works for u!!! I’d love to hear from u to see how it went!!!! I hope we can talk soon!!!

[Tryingtolive62 in reply to Karen1954]

Hi it seems to be getting better ❤️‍🩹 I’m praying 🙏🏼 because I don’t know how long I can do this. I don’t know how anyone can live with this pain and mine is from stress and and other factors. It’s horrific I have no life. I hope you feel better 💐

[Tryingtolive62 in reply to Tryingtolive62]

And I take 3 mg of morphine 2times daily if I need it I do need the one in the morning

[Karen1954 in reply to Tryingtolive62]

I hear u about living with the pain!!! I’m feeling hopeless at this point!!! I have tried every modality possible!!!! I hurt ALL THE TIME!!!! I never get a break! I’m going to ask my doctor about taking the nortryptoline and amyltryptoline together!!! I already take pregabalin!!! I don’t know what else to do!!!! Thank u for all of your help!!! I’m glad u r feeling better!!! I’m hoping I will too!!! Keep me posted!!! Take care!!!

[Tryingtolive62 in reply to Karen1954]

I’m hopeless to thinking I have to live the rest of my life with this condition I already don’t have a life anymore I can’t wear clothes I love it’s comfortable clothes always have skin sensitivity also and the nerve pain with the pelvic floor disorder I hope you feel better soon 💐

[Karen1954 in reply to Tryingtolive62]

I agree!!! I want my life back!!! My doctors think my hysterectomy and colostomy made me worse and I do too!!! I wish I’d NEVER done those and the pudendal latency test as that made my internal sphincter 100% worse!!! All my doctors said do it so I did and my sphincter went CRAZY!!! So now I wake up to POUNDING in my rectum!!!!!! It is EXCRUCIATING!!!!!! I can’t wear regular clothes anymore either!!! I have to wear loose comfortable clothes all the time as my skin hurts throughout my entire pelvic floor!!!!! It’s AWFUL!!!! If u ever feel like talking I hope u know I will be here for u!!! Please take care!!!

[Tryingtolive62 in reply to Karen1954]

I’m sorry that you’re going through this 🫶🏻It’s been 5 years ! It’s horrific I have the same pain you do I was prescribed 3mg morphine finally but after awhile and it never took the pain away completely and I started smoking marijuana it helps I have so much to tell you about how I got this way there’s a lot going on with me I will be back to explain everything it’s hard texting every thing out and I want to start from the beginning I pray you feel better 💐 I’m Debra I’m 62 and been crippled with pain for 5 years my life has halted yes let’s keep in touch

[Tryingtolive62 in reply to Karen1954]

Reading your comment again yes I have everything you have this is crazy I don’t understand and reading all the comments there’s so many of us I started crying I’m so sorry I know exactly what you’re saying I’m in Massachusetts I have some good doctors again I’ll be back to chat soon thanks for reaching out it feels good to talk about this with someone who knows exactly how I feel Feel better 💐

[PainNoPain in reply to Karen1954]

Hey - shout on here when you’re in pain….tell all your loveds around how you feel..get it out of your system…I kept this inside for ages because I’m a male and was too scared or embarrassed to speak up about where the pain was etc…it’s horrible and it eats you up inside from the minute you wake up to second you go to bed…something will come up and you will be pain free….there is hope ……lots of love from everyone

[Karen1954 in reply to PainNoPain]

U said it all!!! That’s how I feel everyday!!! It IS from the time I get up until the time I go to bed!!!! I have told my loved ones how I feel but I don’t think they understand it because they don’t have it!!!! The pain is worse than anyone thinks!!! Oh it’s just pelvic pain or rectal pain!!!! Well u try having it and tell me how u feel!!!!! I’m totally with u and u can talk to me anytime u want!!! I’m here for u!!!! Please take care!!!!!!

[Aprilbaby24]

Nortriptyline did nothing for me, along side Duluxetine. Doc told me to stop taking it if it wasn’t working. I now take Duloxetine and Oxybutynin with 30mg codine. I have an epidural in 2 weeks, first one and I’m praying it helps!!! I’ve been off work for 12 months!!! Good luck x

[PainNoPain in reply to Aprilbaby24]

I hope it all goes well…all these pains are horrible! All we want to do is live a normal life and do some exercise….

[VFR1200]

I am on Nortryptaline it works for me, but sitting conveniently is out and has been for 4,5 years, I am not normally in pain and can go months without a flare up. Some things like running and cycling are not possible, but once you understand your injury and what to avoid then you can get on with things. . I have an excellent specialist Dr Gareth Greenslade at the Bristol Pain Clinic. He is one the worlds top experts in this field. I would contact him for his opinion.

[PainNoPain in reply to VFR1200]

Amazing - thank you. What dosage are you on nortriptyline? How long did it take to you too work? I know everyone is different. I had my pain under control done some stretches and exercises advised by pelvic specialist for a couple of weeks and my symptoms are now worse….

[PainNoPain in reply to VFR1200]

Do you do any exercises at all? Example stretching or strengthening exercises?

[PainNoPain in reply to VFR1200]

What dosage are you on for notriptyline and how long did you start feeling a difference?

[VFR1200 in reply to PainNoPain]

50mg started on 30ml took a while to see what works only take at night

[PainNoPain in reply to VFR1200]

thank you, I’m going to up to 70mg and will wait…hopefully I will start seeing some improvement in the pain..I know it will take time , it took time when I started at 10mg…I know I’ll be on this for a while…thank you all for your support on this chat. I always hear if someone is feeling low and wants to message.

[VFR1200]

I take 50ml at night, I stretch regularly especially before exercise. You should avoid traditional pelvic floor strengthening exercises this will make your symptoms worse. The Nortryptaline took 3-4 months to see benefits, and 6-12 to get the right dose. This type of injury is a long journey, you have to find what works for you.

[PainNoPain in reply to VFR1200]

Ok - that’s great thank you

[Tryingtolive62 in reply to VFR1200]

Hi what kind of exercises do you do. I wonder if I’m doing the right thing. Or hurting myself. I've been in more pain lately. Thanks

[pebbless]

I tried citilipram 20mg antidepressants and my pain went away. I went from not wanting to live, unbearable pain and now I have my life back I do get bad days but my mind is better to control

Laparoscopy is booked in a few weeks also

For all suffering in pain, my heart goes out to you all and wish you a speedy recovery. Never give up, even doctors get diagnoses wrong.

[pebbless in reply to pebbless]

Nortyrilline worked for a year I was on 70mg and ptegablin together... Now just citilipram xxx

[Summer20244 in reply to pebbless]

Does the Celapram work on the pain

I am on nortriplian 50mg can that be taken with it or would I need to come off first as I still having referred pain

[PainNoPain]

I’ve read online gabepentin and pregablin work well with nortriptyline…I just need something to take the edge of in the day….did you you first trail out nortripyline by itself and then doctor suggest Lyrica?