Please Help, Pain is unbearable.
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Author:  rmaxted [ Sat Sep 27, 2014 11:43 am ]
Post subject:  Please Help, Pain is unbearable.

Hello everyone, my name is Rob. I am a 20 year old man and have been suffering with intense pain over the past 3-4 years. Although in the past year the pain has reached another level. Yesterday i was in town with my mum when i get this strange feeling in my mind (very hard to explain) sort of like a detached feeling or unclearness (like i'm drifting away from reality), anyway i knew to expect the prostate pain. i got in a taxi and went home. When i was home about 15 mins after being home (5min taxi ride) i experienced the pain once again. The best way i can describe the pain is like someone has put a blowtorch inside my penis all the way up into my bladder and everything in between. The pain on a scale of 1-10 (1 being nothing 10 being the worst pain ever) i was on 10+. My brother who was in bed sleeping at the time heard me shouting in distress, he came down to me and gave me some codeine prescribed to me by the doctor (30mg) to which i had three tablets. He tried to help me calm my breathing as the pain is that bad that i panic very badly. As the pain got even worse he called my mum and asked her to come home, she then took me to the hospital. When i arrived they gave me morphine and inspected my testicles as my whole area from my belly button down to my testicles was hurting. He examined a lump on my right testicle which is a sist. But i only found this lump a few weeks ago so this cant be the cause of my pain.

I had a cystoscopy a month ago and the doctor said that everything looked fine, i am due to have a colonoscopy soon as the urine specialist thinks the pain is caused by my bowels. I spoke to the bowel specialist and he thinks its still my prostate. Its a horrible situation as they are both contradicting each other. Anyway back to yesterday my mum heard one of the doctors mention that it could be this prostatitous so i searched for the symptoms and they all match! i am so grateful for this website as i felt so lost. I have been gradually getting more and more down over the years and i now just don't know what to do. I hardly eat anything any more as that seems to cause the pain even more. I apologise for the way i have typed and possibly forgot to mention some things but its hard to write every incident in the past years. Also does anyone get discharge when going for a number two?? Its like the colour of sperm but a bit different and very elastic/stretchy. I don't know why this is happening but the doctors really aren't helping me.

Yours Faithfully,

Author:  UKSufferer [ Sat Sep 27, 2014 2:41 pm ]
Post subject:  Re: Please Help, Pain is unbearable.

It might be worth getting assessed by a Physical Therapist. They will be able to spot weakened or tightened muscle which could be irritating your pelvic floor area. Not saying it's a definite answer but worth ruling out.
If you have been in pain for a long time, your pelvic muscles could be permanently contracted in a safe guarding mode. Over time they can become tighter and tighter. Squeeze your fist for a minute for an example, aches doesn't it?

Author:  rmaxted [ Sat Sep 27, 2014 3:50 pm ]
Post subject:  Re: Please Help, Pain is unbearable.

Thankyou very much for the advice, how do i go about finding a physical therapist? Should i seek one myself or go to my GP and ask for a refferal? I did the clenching of the fist and i understand the concept.
Thankyou again, any more advice would be greatly appreciated.

Kind regards,
Robert Maxted

Author:  UKSufferer [ Sat Sep 27, 2014 7:40 pm ]
Post subject:  Re: Please Help, Pain is unbearable.

Only way I could convince my doctors to refer me for PT was due to back pain. If you can afford it, I'd specifically look for one that deals with Pelvic floor dysfunction. Alternatively, you could purchase Healing Pelvic Pain by Amy Stein. It's around £7/$10, could give it your full attention for a month and see how you get on.

The testimonials on here are quite good, try a few of them out too. When I was at my worst, I thought about throwing myself down the stairs, just so so someone would take me seriously. I felt so hopeless, no one I knew understood the pain etc. Things have got a lot better for me, this forum helped. I hope it helps you too.

Author:  cadoresg [ Sun Sep 28, 2014 6:54 am ]
Post subject:  Re: Please Help, Pain is unbearable.

Hi Robert,

really sorry to hear of the pain you're in.
Its not been much different for me over the past four years either.
The one difference is that I found a pain medication that works for me.

I agree, a PT might help, but in the meantime, you need help to deal with the pain.
When everything started for me ... I thought I was going to go out of my mind.
Between the pain in my testicles and prostate area and the shooting pains up and down my penis and legs,
I had no energy or focus.

Thankfully, I had a GP who listened to me ....
I did have to go several times - one week three times - to finally convince him that the level of pain was a serious impediment to daily life.
I'm on tramadol XL (200mg - 300mg) - it works great for me (doesn't relieve all the pain but most so I can function).
I would suggest that you need to get some better pain control and then you can try PT or anything else.

For me, sitting on a heating pad - in the car, in the house, at work - wherever - helps a lot.
Hot baths and soaks worked for me as well.

It could very well be that you've got CPPS, but I suspect from what you write that if you don't get on top of the pain,
nothing else is going to matter and its beginning to really wear you down.

Hang in.

Author:  rmaxted [ Sun Sep 28, 2014 7:18 am ]
Post subject:  Re: Please Help, Pain is unbearable.

Yes i woke up this morning at 6am in absolute agony (the burning sensation throughout the whole area). I then had to get to the toilet asap, this website has already begun to help me and i cant thank you enough. I felt so alone and nobody understood how bad the pain is, i know this sounds aweful but i was really contemplating suicide, as the pain was unbearable. Every time I reach that amount of unbearable pain i just want it to be over. I've come to realise that im not alone and there are people who suffer just like me. I will deffinately find the treatment like you advised. Thankyou so much. Oh and after i woke up at 6 i had numerous pain relief and went back to bed and tried to calm down. Iv only just woke up again and my lower back about a fist width above my coxics is really hurting, like if iv slept with a bowling ball under my back. Can i ask if you get discharge when going for a number 2? As i haven't found anything about it??

Thankyou once again,
Kind regards,

Author:  Shaky [ Sun Sep 28, 2014 10:24 am ]
Post subject:  Re: Please Help, Pain is unbearable.

Discharge sound like congested prostate.... Did you ever do a semen culture to check for pus cell?

Author:  rmaxted [ Sun Sep 28, 2014 8:31 pm ]
Post subject:  Re: Please Help, Pain is unbearable.

Dear C,

First off, thankyou for the help. Yes the pain is horrific, the tablets I'm currently on really don't work, i have asked for something stronger but my dr said that the codeine should be strong enough. Honestly you are the only people who understand how bad it is. I will make sure i persist as i can't deal with the pain any longer. I also feel so drained of my energy all the time, i have also been getting really down lately, i try my hardest to keep smiling but its just tough, do you feel like this? And yeah i do want to get fixed as im sure you and all of us do but the main thing is the pain like you say. I have read many people saying that ejaculating 2-3 times a week helps?? Only thing is i havent had sex in about 3-4 months and when i did the pain was terrible. So i tend to not have sex at all any more.
Thankyou again C much appreciated,
Kind regards,

Dear shaky,

Iv never heard of a semen culture to check for pus cells before, how do i go about getting this done? I have a sist on my testicle if that relates? Have you had this problem to?
thankyou for the info shakey,
Kind regards,

Author:  Shaky [ Sun Sep 28, 2014 8:42 pm ]
Post subject:  Re: Please Help, Pain is unbearable.

Ya well it make sence that you have a cyst many dr believ cyst to be infection. Does type infection are really hard to control. Did you ever got std?

Author:  rmaxted [ Wed Oct 01, 2014 11:09 am ]
Post subject:  Re: Please Help, Pain is unbearable.

Yeah i had chlamydia a few years ago but got treated for it with 6 tabs at once in the clinic. Iv been tested many times since then as they kept thinking it was an std but each time my results come back negative. I had the full test each time to (urine, swab, bloods etc).?

Author:  David88 [ Fri Oct 03, 2014 5:47 pm ]
Post subject:  Re: Please Help, Pain is unbearable.

Do you live in the UK Robert?

Author:  rmaxted [ Thu Jan 08, 2015 8:22 pm ]
Post subject:  Re: Please Help, Pain is unbearable.

Dear david 88.

Yes i do live in the UK. Can I ask why?

Also everyone I have not been able to access this site as ive only just got my internet re-connected. Since which i was admitted to hospital for ten days. Got absolutely nowhere and told that "there is nothing they can do". They put me on a medication called ciallis (for erectile dysfunction). My doctor mentioned that in some cases this has helped other patients. I found that it was helping a lot and made my pain less frequent. Although lately the pain has got worse again. Per day to treat the pain I am on ciallis, tramadol 50mg, gabapentin 100mg and buscopan as i get a lot of discomfort in my lower stomach also. I take these tablets in the morning and night. Thank you all for the help you have suggested to me i do really appreciate it. I know this illness is evil and if it wasn't for all of you fellow sufferers i may have done something stupid. I am a long long way away from living a normal life but i will not give in. I prey that in time i am not in pain every day of my life and i prey that someone finds/creates a cure that acctualy works for all of us.

Kindest regards and best wishes,

"Remember, you are not alone"

Author:  cadoresg [ Sat Jan 10, 2015 10:19 am ]
Post subject:  Re: Please Help, Pain is unbearable.

Hi Rob

glad that you've returned.
Its not what you want to hear but at least the Dr's are being honest ... "there is nothing they can do."
This condition is not well understood or curable or easy dealt with
and every sufferer has a different presentation and a different path to walk in finding what helps.

It's good that your Dr. is at least open to trying things and its great that the cialis is helping to reduce pain and its frequency.
I have found the same thing - not sure if has to do with increasing blood circulation or what, but it does help some of us.
Its also good that you've found some relief with pain meds - as I said the tramadol helps me with lowering the pain level but doesn't relieve it completely.

You've got the right attitude - don't give in. Now that you're getting a measure of relief,
hopefully you'll get the energy back to try and put your life back on track - it will return to 'near normal'.
I'm now beginning my fifth year of continuous symptoms and pain - my life these days is 'near normal' -
meaning almost what it was before all this started happening.
But its taken time and patience and making some tough decisions and changes around health, lifestyle and work.

Here's hoping that 2015 is better for you and all of us.

Author:  rmaxted [ Sat Jan 10, 2015 2:31 pm ]
Post subject:  Re: Please Help, Pain is unbearable.

Hi C,

Im glad that your life has returned to near normal. I have started to forget what its like not waking up in either fear of being in pain or being in pain itself. I had one of the worst flare ups of my life last night and i just feel lost. I feel like such a burden to my family (my mum and brother). I decided not to go to the hospital last night as its the same thing every time. Arrive at the hospital, wait in agony surrounded by people for at least an hour (that's if i'm lucky). see the doctor, he gives me an injection of morphine (again if im lucky and the doctor has a little passion for helping people). Then regain a bit of consciousness/awareness then go home. I didn't see the point in wasting anyone's time, I to am on my fifth/sixth year of suffering and it has completely consumed my life. I cant socialise, I struggle to keep my job as when i get a flare up nobody understands the pain we are in. I had my girlfriend round at my house yesterday as we had planned for a while to watch a few movies together etc but as i said i got a flare up and she decided to leave. I am fed up and sick of this, ive began to form these thoughts e.g "what's the point of living" "the pain isn't worth this pathetic existence i call life" "im ruining my family's lives" etc. I will try my hardest to carry on i just dont know how long i can do it for.

Thankyou for the message it means a lot C.

That also applies to everyone who has messaged me and given me tips and ideas. Just having all you guys to talk to has got me through a lot of rough timnes but it only helps so far as you all know.

Kind Regards and best wishes to all of you.

R maxted.

Author:  cadoresg [ Sat Jan 10, 2015 10:38 pm ]
Post subject:  Re: Please Help, Pain is unbearable.

Hi Rob

Sorry to hear about yesterday's flare up.
I still have my days of difficulty and I still do live each day in pain too.
When I was having the hardest time, I also had similar thoughts ... I felt like I was failing my wife, my work , myself, our kids.
There was no magic bullet or quick fix for me .... it took months on the pain meds and the heating pad and the therapy and physio to start getting on top of it.
I won't lie ... it still gets the best of me many days but my life is more than this condition.

Perhaps if your GP is open, you need to talk with him/her about getting upping your tramadol or doubling the dose for flareups.
Have you tried hot baths and a heating pad? They've been a life saver to me.

This condition really does require a multi-modal approach ...
it means meds (pain and other to deal with symptoms)
it means physiotherapy/exercise even though it hurts (do it, hurts sometimes during but better control after)
it means investigating prostate massages or trigger point release (tried but did help me)
it means counseling and talking with a professional (it really does help)
it might mean dietary changes or supplements (I didn't find anything that made a substantive difference to me but for others its different)
it might mean hot baths and heating pads (life saver for me)
it might mean no orgasms for a while or regular orgasms depending upon whether it relieves or aggrevates (regular is important, even with post-ejac pain)
it might mean trying everything and anything to find out what helps.

You will find what works for you.
Don't despair. It really really really sucks but there is real hope.

Author:  rmaxted [ Mon Jan 12, 2015 10:22 am ]
Post subject:  Re: Please Help, Pain is unbearable.

Dear C,

That info has been a life saver (literally) I was in a very dark place yesterday and my brother called these people called the crisis team. I went to this institute and talked out all of my options with a psychiatrist. They helped me but it hasn't changed anything immediately, although it did give me hope. She has got me in touch with a highly recommend doctor (so I'm told). I'm sorry to hear the stress you must be under having children and wife. As I know what it's like to feel like such a burden. Yeah hot baths really do help but not every time. I have quite often been woken by sperming my underwear. It is horrifically painful and I get horrible post orgasm pain. That is why I can't have sex with my partner. But that is the least of my worries. But I can't control what happens when I sleep and like this morning I woke up to my penis sperming and causing horrendous pain. I struggle with exercise as it's really painful I'm at a very bad stage of my life right now and things are just getting worse. Until I got an inkling of hope yesterday. What kind of physio should I ask my doctor for? Also when you say this condition isn't your life, can I ask how you have the strength to feel this way as this illness has ruined everything, I lost my job, my friends, my education, my dreams are loooong gone down the toilet and I'm worried that I'll soon loose my partner and family. I'm a 20 year old man who can't do anything more than a 9 year old on his death bed. It just gets me down C. As you are more than aware of how evil this condition is. I have been getting some extremely "real" nightmares and they happen every night. My life routine is :wake in pain, go to the loo in pain, sit in pain, see my girlfriend (if I'm lucky to not be like a zombie) in pain and then when it comes to sleep I am terrified of actually sleeping as I know I'll have nightmares and probably wake up to spunking in agony... then repeat.

Thank you for all the help C and I hope you stay as strong as you are.

Kindest regards and the best wishes possible,

Author:  cadoresg [ Tue Jan 13, 2015 9:27 am ]
Post subject:  Re: Please Help, Pain is unbearable.

Hi Rob,

You should at least know my name - its Carl.
I've had recurring bouts of this "prostatitis", now CPPS, since my late teenage years.
It wasn't til I hit my 40's that I began to have the kind of pain and difficult that you're now experiencing.
Now its heading into 5 years without letting up.

So, one of the things that has helped me .... is to keep things in perspective.
This is not meant lightly or flippantly. Its really hard when as you say
... you sit in pain, you stand in pain, you go to bed in pain and you wake up in pain ... repeat.
But its good that you've made contact with Crisis Team and you've got some followup with a highly recommended Dr.
Those are important - huge in fact. Its a beginning.

I'm not a DR or a urologist or any of those things but I speak as someone's who been poked, prodded,
and examined and re-examined and told it was all in my head, dismissed by 'professionals' or placated and told to go away.
These are what I have found to help me
to keep this conditions from ruining my life or taking over my life or becoming my whole life.

Book - Headache in the Pelvis - Paradoxical Relaxation (its about reducing stress without actually trying to solve the problem) - worth reading and doing.
Meditation & Prayer (keeping a journal of thoughts and feelings, as well as a daily log of pain levels, and symptoms)
Creating and Laughing - I find time every day (not matter the level of pain or busy-ness to do something creative
and I love 'juvenile' comedy (that's what my wife calls it) so I will find time to watch or listen to comedy and laugh every day - even for 15 minutes)
Walk - if you can exercise or work out .... walk - 20-30 minutes a day pays big benefits.
Cuddle - again matter what, I find time to cuddle with my wife and talk (not about me and my condition but about us or anything else)
Make Love - I too have post-ejac pain and this bout has brought ED too. But rather than be afraid of the pain or what may or may not happen,
we make love anyway. It wonderful - for the body and the soul and the mind and the relationship.
Perhaps, if you did, the waking up 'sperming' wouldn't happen as often or at all.
This is one of the paradoxes of this condition ... if I don't ejac then the pain builds, if I do, there pain too.
You need to find out what frequency helps for you - for me its every two days or so.
if you can't make love, masturbate - take some control of when it happens so you can choose.
Physio - its stretching of the pelvic floor muscles. When this first came on me, my Dr said to do Kegel exercises. Wrong! It only aggrevated and irritated.
There are people trained to do this particular work.
Red Wine - I have one glass (only one) each night before bed. It helps to keep me from going all night and its really helps.

One other thing - I'm on Flomax ... its really helped me with spasms and its lessened the post-ejac pain. Perhaps another avenue to pursue?

It might not seem so right now but
You're on the road to making a difference ...
talk with the counselor and establish a good rapport with your DR to be open and try a various things,
and you embrace your partner and accept that things are going to be rough perhaps for a while yet,
but don't let it rob you of the good things in life.

This is how I broke the 'nightmare' scenario for me .... its still shows its ugly head some days .... but its not the story of my life.
The job, the education, the dreams and friends will return in time for you too.
Right now ... focus your energies on the battle right in front you.
You're young and resilient and will overcome this - you'll come out stronger and more whole.


Author:  David88 [ Thu Jan 15, 2015 7:00 pm ]
Post subject:  Re: Please Help, Pain is unbearable.

Hi Rob,

If you PM me your phone number I will happily talk to you about my recovery and to see if I can help.

Do not despair.

Author:  rmaxted [ Mon Jan 19, 2015 1:59 pm ]
Post subject:  Re: Please Help, Pain is unbearable.

Dear Carl, it's nice to finally know your name as you have given me such amazing advice. I can't thank you enough. I have recently had my gabapentin upped and it seems to be just about manageable now. You and everyone who has helped me truly are my heroes and that goes along with my family. I am going to win this battle and lead a "normal" (pain free life). I remember as a child I always wanted to be a royal marine. I even did my PRMC at Lympstone, I really was giving it my all. Then the pain started coming back, I tried to hide it as I knew it would instantly result in medical discharge. But I also knew that it was inevitably going to come out. Also if I was able to hide it for however long I knew it wasn't fair to put my fellow "dream marines" in what could be a life threatening situation purely because of my incompetence. So that dream has sunk and it states on their medical declaration that "if ever had or still has chronic or acute prostatitis it results in permanent refusal of entry. So yeah that was a blow, especially as I was soo dedicated. But I have gotten over it. I have also realised that I do have to live with it and like hell am I going to let it control my entire life. You guys have been soo helpful and I honestly will make it up to you for your trouble someday. I have used much of your advice and knowledge in the past and will continue to do so. I am beginning to accept the way things are and take each day as it comes. I try not to worry anymore ("what if I go up town and I get a flare up" - "what if I'm having a meal with my girlfriend and I get a flare up" etc) I now just think "hey if it's gonna happen it's gonna happen. There isn't anything I can do about it except deal with it and take it as it comes. The crisis team have been good so far and are really helping me and my family deal with this. And I'm soo sorry that you have gone through all of this too like so many of you fellow prostate sufferers. And It really is soul destroying when you get the whole "it's in your head" schpeal. But they aren't suffering on a daily basis like us and can't even begin to comprehend the pain we are all in, not only physically but the strain we put on ourselves mentally too. Also the amount we need to rely on out closest loved ones. I don't honestly think I would be here right now if it was for my family. Also Carl you really did save my bacon as you do understand what I was going through so thank you! And David you to have helped me a great deal. I'm not quite sure how I can contact you privately maybe send me one and it should come through to my email. I appreciate EVERYTHING! More than you think or know. I am thinking of setting up a charity for people in our situation (group meets for people with prostatitis, days out with people who understand and are also suffering, to help their family's and their mental well being) just having you all on here is somewhere I can escape to and talk to you all who really DO understand. Anyway I'm currently a little spaced out from my medication and I am terribly sorry if this doesn't make sense.

Stay strong my brothers! As I for sure will too!

Yours faithfully, sincerely, and the kindest regards,

Rob Maxted.

Author:  rmaxted [ Fri Jan 30, 2015 11:57 pm ]
Post subject:  Re: Please Help, Pain is unbearable.

Dear @david88,

I would love to discuss a possible recovery and hear the information you are providing. My condition has got worse and worse, I am newly on Anti-depressants and still not giving up hope. Although the "light of hope" is dim and starting to flicker away. But as long as there is still that speck of light i will continue to do everything i can to get better or at least not live every day in pain.

Please message me on here as soon as you can,

Kind Regards, Rob.

Dear Carl,

I have ordered the book "a headache in the pelvis" and just eagerly awaiting arrival. Thankyou for the advice it is always highly appreciated.

Yours faithfully, Rob.

Thankyou everyone for all the advice and info i cant thank all of you enough!

Author:  Steve [ Wed Feb 04, 2015 2:06 pm ]
Post subject:  Re: Please Help, Pain is unbearable.

Hi Rob,
If you can, try and go see Bill Taylor physio in Edinburgh. He specialises in pelvic pain and really helped me. If it's not bacterial then it is very probably muscular. Did you strain the area, doing weights. Jumping off anything? As your pain is all around it could be trapped nerves. It's worth a try rather than pumping yourself full of drugs.
Hope it helps

Author:  rmaxted [ Wed Feb 11, 2015 6:22 pm ]
Post subject:  Re: Please Help, Pain is unbearable.

Hi Steve,

I have done some research on Bill Taylor and i think i'm going to get in touch with him and see if it helps. Thank you so much for the info as i'm rapidly running out of options. Yeah when i was a child about 10-11 I had a groin strain, I couldnt walk for about a week at least and when i could i had to use crutches for a little while. That may have been the problem? Anyway thats definitely something to ask about when i go.
Thanks again,
Kind Regards,

Hi all,
I went to the hospital today for another appointment with my urologist, I still don't have a clear picture of whats going on as i don't think they do either. I have been told so many different things from different people. In so many words he basically said "the odd's of me getting better are slim. The reason for this is because they don't know enough about it and they don't know whats caused it." I appreciate the honesty but now what.. I Don't know what to do or what to expect. I'm Still very ill and pain has become my shadow.. But the silver lining to my (bag of s**t) cloud is the fact that you guys know more about getting better (or at least living a fairly normal life) than they do. So thank you once again everyone on here you have really helped me!! I am going to speak with Bill Taylor about possible treatment or at least helping me live a pointful (not just an existence) life again. I Hope to hear of any extra options if these ones don't go to plan.
Thanks once again Everyone,
Yours faithfully,

P.S - My urologist also said to masturbate daily, I am not sure if this is a good idea as i get quite bad post ejaculation pain. What are your thoughts? Does it work?

Author:  cadoresg [ Thu Feb 12, 2015 9:15 pm ]
Post subject:  Re: Please Help, Pain is unbearable.

Hi Rob,

Dealing with the medical system is a bit of an up and down kind of thing ...
you go for tests, appointments, etc and you hope you'll get an answer, some answer, some intervention, some new treatment
that will address your condition and put you on a new path, a better path, a path with less pain, less trouble.
You leave down because no one has answers to this condition.

My last appointment with a new GP was sitting in front of her computer going over all the internet medical evidence ....
.... all stuff I've known and discovered over the past 4+ years.
It was probably more enlightening for her than me.

Remember - 'getting back to normal or near normal' can be long process.
In time, as you try things (often for at least a month before making the decision about whether it helps or no)
you can find things that little by little and combined with other treatments makes a significant change.
Do not despair.

As for your urologist's advice re. daily masturbation - you need to try and find out if its too much or just right or makes no difference.
It takes time to really see patterns. So keep a log of symptoms, pain levels, orgasm, and see if you can figure it out.
It may hurt post-ejac but may help over the course of the day. Short term pain for longer term gain.
Sounds odd or funny, but its what I did for a long time.

You live in your body .... listen to it and let it lead you to what really makes a difference.
Prayers for relief for you and all who suffer.

Author:  Steve [ Sun Feb 22, 2015 6:06 pm ]
Post subject:  Re: Please Help, Pain is unbearable.

Hi Rob,

If it's muscular iI would leave the daily masturbation out as you are just straining more . You need to go and see if you have trigger points that need released and also get your alignment checked pelvis etc. Also do some daily stretching, I found swimming really helped me keep the area loose.

Don't listen to that urologist I've had a couple say to me you'll never get better but then I also had a good urologist that said in his experience in the majority of cases it just goes away on its own.

Try and keep positive which I know is hard but with the right help you should see improvement.
All the best

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