Health Organization for Pudendal Education

I feel led to say this and I hope its okay.

Suicide is something many with chronic illness thinks about. I am guilty of this thought as well,and Im open about it with family. They help me tremendously.
I have gotten so sick insuch a short time and have such a hard time coping because I worsen and still fight for right treatment,and correct diagnosis.
Im still in the searching process like so many others.
Ive been thinking about this this though...

Whoever is reading this,I hope that you will find something that makes you feel wonderful again,or even able to at least enjoy things in life again. I hope that you will have a happy life again. I know I hope that for myself too. Its my family that believe I will have that one day for sure. Thank God for them.

My question for you is this.... If you died,no matter how... a car accident,of old age,an illness,etc...
Do YOU know where you would go? Heaven, or Hell?
My heart is burdened because so many commit suicide for releif of their symptoms and pain.
Yet-If you have never asked Jesus to Save you.... death wont give you releif. Hell would be a much worse torment no one would ever want.
If you have never understood that we are all born a sinner... Jesus died on the cross for YOU and ME. There is a way to Heaven. You should repent of your sins,ask for forgiveness,and ask Jesus to come in your heart and save you, He will.

My symptoms progress often. I often ask God, why me? It is a reason I do not understand,maybe I never will. I want to live a normal healthy life with my husband,or at least semi normal.
But at least I know this.
Whenever I do go, I know i will be in Heaven, pain free, because Jesus is my Savior.
Im not pushing anything on anyone... I just want you to ask yourself this.
Im not gonna lie, I have had suicidal thoughts too. I am a Christian,I am human, and I need help and I pray,I will get physical help.
But I wanted to share this with you... If you have questiona about this, feel free to PM me.

Dear Lindsey, Thank you for sharing this, which is clearly from your heart. I know from other areas of the forum you are suffering dreadfully at the moment with your physical symptoms. Knowing where your eternal home will be is one thing, but at the moment you are struggling here on earth and perhaps I can go with my heart and, for what it may be worth, offer the following.

I take my spiritual nourishment from various sources, including the bible. I also love many hymns and one of my favourites is ‘Dear Lord and Father of Mankind’, especially the last verse which I have found deeply comforting and reassuring during stressful periods of my life.

Breathe through the heats of our desire
Thy coolness and Thy balm;
Let sense be dumb, let flesh retire;
Speak through the earthquake, wind and fire
O still, small voice of calm,
O still, small voice of calm.

(based on 1 Kings 19, 11-13)

At the moment you might imagine your earthquake, wind and fire to be your frantic and relentless efforts to try and find answers to your plight. This may be preventing you from hearing that ‘still, small voice of calm’ which might lead you on the right path. Sometimes the answer is not where we think! Keep strong and good luck! xx

Susanjane wrote:Dear Lindsey, Thank you for sharing this, which is clearly from your heart. I know from other areas of the forum you are suffering dreadfully at the moment with your physical symptoms. Knowing where your eternal home will be is one thing, but at the moment you are struggling here on earth and perhaps I can go with my heart and, for what it may be worth, offer the following.

I take my spiritual nourishment from various sources, including the bible. I also love many hymns and one of my favourites is ‘Dear Lord and Father of Mankind’, especially the last verse which I have found deeply comforting and reassuring during stressful periods of my life.

Breathe through the heats of our desire
Thy coolness and Thy balm;
Let sense be dumb, let flesh retire;
Speak through the earthquake, wind and fire
O still, small voice of calm,
O still, small voice of calm.

(based on 1 Kings 19, 11-13)

At the moment you might imagine your earthquake, wind and fire to be your frantic and relentless efforts to try and find answers to your plight. This may be preventing you from hearing that ‘still, small voice of calm’ which might lead you on the right path. Sometimes the answer is not where we think! Keep strong and good luck! xx

Thank you, SusanJane for your kind words. This was from my heart. I am truly having a very difficult time. Ive been emotional for 5 months since Ive been sick,but my newest symptom,being pgad is the one that actually is pushing me ovee the edge. I know I have a home in Heaven. I have grown up hearing Gods word,and listening to Christian music of all kinds including old hymns my whole life. I wish I could be stronger than I am. Because I know I am His child. But I am so broken and in torment idk what to do. I have a wonderful family,and a loving husband and our 5 year anniversary is this week. He is the love of my life. My heart is hurting so. I just wanted to share the plan of salvation for anyone,because if you are a born again believer,this life is the closest to hell you will ever be. I hope to find releif while on this earth. But at least I know my eternal home will be pain free.

LindseyD, you seem more and more distressed and it is totally understandable. If I understand correctly your pelvic pain started with a UTI. Was it the only problem?
Some of us have recovered completely from similar situations. We also had fairly unremarkable incidents. In many cases we were experiencing stress at the time or had had an emotional upset at the onset of our symptoms.
If your story mimics ours, you may want to have a look at my story, susanjane's, or bunny's success stories. Or read Sarajoy's recent posts.
I am not diagnosing you but you could at least consider the possibility before thinking of more invasive medical procedures.

This probably should be posted elsewhere on the forum, but following on from Ezer's comment regarding ‘puny’ incidents:

Every day our bodies suffer minor tissue damage of one kind or another, which our bodies then repair and regenerate perfectly adequately. In the case of infection, we receive antibiotics and it usually clears up. Our bodies are also capable of recovering completely from much worse tissue damage, e.g. surgery or severe injury or accident. From a purely logical viewpoint then, it doesn’t make sense that minor tissue damage can end up causing so much pain and suffering. Perhaps it is the ‘trigger’ for the chronic pain process, rather than the ‘cause’.

Unless there is a very obvious and dramatic initiating incident, such as waking up from surgery in severe pain or suffering a significant accident or injury, it is always worth at least considering the wider picture of one’s life (taking a holistic view) to see if there are any other factors involved which may be implicated in the continuing pain, or even be the origin of it, i.e. thinking psychological rather than physical. This concept pretty much flies in the face of conventional 'cause and effect' Western medicine and is usually resisted by most of us - at least initially - but understanding and accepting it as a possibility is a start at least.

The mechanism of pain is indeed a complex arena and unfortunately there is no ‘one size fits all’ solution nor a quick fix. It is a very individual thing, just as we are all individuals. Some good straightforward information about pain can be found here: http://www.bboyscience.com/pain/

Don’t give up hope Lindsey – it can be done and God-willing you will find your own way to heal. SJ

ezer wrote:LindseyD, you seem more and more distressed and it is totally understandable. If I understand correctly your pelvic pain started with a UTI. Was it the only problem?
Some of us have recovered completely from similar situations. We also had fairly unremarkable incidents. In many cases we were experiencing stress at the time or had had an emotional upset at the onset of our symptoms.
If your story mimics ours, you may want to have a look at my story, susanjane's, or bunny's success stories. Or read Sarajoy's recent posts.
I am not diagnosing you but you could at least consider the possibility before thinking of more invasive medical procedures.

Thank you, Ezer. At this point idk where to start or turn,or believe. Yes, I developed a uti which started it all. And I was in the middle of a very stressful time in my life as well. So I had the bladder pain,and a.very small imfection,which.turned tona bad infection in 3 days time. A month later,I had vaginally tingling. 2 months.after that,more pain.spread to my butt/sacrum,hip,thighnd ankle. Within the last month i developed pgad,leg pain.spread to my calves,and im experiencing some dizzyness. However, over 2 years ago,I had very random pelvic paim that didnt last very long,but I just thouhjy it was a pulled muscle or something cause it went away. I just domt knkw.what to think but ive been very suicidal lately and so.afraid of medicine making pgad worse.

Lindsey, I understand because there was a time I didn't want to live but it only makes sense to at least try all of your options. Once I figured out a diagnosis and had a plan of things to try I had more optimism and hope.

Many people with PN have more than one thing going on and I don't really think a UTI in and of itself would be the sole cause of PN because many people get UTI's without getting PN. I think it is more likely one of the triggers, sort of like cold air can trigger asthma in some people. The underlying lung/airway disease is the cause of the asthma but the cold air just triggers it. Some people have asthma attacks associated with emotions so I can see how maybe some people could have PN triggered by stress or emotions. Dr. Bautrant has seen PN run in families which suggests there could be a genetic component for some people. It could be due to a particular musculoskeletal build or pelvic configuration. It may take a bit of time for you to figure out what are the underlying causes are in your case but it is possible that once you figure that out and get treatment you could be healed like I was and live a normal happy life again. Can't remember if you had a good PT evaluation yet but you really owe it to yourself to at least be evaluated.

I know it's hard but please keep your courage up and keep fighting. Praying for you.

Hugs,

Violet

Violate,thank u so much for the encouragement. I did physio for a month including dry neefling in my hip and sacrum. A few weeks after pgad started on a reg basis. I had the symptom several months ago but went away and now its ever day,deep vaginally. Ive been afraid to continue physio as Idk if that is what made me worse. plus she had me do kegals whivh arent good for bladder or pgad. I agree,the uti was just a trigger. if this is PN, im not surprised how i got it, heave lifting with every.job i ever had for 9 years.... anyway, I realize the best tjing to do is try try try and never give up. I just dont know how strong i can be to never give up and wait for my miracle as I try things. Im so over come,so defeated feeling,and live in fear.

Lindsey, it sounds like your PT didn't know the proper treatment for PN. I wonder if it would be worth it for you to try seeing a PT who is knowledgeable in PN although I understand your reluctance. My first PT didn't know about PN and I think I developed PGAD from the stretching exercises she had me do. Did your PT evaluate your SI joints, pelvic alignment, and ligaments? Given your history of heavy lifting that seems pretty important.

I understand your fear. Before I had a diagnosis I was hanging out on the PSAS group (that's what they used to call it before it changed to PGAD). It was so depressing because no one ever got well over there and I thought I was doomed for life. That's when I was at the lowest point in my life and didn't want to live. But eventually my PT diagnosed me with PN and I found the pudendal forums. That was when I began to have some hope that I might have a chance to get better. It was a long hard journey but that was over 10 years ago and I am so glad I toughed it out. You will get through this and especially since you have a supportive husband and faith in God you can have hope.

Violet

Violet M wrote:Lindsey, it sounds like your PT didn't know the proper treatment for PN. I wonder if it would be worth it for you to try seeing a PT who is knowledgeable in PN although I understand your reluctance. My first PT didn't know about PN and I think I developed PGAD from the stretching exercises she had me do. Did your PT evaluate your SI joints, pelvic alignment, and ligaments? Given your history of heavy lifting that seems pretty important.

I understand your fear. Before I had a diagnosis I was hanging out on the PSAS group (that's what they used to call it before it changed to PGAD). It was so depressing because no one ever got well over there and I thought I was doomed for life. That's when I was at the lowest point in my life and didn't want to live. But eventually my PT diagnosed me with PN and I found the pudendal forums. That was when I began to have some hope that I might have a chance to get better. It was a long hard journey but that was over 10 years ago and I am so glad I toughed it out. You will get through this and especially since you have a supportive husband and faith in God you can have hope.

Violet

What type streteches did she have you do that you felt started pgad? I honestly dont remember all that she discovered. I want to start restorative excercise but Im fearful it will increase pgad. I dont remember her checking my joints.