For Family & Friends of Pudendal Nerve Entrapment Sufferers
What does it feel like to suffer from Pudendal Nerve Entrapment or Pudendal Neuralgia?
Pudendal Nerve Entrapment is a rare and extremely painful disorder. Sufferers have described the pain as feeling like “burning acid in their pelvis"...."like their bladder and bowel were on fire", "the same sensation as getting soap in your eyes, only in your pelvis"...."like you have a hot poker trapped in your bowel or vagina"...."like razor blades are constantly cutting your pelvis apart"..."like something is pulling or twisting your genital organs”... and the list goes on. Nerve pain is not comparable to arthritis, fibromyalgia or the simple aches and pains felt by the general population. It’s the sort of pain that would send most people to the emergency room.
What Is Pudendal Neuralgia or Pudendal Entrapment?
A nerve can become trapped in any part of the body. For example: carpel tunnel syndrome is essentially a trapped nerve in the wrist, but the nerve is easy to access and untrap because of it's location. Because the pudendal nerve is situated deep in the pelvis which is dense with connective tissue, ligaments...etc...it is difficult to access with injections or surgery. And, because the pudendal nerve serves a very sensitive area of the body: bladder, bowel, genitals...it can be more painful and debilitating than other nerve pain or entrapments.
Why is it so difficult to diagnose?
The pudendal nerve cannot be viewed by your standard medical tests such as an MRI, CAT Scan or X-Ray. The nerve originates near the sacrum in the lower back, and branches out to the bladder, bowel and genital organs. This is the core stabilizing area of the body, and is therefore densely infiltrated with connective tissue, ligaments, muscle and fascia. Imagine the nerve as a long piece of spaghetti with tiny branches buried deep within all this tissue and muscle. Standard medical tests cannot visualize these tiny nerve fibers. As a result, many sufferers have been misdiagnosed with lumbar disc problems, chronic prostatitis, vulvodynia, interstitial cystitis, gynecological problems, and unfortunately some patients are referred to as “head cases” when their doctors are not able to find the cause of their pain. Also, because of it’s rarity most physicians are not trained to look for it. Even the standard test for pudendal nerve function (PNLT) is not a perfectly accurate test. We can only hope that newly developed diagnostics will be able to show the nerve in detail, and this will inturn inform a broader spectrum of the medical community of this disorder and result in a quicker diagnosis.
Why can’t they remove or destroy the nerve?
The pudendal nerve plays a vital role in everyday bodily functions such as urination and defecation and therefore cannot be cut, destroyed or removed.
How did the pudendal nerve become damaged or entrapped?
No one really knows for sure, but there are numerous causes of nerve damage. Many sufferers have had previous pelvic surgery, disease or trauma (hysterectomies, hernia, childbirth, endometriosis, a serious fall..etc) to the pudendal nerve area in which it is possible the nerve or surrounding structures were damaged. During pudendal surgery, some patients have been found to have their sacral ligaments crushing the nerve, scar tissue from prior injury is entrapping the nerve, or even congenital abnormalities in which the nerve is displaced or attached to the ligaments. It has also been noted that people who bike a lot tend to suffer from pudendal problems. The forward leaning position of the body as well as the intense pressure placed on the pudendal area during biking could predispose a person to pudendal pain and cause scarring and inflammation.
Why are certain activities so painful for the sufferer?
If the nerve is entrapped or inflammed, certain positions of the body like sitting, stretching or squatting can stretch or put even more pressure on the already entrapped nerve, causing even more pain. The main activities that the pudendal nerve patient should avoid are sitting, biking, lifting, pushing, pulling, squatting, vacuming, and stair climbing. It is important to note that the activity may not be painful at the time. Most sufferers will develop an increase in their pain AFTER these activities and may feel a serious increase in pain for days or weeks.
Letter for Family & Friends
Letter for Family & Friends
PNE started 2003 following Vaginal Hysterectomy, pelvic floor repair and right oophorectomy; eventually after many tests had BilateralTG surgery Nantes 2004; following this tried many other treatments including 7 day epidural, ketamin infusions to no avail; Trialed and was implanted with a Neurostimulator in 2007- Dr Van Buyten Belgium, this has enabled me to manage my pain much better.
Re: Letter for Family & Friends
Letter for Family & Friends continued...../
What treatments are currently available?
The first step is to avoid ANY activities that increase the pain. It is extremely important that the patient have a trial period of a few months without unnecessary sitting, lifting, stair climbing..etc.... before trying more invasive treatments. If avoiding painful activities does not decrease the pain, pelvic floor physical therapy can be tried. Anti-inflammatories, muscle relaxants, opiates and some epileptic medications are of some help, but it is important to understand that nerve pain is very difficult to treat with pain medications. Pudendal nerve blocks can help with diagnosis and in some cases reduce pain. Surgery for this condition is in it’s infancy and not practiced by many surgeons in the U.S, but surgery has shown success in some cases. It is EXTREMELY important that the patient receive their diagnosis and treatment from a physician who specializes in pudendal nerve problems, therefore it is not unusual for a patient to have to travel a considerable distance to receive proper treatment.
Why is my friend or relative so depressed or frustrated?
Please try to imagine the impact of serious chronic nerve pain, and this diagnosis in particular. Think about the things that are most important to you. What makes life worth living? Your career? Your love relationships? Your children? Your hobbies? Maybe you like to travel? Garden? Go to the movies? Hike, ski, or exercise? Every one of these activities is severely restricted, limited or downright impossible with pudendal problems. How would you make a living? How would this impact your relationships? Your quality of life? Your hope for the future? Imagine the impact this drastic change in your quality of life would have on your mood. Now try to remember the last time you felt serious pain; a toothache, a broken leg, kidney stone... etc.....We're you anxious? Depressed? Scared? Couldn't wait for the pain to stop? Imagine feeling that pain EVERYDAY. Think of what your friend or relative was like BEFORE they had this pain. I bet they were vital, productive, hard working citizens. Now, through no fault of their own, their life has been drastically altered. Simple everyday bodily functions are extremely painful. Everyday chores are too painful or impossible to do and they now have to depend on others. They wake up everyday with serious pain, and everynight they desperately try to fall asleep with serious pain. Their prognosis is unknown. There's no end in sight. Most medical treatments for pudendal problems are considered experimental, of unknown benefit, and could even make their pain worse. Their friends and family don't understand, and their local medical facility is uninformed. Sound depressing? It is.
What can I do to help my friend or relative?Try to understand how you would like to be treated if you were in this situation. Acknowledge they're in pain. Try not to minimize their predicament. Ask if you can pick something up at the store, help them with a chore, or if they need assistance going for medical treatment. Please don't say "at least you don't have cancer". There is a "c" word worse than cancer....that word is "chronic" pain.
Thank you
What treatments are currently available?
The first step is to avoid ANY activities that increase the pain. It is extremely important that the patient have a trial period of a few months without unnecessary sitting, lifting, stair climbing..etc.... before trying more invasive treatments. If avoiding painful activities does not decrease the pain, pelvic floor physical therapy can be tried. Anti-inflammatories, muscle relaxants, opiates and some epileptic medications are of some help, but it is important to understand that nerve pain is very difficult to treat with pain medications. Pudendal nerve blocks can help with diagnosis and in some cases reduce pain. Surgery for this condition is in it’s infancy and not practiced by many surgeons in the U.S, but surgery has shown success in some cases. It is EXTREMELY important that the patient receive their diagnosis and treatment from a physician who specializes in pudendal nerve problems, therefore it is not unusual for a patient to have to travel a considerable distance to receive proper treatment.
Why is my friend or relative so depressed or frustrated?
Please try to imagine the impact of serious chronic nerve pain, and this diagnosis in particular. Think about the things that are most important to you. What makes life worth living? Your career? Your love relationships? Your children? Your hobbies? Maybe you like to travel? Garden? Go to the movies? Hike, ski, or exercise? Every one of these activities is severely restricted, limited or downright impossible with pudendal problems. How would you make a living? How would this impact your relationships? Your quality of life? Your hope for the future? Imagine the impact this drastic change in your quality of life would have on your mood. Now try to remember the last time you felt serious pain; a toothache, a broken leg, kidney stone... etc.....We're you anxious? Depressed? Scared? Couldn't wait for the pain to stop? Imagine feeling that pain EVERYDAY. Think of what your friend or relative was like BEFORE they had this pain. I bet they were vital, productive, hard working citizens. Now, through no fault of their own, their life has been drastically altered. Simple everyday bodily functions are extremely painful. Everyday chores are too painful or impossible to do and they now have to depend on others. They wake up everyday with serious pain, and everynight they desperately try to fall asleep with serious pain. Their prognosis is unknown. There's no end in sight. Most medical treatments for pudendal problems are considered experimental, of unknown benefit, and could even make their pain worse. Their friends and family don't understand, and their local medical facility is uninformed. Sound depressing? It is.
What can I do to help my friend or relative?Try to understand how you would like to be treated if you were in this situation. Acknowledge they're in pain. Try not to minimize their predicament. Ask if you can pick something up at the store, help them with a chore, or if they need assistance going for medical treatment. Please don't say "at least you don't have cancer". There is a "c" word worse than cancer....that word is "chronic" pain.
Thank you
PNE started 2003 following Vaginal Hysterectomy, pelvic floor repair and right oophorectomy; eventually after many tests had BilateralTG surgery Nantes 2004; following this tried many other treatments including 7 day epidural, ketamin infusions to no avail; Trialed and was implanted with a Neurostimulator in 2007- Dr Van Buyten Belgium, this has enabled me to manage my pain much better.
Re: Letter for Family & Friends
The above Letter was previously highlighted on our previous forum, I thought it was a valuable thing to have here. Sorry I cant manage to get it to fit on one thread.
PNE started 2003 following Vaginal Hysterectomy, pelvic floor repair and right oophorectomy; eventually after many tests had BilateralTG surgery Nantes 2004; following this tried many other treatments including 7 day epidural, ketamin infusions to no avail; Trialed and was implanted with a Neurostimulator in 2007- Dr Van Buyten Belgium, this has enabled me to manage my pain much better.
Re: Letter for Family & Friends
Thanks for bringing this back to the forum, Amanda. I remember lots of people liked it the first time it was posted.
Violet
Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
Re: Letter for Family & Friends
Thanks so much Amanda,
writing for this great letter. You expressed how folks with chronic pain feel, so clearly and eloquently.
Im writing to you all asking for some help in an impossible situation.
I have had pelvic pain in various forms since 2006, You may have noticed my posts.
I've had some mild improvement over the past year from a talented,experienced Pelvic floor PT, whom I'm thankful to have found. I can do more activities, and found that I bounced back faster from pain caused by activity etc. Prior to her, I was almost bedridden, never sitting and not able to stand for long..(Walking was ok. ) My Pt feels that my pain is caused by peri-anal muscles which are stuck in spasm, causing my symptoms. After years of pain, I have been clenching these muscles unknowingly, out of fear, thus making things worse!
Lately however I feel like my treatment has plateaued. and I'm again in excruciating pain, whenever I'm awake.
My husband has stuck with me all this time, taking me to loads of docs appmt's and various procedures which sadly were a mostly a waste of time and money, due to their lack of knowledge etc. I know this ordeal has caused him to suffer for years too!
(I am anxious (by genetics) but managed just fine all my life. I was that'"happy productive" person you mentioned, prior to this pain , which began over a period of a couple months, starting with urinary issues, and after a few years, sitting pain.
I am a stay -at -home Mom and wife, with 3 great kids (one teenage girl and 2 boys in early 20s.)
Prior to motherhood, I was an executive with a large computer company.
So...My PT feels that if we can get the anxiety down, the pain will diminish slowly but surely. She gave me an Ipad like device with a body scan type meditation made by a doctor who had once had similar issues .. and is healed.
Sadly the device wasn't made well and by the time I got it working my frustration level and -pain were through the roof! So she suggested another pain reduction tape to to order online. I have done so. (daily meditation is something I really need, tho not something I have done that often!
The reason I write today is this. My husband ,despite what I've described above, treats me horribly.. He is cold and un-communicative, offering zero emotional support or "pat on the back" for any accomplishments etc.
He is not generally a warm or empathetic person anyway, but dealing with a wife with chronic pain, has changed him even more.
He is fine with the kids (a good dad) but mean, disrespectful and cold to me. He never asks how I'm feeling.
Part of that may be due to the fact that my pain has prevented us from marital relations for the most part. (Sorry for TMI!)
He doesn't say it, but his actions make it clear, that he believes this entire condition is caused my "anxiety" or "nervousness".
Thus I am in effect, to blame for this horrendous pain, and the strife in our marriage. He told me about a year ago, that he did not want to hear about it again. and NOT to talk about it.
So I stopped talking about, and suffer in silence. If I am having a particularly bad day with pain or constipation from meds, and mention that, ..he just walks away.
He loses his temper regularly,, screaming about how he has "to do all the work around here" while maintaining his job.
He works from home often, which makes things harder as he is always around.
That extra 'work' he mentioned is picking up our daughter when needed, or cooking dinner. He is a very low energy person, and hates to do chores.
(His idea of "cooking") is throwing a pre-packaged chicken into oven, microwaving a veggie and/or boiling pasta. Later, he leaves the food out, does no dishes, leaving me with a big mess to clean up up each night. He lays on the sofa whenever he's home, watching TV and reading, and does nothing else. I do whatever I can, laundry ,dishwasher, and any chores I can manage.
Even before I got' sick,' I was angry at him for not helping with chores.(other than doing his own laundry which his Mom taught him to do, prior to marriage. He comes from an immigrant family where the wife did all the housework, and husband sat around after the workday, and was waited on. They were great in-laws,( God rest their souls) but this was just how it was in the 60s and 70s and 80s in their household. The world has changed these days! Later in life, my mother in law finally spoke up and got some help from my father in law. Anyway my husband would like that same kind of 'waiting on' treatment and resents that I can't do it right now.
Most of my husband's time is spent on the sofa not lifting a finger. He gets the kids to some chores if needed.
i would love to cook for our family again, but by dinner time I am usually in pretty bad shape., Ive asked him many times over the years to read this site, and read the stories to understand my ailment.... but he refuses. He says he 'gets it' and doesn't need to read about it.
Believe me, he has no clue!
A few years back he had a kidney stone, He was writhing on the floor screaming in pain. He was able to get help quickly from a medical facility nearby. He doesn't understand----- that how he felt that day is "me " everyday!
He thinks I'm being "dramatic and "selfish", in his words.
Things have deteriorated badly lately . He treats me like I'm a nuisance and says am "useless " in his words!
Today he woke me from my comfortable sleep, because he couldn't find his checkbook and I was the last one to use it. I looked all over and found it! --- downstairs in his mancave! I tried to go back to sleep, but a few minutes later he was banging on the front door like a madman, as he locked himself out while walking the dog.
So I finally told him what I thought of him! I've been holding it in a long time.
Within seconds,my pain went from a peaceful level, to a "10". I am in agony both emotionally and physically.
The other awful part is,..since he is normal and rational with the kids, they seem to support him, not me! They see me crying at times so must think I'm a mess. Ive spent years being the best Mom I can, so this really hurts me. This pain started when my daughter was 6, so she didn't
get to see the" normal me" for long, as my boys did.
I don't talk to them about my pain as I want them to be happy and normal. But it hurts even more, when I see my daughter hanging out with her Dad now, when she and I we were always close. My oldest boy understands things and even writes beautiful posts about me on facebook on Mothers Day, my B-day etc.which I so appreciate. He is 23 tho, and rarely home due to busy job and social life.
I come from a loving family. My Dad was always respectful and loving to my Mom; tho she sometimes was difficult, they had a great marriage.
He helped with the house and us kids, even while working and putting himself through law school.I could go to him with any problem and count on loving support etc. My pain condition started a year after he died, which I often think , is no coincidence.
My Mom is now quite elderly and having some memory loss/ dementia. She is loving, but of course cannot understand this stuff.
In summary, my husband had become someone I honestly don't know or love anymore.. due to the way he acts. He's like an angry stranger to me.
Each day something else happens. The marriage is awful. Friends warn me that divorce is terrible ,and not even to think about it right now, but I can't go on this way! ( I am fearful that he would try to get custody of the kids , just to be vengeful! He is very proud and prideful.
I don't think he wants divorce, tho I could be wrong, as he never communicates his feelings.
i want to show him Amanda's letter, and pray it gets through to him, but doubt he will even look. BTW I suggested marriage counseling awhile back, but he blew off the idea. I don't think he even realized till today, how unhappy I am.
I'm sorry Amanda, to address this to you,.
Im just wondering has Anyone else here experienced this? If so, What did you do?
I want to get in my car and drive away to my Moms house, just for a break from him, but am in too much pain at the moment.
I do believe my emotions play a large part in my healing and that staying with this man is making me sicker. How can I "relax" with this going on?
Im really lost and feel at the end of my rope.
Could Someone pls reply!
Thanks so much!
writing for this great letter. You expressed how folks with chronic pain feel, so clearly and eloquently.
Im writing to you all asking for some help in an impossible situation.
I have had pelvic pain in various forms since 2006, You may have noticed my posts.
I've had some mild improvement over the past year from a talented,experienced Pelvic floor PT, whom I'm thankful to have found. I can do more activities, and found that I bounced back faster from pain caused by activity etc. Prior to her, I was almost bedridden, never sitting and not able to stand for long..(Walking was ok. ) My Pt feels that my pain is caused by peri-anal muscles which are stuck in spasm, causing my symptoms. After years of pain, I have been clenching these muscles unknowingly, out of fear, thus making things worse!
Lately however I feel like my treatment has plateaued. and I'm again in excruciating pain, whenever I'm awake.
My husband has stuck with me all this time, taking me to loads of docs appmt's and various procedures which sadly were a mostly a waste of time and money, due to their lack of knowledge etc. I know this ordeal has caused him to suffer for years too!
(I am anxious (by genetics) but managed just fine all my life. I was that'"happy productive" person you mentioned, prior to this pain , which began over a period of a couple months, starting with urinary issues, and after a few years, sitting pain.
I am a stay -at -home Mom and wife, with 3 great kids (one teenage girl and 2 boys in early 20s.)
Prior to motherhood, I was an executive with a large computer company.
So...My PT feels that if we can get the anxiety down, the pain will diminish slowly but surely. She gave me an Ipad like device with a body scan type meditation made by a doctor who had once had similar issues .. and is healed.
Sadly the device wasn't made well and by the time I got it working my frustration level and -pain were through the roof! So she suggested another pain reduction tape to to order online. I have done so. (daily meditation is something I really need, tho not something I have done that often!
The reason I write today is this. My husband ,despite what I've described above, treats me horribly.. He is cold and un-communicative, offering zero emotional support or "pat on the back" for any accomplishments etc.
He is not generally a warm or empathetic person anyway, but dealing with a wife with chronic pain, has changed him even more.
He is fine with the kids (a good dad) but mean, disrespectful and cold to me. He never asks how I'm feeling.
Part of that may be due to the fact that my pain has prevented us from marital relations for the most part. (Sorry for TMI!)
He doesn't say it, but his actions make it clear, that he believes this entire condition is caused my "anxiety" or "nervousness".
Thus I am in effect, to blame for this horrendous pain, and the strife in our marriage. He told me about a year ago, that he did not want to hear about it again. and NOT to talk about it.
So I stopped talking about, and suffer in silence. If I am having a particularly bad day with pain or constipation from meds, and mention that, ..he just walks away.
He loses his temper regularly,, screaming about how he has "to do all the work around here" while maintaining his job.
He works from home often, which makes things harder as he is always around.
That extra 'work' he mentioned is picking up our daughter when needed, or cooking dinner. He is a very low energy person, and hates to do chores.
(His idea of "cooking") is throwing a pre-packaged chicken into oven, microwaving a veggie and/or boiling pasta. Later, he leaves the food out, does no dishes, leaving me with a big mess to clean up up each night. He lays on the sofa whenever he's home, watching TV and reading, and does nothing else. I do whatever I can, laundry ,dishwasher, and any chores I can manage.
Even before I got' sick,' I was angry at him for not helping with chores.(other than doing his own laundry which his Mom taught him to do, prior to marriage. He comes from an immigrant family where the wife did all the housework, and husband sat around after the workday, and was waited on. They were great in-laws,( God rest their souls) but this was just how it was in the 60s and 70s and 80s in their household. The world has changed these days! Later in life, my mother in law finally spoke up and got some help from my father in law. Anyway my husband would like that same kind of 'waiting on' treatment and resents that I can't do it right now.
Most of my husband's time is spent on the sofa not lifting a finger. He gets the kids to some chores if needed.
i would love to cook for our family again, but by dinner time I am usually in pretty bad shape., Ive asked him many times over the years to read this site, and read the stories to understand my ailment.... but he refuses. He says he 'gets it' and doesn't need to read about it.
Believe me, he has no clue!
A few years back he had a kidney stone, He was writhing on the floor screaming in pain. He was able to get help quickly from a medical facility nearby. He doesn't understand----- that how he felt that day is "me " everyday!
He thinks I'm being "dramatic and "selfish", in his words.
Things have deteriorated badly lately . He treats me like I'm a nuisance and says am "useless " in his words!
Today he woke me from my comfortable sleep, because he couldn't find his checkbook and I was the last one to use it. I looked all over and found it! --- downstairs in his mancave! I tried to go back to sleep, but a few minutes later he was banging on the front door like a madman, as he locked himself out while walking the dog.
So I finally told him what I thought of him! I've been holding it in a long time.
Within seconds,my pain went from a peaceful level, to a "10". I am in agony both emotionally and physically.
The other awful part is,..since he is normal and rational with the kids, they seem to support him, not me! They see me crying at times so must think I'm a mess. Ive spent years being the best Mom I can, so this really hurts me. This pain started when my daughter was 6, so she didn't
get to see the" normal me" for long, as my boys did.
I don't talk to them about my pain as I want them to be happy and normal. But it hurts even more, when I see my daughter hanging out with her Dad now, when she and I we were always close. My oldest boy understands things and even writes beautiful posts about me on facebook on Mothers Day, my B-day etc.which I so appreciate. He is 23 tho, and rarely home due to busy job and social life.
I come from a loving family. My Dad was always respectful and loving to my Mom; tho she sometimes was difficult, they had a great marriage.
He helped with the house and us kids, even while working and putting himself through law school.I could go to him with any problem and count on loving support etc. My pain condition started a year after he died, which I often think , is no coincidence.
My Mom is now quite elderly and having some memory loss/ dementia. She is loving, but of course cannot understand this stuff.
In summary, my husband had become someone I honestly don't know or love anymore.. due to the way he acts. He's like an angry stranger to me.
Each day something else happens. The marriage is awful. Friends warn me that divorce is terrible ,and not even to think about it right now, but I can't go on this way! ( I am fearful that he would try to get custody of the kids , just to be vengeful! He is very proud and prideful.
I don't think he wants divorce, tho I could be wrong, as he never communicates his feelings.
i want to show him Amanda's letter, and pray it gets through to him, but doubt he will even look. BTW I suggested marriage counseling awhile back, but he blew off the idea. I don't think he even realized till today, how unhappy I am.
I'm sorry Amanda, to address this to you,.
Im just wondering has Anyone else here experienced this? If so, What did you do?
I want to get in my car and drive away to my Moms house, just for a break from him, but am in too much pain at the moment.
I do believe my emotions play a large part in my healing and that staying with this man is making me sicker. How can I "relax" with this going on?
Im really lost and feel at the end of my rope.
Could Someone pls reply!
Thanks so much!
Re: Letter for Family & Friends
Kathy,
I am glad you are getting some help finally from PT, yeah! Of course sorry to hear all the other struggles. I can barely commisserate with you as my hubby is very supportive although right now I am having a bit of a hard time being anxious over our house being painted next week almost the whole first floor (my bath, our bedroom except for closet, a definite plus). I need to pack up the china closet and buffet and other knick knacks throughout along with packing and my regular laundry, etc. Small in comparison but he thinks we can do this over the weekend and I need to space this out and will still have a tough time along with working 5 hours a day. He will do the heavy lifting but it is always hard for me to do extra stuff without killing my feet and my PN. We also haven't had sex but he would would be devestated if we did and I was sent into a flare. My GP is trying to work my depression and I probably need go wait until I retire in the spring to get the PT and exercises I need to make sex painless(they say there is hope). All I can say for you is to try to focus and cling to the help from PT and work on the meditation. My acupincturist is helping with the depression but it is a slow process. I wish you the very best and glad you have your son's support. Every little bit helps.
Janet
I am glad you are getting some help finally from PT, yeah! Of course sorry to hear all the other struggles. I can barely commisserate with you as my hubby is very supportive although right now I am having a bit of a hard time being anxious over our house being painted next week almost the whole first floor (my bath, our bedroom except for closet, a definite plus). I need to pack up the china closet and buffet and other knick knacks throughout along with packing and my regular laundry, etc. Small in comparison but he thinks we can do this over the weekend and I need to space this out and will still have a tough time along with working 5 hours a day. He will do the heavy lifting but it is always hard for me to do extra stuff without killing my feet and my PN. We also haven't had sex but he would would be devestated if we did and I was sent into a flare. My GP is trying to work my depression and I probably need go wait until I retire in the spring to get the PT and exercises I need to make sex painless(they say there is hope). All I can say for you is to try to focus and cling to the help from PT and work on the meditation. My acupincturist is helping with the depression but it is a slow process. I wish you the very best and glad you have your son's support. Every little bit helps.
Janet
2007-08 pelvic muscles spasms treated by EGS. 6/27/10 sat too long on hard chair- spasms, EGS not work Botox help, cortisone shots in coccyx help, still pain, PT found PNE & sent me to Dr Marvel nerve blocks & MRN, TG left surgery 5/9/11. I have chronic bunion pain surgery at age 21. TG gave me back enough sitting to keep my job & join in some social activities. I wish the best to everyone! 2019 luck with orthotics from pedorthist & great PT allowing me to get off oxycodone.
Re: Letter for Family & Friends
I'm not married so I have no idea what it's like to be married but no way in hell I would stay in a toxic environment as you describe your husband. Life is too short. This pain is something that is impossible to describe unless you have lived it so providing him with the letter in this thread is not going to change things.
Please take care of yourself.
Please take care of yourself.
Re: Letter for Family & Friends
Kathyd,
That sounds extremely difficult. It made me cry. It does sound like life would be happier if you were separated. As Patty said, it sounds toxic and could only be making your physical and mental health worse. Perhaps you could discuss a separation with him and see how that goes? Thanks for sharing this difficult situation.
April
That sounds extremely difficult. It made me cry. It does sound like life would be happier if you were separated. As Patty said, it sounds toxic and could only be making your physical and mental health worse. Perhaps you could discuss a separation with him and see how that goes? Thanks for sharing this difficult situation.
April
Re: Letter for Family & Friends
Chronic pain conditions effect the whole family, not just the individual who is the one with the pain. I think individuals with chronic pelvic pain have the extra issue of dealing with the intimacy issues that other conditions do not.
I am divorced from my first husband and have been with my 2nd partner for nearly 20 years. My first marriage we went to marriage counseling for about 1 year together, he quit going and I went by myself for another 2 years. The first thing I learned and still have to work on today in my current relationship is: you can't change anyone else but yourself. With my last statement in mind, if your husband isn't willing to go to counseling then go yourself. I know you have difficulty driving and money might be an issue. If you need to take a taxi or use Uber to get to your counseling appointment you can do that. In this modern world of technology you might find someone who can Skype sessions. I know there are really good books that you can work through on your own and even websites. I've personally done both of the latter. Even after all these years I have someone I go to on as an need bases when I need to talk through things with someone with an outside perspective. Over the years they have given me insights into myself and suggestions for change that I am very thankful for because it has made me a better person and more balanced.
My sweetheart is not perfect and I could write a list of complaints about him but I focus on the good traits in him because he could write a list of traits about me that drive him nuts. Since my chronic pelvic pain started he has been a trooper but I know there are days it is hard on him. I remind myself all the time that my chronic pain problems effect him too, it just isn't about me. For me I have found thanking him for what he does ie driving me to doctors appointments etc. goes a long ways when he knows how much I appreciate his efforts.
Might I suggest you use this opportunity to better yourself in how to make all your relationships healthy and the chips will fall in the correct place for you. I cannot say, nor will I say, that separating from your husband is the right answer. What I do know that unless you change yourself whatever relationships patterns you currently have will only follow you into the next relationship.
I am divorced from my first husband and have been with my 2nd partner for nearly 20 years. My first marriage we went to marriage counseling for about 1 year together, he quit going and I went by myself for another 2 years. The first thing I learned and still have to work on today in my current relationship is: you can't change anyone else but yourself. With my last statement in mind, if your husband isn't willing to go to counseling then go yourself. I know you have difficulty driving and money might be an issue. If you need to take a taxi or use Uber to get to your counseling appointment you can do that. In this modern world of technology you might find someone who can Skype sessions. I know there are really good books that you can work through on your own and even websites. I've personally done both of the latter. Even after all these years I have someone I go to on as an need bases when I need to talk through things with someone with an outside perspective. Over the years they have given me insights into myself and suggestions for change that I am very thankful for because it has made me a better person and more balanced.
My sweetheart is not perfect and I could write a list of complaints about him but I focus on the good traits in him because he could write a list of traits about me that drive him nuts. Since my chronic pelvic pain started he has been a trooper but I know there are days it is hard on him. I remind myself all the time that my chronic pain problems effect him too, it just isn't about me. For me I have found thanking him for what he does ie driving me to doctors appointments etc. goes a long ways when he knows how much I appreciate his efforts.
Might I suggest you use this opportunity to better yourself in how to make all your relationships healthy and the chips will fall in the correct place for you. I cannot say, nor will I say, that separating from your husband is the right answer. What I do know that unless you change yourself whatever relationships patterns you currently have will only follow you into the next relationship.
2/07 LAVH and TOT 7/07 TOT right side removed 9/07 IL, IH and GN neuropathy 11/07 PN - Dr. Howard
6/08 Obturator neuralgia - Dr. Conway 11/08 Disability, piriformis syndrome - Dr. Howard
4/09 Bilateral obturator decompression surgery, BLL RSD - Dr. Howard
9/10 Removed left side TOT, botox, re-evaluate obturator nerve - Dr. Hibner
2/11 LFCN and saphenous neuralgia - Dr. Dellon 2/11 MRI with Dr. Potter - confirmed entrapment
5/11 Right side TG - Dr. Hibner 2012 Left side TG - Dr. Hibner
6/08 Obturator neuralgia - Dr. Conway 11/08 Disability, piriformis syndrome - Dr. Howard
4/09 Bilateral obturator decompression surgery, BLL RSD - Dr. Howard
9/10 Removed left side TOT, botox, re-evaluate obturator nerve - Dr. Hibner
2/11 LFCN and saphenous neuralgia - Dr. Dellon 2/11 MRI with Dr. Potter - confirmed entrapment
5/11 Right side TG - Dr. Hibner 2012 Left side TG - Dr. Hibner
Re: Letter for Family & Friends
Hi
and thanks so much to those who replied to my note the other day and offered your thoughts.
I was very much in need of a friend to talk to, and you guys were so kind to reply so quickly!
I will write later to keep u posted..
but just wanted to say thx to everyone and wish you all well also!
and thanks so much to those who replied to my note the other day and offered your thoughts.
I was very much in need of a friend to talk to, and you guys were so kind to reply so quickly!
I will write later to keep u posted..
but just wanted to say thx to everyone and wish you all well also!