In 2001 ~ I delivered my Son naturally 9 lbs. even 20 inches long and had a 4th degree laceration. Which my Doctor should have called a general surgeon and taken me into the or to repair but she sewed me up in the room and didn't give me a ultrasound at my 6 week checkup. Since that was my first and only baby I had no idea how severe my delivery was other then my Son Michael had Erbs palsy, fully collapsed left lung, partial collapsed right lung and heart problems. He is perfectly healthy now and did recover from all his injuries.
In early 2005 I began suffering w/ fecal incontinence, mucous incontinence, horrid low back pain to where I couldn't stand longer then 10 minutes without wanting to cry & couldn't sit very long either. The only time I felt some relief was to lay down and I was still in horrid pain from standing/sitting & stomach pain that came on all of a sudden out of no where.
Went and seen my GP who suggested I see a Gastroenterologist who did a colonoscopy, took out a few polyps and told me I had IBS and prescribed me Bentyl. I kept going back to him telling him my symptoms weren't getting any better and in fact were getting worse. He told me that I needed to accept that this was IBS and learn to live with it. I went to the ER and my GP numerous times and no one could figure out what was causing my horrible low back pain and fecal incontinence. I had x-rays, which determined I had disk deterioration but the pain shouldn't be to the extreme of what I was going through & I had a MRI which I had no abnormal findings.
In early 2007 I started noticing that my colon was protruding from my rectum and went back to the Gastroenterologist and found out my Doctor had left the practice and I wound up seeing his partner who said during a rectal exam that he felt something odd and wanted me to see a General Surgeon. The general surgeon determined I had a full rectal prolapse and suggested I go to Chicago and see a Colon/Rectal surgeon there.
I went to Chicago and seen a Colon/Rectal surgeon who did confirm I had a full prolapsed colon and told me I needed surgery to correct the problem. Through an ultrasound it was determined that I had a defect in my internal & external sphincter muscles and Anorectal Manometry which determined I had some injured nerves & muscles in my anus & a 2nd degree rectocele. I was told that because of the way my gynecologist handeled the birth of my Son is the reason I have all these medical problems.
I asked him if surgery would make my low back pain go away and he said he wasn't sure. I ended up having a perineal rectosigmoidectomy, where they removed 6 inches of my rectum. Through the next 2 years I still had constipation, diarrhea, low back pain (a lil better), stomach cramps, pain before and after a bm & fecal & mucous incontinence. It was suggested that I start biofeedback to see if I could have better results with my medical issues and I have to admit, biofeedback only made my back problems worse and my incontinence & abdominal pain stayed the same.
Through the next three years I tried to live with the chronic pain and all the other symptoms the best that I could through watching what I was eating, fiber, pain pills and a lot less activity. I ended up losing 80 pounds due to chronic pain and not being able to eat much from feeling nauseous from it.
In 2010 I noticed I had another prolapsed colon along with all the other symptoms listed above. I contacted the hospital where I had my 1st surgery and they told me my surgeon had left their hospital and assigned me their new surgeon. Upon my visit she did confirm I did have another prolapsed colon. She had to take a few weeks to discuss my case over with all the other surgeons as my case was more complex seeing how I just had a surgery 3 years prior and they didn't want to do another perineal rectosigmoidectomy because the results weren't good the first time around and they weren't sure they could do an abdominal surgery on me because they were worried about cutting the blood supply off to the colon.
She called me and told me that after much discussion I was a good candidate for a abdominal rectopexy. I went in and had my surgery in December 2010 where they removed 12 inches of my large intestine and secured my rectum to the tissue around my sacrum bone. I woke up and my prolapse was fixed, still had pain in my lower back and still have issues with fecal/mucous incontinence and stomach cramping.
In June 2011 I started noticing that the mucous incontinence was getting worse, still had fecal incontinence, horrible stomach cramps, still pain before & after a bm, headaches and now the low back pain was at it's worst then it had ever been. It hurts to sit, stand for very long, numbness, pins & needles, burning, stabbing pain, aching, painful intercourse & the urge to urinate all the time.
Called my colon surgeon and went back in to see her who said she's still at a lose for all I'm still going through. During a rectal exam she now said she thinks I have PNE/PN because when she touched that part of my internal pelvic area she was able to re-inact the same exact pain I feel on a daily basis. She now has me scheduled for a Sitz-Marker Study to see if my digestion is slow and after I do this study I am to schedule another appointment with her to discuss those results.
I had on my own decided to contact a urogynecologist to see if I had other organ prolapses I wasn't aware of. I went and seen him just last week and he said I had no other organ prolapses other then the rectocele. I told him that my colon doctor suspected I had PNE/PN but didn't schedule me for any testing and that my back pain was so severe and I actually started crying while I was talking to him because I just feel so helpless. He prescribed me Lyrica which I'm not in the process of trying to get it approved through my insurance company because it's not considered a "gateway" drug for nerve problems and they want me to start with Gabapentin for my treatment. So now I'm just waiting on the Doctor to call my insurance company to get that worked out.
He wants me to do a Electrodiagnostic Testing of the Pelvic Floor with the Rehabilitation Institute of Chicago to determine if I do indeed have PNE/PN. So tomorrow I will be calling there to set up an appointment.
Then he wants me to start PT for rectopexy & possible PNE/PN & more biofeedback. He then asked that I come back in 6-8 weeks to let him know if I have any pain relief from the treatments and to discuss my test results of the Electrodiagnostic testings.
Since both my Colon Surgeon & Urogynecologist work at the same hospital they have already talked and have decided to work together to work on my progress.
After suffering with all of this for over 6 years I'm just thankful that finally they are getting closer to giving me a diagnosis for all my medical troubles and working towards trying to solve them. Everyday is a complete challenge for me, I'm in chronic horrific pain everyday, hurts to sit, stand, walk very far, ride in a car, have a bm & sexual intercourse. It has affected my life in such negative ways, almost cost me my marriage in 2007 since going through a seperation and a lot of work on both sides we are finally in a much better place, my relationship with my 10 year old Son is strained because I can't do much of anything outside of the house that doesn't require laying down most of the time. My friendships have diminished as who wants to continue a friendship with someone who cant go out and do much of anything. I find myself extremely crabby most of the time because of the chronic pain and depression over the reality of "this is my life now". As of right now I'm taking Hydrocodone 7.5 mg. & Baclofen 10mg. which both don't do much for me other then make me sleepy & outta it and just dull the pain enough to tolerate it.
I used to be extremely healthy, outgoing, fun, had tons of friends, out every weekend, be the life of the party, happy all of the time to this person I don't even know anymore. I'm thankful that I'm having medical issues and my Son is completely healthy, God couldn't have given me a better Blessing then that. I just wish there was more information regarding all our medical conditions so we could have more help provided to us within the regions where we live. Upon reading the closest place for PN treatment is Minnesota from NW Indiana and to be fully honest we just don't have the money at this time to travel, stay there and seek medical help. I've been seeking treatments, testing, surgeries and therapy for the last 6 years with no relief. I feel so bad so much of the time that this burden falls on my Husband and he has to pay for all my medical bills seeing how I can no longer work due to the pain. And no one can relate to what your going through, the pain and symptoms and it's so embarrassing to tell people what's really wrong with you. Especially in my case with the fecal/mucous incontinence on top of it.
Just wondering if there's anyone else on this forum who also had rectal surgery with PNE/PN symptoms?
I'm very happy there are places we can all go to get questions, answers, others to relate talk with ~ Thank you HOPE for creating this site!!!
New User/Prolapsed Colon/PNE
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curliegirlie74
- Posts: 5
- Joined: Tue Aug 23, 2011 4:14 am
- Location: NW Indiana, USA
- Contact:
New User/Prolapsed Colon/PNE
1 childbirth w/ a 4th degree laceration, repaired in the birthing room, no ultrasound @ 6 wk. checkup in 2001. 2005 After many Dr. visits misdiagnosed, fecal incontinence, 2 colon surgeries, severe/chronic low back pain, numbness, tingling, burning, itching and the list goes on. My colon/rectal surgeon did a PNMLT test and a rectal EMG on me which determined there was nerve damage which he diagnosed as bilateral pudendal neuropathy.
Re: New User/Prolapsed Colon/PNE
Hello curliegirlie
Every morning I log on to the forum here and click 'View New Posts' - and yours is the first one I have read today. Let me tell you that it nearly brought me to tears. I am so sorry that you have had to go through all this, and that you are having to deal with such a horrible situation.
I have not had rectal surgery as such but I have had repeated surgeries to deal with repeated prolapses, the last one was very severe and I was unable to empty my bowel at all, and I did also have occasional fecal incontinence. During the surgery to repair this, which included putting my large bowel back in the right place, the pudendal nerve was damaged. I have since developed continence problems which are starting to make life quite difficult - that's both fecal and urinary incontinence. So I have some idea of what you've been dealing with.
Here on this forum we can indeed relate to what you are going through, especially with regard to the pain.
When people want to know what is wrong with me, I usually say first of all that I have a neuropathy and it is very painful. People tend to assume it is my back and I don't enlighten them. If they want to know more, I usually say that it is a damaged nerve in the pelvis - a major nerve. And if people say - but you don't look ill! - then I usually just say thankyou, and smile.
I really hope that they will soon be able to get your pain under control. It makes such a difference. Everything is easier to manage then. The meds you are taking will 'take you out of it' but they are not really so effective for neuropathic pain, it is high time they gave you something that will actually make a difference.
It is such a pity that your insurance isn't willing to start you off on Lyrica (pregabalin), but I am not surprised, it is so expensive. Most of us have had to work our way up the ladder trying different things. Often a combination of medications turns out to give the best results.
Amitriptyline or nortriptyline are often the starting point, they've been around for a long time and are well understood. Nortriptyline tends to have less side effects but many people take amitriptyline with no problems, and at much higher doses than we need for pain relief. Lots of people get good pain relief with these drugs and they are not expensive.
Gabapentin is also effective for pain relief, and it is not expensive. It can be a bit problematic with side effects for some people, however there are many people on this forum who are taking it to good effect. Pregabalin (Lyrica) is much newer. It tends to have less side effects, but it is very expensive and most doctors here in the UK are only willing to prescribe it after everything else has been tried. In discussion recently it has emerged that a lot of doctors won't prescribe it at all, because of the cost.
I've been up the medication ladder once and I'm now on the way down again, it seems, trying combinations of drugs. At the moment I'm taking pregabalin (Lyrica), in combination with nortriptyline, and I'm finding it more helpful than pregabalin alone.
Perhaps you could start on gabapentin, as your insurance is willing to pay for this one? It is a good idea, if they won't give you pregabalin first. You do need to get the pain under control as a real priority, if it goes on for too long then the pain gate 'gets stuck', and that's really not good.
Oh - and please don't sit. It is a major lifestyle change but it makes such a difference, sitting puts pressure on the pudendal nerve and makes everything worse. Most of us now avoiding sitting like the plague, or only sit with a special cushion - many people in the US like IC cushions, have you had the opportunity to try one of these at all?
I hope that you have a better day today, knowing that you are not alone.
Every morning I log on to the forum here and click 'View New Posts' - and yours is the first one I have read today. Let me tell you that it nearly brought me to tears. I am so sorry that you have had to go through all this, and that you are having to deal with such a horrible situation.
I have not had rectal surgery as such but I have had repeated surgeries to deal with repeated prolapses, the last one was very severe and I was unable to empty my bowel at all, and I did also have occasional fecal incontinence. During the surgery to repair this, which included putting my large bowel back in the right place, the pudendal nerve was damaged. I have since developed continence problems which are starting to make life quite difficult - that's both fecal and urinary incontinence. So I have some idea of what you've been dealing with.
Here on this forum we can indeed relate to what you are going through, especially with regard to the pain.
When people want to know what is wrong with me, I usually say first of all that I have a neuropathy and it is very painful. People tend to assume it is my back and I don't enlighten them. If they want to know more, I usually say that it is a damaged nerve in the pelvis - a major nerve. And if people say - but you don't look ill! - then I usually just say thankyou, and smile.
I really hope that they will soon be able to get your pain under control. It makes such a difference. Everything is easier to manage then. The meds you are taking will 'take you out of it' but they are not really so effective for neuropathic pain, it is high time they gave you something that will actually make a difference.
It is such a pity that your insurance isn't willing to start you off on Lyrica (pregabalin), but I am not surprised, it is so expensive. Most of us have had to work our way up the ladder trying different things. Often a combination of medications turns out to give the best results.
Amitriptyline or nortriptyline are often the starting point, they've been around for a long time and are well understood. Nortriptyline tends to have less side effects but many people take amitriptyline with no problems, and at much higher doses than we need for pain relief. Lots of people get good pain relief with these drugs and they are not expensive.
Gabapentin is also effective for pain relief, and it is not expensive. It can be a bit problematic with side effects for some people, however there are many people on this forum who are taking it to good effect. Pregabalin (Lyrica) is much newer. It tends to have less side effects, but it is very expensive and most doctors here in the UK are only willing to prescribe it after everything else has been tried. In discussion recently it has emerged that a lot of doctors won't prescribe it at all, because of the cost.
I've been up the medication ladder once and I'm now on the way down again, it seems, trying combinations of drugs. At the moment I'm taking pregabalin (Lyrica), in combination with nortriptyline, and I'm finding it more helpful than pregabalin alone.
Perhaps you could start on gabapentin, as your insurance is willing to pay for this one? It is a good idea, if they won't give you pregabalin first. You do need to get the pain under control as a real priority, if it goes on for too long then the pain gate 'gets stuck', and that's really not good.
Oh - and please don't sit. It is a major lifestyle change but it makes such a difference, sitting puts pressure on the pudendal nerve and makes everything worse. Most of us now avoiding sitting like the plague, or only sit with a special cushion - many people in the US like IC cushions, have you had the opportunity to try one of these at all?
I hope that you have a better day today, knowing that you are not alone.
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helenlegs 11
- Posts: 1779
- Joined: Fri Sep 17, 2010 9:39 am
- Location: North East England
Re: New User/Prolapsed Colon/PNE
Hi there curlygirlie,
Well at least now you have us . Glad you have found this forum. . . . . and a possible PN diagnosis which can hopefully start you on the road to some helpful treatment. It's good that you have a couple of doctors who are taking your problems on board but you have been through it, haven't you!
I would echo Calluna's idea about gabapentin as it is helpful for some. Many people are put on a substantial dose and are expected to titrate up fairly quickly which can cause difficult side effects initially but it is worth a try (but slowly) unless your insurance issue can be sorted quickly as pregabalin seems to be a favoured medication IF you can get it prescribed (I can't)
The Latin word pudendal means shame but we are having non of that here
. I have discussed my bottom and bits and their workings (or not) on so many pages here I have no shame left I'm sure you will find emotional help and a wealth of practical knowledge from people here.
Take care,
Helen
Well at least now you have us . Glad you have found this forum. . . . . and a possible PN diagnosis which can hopefully start you on the road to some helpful treatment. It's good that you have a couple of doctors who are taking your problems on board but you have been through it, haven't you!
I would echo Calluna's idea about gabapentin as it is helpful for some. Many people are put on a substantial dose and are expected to titrate up fairly quickly which can cause difficult side effects initially but it is worth a try (but slowly) unless your insurance issue can be sorted quickly as pregabalin seems to be a favoured medication IF you can get it prescribed (I can't)
The Latin word pudendal means shame but we are having non of that here
. I have discussed my bottom and bits and their workings (or not) on so many pages here I have no shame left I'm sure you will find emotional help and a wealth of practical knowledge from people here.Take care,
Helen
Fall 2008. Misdiagnosed with lumber spine problem. MRN June 2010 indicated pudendal entrapment at Alcocks canal. Diagnosed with complex variant piriformis syndrome with sciatic, pudendal and gluteal entrapment's by Dr Filler 2010.Guided piriformis botox injection 2011 Bristol. 2013, Nerve conduction test positive; new spinal MRI scan negative, so diagnosed for the 4th time with pelvic nerve entrapment, now recognised as Sciatic, pudendal, PFCN and cluneal nerves at piriformis level.
Re: New User/Prolapsed Colon/PNE
Welcome to our forum. Your post brought tears to my eyes as I read your struggles over these last years. This forum is a great resource for information and support.
I echo Calluna's thoughts on the medication. Hopefully, you will notice some difference in the near future. It is fantastac that the two dr.'s are willing to work together. That is a God sent and I am so happy for you. This should get things moving for you and finally get your pain levels under control.
Keep us posted on your progress and ask any questions as on this forum we have all discussed our private parts and there is no shame here. Prayers and hugs sent your way.
I echo Calluna's thoughts on the medication. Hopefully, you will notice some difference in the near future. It is fantastac that the two dr.'s are willing to work together. That is a God sent and I am so happy for you. This should get things moving for you and finally get your pain levels under control.
Keep us posted on your progress and ask any questions as on this forum we have all discussed our private parts and there is no shame here. Prayers and hugs sent your way.
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: New User/Prolapsed Colon/PNE
curliegirlie,
I am so sorry for all of your losses over these past years. I am newly diagnosed as well, and starting the chain of interventions hoping to feel better. I have 2 small children (2 and 1) so I lie on the floor on my stomach to play with them.
I will be thinking about you all day after reading your story. Please keep us posted. You have found new friends!
cari
I am so sorry for all of your losses over these past years. I am newly diagnosed as well, and starting the chain of interventions hoping to feel better. I have 2 small children (2 and 1) so I lie on the floor on my stomach to play with them.
I will be thinking about you all day after reading your story. Please keep us posted. You have found new friends!
cari
PN after using pickaxe doing yardwork 6/11
Potter MRI: Scar tissue abutting L pudendal.
Hibner consult 10/11 w/ plan: 2 mo. PT
No meds work for me
PRF X 3 times in Denver ( was pain free for 5 months after second)
Potter MRI: Scar tissue abutting L pudendal.
Hibner consult 10/11 w/ plan: 2 mo. PT
No meds work for me
PRF X 3 times in Denver ( was pain free for 5 months after second)
Re: New User/Prolapsed Colon/PNE
Dear curliegirlie,
I'm soooo sorry to read what you are going through. I want to tell you that I am in a similar situation. I have a PN and many other medical problems from my vaginal delivery too. I also had a 4th degree laceration and I also have a fecal incontinence. I can feel with you, how bad it is for a young woman. I also had a lot of surgeries, a rectosigmoidopexy, pudendal surgery and spinal surgeries. Before the pudendal surgery, I also had lots of pain with sitting, standing, walking. There was a feeling of a strong tension in my genital area because of the entrapment of the pudendal nerve. I mostly left my house only for doctor's appointments. Best for me was lying, lying, lying. And that is so sad when you used to live a very active life. At that time I feel better, because of the pudendal surgery one year ago, but I'm not cured and until now unable to work. I know, how sad that life is and what can happen with your relationships. The family of my husband can not understand, what horrible pain the PN makes and how disabling it is. They are talking bad about me, when I lie on the sofa instead of caring for my child. That's hurtful. I still have my husband and I still have a few friends, who are trying to understand my situation and who are willing to visit me at my house (and on my sofa!), but how much longer?
You see, I can understand your situation very well. Unfortunately I live in Germany, otherwise I would visit you at once!
It is so much helpful to have another people in this forum, who can understand our situations.
Hopefully you will find the right doctor to treat you.
My thoughts are with you. You are not alone.
Love,
Anne
I'm soooo sorry to read what you are going through. I want to tell you that I am in a similar situation. I have a PN and many other medical problems from my vaginal delivery too. I also had a 4th degree laceration and I also have a fecal incontinence. I can feel with you, how bad it is for a young woman. I also had a lot of surgeries, a rectosigmoidopexy, pudendal surgery and spinal surgeries. Before the pudendal surgery, I also had lots of pain with sitting, standing, walking. There was a feeling of a strong tension in my genital area because of the entrapment of the pudendal nerve. I mostly left my house only for doctor's appointments. Best for me was lying, lying, lying. And that is so sad when you used to live a very active life. At that time I feel better, because of the pudendal surgery one year ago, but I'm not cured and until now unable to work. I know, how sad that life is and what can happen with your relationships. The family of my husband can not understand, what horrible pain the PN makes and how disabling it is. They are talking bad about me, when I lie on the sofa instead of caring for my child. That's hurtful. I still have my husband and I still have a few friends, who are trying to understand my situation and who are willing to visit me at my house (and on my sofa!), but how much longer?
You see, I can understand your situation very well. Unfortunately I live in Germany, otherwise I would visit you at once!
It is so much helpful to have another people in this forum, who can understand our situations.
Hopefully you will find the right doctor to treat you.
My thoughts are with you. You are not alone.
Love,
Anne
Re: New User/Prolapsed Colon/PNE
Hello Curlie-girl,
You sound like a very brave woman having gone through all you have and I can still hear the fight in your voice as you are searching for answers. I'm am sorry for all that has happened to you and pray that you will be able to find the right treatments that will help you now.
If you keep reading on the forum you will probably discover that quite a few people have gone for a 3T MRI from Dr. Hollis Potter in NYC in order to get more specific information on what's going on with the pudendal nerve and where any possible entrapments might be. You might check on whether your insurance would be willing to pay for this. From all I've heard from people who have been to Dr. Potter, it is money well spent.
With your case being as complex as it is from all of the previous surgeries, if at all possible you might want to get more than one opinion from some PN experts before undergoing another surgery. Also, check out the list of specially trained physical therapists on our website -- http://www.pudendalhope.org/node/63.
Hugs,
Violet
You sound like a very brave woman having gone through all you have and I can still hear the fight in your voice as you are searching for answers. I'm am sorry for all that has happened to you and pray that you will be able to find the right treatments that will help you now.
If you keep reading on the forum you will probably discover that quite a few people have gone for a 3T MRI from Dr. Hollis Potter in NYC in order to get more specific information on what's going on with the pudendal nerve and where any possible entrapments might be. You might check on whether your insurance would be willing to pay for this. From all I've heard from people who have been to Dr. Potter, it is money well spent.
With your case being as complex as it is from all of the previous surgeries, if at all possible you might want to get more than one opinion from some PN experts before undergoing another surgery. Also, check out the list of specially trained physical therapists on our website -- http://www.pudendalhope.org/node/63.
Hugs,
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.
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curliegirlie74
- Posts: 5
- Joined: Tue Aug 23, 2011 4:14 am
- Location: NW Indiana, USA
- Contact:
Re: New User/Prolapsed Colon/PNE
Thank you all so much for all your kind words of support! Since I last wrote in my insurance company denied the Lyrica and they switched my medicine to Gabapentin 100 mg 3 times a day and after 7 days take 3 pills 3 times a day. I must say, I don't have much of an appetite because of the pain factor so these pills are really getting to me and making me extremely loopy, so it's hard to have a clear mind to be able to even sit and write this.
Real fast update, I went & seen my PT yesterday (Friday) and all she did was a simple/soft pelvic exam, checked my legs for strength, checked over my muscular & spine and did some type of electro stimulation to help my nerves to stop sending the pain signals to my brain. As I was driving home I had the most awful lightning bolt shock that went straight to my left foot on top of my last three toes, it was just for a minute but that was the first time I have ever felt that in my life! Now today I am extremely sore from head to toe and feel as though she beat me up instead of checking me out, lol! I can tell one thing for sure, these next few weeks are going to be very challenging only taking the Gagapentin and doing therapy. Last night I didn't fall asleep till after 5:00 a.m. because the pain was so awful it hurt in any way I tried to lay and today I'm still in that same shape. She said my pelvic muscles were extremely tight, that I'm having trouble in the Alcock's canal area and that I am probably one of the most severe cases she's ever seen that it would take months of PT before I started to feel some relief. That it took 6 years to feel this bad and it would take a while to unravel all the damage that has been done to my body. Thursday I go see the other Dr. in Chicago for the nerve test to help determine it actually is the PN (which my PT & myself are sure it is) and then PT again on Friday. For the next few weeks I'll be going once a week as she's the only pelvic PT in our area and is fully booked but after that she wants to see me at least 2-3 times a week depending how much I can tolerate.
I also figured out I most likely have psoriatic arthritis to top it off. My Mom has had a severe case of this since her 30's as did her Grandmother & Mother. So I started noticing some changes in my toenails a few years ago and kinda just brushed it off as maybe my heels were a lil to tight in the toes and that had an effect on my toenails. But after really looking I started noticing the color changes, the pits, the way they were growing oddly. So I called my Mom and asked her how old she was when she first started noticing her symptoms of psoriatic arthritis and she said she was in her 30's and then I asked her where did she first notice her pain was and she said it was in her back. So that really got my mind working and I thought back to 2007 when my friend had a Gold Canyon party and the woman had the spa line but I didn't want her doing the treatments on me because I had this awful rash/blister on the palms of my hands and didn't know what in the world it was. I was under a great amount of stress at that time in my life so I just assumed it was from that. After reading about psoriatic arthritis I saw that was also a symptom. So Monday I'm going to call a rheumatogist and get an appointment to have my blood checked out.
With that idea I was really depressed, I get the double whammy! Back pain from PN/PNE & psoriatic arthritis! There I go feeling sorry for myself again, I try hard not to be the victim in all of this. I know a lot of you on this forum have also been through the ringer and back and are still here to build the rest of us up and tell us your stories and breakthroughs.
Thank you so much for being such a wonderful group! I don't know where I would have turned without all of you!!!
I promise in the next few days I'll take my time to answer everyone's post's the best I can, my mind is in such a fog and it honestly hurts to sit and type this.
Many special Blessings to all of you!!!
Real fast update, I went & seen my PT yesterday (Friday) and all she did was a simple/soft pelvic exam, checked my legs for strength, checked over my muscular & spine and did some type of electro stimulation to help my nerves to stop sending the pain signals to my brain. As I was driving home I had the most awful lightning bolt shock that went straight to my left foot on top of my last three toes, it was just for a minute but that was the first time I have ever felt that in my life! Now today I am extremely sore from head to toe and feel as though she beat me up instead of checking me out, lol! I can tell one thing for sure, these next few weeks are going to be very challenging only taking the Gagapentin and doing therapy. Last night I didn't fall asleep till after 5:00 a.m. because the pain was so awful it hurt in any way I tried to lay and today I'm still in that same shape. She said my pelvic muscles were extremely tight, that I'm having trouble in the Alcock's canal area and that I am probably one of the most severe cases she's ever seen that it would take months of PT before I started to feel some relief. That it took 6 years to feel this bad and it would take a while to unravel all the damage that has been done to my body. Thursday I go see the other Dr. in Chicago for the nerve test to help determine it actually is the PN (which my PT & myself are sure it is) and then PT again on Friday. For the next few weeks I'll be going once a week as she's the only pelvic PT in our area and is fully booked but after that she wants to see me at least 2-3 times a week depending how much I can tolerate.
I also figured out I most likely have psoriatic arthritis to top it off. My Mom has had a severe case of this since her 30's as did her Grandmother & Mother. So I started noticing some changes in my toenails a few years ago and kinda just brushed it off as maybe my heels were a lil to tight in the toes and that had an effect on my toenails. But after really looking I started noticing the color changes, the pits, the way they were growing oddly. So I called my Mom and asked her how old she was when she first started noticing her symptoms of psoriatic arthritis and she said she was in her 30's and then I asked her where did she first notice her pain was and she said it was in her back. So that really got my mind working and I thought back to 2007 when my friend had a Gold Canyon party and the woman had the spa line but I didn't want her doing the treatments on me because I had this awful rash/blister on the palms of my hands and didn't know what in the world it was. I was under a great amount of stress at that time in my life so I just assumed it was from that. After reading about psoriatic arthritis I saw that was also a symptom. So Monday I'm going to call a rheumatogist and get an appointment to have my blood checked out.
With that idea I was really depressed, I get the double whammy! Back pain from PN/PNE & psoriatic arthritis! There I go feeling sorry for myself again, I try hard not to be the victim in all of this.
I know a lot of you on this forum have also been through the ringer and back and are still here to build the rest of us up and tell us your stories and breakthroughs. Thank you so much for being such a wonderful group! I don't know where I would have turned without all of you!!!
I promise in the next few days I'll take my time to answer everyone's post's the best I can, my mind is in such a fog and it honestly hurts to sit and type this.
Many special Blessings to all of you!!!
1 childbirth w/ a 4th degree laceration, repaired in the birthing room, no ultrasound @ 6 wk. checkup in 2001. 2005 After many Dr. visits misdiagnosed, fecal incontinence, 2 colon surgeries, severe/chronic low back pain, numbness, tingling, burning, itching and the list goes on. My colon/rectal surgeon did a PNMLT test and a rectal EMG on me which determined there was nerve damage which he diagnosed as bilateral pudendal neuropathy.
Re: New User/Prolapsed Colon/PNE
Just to say, regarding psoriatic arthropathy - the usual rheumatology blood tests will not detect it, this one is seronegative. In fact there is no definitive test for it. The ridging and pitting of the nails which you mention is one of the symptoms, but other things can cause this as well. The pain does often start in the sacrum though.
I do hope that you don't have it - my husband was unable to walk for several years due to this condition. He is much improved now, due to methotrexate.
I do hope that you don't have it - my husband was unable to walk for several years due to this condition. He is much improved now, due to methotrexate.
Re: New User/Prolapsed Colon/PNE
It's so hard when you can't sleep because you don't get a break from the pain. Can your docs prescribe some pain medication or sleep aids so you you can at least get some sleep? I found that to be really important when I was going through the worst of PNE because it starts to mess up your mind if you never sleep.
I hope you will have some good luck with PT.
Violet
I hope you will have some good luck with PT.
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.