Fighting PNE: March 2012

Many have asked to hear a history about what I've been through in my journey. I will attempt to make it clear here, so that I can be of help to others searching for victory over illness and symptoms.

I got pregnant with my daughter in December 2007. It was very easy to get pregnant. I tried only once and was successful. I found out I was pregnant on January 1, 2008. During my early pregnancy, I had to see a high risk OB because I was taking an antidepressant (I had been taking this since age 17 when I struggled with an eating disorder. I tried many times to go off it, but was unsuccessful. The eating disorder ended (praise God) but I still needed the low dose.) I had many ultrasounds. No one said anything abnormal. Everything looked great. During my pregnancy I noticed "hemorrhoid" like symptoms on the left side. Mentioned this to the OB and he said "well, it's rare to have a hemorrhoid on one side only, and you don't really have a hemorrhoid, but I will write you a script for a cream." I noticed that my baby would stay nice and snuggled up on the left side of my uterus. In all the ultrasounds, the techs would always comment how "snug and cozy" she was on that left side, with her growing skull burrowed into the lower left quadrant of my uterus. I never noticed her rolling around in my uterus. She would just poke an arm out here and there, but always on the left side. At about 7 months, the OB said she presented transverse (lying sideways). I was so freaked out because I didn't want a C section. As pregnancy went on, I noticed she was moving less and less. Went for an ultrasound at about 34 weeks and she was A-OK, just snug in there. I would feel her skull so low in that left lower quadrant, nice and low. Well not nice. I worked during the entire pregnancy as a Vocal Director at a Performing Arts Academy and directed many musicals, taught lessons, summer camps, etc. I was very active, walking hills, swimming in my pool on hot California nights after work. She was born on her due date. I started laboring at 4pm that day, went to the hospital by 530pm, walked around until I couldn't take the contractions any more, and via phone the doctor conceded to giving me the epidural when I was 5cm dilated. I was now at peace and rested and they wheeled me to the birthing suite where I just slept and waited. Husband slept and mom slept in the room with me. At about 1030pm I felt a pop despite the epidural (there was no pain, just a pop) and I asked my mom who is a nurse to check and see if my water broke. Well yes, it did. The labor and delivery nurse came in and verified that I was already dilated to 1ocm. Baby coming fast!!! She calls doctor and then comes back and said lets do some test pushes. I am feeling nothing but pressure. I push and my husband sees baby's hair and says, okay, no more test pushing! The doctor isn't here yet! I stop test pushing and vomit (who knows why). Doctor arrives at 1150pm. Baby let loose some meconium so green is oozing from me. Doctor uses vacuum extraction as I am on my third push... performs a fast midline episiotomy...boom, she's out. Low apgar from inhaling meconium, so respiratory therapists are all over her. I see her and she's whisked away to get oxygen. Husband goes with daughter. Mom stays with me as I try to deliver placenta. Placenta does not detatch. Mom watches in horror as the doctor has both hands in me up to his elbows ripping my placenta out of my uterine wall. She later describes this as the most gruesome thing she has ever seen. Doctor declares he has removed all of it, and they do whatever they do to clean me up and doctor leaves, goes back to bed I presume, and I am served a turkey sandwich because I'm starved. Ask nurse how baby is. Husband is still with baby she is doing great and getting oxygen. I am wheeled to my room and wait for epidural to wear off. I see my daughter 5 hours later. I have never had a baby before so didn't know what to expect. Lots of pain in my vaginal/perineal area, like it was ripped apart. She nurses and uterine contractions start. Nursing is a challenge. I try very hard. Bleeding like heck from down under. Told this is normal. I get some ice down there. It's now morning and I want to take a shower. I put makeup on and try to get back in the hospital bed and figure out what I'm supposed to do with my little baby. Her little nose is all smashed to the right.... because she was pressed down so far in that lower left quadrant. I wiggle it around. Will it ever be straight? Yes, says the pediatrician. We leave the hospital.

Fast forward. Nursing is hard. I struggle and struggle. It hurts so bad to sit in the rocker. Is this normal? Mom says yes as I had episiotomy. Stabbing pain! Ouch!!! But baby is crying. Must focus on nursing. Time goes on. 5.5 weeks post partum and I'm still bleeding. Feel like I wake up with a UTI. Only have had one UTI in my life up to this point, which was 8 years prior. Take baby to her check up and mention to her pediatrician that I think I have a UTI... bladder pressure, burning, frequency. Says to go to urgent care. I go, and they say yeah blood in urine (mind you I am still bleeding from birthing this kid). Write me a Rx for Bactrim and I'm off. Three days later, no relief from UTI symptoms. Start to panic. Why is this persisting? Go back to urgent care. They do a culture, change my Rx to Keflex (safe for nursing moms). On my way. Three days later, no relief. Baby is six weeks now. I go to my 6 wk post partum check up. I mention to my OB who delivered her that I have UTI like symptoms. He notices swelling in my urethra and prune-sized blood clots (like chunks) coming out of my vagina. Also notices granuloma on episiotomy site. Cauterizes it with silver nitrate. OUCH ouch OUCH! Takes me in for an ultrasound. I empty my bladder just fine. Tech finds retained products of conception: i.e.: HE DIDN'T GET ALL THE PLACENTA. OB calls to get urine culture results: they are negative. Says due to RPOC, that I need a D&C. In the meantime, he refers me to a urologist for a workup as to why I have these urinary symptoms. Retention, burning, hesitation. Urologist looks at me and says what is this??? I said my OB just cauterized my granuloma at bottom of episiotomy with silver nitrate. He comments that it looks "angry" down there. I press him to give me more antibiotics. Changes me to Macrobid and instructs me to use a hot tub because "these things take time." 8 weeks post partum and I have my D&C, done by the OB that delivered my baby. In and out in 15 minutes. I go home and sleep. Bleeding is stopped in two days. Urinary symptoms persist. There is no infection. What is wrong?

I am referred by OB to a second urologist for a different opinion. He checks me for cystocele - none. Post void residual - none. I mention that I always have this pressure and retention feeling. He gives me Oxytrol patch, an Overactive Bladder patch. Safe for nursing mothers. I am on my way.

Symptoms persist and I am losing control. Baby is colicky, I have no sleep, pain in the pelvis... at 9-10 weeks post partum I begin pelvic floor PT. PT notices my left perineal and intra-vaginal area is very sensitive as compared to right. Presses on bladder - ouch. Tender. Tries internal myofascial release. Calls my urologist and suggests possibility of Interstitial Cystitis. I cringe. HOW IN THE WORLD CAN I DEVELOP IC after having a normal bladder? Urologist isn't convinced I have IC, but agrees to schedule me for Cystoscopy and Hydrodistention under general anethesia at the beginning of January. I will be 4 months post partum.

I am desperate for answers. I search the internet in vain for reasons as to why this has happened. I am hysterical, obsessing about getting better, all the while in so much pelvic pain and trying to care for a colicky newborn. Husband is working 90 hours a week. I have no family in CA. I go to a Sunday night church service - and go up for prayer at the end of service. Our church is 5000 plus members. At this service, there are about 500. Many intercessors line the front of the church, waiting to pray. I walk up to a lady I have never seen. She puts her hands on me and says to me "You are a precious daughter in the Lord's sight. God is telling me He wants to heal your nervous system." She knows nothing about me. NOTHING. Not my name, my reason for walking up for prayer, nothing. God wants to heal your nervous system. God WANTS TO HEAL YOUR NERVOUS SYSTEM. January 13, 2009. I write in my journal that God wants to heal my nervous system --- perhaps nerves in the pelvis??? I thank God.

Cystoscopy and Hydrodistension are normal. Bladder fills to 2000ml and only 5% of the bladder wall in one area show petichial hemorrhages. Urologist is stumped. You do not have Interstitial Cystitis. He changes my Overactive Bladder medication to Detrol LA. I stop nursing as I can't handle it anymore. I am in so much agony over what is going on in my pelvis that I need to have a psychiatrist put me on Abilify to help me stop ruminating over this. Abilify is not compatible with nursing. My baby is 5 months old. I visit family in Cleveland, OH. I make an appointment with a female urologist who specializes in pelvic pain at the Cleveland Clinic. She examines me. Takes me history. She says that there is no way I could have IC. She says that ANYONE would have those small areas of pinpoint petichiae on their bladder wall if their bladder was distended to 2000ml. She encourages me to continue with pelvic floor PT. At this point, I have made no progress with PT. She writes me a script for Amitriptyline, 10mg. She switches the Overactive Bladder med to Enablex. It doesn't work. I quit Enablex and stay on Amitriptyline.

I return to CA. I stop going to pelvic floor PT as I am not progressing. I am lost. I figure once and for all I will rule out this diagnosis of Interstitial Cystitis. I travel to San Diego, CA and see Dr. Lowell Parsons, a pioneer in Interstitial Cystitis, and the man who helped to invent Elmiron, the drug for IC. After a 5 minute consultation, he concludes I have IC. Dismisses the opinions of the urologist at the Cleveland Clinic and the one in my hometown in CA. Instructs me to take Elmiron and to start doing bladder instillations of lidocaine, heparin and sodium bicarbonate. Self-cathing. Incredible.

I tell my husband of the news. He is not in agreement. He says I still do not think you have IC. But, if Dr. Parsons says you do, well then, try the Elmiron and do the instillations.

I do instillations. They do not help. The pelvic pain persists. I am unable to have intercourse. Baby is now 8 months. I have not been breastfeeding for 4 months. My period has not returned. I return to the OB that delivered my baby. I mention that my period has not returned. I am not pregnant as I have not had intercourse due to the pelvic pain. The nurse practioner puts me on Provera 10 days to induce a period. This fails. No period. Every month I feel as if I am getting a period, but nothing comes out. What is wrong? My bladder is a mess and now I am mysteriously not getting a period? We move cross-country to PA. Baby is 9 months old.

We go on a cruise. I feel like I have a yeast infection. I take Diflucan for yeast. Lightning zaps of pain in my vagina begin. Burning does not go away, despite 3 Diflucan pills. What is wrong with me?

I come home. I establish myself with a GYN in my new hometown in PA. She says we need to figure out why you have not had a period since giving birth. Baby is now 10 months old. She puts me on Provera again 10 days. No period. Refers me to a Reproductive Endocrinologist. The best in the city of Pittsburgh. I see him. He orders a sonohystogram. I go to radiology and they try to poke the catheter through my cervix to see into my uterus. The radiologist can not get the catheter through the cervix. He says that my cervix is stenosed (scarred over). He says you will need surgical exploration of your uterus. At the same hospital, I see a urologist for my continued bladder symptoms. She says, well you must have IC because the great Lowell Parsons diagnosed you with it. Shoos me out of her office. Peace be with you.

The Reproductive Endocrinologist sets me up for surgery. He will perform a Laparoscopy and Hysteroscopy of my Uterus. At the same time, the urologist will take a peek in my bladder through the cystoscope. During surgery, he finds that my uterus is 40% scarred shut. This is called ASHERMAN'S SYNDROME, and it is a result of the D&C that I had at 8 weeks post-partum for the retained products of conception. It only happens to 1% of women who have had a D&C post partum. He removes the bands of scar tissue in my uterus and over my cervix. Because the blood that was to be shed during my period could not get out, it backflowed into my pelvis and caused endometriosis, which he also burned off. Additionally, he notices a SEVERE uterine abnormality: a subseptate bicornuate uterus. Basically, a heart shaped uterus with a division (septum) down the middle. He removes the septum the best he can. After surgery, he remarks that conceiving and carrying my daughter to term is a verified miracle, as only 12% of women with a subseptate bicornuate uterus can even get pregnant. Most miscarry or their babies are born 4 months early because they grow out of room. That is why my daughter grew so low in my pelvis and hardly moved much. She had to survive. So she burrowed herself at the bottom of my "heart". Her skull pressed against my left pudendal nerve. What is a pudendal nerve....?

Daughter is 1 years old now. Uterus is fixed, I start having periods again. Bladder symptoms persist even though after the cystoscope done during my Lap/Hystero does not convince my new urologist that I have IC. 3 urologists against the great Lowell Parsons. If I do not have IC, WHAT DO I HAVE? I agonize.

At the beginning of 2010, I join the gym. I start the elliptical and I hit it hard. I work out like a fiend. I get more burning in my pelvis. The bladder symptoms increase. No meds are working. I continue to exercise. I run on the treadmill. I notice that I have pain when sitting. Burning and tingling all over my pelvis. Urinary retention to the point I have to press on my bladder to let urine out. I start pelvic floor PT again. She notes incredible spasm at the left obturator internus muscle. What is on the other side of that muscle? The PUDENDAL NERVE IN THE ALCOCK'S CANAL. Burning increases and sitting is difficult. I have stabbing pain. My husband Googles my symptoms and comes up with a website called TIPNA. The International Pudendal Neuralgia Association. He says, "I think you have Pudendal Neuralgia, and possibly a Pudendal Nerve Entrapment." I decide I want to see the best pelvic floor PT, so I start going to the director of Women's PT in Pittsburgh. She prescribes 2x a week pelvic floor PT. I am in agony. I have a knife in my vagina. I have a knife in my anus. I cannot sit. My bladder is a mess. I can't empty it. I lose weight. My daughter is 18 months old. I am in agony. I join Pudendal Hope. It is a forum. I hear about an MRI that can visualize the pudendal nerve and possible entrapments. I read about what the 5 doctors in the great nation of the United States recommend. They recommend Physical Therapy to the pelvic floor. They recommend a CT guided pudendal nerve block. I call the head of neuroradiology at UPMC. He has never done a CT guided PN block. I am the first. He does two blocks at the same time, one at the ischial spine and one at the Alcock's canal (left side only). I am numb. Bliss. I go home. I flare from the steriods. I am in agony. The block was positive: indicative of pudendal nerve entrapment. They do not do the 3Tesla MRI in Pittsburgh so I fly to NYC and have a 3Tesla MRI of the pelvis with and without contrast. Dr. Hollis Potter speaks to me after the 1 hour test. She shows me the images. She says, "your pudendal nerve is entrapped in scar tissue at the base of your pelvis, at the anterior margin of Alcock's canal. I do see bilateral scarring, but the left is 90% worse than the right." (All my symptoms are left sided). She also sees EXTENSIVE PELVIC CONGESTION SYNDROME (huge varicosities in the ovarian veins, pressing on the pudendal nerve.) She recommends that I have ovarian vein embolization to see if that helps the PN pain. I take this back to my PT, and I say, "will any amount of PT remove scar tissue from around my pudendal nerve?" She says, no. I QUIT PT. I am in agony. I cannot sit. I cannot eat. I cannot take care of my child. Bowel movements cause agony. I call and set up an appointment in AZ, with Michael Hibner, MD. He is a surgeon who operate on the pudendal nerve. I also have my ovarian veins coil embolized at my local hospital. The pain persists. The varicosities are not the cause of my nerve pain. My daughter is almost 2. I fly with my husband to AZ. I see Dr. Hibner and his pelvic floor PT, Loretta. Loretta concludes that I will end up in surgery, for surgical decompression of the left pudendal nerve. Dr. Hibner is conservative and wants to try Botox into my left pelvic floor muscles to see if it is just spasms pressing on the nerve. I fly back out to AZ in September 2010 for Botox. The Botox does not relieve my pain. I am scheduled for TransGluteal Pudendal Neurolysis of the left side on November 5, 2010. My gluteus muscle is cut through. My Sacrotuberous ligament is cut. The pudendal nerve is exposed. It is neurolysed along its entire course, from it's roots to the terminal branches. The only area of entrapment was at the entrance to Alcock's canal (the posterior end). However, the nerve was neurolysed along its entire course, regardless. My Sacrospinous ligament is cut and the nerve transposed forward of the ischial spine. The Sacrotuberous ligament is repaired with a cadaver graft. I am closed and a wound vac is put over the wound. An On-Q pain pump is inserted and drips marcaine directly onto the nerve in Alcock's canal. I cannot pee after surgery. I am sent home a week later to PA with a Foley catheter in place. I end up with a horrible bladder infection. I take Cipro, it is cleared. I start walking slowly. I am so weak. I am in so much pain. I start taking oral Valium. After the pain pump is removed after a few weeks, I start taking Lyrica. I cannot sit. I am in agony. There is still so much pain. There is burning in my feet. I stand up and there is foot burning. The showers are tough because my feet burn. Is this due to my unstable pelvis that is recovering? 3 months post op and I finally sit on a cushion to drive to Target, 1 mile away. I have a nanny for my daughter, now age 2. I spend most of my days on the couch in agony. 4 months post op and I venture out to the mall with my friend, on a day that my daughter goes to daycare. (Mind you, I cannot care for her, because I am disabled). I carry a frying pan that I bought. I flare so badly I am on the couch for an entire month, popping Percocet. Nothing helps. I ice and I ice my crotch. I give myself frost-burn. I double the Lyrica dose to 300mg a day. I can't see 5 feet in front of me. It is dangerous to drive. But yet, my nerve is freed right??? I still cannot lift my daughter or care for her. At 8 months post-op, I am still in so much agony and I now develop an intolerance to Lyrica. I am burning from head to toe. My entire body is on fire. I fly to AZ for yet more Botox. This time it will be bilateral Botox. I mention the foot burning and hypersensitivity in the pelvis. Dr. Hibner says we should infuse Ketamine during your Botox procedure and for 4 hours afterwards. I leave the hospital the next day and take a shower and notice the foot burning is gone. I fly home, still in agony. August and September come. My daughter is now 3. I am in so much pain. I still cannot sit. We conclude the Botox is a failure. The foot burning persists, but the pudendal nerve pain is so great that that supersedes the foot burning. I am dying in nerve pain. We conclude that I must still be entrapped. I have always felt in my heart that I was entrapped still, even after the TG surgery. Remember, my MRI said I was entrapped at the base of the pelvis, at the anterior (distal) margin of Alcock's canal. But wasn't that decompressed? So I thought. Alas...

Dr. Hibner wants to help me so bad. He doesn't know to as of yet. It is late September. I cannot live anymore in this agony. We contact Prof. Oskar Aszmann in Vienna, Austria, who tells us via email that I sound like a perfect candidate for a decompression of the pudendal nerve via an anterior approach, at the urogenital diaphragm. We fly to Austria.

I am examined by Prof. Aszmann and a 17mHz ultrasound is performed by his radiologist, Dr. Bodner. The nerve is visualized in a mess of scar tissue. I am in 10/10 pain as he presses on the lateral side of my vaginal wall (left). I go into surgery.

He finds my nerve severely entrapped in scar tissue at the distal Alcock's canal (anterior) and the perineal branches of the pudendal nerve have tried to regenerate into scar tissue, forming a neuroma. The source of my pain. He decompresses the microscopic branches of the pudendal nerve. The nerve and its branches are severely swollen. He decompresses them and removes convoluted dilated veins from around the branches and main trunk of the pudendal nerve. The right side proves normal. I am closed up.

I have been validated. Validation. My nerve was still entrapped. It was entrapped for just over 3 years in a mess of scar tissue that was caused most likely from the episiotomy and manual removal of my placenta at the time of my daughter's birth.

I hug Prof. Aszmann, my dear friend. I fly home. 3 weeks post op I start water walking in the therapy pool at the gym. I want to prevent scar tissue. 4 weeks post op I notice that my legs are burning more. Not just my feet but my legs now. Both legs. Before it was just both feet. Yet, now there are color changes. Huge red rashes appear on both feet and halfway up my calves. The inside and tops of my knees are rashed over. I cannot tolerate water walking anymore. The pudendal nerve pain gets better. I start sitting! I can tolerate a tampon! I can have intercourse!!! Oh my GOD! (((God wants to heal your nervous system)))

I am burning. My body is burning. Why? What is going on? I go to a new pain physician. I am diagnosed with CRPS Type 2 (Complex Regional Pain Syndrome, Type 2, nerve injury). CRPS/RSD can be caused by two things: an initial nerve injury, or trauma to a nerve. The symptoms I exhibit of CRPS only started after my TransGluteal neurolysis. Since patients with CRPS are at more of a risk for the CRPS spreading, they tend to avoid surgery. However, I knew I was still entrapped, so I HAD TO HAVE SURGERY. I HAD to have surgery in Vienna.

I am sent for Ketamine infusions at the Cleveland Clinic. 5 days, outpatient. I am paralyzed. Not only paralyzed in fear, but literally. Hallucinations.... audible voices....agony....

The CRPS pain is gone. No more redness/discoloration/burning in legs or feet. I come back to PA. A week after the infusions are complete and the burning returns. I pray and pray and CLAIM VICTORY AND CLAIM THE PROMISE THAT JESUS GAVE ME. The pudendal nerve pain continues to improve. The burning persists.

I digress. The Lord has given me many promises. I have DECLARED DESPITE THE AGONY THAT I WILL BE COMPLETELY, COMPLETELY AND TOTALLY HEALED FROM EVERYTHING IN JESUS' NAME. I testified before, during and after. I continue to testify. I WILL BE HEALED.

FRIEND, DO NOT GIVE UP. ISAIAH 45:2-3 IS A PROMISE VERSE THAT WAS GIVEN TO ME. It says, "I will go before you and cut through the bars of bronze and break down the bars of iron, so that you will know that the LORD thy GOD, which call you by name has done this. I will give you the treasures that are HIDDEN in the darkness. "

My Lord has chosen to use doctors to bring about my healing. I give GLORY AND PRAISE TO HIM. All wisdom comes from the Lord.

May You continue to be glorified in me, Lord. I KNOW, THAT I KNOW THAT I KNOW, that the healing will BE COMPLETED IN ME. For HE THAT BEGUN A GOOD WORK IN ME WILL COMPLETE IT UNTIL THE DAY OF CHRIST JESUS.

Fighting PNE

Thursday, March 29, 2012

COMPREHENSIVE PELVIC PAIN RETREAT - Donna Carrico WHNP MS 03/29 by PelvicMessenger | Blog Talk Radio

Tuesday, March 20, 2012

Dr. A. Lee Dellon, MD, PhD - Peripheral Nerve Surgeon - LIVE on BlogTalk Radio/ The Pelvic Messenger

Saturday, March 17, 2012

My story

Sunday, March 4, 2012

Help me believe- Kirk Franklin

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