my story
my story
hi everyone its been along journey 4 me this past year i had my beautiful baby girl in may /11 vaginal delivery with no epidural 1 small outside 1st degree tear was in labor 4 hrs and pushed her out in 15 mins i was givin my baby immediately 2 nurse her and everything seemed wonderful well at 8 wks post partom is when the nightmare begin i noticed i was having frequency with out pain for a wk i didnt pay much mind 2 it but took a pregnancy test which was neg the nxt wk i then stared 2 feel a uti burn so i called in for antibiotics when the pain didnt go away i was referred to a uro who did a cystocopy bladder normal ultra sound of bladder and basic cultures all neg ,,i then started to have outside genital burning and sharp searing pain that starts at the vulva and ends where my thigh begins in groin i was referred to infection doc really hopeful he could find an uncommon bacteria and cure me he only tested me for stds and all neg sent me on way i then consulted a neuro to see if any nerves are the issue he did a peripheral workup which im waiting results on my uro thinks possible ic but then i would have 2 separate issues as ic dosent have genital pain i have tried the diet but must admit i cant do it long enough to tell if it works its very hard i also have low back pain and notice my vulva pain can b one sided to the right my symptoms seem to b changing as i now dont feel uti like pain anymore but a constant vulva burn with sharp shooting and searing pain that comes and goes ,a feeling that i always have to urinate and push to empty bladder,which i try not to do and bladder pain that is felt high in the pelvic area sharp and burning on and off for an hr or so everyday ,sometimes the opening of vagina will burn also ,my daily pain levels range from 2 -7 pain gets worse at night and i dont notice pain difference when i sit sometimes it hurts a lil more but not intolerable i still perform all daily life activities and work full time this is very hard for me and im considering cuttin back a day at work sex is painful but tolerable i need to get to the root of this problem so i get treated properly im going to ask neuro if i can be tested for genit femoral ,illiguinal illigunal hypogastric and a few others to rule out im not sure if the work up has already done this either i go back the 30th im also in pelvic floor therapy 12 wks and 3 wks in im not feeling better but a lil worse ! i read this is normal with pt and am going to continue im really scared i will b stuck like this its been so long and i have to do all my own research and ask docs or they will just shrugg there shoulders at me ! i also walk everyday and do slow paced jogging and situps which i read can b bad for pn .i also have pcos and really would like to try an have another child one day im 26 and hubby 29 im a nurse aid and he is a business owner ,im to young to b in pain every day i try an stay positive and pray often i know it could b worse and i keep my quality of life as high as possible i sit at night with ice which is my best friend right now lol and dont wanna hang with friends much though ifind it hard to talk to people about this becuse of the area i feel pain i cant exactly tell coworkers yea my vagina been killin me latly ! i really need support my hubby is insensitive sometimes which makes sex hard cuz he doesnt listen to me he is kind hearted but dosent really understand the constant pain im in .so to wrap all this up do u guys think i possibly have pn ? can pn b cured after a year .? im currently looking into seeing a pn doc in my area which is new london CT and getting tested . i dont want pain meds and would rather try the natural approach so im just doing ice ,trying not to sit much and sitting on a pillow ,my meds are vesi care ,uribel as needed ibuprofen as needed and metformin for pcos i really appreciate u reading such a long post and taking the time to give me advice thanks and wishing everyone pain free days !
Re: my story
Hi there, hope4eva and welcome to HOPE!
Congrats on your baby girl! Wow - almost a year old, already! I'm sorry you're having such a hard time. I admire your proactive approach to trying to find out what's wrong. I can only imagine how difficult this is with a baby, trying to work full time and get through every day life.
Warm regards,
Karyn
Congrats on your baby girl! Wow - almost a year old, already! I'm sorry you're having such a hard time. I admire your proactive approach to trying to find out what's wrong. I can only imagine how difficult this is with a baby, trying to work full time and get through every day life.
Could you please describe what kind of peripheral work up you had and what type of Neuro MD you saw? It seems you've done a bit of homework about PN(E) and other pelvic neuropathies. Good for you! What kind of PT are you doing?hope4eva wrote:i then consulted a neuro to see if any nerves are the issue he did a peripheral workup which im waiting results
Warm regards,
Karyn
Ultra Sound in 03/08 showed severely retroverted, detaching uterus with mulitple fibroids and ovarian cysts.
Pressure and pain in lower abdomen and groin area was unspeakable and devastating.
Total lap hysterectomy in 06/08, but damage was already done.
EMG testing in NH in 04/10 - bilateral PN and Ilioinguals
3T MRI at HSS, NY in 09/10
Bilateral TG surgery with Dr. Conway on 03/29/11. Bilat ilioinguinal & iliohypogastric neurectomy 03/12. TCD surgery 04/14.
Pressure and pain in lower abdomen and groin area was unspeakable and devastating.
Total lap hysterectomy in 06/08, but damage was already done.
EMG testing in NH in 04/10 - bilateral PN and Ilioinguals
3T MRI at HSS, NY in 09/10
Bilateral TG surgery with Dr. Conway on 03/29/11. Bilat ilioinguinal & iliohypogastric neurectomy 03/12. TCD surgery 04/14.
Re: my story
im doing pelvic floor therapy and this makes me worse but i heard it gets better the neurologist i see is a basic one with no knowledge on pudendal nerve and he deals with more common causes of neuropathy i will probally switch to a doc who can access my pelvic pain better but am going to ask him if he can help me rule out certain nerves 1st and if not ill do my best to find a neuro who can the workup is a basic one thats why im not sure if certain nerves were alredy checked or not he di an emg test on my nee ,a whole panel of blood work with every vitamin deficiency lyme disease diabetes thyriod and an mri of back lumber spine and mri of my brain im awaiting all results and go back the 30th yes this is very hard and i get discouraged often but i know if i dont take charge i will not get better do u think i could possibly have pn ? is it worth getting checked i will have to commute at least 3 hrs there and 3 hrs back as the closet docs are conway in NH and potter in Manhattan conway takes my insurance im not sure about potter .thanks for ur reply and any advice u have honey ttyl
Re: my story
Hi: Some of the best advice i got was from a physical therapist who said "take drugs!!" I had a prescription for Elavil and hadnt taken it yet. I am sooo glad i did -- you don't need to suffer. Even a low dose of 10mg makes a huge difference!! Also, i read a book called "explain the pain". It explains how Neuropathic pain -- once it gets started -- is hard to stop. Drugs help stop the neurological pain pathway from getting too strong (i think i am explaining this correctly). My symptoms are similar to yours and i dont know if i have PN yet. Physical Therapy really helps -- but you need to make sure the person knows what they are doing and learn how to do it to yourself. I also really like two books: one by Amy Stein and one by Isa Herrera -- they both are PTs and talk about IC, Vulvadynia and other issues.
prolonged sitting summer -- Vulvar Burning, Vulvadynia, Urinary Frequency, Lower Back Pain, Numbness in Foot, Pain when sitting, Hip Pain
1/12 90% Better after Pelvic Floor PT and 10 mg of Elavil
3/12 Potter MRI
4/12 MRI showed Labral Tears in both hips
4/12 Hip Injection with Dr Jordon -- some improvement
7/12 FAI and Labral repair Hip Surgery, Dr Coleman, HSS, 10/12-3/13 99% better!
3/13 Flared - present,
7/14 Ilioinguinal nerve block positive
1/12 90% Better after Pelvic Floor PT and 10 mg of Elavil
3/12 Potter MRI
4/12 MRI showed Labral Tears in both hips
4/12 Hip Injection with Dr Jordon -- some improvement
7/12 FAI and Labral repair Hip Surgery, Dr Coleman, HSS, 10/12-3/13 99% better!
3/13 Flared - present,
7/14 Ilioinguinal nerve block positive
Re: my story
Hi,
Your symptoms do sound pudendal in nature. By best advice to you is to keep your appointment with the Neuro you saw to obtain the results of your tests. Also, get copies of those test reports (MRI, bloodwork, EMG, office notes). Not quite sure how an EMG of your knee would explain pelvic pain. If it were me, I would not request further workup from this doctor. If you suspect pudendal or any other pelvic nerve problems, it would be best to see someone who specializes in this area. Where Dr. Conway is the closest to you, I think you may benefit much more by calling his office to schedule a phone consultation (603-883-3365). After speaking with you, if he feels your symptoms may be pudendal, he'll schedule you for an EMG and office visit for the same day.
May I ask - why the MRI of the brain???? And .....
Best,
Karyn
Your symptoms do sound pudendal in nature. By best advice to you is to keep your appointment with the Neuro you saw to obtain the results of your tests. Also, get copies of those test reports (MRI, bloodwork, EMG, office notes). Not quite sure how an EMG of your knee would explain pelvic pain. If it were me, I would not request further workup from this doctor. If you suspect pudendal or any other pelvic nerve problems, it would be best to see someone who specializes in this area. Where Dr. Conway is the closest to you, I think you may benefit much more by calling his office to schedule a phone consultation (603-883-3365). After speaking with you, if he feels your symptoms may be pudendal, he'll schedule you for an EMG and office visit for the same day.
May I ask - why the MRI of the brain???? And .....
Who told you that?hope4eva wrote:im doing pelvic floor therapy and this makes me worse but i heard it gets better
Best,
Karyn
Ultra Sound in 03/08 showed severely retroverted, detaching uterus with mulitple fibroids and ovarian cysts.
Pressure and pain in lower abdomen and groin area was unspeakable and devastating.
Total lap hysterectomy in 06/08, but damage was already done.
EMG testing in NH in 04/10 - bilateral PN and Ilioinguals
3T MRI at HSS, NY in 09/10
Bilateral TG surgery with Dr. Conway on 03/29/11. Bilat ilioinguinal & iliohypogastric neurectomy 03/12. TCD surgery 04/14.
Pressure and pain in lower abdomen and groin area was unspeakable and devastating.
Total lap hysterectomy in 06/08, but damage was already done.
EMG testing in NH in 04/10 - bilateral PN and Ilioinguals
3T MRI at HSS, NY in 09/10
Bilateral TG surgery with Dr. Conway on 03/29/11. Bilat ilioinguinal & iliohypogastric neurectomy 03/12. TCD surgery 04/14.
Re: my story
So sorry for your suffering....!
Karyn - I was also told to do MRI of the brain... drs kept focusing on my tailbone pain - not caring I said a million times it's radiating from the rectum. Anyways MRI of the brain is to rule out MS.
I also had CAT/CT scan of the chest. I asked my dr why & she said she never had anyone on pain meds so strong like this before & honestly thought their might be cancer in the body. All a bit crazy (esp. if u c my earlier post today of what a pelvic floor dr 'found'!
April 2011 - Woke up one morning with sudden low coccyx pain and horrible rectum pressure with feeling of foreign object inside. Horrific pain for one week. Pain (was more of a dull ache) then came every ten days or so, lasting approx. 3 days. Annoying, but did not stop life. November 2011, BOOM. Pain was so bad ran to E/R. Months of seeing about 100 doctors, in hospital 7 times. Never any mention of the pelvic area. Never once. Had numerous gyne/urogyne exams. Only focus was on coccyx pain, despite me saying pain was in rectum, radiating to coccyx. Pain level 10 most of time. Completely incapacitated. February 2012 vaginal pain joined in. Extreme discomfort. Sharp random pains all over. Deep inside vagina very sensitive. Entire area feels like it's being beaten with hammer. Vulva area just in pain. Hurting so much. :-( Was recently told PNE by 3 doctors. Meet 100% of Nantes Criteria. *** Was taking up to 150mg morphine day + Oxycontin. Not helping. Now on liquid oxycodone, up to 100cc/50mg a day taking edge off, Lyrica up to 350 currently, starting methadone this week.
Karyn - I was also told to do MRI of the brain... drs kept focusing on my tailbone pain - not caring I said a million times it's radiating from the rectum. Anyways MRI of the brain is to rule out MS.
I also had CAT/CT scan of the chest. I asked my dr why & she said she never had anyone on pain meds so strong like this before & honestly thought their might be cancer in the body. All a bit crazy (esp. if u c my earlier post today of what a pelvic floor dr 'found'!
April 2011 - Woke up one morning with sudden low coccyx pain and horrible rectum pressure with feeling of foreign object inside. Horrific pain for one week. Pain (was more of a dull ache) then came every ten days or so, lasting approx. 3 days. Annoying, but did not stop life. November 2011, BOOM. Pain was so bad ran to E/R. Months of seeing about 100 doctors, in hospital 7 times. Never any mention of the pelvic area. Never once. Had numerous gyne/urogyne exams. Only focus was on coccyx pain, despite me saying pain was in rectum, radiating to coccyx. Pain level 10 most of time. Completely incapacitated. February 2012 vaginal pain joined in. Extreme discomfort. Sharp random pains all over. Deep inside vagina very sensitive. Entire area feels like it's being beaten with hammer. Vulva area just in pain. Hurting so much. :-( Was recently told PNE by 3 doctors. Meet 100% of Nantes Criteria. *** Was taking up to 150mg morphine day + Oxycontin. Not helping. Now on liquid oxycodone, up to 100cc/50mg a day taking edge off, Lyrica up to 350 currently, starting methadone this week.
Re: my story
Hi Eva,
Yes, there is hope even after a year. It may not mean a cure but there is a very good chance for you to get significantly better.
Just make sure that with PT the therapist is trained in treating people with PNE. Sometimes the treatments for pelvic floor dysfunction can actually make you worse -- especially if they are having you do strengthening exercises such as kegals. These are contraindicated for people with PNE. Also internal myofascial release can cause major flare-ups for people with a nerve entrapment.
I'm with you on the ice. It was my best friend for several years and like many of the women around here, I used it internally vaginally also. You can freeze water balloons or condoms and insert them. Some people use ultrasound gel instead of or a dilution of alcohol. But I agree with Beverly that medications can be very helpful.
Best,
Violet M
Yes, there is hope even after a year. It may not mean a cure but there is a very good chance for you to get significantly better.
Just make sure that with PT the therapist is trained in treating people with PNE. Sometimes the treatments for pelvic floor dysfunction can actually make you worse -- especially if they are having you do strengthening exercises such as kegals. These are contraindicated for people with PNE. Also internal myofascial release can cause major flare-ups for people with a nerve entrapment.
I'm with you on the ice. It was my best friend for several years and like many of the women around here, I used it internally vaginally also. You can freeze water balloons or condoms and insert them. Some people use ultrasound gel instead of or a dilution of alcohol. But I agree with Beverly that medications can be very helpful.
Best,
Violet M
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: my story
the mri was to rule out ms as well im going to have this neuro fax my info to a few others that can at least test other nerves to rule out .does every neurologist able to test illiguinal hypogastric and gentifemoral and how do they test for this ? Also it seems i have new symptoms sharp abdominal pain like nifes cutting and spotting on and off i normally have to induce a period with pcos so its really wierd thinking of following up with ob as well but the last thing i want is laproscopy ugh that can contribute to my pelvic pain .my therapist does know a lil bit about pn but she has not treated alot of people with it im not sure how much she knows she told me not to kegal much but during therapy had me do a few im not sure how much she will help me but im hopeful i will do my best to learn the homework with that my insurance only covers 12 wks so i need to learn myself .Im really trying to stay away from the meds i have insulin resistance and cant gain wt im still trying to get the rest of the baby wt off 15 pounds to go woo hoo !i gained too much during pregnancy and already lost 25 of it so was so scared to take the lyrica as wt gain is common if the pain gets bad enough worsens i may consider but for now im looking into alternative treatment and am going to start weekly acupuncture for a lil while .im terrified of it getting worse and really just need to figure this out i could live with daily pain if i can get my levals to lower than a 3 on daily basis right now by bed time im at a 7 and i work 3rd shift so this is awfully hard .oh i did call conway and he will b calling me back to consult will he rule out other causes as well or is he just pn ? i would like to rule out pelvic congestion how would i do that ? i can make it up to conway but it will take a wk or so of planning thru work and stuff and cant go up there more than every month or so i found out my insurance covers him so thats a plus ! thanks i really appreciate ur replies !
Re: my story
I really don't know if a general neurologist is able to test pelvic nerves. I saw one a few months ago that told me "he doesn't believe in ilioinguinal neuralgia", and yet ....
I also recently saw a Physical Medicine "Specialist" who told me there's no way to do EMG testing on pelvic nerves, including the ilioinguinals. I handed her my EMG report
and she freaked out saying, "I do EMG's all the time and I can't do it. How is this possible???" Of course, I directed her to Dr. Conway but she was still unconvinced. She merely glanced at my report and then handedd it back to me.
Honestly, if you suspect PN or other pelvic neuropathies and are anxious for diagnosis, you need to see someone who is familiar with this field. Congrats on taking your first step with Dr. Conway! He'll be able to test the PN, ilioinguinal and obturator nerves.
As far as the pelvic congestion is concerned, I don't know if that can picked up on 1.5T MRI. Anyone? I do know that Dr. Potter is capable of dectecting it.
Great news about your insurance covering him! And congratulations on your weight loss!
I also recently saw a Physical Medicine "Specialist" who told me there's no way to do EMG testing on pelvic nerves, including the ilioinguinals. I handed her my EMG report
and she freaked out saying, "I do EMG's all the time and I can't do it. How is this possible???" Of course, I directed her to Dr. Conway but she was still unconvinced. She merely glanced at my report and then handedd it back to me.
Honestly, if you suspect PN or other pelvic neuropathies and are anxious for diagnosis, you need to see someone who is familiar with this field. Congrats on taking your first step with Dr. Conway! He'll be able to test the PN, ilioinguinal and obturator nerves.
As far as the pelvic congestion is concerned, I don't know if that can picked up on 1.5T MRI. Anyone? I do know that Dr. Potter is capable of dectecting it.
Uhm ... you'll have plenty of time for trip planning. Generally speaking, it's usually a 4 - 6 week wait time to see him. He's also very accomodating with travelling patients and makes every effort to work with you to minimize trips. Have you had any nerve blocks yet? Is there someone in your area that could do them?hope4eva wrote: i can make it up to conway but it will take a wk or so of planning thru work and stuff and cant go up there more than every month or so i found out my insurance covers him so thats a plus !
Great news about your insurance covering him! And congratulations on your weight loss!
Ultra Sound in 03/08 showed severely retroverted, detaching uterus with mulitple fibroids and ovarian cysts.
Pressure and pain in lower abdomen and groin area was unspeakable and devastating.
Total lap hysterectomy in 06/08, but damage was already done.
EMG testing in NH in 04/10 - bilateral PN and Ilioinguals
3T MRI at HSS, NY in 09/10
Bilateral TG surgery with Dr. Conway on 03/29/11. Bilat ilioinguinal & iliohypogastric neurectomy 03/12. TCD surgery 04/14.
Pressure and pain in lower abdomen and groin area was unspeakable and devastating.
Total lap hysterectomy in 06/08, but damage was already done.
EMG testing in NH in 04/10 - bilateral PN and Ilioinguals
3T MRI at HSS, NY in 09/10
Bilateral TG surgery with Dr. Conway on 03/29/11. Bilat ilioinguinal & iliohypogastric neurectomy 03/12. TCD surgery 04/14.
Re: my story
im not sure if anyone around here will do nerve blocks but know i only have reg neurologists its good to know conway can help me with other nerves do u know if he can detect gentifemoral as well ? at least he can help with the others i a havent had nerve blocks im hoping if we can figure out what nerves r involved blocks will b the next step if potter excepts my insurance i can see her as well my ob may also b able to diagnosis i think its a special mri though right ?