Recovery ,improvement or ongoing pain - Pelvic Pain Suppo...

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Recovery ,improvement or ongoing pain

kalecolbe12 profile image
54 Replies

Hi folks i would just like to get an idea how many people are in each of these catagories of recovery,improvement or ongoing pain...if you wouldn't mind sharing...also has anyone just got pelvic floor dysfunction or pudental neuralgia and what have you tried that worked well for you and how long have you had it? lastly...who has mainly rectal symptoms?answer any ,or all...thanks.just trying to expand knowledge of this thing we suffer from

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kalecolbe12 profile image
kalecolbe12
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Karen1954 profile image
Karen1954

Hi!!! Long time no talk!!! Lol. I use to have pelvic floor dysfunction but now mines all rectal from painful and burning bowel movements!!! Thought my LIS sx and hysterectomy would help more but the ibs got worse due to all the pain meds!!! Going in for a sigmoidoscopy in February!!!!! Feel like my fissure is higher up where no one can see!!! I have seen 7 gi, 4 colorectal doctors, acupuncturist, 2 pelvic floor therapists, nutritionist, dietician, 2 pain management doctors with numerous injections and trigger point injections, uro-gyne, gone to Stanford, hypnosis, therapist and spent SO much money on meds and ointments and supplements!!! U name it I’ve done it!!!! The burning and inconsistent bowel movements has destroyed my life!!! I cannot go and do anything other than go to doctors!!!! I want to live life not just get through day by day!!!! I had sent u a long text to your email but for some reason didn’t go through. I’m SO frustrated!!!! SO depressed as the ibs started in 2012 and the rectal pain in 2015 which is now out of control!!! I wake up every morning feel pressure and burning!! Everyday I wake up which is a good day and thinking I won’t have any burning or whatever but it’s always there!!!! God help me!!!! I keep praying that anyone with illness or problems can find peace and happiness and no pain!!!!! I’m always searching for answers!!! I hope to hear from u soon!!! Take care and happy holidays!!!!💕🎄

kalecolbe12 profile image
kalecolbe12 in reply to Karen1954

Hi Karen... Sorry to take so long to get back to you but with Christmas and everything I've been busy.... So you say you used to have pelvic floor dysfunction but now you only have the rectal symptoms so what do you mean by you used to have pelvic floor dysfunction because it sounds like you still have it rectally which is what I have it's basically limited to the rectal area and yes I have some pain after bowel movements but I will do a sitz bath which helps a lot the one that sits over the toilet and then my cyclobenzaprine helps a lot which is a muscle relaxer...I also have gabapentin if I need it but I haven't tried it yet...I used to have pain for hours after bowel movements but now it's a lot better ..I don't really know why except that I've been doing pelvic floor physical therapy for six months every week and that helped a lot she did mobilization and pudendal nerve glides...unfortunately she moved to Florida now so I'll be starting with another one for about a month to see how I like her ...I read in book a headache in the pelvisit takes up to two years to slowly come out of this but I'm reading about people that have had it for 15 years so I'm not sure what's going on.i do daily stretches too and of course my heating pad🤗 I also have a portable one which I can wear between two pairs of underwear that help if I'm having a hard day.I think I'm going to ask for an MRN of all the nerves to see if there's any pudendal nerve entrapment although my PT said that she thinks it's just pelvic floor dysfunction and I do have some IBS so I'm watching what I eat ...less gluten less dairy.my pastor wants me to have a colonoscopy but I'm terrified it'll start all the spasming over again when I just got it under control somewhat... did you have a colonoscopy? Do you think it's pudental nerve-related for you?will look forward to your reply

Karen1954 profile image
Karen1954 in reply to kalecolbe12

Hi kalecolbe!!!! So nice to hear from u!!!! Well as far as pelvic pain I was diagnosed with levator ani in 2015 after that dumb rectal exam!! That started everything. Tried SO many meds it sent my bowels into a tailspin from constipation to diarrhea. In 2018 I was ok but tried ibs formula which spiraled me out of control and that’s when the fissure started which I’ve now had for 7 months!! After the LIS in September and hysterectomy in October the pain meds sent my spiral even deeper. I was on 7 stool softeners and 7 tsps of lactulose but now it has just started to cause me to have real loose stools which causes the burning in the rectum!!! This kills me!!! I do sitz baths like u and use muscle relaxers but the burning is out of control!!! I did have a colonoscopy in august which actually I felt great after. No burning and no pain!!!! Now I’m back to the intense burning!!!! If the burning would go away I’d be ok. I think. I tried gabapentin which did nothing!!!! I’ve tried SO many meds so now I’m trying to back off of those!!!! I just want to go back to before I took that ibs shit!!! Destroyed my life!!! Haven’t been able to workout or have my grandkids over or go see them!!! It’s been a hell of seven months!!!!! I sit on my heating pad all the time!!!!! What has worked for u? I’m SO glad we have reconnected!!!! Do take care and talk to u soon!!! My best to u!!!!

Karen1954 profile image
Karen1954 in reply to kalecolbe12

No pudendal nerve problems.

anne77 profile image
anne77 in reply to Karen1954

Karen, your situation sounds just like mine! I am soooo much better after several years of doctors (including Mayo, Cleveland Clinic & Johns Hopkins) tests, scans, physical therapy, botox, meds etc. I have learned how to control the IBS which drives my pain. The biggest turning point was finding a Rehab Center center where I get treatment from an occupational therapist who studied under Dr. John F. Barnes who implements myofacial Release Therapy (MFR). I am sooo grateful to have had a Christmas that I actually felt well enough to host brunch for my kids and g-kids!!

Karen1954 profile image
Karen1954 in reply to anne77

Hi Anne!!!! U sound SO much like me!!!! The ibs was ok the first couple of years but after having a rectal exam with a scope where I felt a pop it spiraled into going to colorectal and being diagnosed with levator ani. That’s when the spiral started with meds causing constipation and then trying another which caused diarrhea!!! It was awful!!! Started seeing two pts one who used just exercise and the other balloon manometry to no avail. In may I tried “ibs formula “ which made me poo all day long with soft stools which lasted days even after stopping. That caused my fissure to start!!! So since may or June I’ve had the fissure and then after having LIS sx in September and hysterectomy in October the pain meds totally messed up my bowels. I know what I can eat to keep me pretty regular but the burning high up near internal sphincter is killing me!!! Colo wants me to have a sigmoidoscopy to find out!!! But that’s in February!!!! My stool burns me!!! Just had a stool test but no answers as of yet!!!! My levator has stopped but the burning and feeling of something in my rectum keeps me from living life!!! I found a Myofascial therapist here in Sacramento but would like to know how they treated u. I don’t know if u have read my posts but I have tried EVERYTHING!!!!!!! I will do anything to feel better. I’m SO glad u got to have a nice Christmas with your family!!!! I want to know how u did it!!!! Can’t wait to hear from u!!!!! Please take care and keep in touch!!!

Karen1954 profile image
Karen1954 in reply to anne77

Hi Anne!!! Just talked to a therapist here in Sacramento!! My first appt is February 4 unless she gets a cx. She guarantees I’ll feel better!!!! I’m SO willing to try!!! Thank u so much for letting me know about that!!! God I hope it works!!!! Thank u!!!!

anne77 profile image
anne77 in reply to Karen1954

Hi Karen,

I hope you find some relief soon:) I had that kind of awful burning in my rectum (lessened now by a whole lot) and after been prescribed several different meds (all had side effects and made things worse.) I have been drinking 6oz. water mixed with 1 tsp. baking soda 2-3 times a day and it seems to be helping the acid/burning feeling when I have had a bm or just feel that "something is stuck" feeling! I began seeing this new pt (my third practice) 2x week-- once a week I saw an occupational therapist who does internal release, and another therapist who did external MFR around my tail bone and other sore areas. After a couple months, I only saw the occupational therapist 1x/week and most recently, I just see her 1x every 2 weeks. She actually trained under Dr. John Barnes , but he is pretty old now and resides mainly in Sedona, AZ. The other therapist started in regular pt, and then took several classes in his method of MFR. I have also reduced my stress level, which has been very helpful!! I have not had any surgeries, but when my pain first began a few years ago, the colorectal doctor I saw said it was "probably Levator Syndrome, and that it would probably just go away". I don't know exactly what caused this onset of pain, I can only tell you that I bought a bike and started bike riding, I had a fall on my tailbone, and I was going through an extreme amount of stress at the time! I was diagnosed with Interstitial Cystitis last summer, after being misdiagnosed with several UTIs, given antibiotics, and sent on my way. I follow the suggested IC diet, stay away from certain foods, and I take Prelief (over the counter or on Amazon) if I am enjoying a "trigger" food or beverage (i.e. pasta with red sauce & wine). I know everyone is different, but I hope the MFR pt helps you, as it has helped me:) I hope this makes any sense as I am exhausted from the holidays and entertaining out of town friends! I certainly am not complaining though, I am working on my stamina and so grateful that I am feeling better. I wish you the same for you--good luck:)

kalecolbe12 profile image
kalecolbe12 in reply to anne77

Hi Anne I keep getting you and Karen's posts which is fine because I'm replying to both of you but just wanted to let you know if I reply that's why. best wishes Audrey

Karen1954 profile image
Karen1954 in reply to anne77

Hi Anne!!!! Thank u for all that great info!! I’m thinking of going back to my therapist who did the exercises as it’s been four years since I’ve seen her just to do a refresher. I’m excited about Myofascial tx. She guarantees tx. I’ve had 3 car accidents back in my 20’s and then 3 neck sxs 9-10 years ago. I have slipped on my tile floors a couple of times so we will see what happens. I’m going to try your baking soda trick. The burning is what KILLS me!!!!! Yesterday and today have been hell!! Must have pooped like 10 times each day if not more!!! My rectum is raw!! It just wears on u as u know!!!! I want to exercise and hang with my grandkids!!! I want to enjoy life like we r suppose to!!!! I try not to stress but certain things set me up!!! My mom passed away last year and I miss her like crazy!!! As they say hindsight is 20/20!!! So much in life I would change!!! Does the baking soda really help with the burning? Like I said I’m going to try. Thank u SO very much for all the info. It’s going to help!!!!! I really hope u keep in touch cuz I value your thoughts and if u learn anything else please let me know!!! Take care my new friend!!!! Many hugs to u!!!!

kalecolbe12 profile image
kalecolbe12 in reply to Karen1954

HiKaren it's Audrey this time and yes the baking soda really works I use it too and also get some prelief from Walgreens because that takes the acid out of everything that you eat or drink

Karen1954 profile image
Karen1954 in reply to kalecolbe12

Hi Audrey!!! U know I’ve been asking my doctors , all of them, about the burning!!! I’ve mentioned acidity but no one has any answers!!!! Really!!!! Give me a break!!!

kalecolbe12 profile image
kalecolbe12 in reply to Karen1954

I think you and Anne and I are in a communication loop now so we can help each other

Karen1954 profile image
Karen1954 in reply to kalecolbe12

Oh that’s awesome!!! I just started the baking soda. Prerelief works too? The burning is KILLING me!!!!! I’ve gone like 10 times today and yesterday as I mentioned to Anne and maybe u!!!! Lol. I’m RAW!!!! I’ll try and get some tomorrow if I can leave. My tummy was cramping today which I never do so might have a bug!!! I’m SO glad we can all help each other!!! We need to stick together so we can all get better which sounds like u two r!!!! I keep hoping and praying it does!! This is for the birds!!! How long did u take the baking soda before u saw or felt results? Thank u SO very much for all your info!!! Something had to work!!!! Please keep me posted on how u r doing. Still can’t figure out why my email to u never went through!!! Where do u live? God bless and take care my new friend!!! Hugs to u and Anne!!!

kalecolbe12 profile image
kalecolbe12 in reply to Karen1954

I live in Phx,az

Karen1954 profile image
Karen1954 in reply to kalecolbe12

Oh cool!!! Not in summer!!!! Lol. I’ve been there in summer. I still don’t get why my email to u didn’t go. Weird!

kalecolbe12 profile image
kalecolbe12 in reply to Karen1954

Yeah it's pretty horrible in the summer but we get a good part of the that's decent but being from England originally it was hard to adjust to... Did you say you live in California Karen?

Karen1954 profile image
Karen1954 in reply to kalecolbe12

Lol. U r from England and picked the hottest state? That’s interesting!!!! Of course it’s a dry heat like here! I live in Sacramento ca and it gets hot here but not 120. My ex sister-in-law lives in Arizona but higher up I believe. I had a friend here who moved there and she was a sun lover like we all were when we were younger and she went to Arizona and couldn’t handle it!!!! Lol. So does the prelief really help? I’m going crazy with the burning!!! Went poo this morning and thought this will be a good day and then I kept going and this is just crazy!!!!! Have stopped my lactulose completely so hopefully that’ll help. What a drastic change!!! God help me!!!! Thank u for reaching out!!!! Greatly appreciated!!!! Hugs!!!

kalecolbe12 profile image
kalecolbe12 in reply to Karen1954

Well I came to live here to be with my husband at the time who I met when I was traveling in Germany and he was in the us army so since he lived here that's why I came but I definitely wouldn't have chosen Arizona to come to. We lived for 4 years in San Francisco when he was in dental school and that was my city I loved it there and I had my own business which I do now but still it was just fantastic but of course the cost of living there was outrageous and at least in here in Arizona it's more cosmopolitan now than 38 years ago when I came and it's a decent cost of living.one of my clients is from Sacramento and she loved the movie ladybird I was wondering if you've seen it

Karen1954 profile image
Karen1954 in reply to kalecolbe12

That makes good sense. I mean u need to go where he goes. Lol. San Francisco is too crowded for me and of course the cost of living is insane!!! My sister in law came from Seattle to Arizona too!!! Just tired of the rain and cloudyness!!! What type of business do u have? Is your husband a practicing dentist? I worked in my dentists office for three years until I had neck sx!!! I haven’t seen ladybird. I heard it was good and the star I believe is Greta Gehrig who is from here and just directed little women!!! Can I ask your age? Just curious. I do love the San Francisco giants!!!! Well I’m going to try that prelief as soon as I can get it. It’s so nice talking to u!!! U r a nice person!!!! Take care and talk soon!!! Hope I’m not bugging u!!!

kalecolbe12 profile image
kalecolbe12 in reply to Karen1954

get the power of course you're not bugging me we need to talk to each other to help each other but I am going to go to bed in a minute but I just wanted to do one last reply.. he was my husband I've been married twice and I am 65 but a young 65 ..most people think I'm in my late forties...probably because I'm in the beauty business I am a hair stylist iand i work 2 days a week in my own little business I share a small salon with another girl... He is the father of my two boys aged 31 and 34 and I actually lived by myself bought my own house for 12 years in between marriages....but as you know once you've built the clientele in one place you can't just give that up and move and start all over again because you get used to a certain income so I just stayed in Arizona even though I wanted to go back to San Francisco,however I've gotten used to Arizona now and my boys were raised here and I have good friends of over 30 years now. I do miss my family in England but since I've been here almost 40 years I've made my life here my sister and her family are there and a bunch of my cousins but all of the next generation are gone now parents ,aunts ,uncles and even some of my cousins died younger so I'm very aware of my health... So just to remind you try the baking soda and water it really helps and I saw in another post that quarter teaspoon of psyllium husk helps which I don't know about that ...anyway I'm also reading about ptns foroveractive bladder and it seems like it would help the rectal area too....one person posted this they tried it for that overactive bladder and it helped their rectal symptoms so I'm going to look into it another thing is I also noticed when I take my cyclobenzaprine muscle relaxer it makes my bladder less overactive so obviously the sacral nerve is part of it all and that ptns may help us... I will let you know what I find out.I also started a local little chronic pain group with another girl on nextdoor.com and so we have four members only meet once every two weeks it's really helpful just an idea

Karen1954 profile image
Karen1954 in reply to kalecolbe12

Morning!!!! Thank u for sharing your life story with me!!!! I’m sure u r used to Arizona by now!!! Lol. That’s great I have friends and your business. It takes your mind off of our problem. I have a few friends I talk to but since I’ve had all these problems and sxs I haven’t been able to see them!! This is just so isolating!!!! What is ptns? Oh I won’t try psyllium!!!! It makes me go all the time!!!! Don’t need that as using a supplement is what got me this bad!!! I’m using the baking soda and hoping to get prerelief today or tomorrow if I can make it to the store!!! I get out of bed every morning and the burning starts immediately!!!! I don’t understand!!! Sounds like u r pretty active which is great!!! I’m looking forward to the day when I can’t start working out again and doing things!!!! My stool test came back normal but not sure what they r looking for. I’ve emailed my gi and colo docs about how much my ibs has changed in a week!!! We will see!!! It is SO nice to know I have women I can talk to about this and they understand!!! My husband tries but really doesn’t know what to say which frustrates me!!! Makes me feel sad!!! Anyway I hope u have a great day!!! Thank u for being there!!! It means a lot!!! Take care and talk to u soon!!!!

Karen1954 profile image
Karen1954 in reply to kalecolbe12

Greta gerwig. Lol

anne77 profile image
anne77 in reply to Karen1954

I just read both of your posts, and I am glad that even though I didn't know I was responding to both of you, I am glad we are all in a loop and maybe can help each other. I am originally from the midwest (Indiana/ Michigan), have lived in Jacksonville, FL most of my adult life, lived in Scottsdale, AZ for 8 years, and now live in Ponte Vedra, FL (Jacksonville area near the beach), so I think we all have things in common! I just turned 60, but color/highlight my hair (which is getting more gray by the minute!) Karen, b/c of the burning, I would google the interstitial cystitis diet, and try to stay away from the acidy foods. Plus, one other thing I do to minimize the rectal burning/pain is use medicated wipes, followed by pure aloe gel (I bought in on line from a company (Desert Harvest). I also coat that area with a rectal healing cream I ordered on Amazon (but if you google it, there are several). I have my bi-monthly appointment this afternoon, and my therapist was going to bring me a recipe that you eat/drink using the aloe plant. She said that it is better than anything you can buy. I bought a huge aloe plant before Xmas, but haven't had a chance to plant it yet. I will forward to you when I get it. I also had a tremendous amount of sacral pain, but the MFR has gotten rid of most of that by breaking up the tissue around those areas with the MFR. For today, it is helping me, but I just pray that it keeps working! We are all different, and I hate to give you false hope, Karen,( you sure have gone through a lot more than me with your auto accidents etc.).but you never know--keep on trying new things:)

Karen1954 profile image
Karen1954 in reply to anne77

Hi Anne!!! I’m 65 and color my hair too!!! I’m not ready to go white!!!! Lol. I’ll look into the interstitial diet but I’ve got my diet pretty under control knowing what foods I can eat for the ibs. I’ll try almost anything!!! When I talked to the mft she said I would feel better after the first time. Told her if my accidents and neck sxs and my falls so she is sure there r things going on that she can help with!! So looking forward to it but hope she gets a cx. Kinda expensive but oh well!!! I have pure aloe gel I bought from amazon. I’ll look into the rectal healing cream. I’ve tried recticare and nifedipine ointment for my fissures and nupercainal ointment. Not sure what else there is but I’ll look. Like I told Audrey it’s nice to have women to talk to!!! I haven’t been able to meet up with my friends or workout and it’s frustrating and isolating!!! Thank god for u women!!!! I’m hoping the new year brings us all peace in our hearts and great health!!! Hugs!!!

kalecolbe12 profile image
kalecolbe12 in reply to Karen1954

Who is the mft and what is the cx? Just trying to understand everything so I know what will help

Karen1954 profile image
Karen1954 in reply to kalecolbe12

Oh. Myofascial therapist and cancellation. Sorry

anne77 profile image
anne77 in reply to Karen1954

Yes, thank God for others who understand! I hope it helps you...I progressively got better. My group also has the Pilates machines, but yes, it is expensive! If I pay out of pocket (even good insurance only covers so much), I get a break, so it might be worth checking. The ointment I use is calmoseptine (amazon) and if my tailbone is hurting, I've found icy hot spray to work the best for me (plus you can spray with the can even upside down!) I also hope that this New Year brings happiness and good health to ALL who suffer with chronic pain:)

kalecolbe12 profile image
kalecolbe12 in reply to anne77

We're you able to do Myofascial internal release?I can't handle the pain after internal which makes me think I have pudental neuralgia or irritated nerves rectally..... My pelvic floor physical therapist swear as I only have pelvic floor dysfunction but I feel like there's an irritated nerve in there.. because I can't tolerate any internal and it will hurt for days afterwards they tried to do Myofascial release internally there......I'm going to ask for an MRN which is the MRI of the nerves although even if it's an entrapped nerve the release surgery can be very painful and long recovery so I guess we're stuck with it just doing what we can as far as medication and tolerate it

anne77 profile image
anne77 in reply to kalecolbe12

Yes, I have internal MFR, and it not painful when she is doing it, however, I am very sore for the rest of the day, but am fine the next day. I think every therapist is different, as the last one I tried WAS painful. My therapist is VERY experienced as she is the director of the Rehab Clinic and actually trained right under Dr. John F. Barnes. She is the third one that I have tried for internal therapy, so don't give up on the idea:) As far as the MRI goes, I flew to Johns Hopkins last year to have the "latest, greatest MRI", which was supposed to be better than MRN, but it was not covered by insurance, it did show a small labral tear in my right hip and scarring from an old hamstring tear, but they were NOT able to see the nerve entrapment. I learned through my current rehab group, that I had a lot of nerve entrapment in a few areas, and that's why I saw 2 therapists each week. One did external MFR, and was able to break up the fascia around my spine, sacrum and other painful areas, and the other therapist did the internal. If it would be helpful to read about my rehab clinic, I can private message their website (to maybe get an idea of what a clinic like mine does.) I wish that I would have found them years ago, and I realized they are not all the same! I am grateful that I found the right one for me here in Jacksonville, and I'm guessing there must be several options in Phoenix? Good luck & best wishes:)

kalecolbe12 profile image
kalecolbe12 in reply to anne77

Yes Anne can you pm mebtyay info in your rehab clinic please?

Karen1954 profile image
Karen1954 in reply to anne77

Hi ladies!!!! Well I started the baking soda and water on Sunday and Monday I actually had a pretty good day!!! Didn’t go poo much as it probably all came out on Saturday and Sunday!!! Lol. Not much burning at all!!! I felt pretty normal for once and it was SO nice!!!!! Today not so much!!! More burning!!!! Got the prerelief yesterday too!!!! For some reason I was awake all night even after taking a muscle relaxer and belsomra for sleep. Then felt like I slept on my neck wrong and started feeling a migraine!!! Good lord!!!! Took a maxalt which helped even though I get Botox injections for migraines which has helped!!! I’m still hoping the burning will lessen with the baking soda and prerelief. I want to workout so bad but the burning just destroys me!!!! Excruciating!!!! I’m going to stop my suppositories and most creams as that could exacerbate the condition. I don’t know at this point!!! Still hoping the myofascial therapist can help but that’s 6 weeks away!!!! I’m praying that we all find the good health and piece of mind that we all desire. I hope 2020 is a great year for all!! 2018-2019 were hell for me!!!! Next year has got to be better!!!! I wish peace and happiness for all!!! Thank u to my ladies for all their insight and help!!! Take care and talk soon!!!!

willemine profile image
willemine

For 5 years PN nerve blocks didn t work. Oxycodon works a bit . PT works to relax better not get into a cramp from pain PT doesn t help the PN . Gapapentine didn t work. Amitriptaline worked a bit . PTNS ones a week worked very well i got more then 25 relieve.

kalecolbe12 profile image
kalecolbe12 in reply to willemine

I would like to know why they are not using the ptns for rectal pain and the pudendal nerve also

willemine profile image
willemine in reply to kalecolbe12

They use it for incontinence from the rectum already i read some were and for overal pelvic pain.

kalecolbe12 profile image
kalecolbe12 in reply to willemine

The problem is no one knows one person who does everything we need a pelvic pain clinic and have all of these things there

willemine profile image
willemine in reply to kalecolbe12

Yes there is a lot of knowlage that isn t comming together . I was i that kind of clinic had to pay 1000 euro and after that her diagnose pudedal neuralgie was nothing worth because she was only a PT (!) with special courses about pelvic and pain management and had contact with specialist over the world . But after all she had a lot of knowlage and i went to a neurologist ( a friend of her ) and he double checked the diagnose and put it in my files. Here in Holland half of the doctors haven t heart of pudendul pain or don t know nothing about it.

Ragdoll15 profile image
Ragdoll15 in reply to kalecolbe12

Hi. Could you please tell me what PTNS is as I am looking for a good pain relief for PN thanks!

kalecolbe12 profile image
kalecolbe12 in reply to Ragdoll15

it depends what kind of pelvic pain you have but ptns is where they put a little needle in your ankle at the tibial nerve which goes through into the pelvic floor and they put electrodes to it kind of like an E stim... Seems to be used more for overactive a painful bladder reminders all more inferior rectal nerve and pelvic floor dysfunction depends ,!!where is your pain I was just curious?.. Seems like people are responding to this pcns even if they have rectal pain tooso I'm going to ask my doctor about it also

Ragdoll15 profile image
Ragdoll15 in reply to kalecolbe12

Thanks, I suffer with pudendal nerve pain in the pelvis and rectum. It's so bad it wakes me up every night so get hardly any sleep.

willemine profile image
willemine in reply to kalecolbe12

My pain is round my tailbone in my perineum and i got neuropatic pain on pelvic and upper legs.

Andilynn profile image
Andilynn

I realize that this pelvic/rectal issue is one that will settle a little then flare again. Walking at least 30 minutes daily, watching my diet and doing a little yoga, helped for a couple weeks. Lately, I’ve felt better by eliminating all chocolate from my diet and by sleeping with a thin pillow between my knees every night. I avoid oats, citrus, and tomato products. They go in okay, but they burn coming out for some reason. I use a spray bottle of room temperature water if needed after a BM or during the day if I have burning. I also use Balneol if I need it, its a miracle worker. I take Lyrica and baclofen every day for peripheral neuropathy which possibly helps a little, but I’m not convinced it does.

I wish everyone improved health and a pain free 2020.

Andi

kalecolbe12 profile image
kalecolbe12 in reply to Andilynn

What is balneol?

Andilynn profile image
Andilynn in reply to kalecolbe12

Balneol is an over the counter lotion in a little bottle. It’s specifically made for gentle cleansing of the genital area. I usually buy it on Amazon, but some local stores sell it too. It works wonders...extremely soothing.

AdeleS586 profile image
AdeleS586

I was diagnosed with Pudendal Neuralgia in December 2015. Started pelvic floor PT in January of 2016.

I had a relapse in 2018, after accepting a desk job vs being on my feet all day in retail.

Thankfully I was able to get a standing desk in my new job and found a new pelvic floor physical therapist to help me.

kalecolbe12 profile image
kalecolbe12 in reply to AdeleS586

Did your pt do Myofascial release internally and what part of pelvic floor were your symptoms?

AdeleS586 profile image
AdeleS586 in reply to kalecolbe12

My physical therapist did do an internal release. I have used a thera wand internally since 2016 there are days when I skip using it only once a week at the most, usually because I'm in a hurry in the morning to get where I have to go. The pelvic floor therapist I saw last year also did external massages as I could have adhesions from my c-section scar. She also did craniosacral therapy and in one session she pressed her thumb up into the roof of my mouth that triggered a release in by abdomen.

My initial pelvic floor symptoms were similar to that of a urinary tract infection. I had burning when I urinated and naturally thought it was a UTI.

By the time I was diagnosed with pudendal neuralgia my symptoms had changed.

I had a burning prickly nerve like pain in the area of my vagina and clitoris. I had itchiness which I thought could be a yeast infection.

I also had numbness that was almost like a sling, in that the numbness was from just below my c-section scar in front all the way to my tailbone in the back. You could poke me with a needle anywhere in that area and I wouldn't feel it. To best describe it it felt like an epidural that never wore off.

In addition to not feeling things externally I could not feel things internally either. I could no longer tell when I needed to urinate because my brain wasn't getting the signal from my body. It also affected my bowels in that I couldn't feel anything internally either that would trigger my brain that I had to "go".

I began taking laxatives just to make sure I was able to go, and I made trips to the restroom every hour to make sure that I was at least emptying my bladder. If I didn't do this, then I wouldn't urinate until my bladder went into spasms and that I could feel. That is how deeply the nerve damage was for me. The pelvic floor therapist I was treated by in 2018 used different treatment methods and she had a different approach. She also had me doing different exercises at home from what the previous therapist had recommended.

I'm doing so much better now but I was 5 years ago. That said I am not back to what is normal for me. I am not able to fully enjoy sex the way I used to and it's not just because I'm in my fifties.

Oh by the way I just thought of something. The very last test they did to diagnose me with pudendal neuralgia was an EMG.

rozamond profile image
rozamond in reply to AdeleS586

What is a emg

AdeleS586 profile image
AdeleS586 in reply to rozamond

Electromyography (EMG) measures muscle response or electrical activity in response to a nerve's stimulation of the muscle. The test is used to help detect neuromuscular abnormalities. During the test, one or more small needles (also called electrodes) are inserted through the skin into the muscle.

To diagnose pudendal neuralgia, they had to insert the electrodes rectally.

rozamond profile image
rozamond

Was this painful

AdeleS586 profile image
AdeleS586 in reply to rozamond

It wasn't that painful but I was embarrassed and a little humiliated to tell you the truth. It took almost three months for me to be diagnosed and the EMG was the most invasive of the tests I underwent to diagnose the condition

anne77 profile image
anne77 in reply to AdeleS586

I was embarrassed by a lot of tests, internal pt etc., but my dignity went out the door awhile ago! LOL Getting better/diagnosing pelvic pain is a long process, so I have come a long way in my journey!

kalecolbe12 profile image
kalecolbe12

So did the Emg test show abnormal activity of both nerves AND muscles or just in the pudental nerve?

AdeleS586 profile image
AdeleS586 in reply to kalecolbe12

Just the pudendal nerve. The tests showed that the right side the values were within the normal range on the left side according to the doctor showed evidence of injury or trauma.

I had a number of doctors asked me if I was a cyclist or had suffered any type of trauma, to which I answered no. The only thing I had done differently with take a desk job where I sat for 8 hours a day that was what brought on my symptoms.

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