Pudendal neuralgia - any support group/ words of wisdom?

[2977reader]

For those with pudendal neuralgia: finding the not being able to sit normally really awful: find family and friends just don’t get the curtailing nature and indignity of the condition, never mind the pain. Have had it for six months. Any words of wisdom to help to accept this condition? Have read the books, bought/ invented the cushions but just wonder if there’s anyone in North London, who would want to form a support group? Feel very alone in this. I’m female, (was) a very active fifty year old. Thanks so much.

[Merc7582]

Your not alone here, understand your comments about family though.

[swarke22]

Look into the lengtheningof pelvic ligaments. I have operations for being able to sit. Private message me and we can talk. Going to see specialist physio Thursday for osteitis pubis. Do you have groin pain and mons pubis pain too?

[AuntieH in reply to swarke22]

Hi swarke22, where can you get lengthening of pelvic ligaments?

[willemine]

Sorry not in your neighberhood living in Holland i have pn sit on a yoga bench with a swimmingboard on top of it were i carved a hole out. Its the only way i can sit properly. I use oxycodon and amitriptaline for the pain. I used to cool my pudendus nerve but ones i cooled to long and lost my peristaltic bowel movement so now i don t cool anymore. My pain reduced for 1/3 by the overactive bladder treatment PTSN. Its a small intervention if you possible to try i should do that. You can google on pelvic pain and ptns and find a trail with 60 % poeople with improvement. I listen to michael sealey on you tibe to calm down with the pain his voice is very comforting to follow. I wish you success with the pain hope its manageable. All the best from Holland

[swarke22 in reply to willemine]

I got lengthening of my pelvic ligaments when my bowel fell inside me. It has caused oestitis pubis because of the instability. I was diagnosed with pudendal entrapment has both sides operated on and did not improve anything.

[Hidden]

Hi

I live near you (Northeast London) and would love to get together with you a group for support. I'll message again later today, as a bit busy now. Going for hospital appointment.

[2977reader in reply to Hidden]

Hi, am meeting up with Daniella4 this Thursday in Hatfield, if that is of interest and not too far for you. Good to have a support group!

[Hidden in reply to 2977reader]

Hi there

Thanks for asking, but I'm going up to Lincolnshire tomorrow to stay with my mum for a few days, so won't be able to come to Hatfield. I would be interested in meeting another time. Hope it goes well. Take care x

[pizon]

Hello and I am sorry to hear of your pain...I live in the US so I am not close but you can p/m me any time and I would love to talk with you I was left with p/n after corrective bladder surgery and was misdiagnosed for over a year...I work with an herbalist (the medical profession made me worse and the meds made me sick) I take valerian root and hops during the day and have medical marijuana at night to sleep ...I did the p/t for 2 yrs and it did help I also had pelvic floor muscle spasms...it took me a long time to find out what was wrong with me and how to treat it hear in the states there are only approx. 5 dr.'s that deal with pelvic pain of any kind I find that yoga helps me the most my best recommendation is a book titled heal pelvic pain by amy stein ....that has been the most helpful for me I hope this helps I would hate to see anyone go thru what I have as far as the family and friends it is very hard for them to understand....I printed out info from the internet and let my Mum read it (she was the worst she couldn't get that I couldn't sit) I am able to sit now but for a very limited time...but with this book and yoga I am much better then I was...I too am a very active woman I am now 59 I truly hope this has helped you take care

[Hidden in reply to pizon]

Hi pizon. I have just finished the book you recommended. I am having problems with doing the exercises, they hurt so much and understanding how to do the muscle massages. I don't get massaging until you find a sore spot for instance my hips and butt feel sore all over. it feels good to rub them and I guess I just naturally rub my back, etc., because it's sore. breathing exercises on youtube hurt because my stomach hurts to breath in down there. Can you tell me some of the yoga you do? I am laying in bed with my heating pad now in so much pain I don't know what to do. Valum suppositorys (sp?) didn't work. and I am broke. I am not a lazy person. My legs just got tired from standing up all morning.

I feel for everyone with this pain. Thanks. Kat

[pizon in reply to Hidden]

So sorry your dealing with this pain it is a horrid condition...the yoga I do is on a dvd you may be able to order it from the library before you buy it "Your pace yoga Relieving Pelvic Pain" by dustienne miller you have to start slow...are you seeing any dr at all? Are you in the US? I know a dear friend of mine in the UK had to go to France to be treated in the US there are pelvic pain dr.'s (5 I think) in this country women are misdiagnosed all the time and have unnecessary surgery's..i hope this helps I wasn't able to do any of the medication I tried 5 or 6 different ones and had many dr.'s with wrong opinions I take valerian root and hops up to 3 times a day...can you work with an herbalist? that too has helped me I had to jump off of the medical merry go round not only did they want to keep cutting me I was not diagnosed for 1 and 1/2 years again I hope this is helpful Take CAre...try the book again but take is very slow

[Hidden]

Hi again 2977reader

I have hypertonic pelvic floor muscles rather than PN but there are a lot of similarities with the effect that these conditions have on daily living. I also find that sitting is a major trigger, and it's difficult having an invisible condition because people often think that as you look fine you must be fine, or even that you are exaggerating or imagining the problem. I'm 57 and live in Chingford. Where do you live? I am ok to travel to meet somewhere but prefer public transport to driving as driving is not good for my pelvic floor. I do drive short distances though. If you would like to meet could you private message me to talk about it?

[Konagirl60]

It’s a very painful condition to accept and learn to live with.

Do you think your nerve was stretched doing an activity or during a surgery?

What exactly are your symptoms? Are they getting worse?

Guided nerve blocks with both anesthetic and steroid can calm the nerve for some lucky folks. Myself, not one of seven blocks done over a 2.5 year period helped.

I had PNE and decompression surgery saved my life. The sleep deprivation and uncontrolled life threatening pain almost killed me.

My rectum was electrocuted and this woke me every night to urinate pain free on the toilet but to lie back down and feel a red hot poker being shoved up my rectum or my right buttock was sitting on a red hot stove burner. It was torture. I’m still recovering from P.T.S.D.

[Daniella4 in reply to Konagirl60]

Hi Konagirl 160, I have exactly the same as you as you , Feeling of a red hot poker up my rectum constantly, BM are excruciating , my rectum is being electrocuted my pelvic floor in spasm and I am burning from my rectum thru the pelvic floor to vagina. Had nerve blocks etc. Still in unbearable pain. Could I ask you pls where you had your decompression done? I would appreciate any advice you could give me. Many thanks Daniella4

[Konagirl60 in reply to Daniella4]

So sorry for making you wait!

My surgery was done on St. Paul, Minnesota. The surgeon has retired.

We keep in touch. He would recommend Dr. Jacques Beco in Belgium and/ or Dr. Bruno Roche in Geneva, Switzerland.

Are you sitting on a sponge foam toilet seat? I found a covered one at a medical supply store. I use it for driving and sitting,

I was told pre/op to avoid hip flexion activities. It was suggested I buy a medical arm teacher to pick up lightweight items on the floor.

When you shop, pack your grocery bags light. Excessive weight can put stress on your groin.

Stand up as much as you can. I wear orthopaedic shoes and boots.

You need a nerve pain modulator. Have you tried Amytriptyline? Nortriptyline?

Good luck. I fought for my life. No doctor would help me to get the surgery. I hired a nurse consultant and she advocated for me for compassionate reasons. She saved my life.

[pudendalpainpatient]

I’m right where you are at with having had PN for 6 months. Pain is much better after taking a 2 month break from a TOO Agressive physical therapist. I’ve found a new PT who is willing to do more gentle PT. I started last week and I think I’m going to really like her. I still can’t sit at all but I’m getting used to standing for long periods of time.

Regarding loneliness, I’m fortunate that at least one of my friends from church visits me every week. And I was thinking why am I not just calling some of my other friends? Also I’ve invited friends over for lunch asking them to pick up carry out meals for us with me paying. That helps we stay connected also. So now I make it a goal to call at least 2 or 3 friends every week.

I will be praying for you that your pain will begin easing and that you will be able to connect with some friends at least by phone if not in person.

[Daniella4]

Hi I am in the same situation as you have pudendal neuralgia and cannot sit for long , have no one that understands this condition . I also live north of London. I am female was very active but now can’t do much at all without causing the nerve to flare up all the time . Would be nice to have someone to share this awful condition with. best wishes daniella4

[2977reader in reply to Daniella4]

Hi Daniela, I messaged you re. meeting up as a support group. Look forward to hearing from you

[Daniella4 in reply to 2977reader]

Hi 2977, Thank you so much for responding, I live in Welwyn Garden City Herts, very close to you, would love to meet up.

[2977reader in reply to Daniella4]

Hi Daniela, could you meet up Wednesday, Thursday or Friday? All the best, Amanda

[Daniella4 in reply to 2977reader]

HI 2977 reader, yes wednesday. thursday or friday I am free. Best wishes Daniella4

[2977reader in reply to Daniella4]

Hi Daniella, how about Thursday? Private message, please

[Daniella4 in reply to 2977reader]

Hi 2977 reader, Thursday would be fine, just let me know where and what time. Looking forward to meeting you and others who are coming. Best wishes Daniella 4

[Daniella4 in reply to 2977reader]

I have private messaged you, I hope I did it correctly, pls let me know if you received it. Many thanks Daniella4

[sketer]

i am in america at 64 i had a rectocelle ,the surgery was supposed to have went fine that was a year and a half ago. i have ecruciating pain in rectom back and pelvis ,i went back to obgyn that did the surgery, but he is not really interested in treating the pain , i lie around a lot and i have become very isolated and lonely.i have been a nurse for 40 yrs.and i am treated as if i should know what to do so i dont go out much and i try to read and find ways to help myself but nothing for pain has been prescribed or even mentioned i feel very alone most of the advice i get is physician heal thyself. and get up. i cant believe my life has come to this , i can hardly do my little housework or cook a full meal. i have family but they act like what is wrong with you, you cant be still hurting, it must be in your mind i rarely have a good day pain 24/7. and i feel so useless and alone, i do not know where to go for help

[pizon in reply to sketer]

I too am in the US I also had surgery ( a bladder lift repair ) that left me with p/n and yes it is life altering mine was 3 years ago next month and trust me when I tell you just this past year I have started to have a life again...I don't know where you are but I saw a pelvic pain dr. in Annapolis MD and he helped me understand what was wrong with me ( I had been misdiagnosed over and over I had seen 27 different dr.'s) I would advise to start there I am not able to take the medications that the dr.s prescribe so I also work with an herbalist I hope this has been helpful I also do yoga the book I recommend to every one is Healing pelvic pain by Amy stein I also meditate...as of today the best thing I can do for myself is the stretching (yoga) and getting a full body message...it turns out that during my surgery the psoas muscle became damaged and is pressing on my pelvic nerves it took me 3 years to find this out and medical dr.'s just aren't helping but seeing the pelvic pain dr. did give me a proper diagnoses my chiropractor figured out the psoas muscle ... I have found by talking with other people with this condition over the past 3 years that we all suffer in different ways yet the same it is a horrid condition to live with and yes trying to be mentally positive is the first step after you get the proper diagnoses...some days are tougher then others I have found if you can find the cause to the nerve problem you can work from there..hoping you feel better soon

[sketer in reply to pizon]

thankyou , for sharing with me your pain and what you are doing i am in the south. no one speaks of this .the other nurses i have met speak of the surgery but not the out come or the pain that stays with you, i was even told by a sister to get another surgery.I have completely quit telling my family anything.i will be going to library for the book you reccomended and i am praying and i am looking into the herbal path. again thankyou for your help, and i pray you continue to get pain free

[pizon in reply to sketer]

Well Good Luck to you I have good days and bad days but the best advise I can give you is to find a pelvic pain dr. there are not many of them but that was when I got the proper diagnoses I was able to do further research and trust me when I tell you of all the 27 dr.'s I have seen they didn't have a clue as to what was wrong with me and wanted to put me in for more surgery I even was told if I got a herrina operation I would be all better...it made me worse so find a pelvic pain dr. I am on the east coast so if your in the south just google and see what you can find...best of luck

[sketer in reply to pizon]

thankyou pizon,

i will be looking for that pelvic pain DR. you have encouraged and helped me so much by sharing and advising me of where to start, this site is a great help for people like me, Again i thankyou so much

[pizon in reply to sketer]

You are so welcome and yes I agree this is a great site I wish I knew about earlier..I have met some wonderful ladies on this site please keep me posted I to know how frustrating it can be when your family doesn't get it....Take Care

[AuntieH in reply to pizon]

Hi pizon, what have you done differently now that you have a diagnosis that is working for you?

[pizon in reply to AuntieH]

Well getting the diagnosis was the hardest going to dr. after dr. and no one knew what was wrong with me..so I now do yoga and much stretching that has helped very much I am also walking a program on you tube called miracle miles I hope this help the yoga I do is called your pace yoga reliving pelvic pain by dustinne miller I hope this helps

[AuntieH in reply to pizon]

Thank you, pizon, I'll check it out.

[Daniella4]

I responded to you re meeting up for a support group for pudendal neuralgia,

[pizon in reply to Daniella4]

can you tell me where this meeting is for the support group I would love to attend?

[Daniella4 in reply to pizon]

I am waiting for 2977 reader to let me know , so far it could be Wednesday , Thursday or Friday , I presume somewhere in Hertfordshire . Pizon do you live in this area? I will let you know as soon as I find out. Best wishes Daniella4

[pizon in reply to Daniella4]

Oh thank you for contacting me but no I am on the east coast in the US so I am not able to attend however I would love to in this country pelvic pain is not as known the dr.s are not as educated on this subject they say it is rare however I feel many more women have it but are being misdiagnosed every day a lot I am afraid are having un nessary surgery's I even had a URO GYN dr. tell me to have a hysterectomy This is why I now do not go to them Thank you again

[sketer]

Daniella4,

I live in rural south , in America .this subject seems to be taboo here, we do have a few support groups,but nothing for pelvic neuralgia ,or pelvic floor , but i am seeking help from a large metropolitan town about 86 miles away, thankyou so much for reaching out.

[sketer in reply to sketer]

p.s. this just came about in the last hr. of looking further than this small rural town i am close to. i hope to have something to tell soon , thankyou so much for reaching out to me

[swarke22]

Where exactly is your pain?