Pudendal neuralgia is this a flare up... - Pelvic Pain Suppo...

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Pudendal neuralgia is this a flare up or just got worse

Luckylee profile image
25 Replies

4 years ago I was diagnosed with PN by dr de Mello in Manchester. After a long battle trying to get better I found the best way was to accept & manage the condition. I basically stopped sitting, driving, no Sex, to see what happened & after 10 months I slowly felt a lot better & started to live life in a different way. I Could do everything by adapting a new way of living. After a year I started to drive by making my own cushion from a toilet seat, I went to restaurants making sure I was seated in a cushioned booth where I sat with my legs up on the side, cinema by getting a seat where the arm lifts up so lieing on two seats, I've been abroad by standing on the plane, & I met an amazing man & could have Sex again.. Then 4 weeks ago after sex I started with the most agonising pain in the nerve/pelvic floor muscle which had completely floored me. It's the same as 4 years ago but worse.ive been in bed for 4 weeks. Everything has stopped, all the hard work I did to beat this condition has stopped. I cannot walk the pain is so bad.the nerve is throbbing so bad, I am back on gabapentin, amtryptylene, patches but nothing works. I feel very low and frightened that this will not settle. Any advice would be very welcome thank you

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Luckylee profile image
Luckylee
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25 Replies
swarke22 profile image
swarke22

Hi Luckylee, I too went to see Dr Demelo in Manchester. I too drive on a cushioned toilet seat but my journeys get shorter. I have had Pudendal nerve decompression in Bristol. Nothing has worked but my story sounds similar to yours. I was told last year by a urologist that I had peripheral nerve damage so I looked all this up. Our nhs has offered me no hope. Cut to three weeks from now. We have remortgaged the house and I am going to see Dr Dellon in Baltimore a peripheral nerve Professor. If you want to know anymore. Reply and we can talk. swarke22@icloud.com

I wrote to the Prime Minister and they sent me the number to the Samaritans! Talk about being left out to dry!

Shirl. I know your pain

Hi there,I've been seeing Dr DeMello for nearly two years,he gave me a nerve block last year,but it done nothing. I seen him just three weeks ago and he told me there was nothing he could do for me. I feel no remorse with him,they can't wave a magic wand and everything goes away. They can only help with what they have.

I do feel for you,as I've suffered now for over ten years,been all over the country seeing specialist,tests,diets,etc etc,I'm now at a loss. But I am just starting to see a very good Physiotherapist,and she's given me hope.

Good luck to you both.

charlee4 profile image
charlee4

I wish I knew what to tell you. I want you to know I feel for you. I have chased help for this horrible pain for 10+ years as well. I want to be included in this thread if there answers that I have not tried. I hope you find relief very soon.

pianoguy profile image
pianoguy in reply to charlee4

Hi I have chased this terrible pain for 10 years as well...amazing how drs look at you like your an alien when you tell them the symptoms...shouldn't someone KNOW how to treat this by now,,,we are all suffering for freakin years!

svaillantkenn profile image
svaillantkenn

I’m going to try pudendal neuromodulation with Dr. Peters in Michigan this fall. This procedure makes me less nervous than nerve decompression surgery. Basically a small pacemaker like device is implanted near the nerve to modulate the pain signals being sent to the brain. Eighty percent of women who have undergone this procedure have experienced a fifty percent reduction in their symptoms or more. Will keep you posted how it turns out

Konagirl60 profile image
Konagirl60 in reply to svaillantkenn

If your nerve is ‘pinched’ when you sit, I found that TENS made everything worse because it causes more aggravation and over stimulation. I am curious to see how you make out.

I knew I needed surgery and I am so glad I got it. I am ever so slowly healing but because this is essentially a movement disorder, many of my own are now limited. Now, I read more than before. I do more puzzles than I used to do.

I wish you all the luck in the world to find competent care.

svaillantkenn profile image
svaillantkenn in reply to Konagirl60

Happily I will have a trial period of two weeks to see if the modulation helps me with my pain. If it doesn't I won't have the device implanted. I think I don't have an entrapped nerve, but rather an irritated nerve. If this doesn't work, I plan to see Dr. Dellon or Hibner.

svaillantkenn profile image
svaillantkenn in reply to svaillantkenn

Did you actually have neuromodulation or were using a TENs device. I too have found TENs devices don't work.

Konagirl60 profile image
Konagirl60 in reply to svaillantkenn

Good idea.

hill-top profile image
hill-top in reply to svaillantkenn

Yes, please keep us posted re your experience of neuromodulation if trial works and you go ahead, and if not, what is the outcome of consultations with Drs Dellon or Hibner. What scans have you had that led them to suggest neuromodulation? it makes no sense to me if they don't know what nerve they are truly trying to treat, as have no scans to show up nerve irritation, how they can best direct neuromodulation. I am in this boat now (in UK) but they plan to do MRI. I don't see how this can help with pinpointing nerve problems, nerves being the culprit . Nerve blocks didn't help.

kalecolbe12 profile image
kalecolbe12 in reply to svaillantkenn

Hi I realized yours was an older post but I was wondering if you can tell me if the neuromodulation worked for you

svaillantkenn profile image
svaillantkenn in reply to kalecolbe12

No—I had a 25 percent reduction in pain, which wasn’t enough to receive the implant. In my case what did help is a stent to clear up my May Thurner and pelvic congestion issues. Before you go this route I recommend doing the exercises that belong to the program Freedom from Pelvic Pain. They target the fascia, which can be a major culprit in pelvic pain.

pieper profile image
pieper

i had surgery wiith dr dellon for this problem. it did get better but i am not free from pain. now i have severe inflammation in right labia that causes throbbing and pain in labia and rectum. my quality of life is much improved over what it was. i don't know what causes this, nor does he. so now i just deal with this pain with ice packs. it gets worse as the day goes by. i don't think that all woman he does this operation on has this reaction, don't know why it happened to me but it did. i still do recommend gettting the operation. insurance does not cover this and it costs $17500.00 out of pocket. so there's that... if you wanna talk my email is pieperwatts@gmail.com

swarke22 profile image
swarke22 in reply to pieper

Exactly what operation did he do for you? I’m hoping he can help me.

peters1 profile image
peters1

it has been 2 years since I had prolapse repair and then pundendal nerve symptoms. I go weeks feeling great barely noticing symptoms then boom here it goes again. Then once again I am better. I continue to keep moving by the grace of God and take meds prescribed. I feel confident that you too again will begin to feel better. Right now I have been experiencing symptoms for about 2 weeks. Try doing PIYO Stretches to relieve the symptoms. Usually sex will make me better, but sometimes it brings symptoms on. God is my refuge and I find comfort in Him, family and friends. Praying you recover and be better than before.

pizon profile image
pizon in reply to peters1

Hi Peters1 I have a question....I too have PN du2 prolapse repair surgery my new uro gyn is going to remove some of the stiches that are close to the nerve I also suffer with sciatica and it is my understanding they are next to each other..has your dr. told as to why you have gotten PN since your surgery?

swarke22 profile image
swarke22 in reply to pizon

Christopher Wong in Bristol did my pudendal surgery.

peters1 profile image
peters1 in reply to pizon

he said it could be several reasons but he believes strongly that it is due to scar tissue that has formed in the region of the nerve.

Konagirl60 profile image
Konagirl60 in reply to peters1

That makes sense.

pizon profile image
pizon

I'm so sorry to hear of your pain...I am in the US and see Dr. Richard Marvel in Annapolis MD it is my understanding he is on of very few dr.'s that actual do surgery to correct this issue...from being on this site it seems people in the UK are diagnosed with PN much earlier then in the US if you can look him up...I would go back to the dr that helped you or move on to a new one that specializes in this area best wishes

Godsgurl profile image
Godsgurl

I relate to your situation. I was completely disabled by pudendal neuralgia about 3 years ago. I believe it was brought on by a bad IC attack of a year duration. I live in San Diego and had a friend drive me to Phoenix to see Dr. Hibner in early 2015. He diagnosed me with PN but not entrapment. When I got home, I had a couple PN blocks and pelvic therapy with no success. I couldn't take any of the traditional nerve meds and only took a small amount of Dilaudid mostly at night to cope. I spent a year in bed suffering and crying frequently. Then in early 2017 started to see some improvements being able to go without pain med longer and longer up to a month. I was able to manage it reasonably successfully with the help of my Cushion Your Assets pad. However, in the last two weeks, out of the blue, my rectal pain and pressure has gone up to a 9 and what is really disturbing the stinging achy nerve pain has radiated out into my left buttock which is excruciating. I've gotten this butt cheek pain a couple times but very briefly. Now it is sustained and obviously the nerve is extremely irritated. I am praying and hoping this is just a horrible flare that passes very soon. It amazes me how suddenly things can change with this condition. I'm wondering if I should do a nerve block again if this doesn't pass.

charlee4 profile image
charlee4

Boy, that is a decision I think only you can make. Maybe it would work wonderfully for you and you will be pain free again. I must advise there is a chance it wouldn't. I wish I could wave a wand and cure all of us, but I am not a genie and I am certainly not God, so all I can do is offer my prayers that your decision be the right one for you.

willemine profile image
willemine

I have PN for 5 years now i just made progression because of ptns treatment its neurostimulation outside the body with a needle in your leg. Its a treatment well known for overactive bladder but it helped me tremendesly with pain relieve 25 / 50 % relieve . You can surge on google ptns pelvic pain and you get a englisch trail with more people how got benenefit from it. I am from holland so my englisch is not very good.

willemine profile image
willemine

I don t sit on chairs but on my knees on a yoga bench with a swimmingboard on it were i carved a hole in by my tailbone perineum . Its laborious but it helps

willemine profile image
willemine

I have also pn and got much better by ptns treatment ones a week for 30 minutes a very small intervention with great impact . Its a little needle in my leg with electro neurostimulation on it . Often this treatment is given for over active bladder you can read a trail ( goole ptns pelvic pain ) with 60 procent of people how got better. I still can t sit and sit on my knees on a yoga bench with a swimming board on top with a hole in it but the pain is 30 % till 50% lesser.

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