Hello all,
I am suffering from pudendal neuralgia pain. My colorectal specialist has said that I have tight pelvic floor muscles which they believe may be irritating my pudendal nerve. I am getting rectal nerve pain.
They have recommended Botox injections under general anaesthetic.
I am just wondering if anyone here has had Botox injections for pudendal neuralgia, and what the result was? Any flare of pain?
Thank you so much. I am praying for all of us with this horrible pelvic pain. 🙏
I too have a tight pelvic floor (levator ani syndrome).I have been getting botox injections for a number of years. Whilst it doesn't eradicate pain there is definately less tension and spasms.
I also see a specialist womens physio who does vaginal trigger point therapy combination of treatments really help a lot.
Hope you find a treatment that works for you.
Hello - I am considering this also and was wondering if anyone out there has any successful experiences and which Doc did it ? I am in London UK and male with 4 years of cycle induced pelvic pain / PN .Thanks so much in advance
Hi, I have been suffering from the same thing for 3 years. I also had the Botox injection. I personally would not recommend it as it caused me to not be able have a normal bowel movement. Everything is totally deadend and I am unable to feel anything related to bowel movement. I was not told that bowel incontinence was even a possible side effect of the Botox injection. Talk to your doctor and don't complicate your problems!
Thanks so much, did it have any effect on your pain levels?
No, it also did not change / help my pain levels at all.
I received botox injections for about 10 years. They helped reduce the pain about 50%. Were very painful to get and often caused rebound pain. I've since started getting pulsed radiofrequency ablation of the pudendal nerve. I had immediate relief, have had no incidences of rebound pain. They causeca little discomfort to get, but nearly as painful as botox injections. I have gotten my life back after I started the pulsed radiofrequency ablation.
Hi there ,I’ve suffered with P/N for a couple of years now so I’m really interested about your comment about having pulsed radiofrequency ablation of the Pudendal Nerve ,l just on Friday agreed to have this procedure at the Pain Spar in Bristol and am waiting for some dates for the treatment,, I’m really nervous about it and if it works etc so was really happy hearing you say it helped a lot , so thanks very much for posting your experience
Thanks builderboy, have you found anything in particular that gives you any relief from this?
Hi Nike101, it’s just not nice is it , it is so uncomfortable when you’ve been sitting for a little while I’ve been on gabertentin but not sure that does much, basically it’s just driving me up the wall I’m just lucky I don’t have too sit down for my job I’m on me feet ,, I’ve had a nerve block but that didn’t last long , so I’m booking the pulsed radiofrequency ablation in the hope it improves even 50% , I’ve heard some people have gone to Belgium to be treated by a Dr Renaud Boolens , it would be nice to hear again about the experience and too weather his operation on the nerve is a success , I’ve tried to find a surgeon in the UK that does the same procedure but am quite shocked that I can’t find anyone as there is such a big need,so we just keep battling on
Thanks Builderboy. Yeah it really is an extremely unpleasant condition. I have read about Dr Renaud from Belgium online, and also about the centres in France. Have you had any specialised 3T MRI scans which can show the nerve more readily?
I guess my concern about surgery is the risk I could become worse as a result of the procedure. If I ever did it, I would want to be absolutely sure that the surgeon was highly experienced in dealing with PN.
It’s really reassuring to hear about some people’s results with pulsed radiofrequency ablation. What you say is so true, even 50% improvement would make this condition so much more tolerable!!!!
Agreed, here in Australia I think there is only one surgeon in the entire country that deals with PN. It is astounding !!
Reach out to my anytime you need a chat or to swap ideas.
Dr Baranowski London hospital i think it's queen's hospital but look him up online also Mr takkoli who does nhs and private but very pricey.
There are no surgeons in UK doing this but you can be referred to Nantes, where the worlds best doctors in thud area reside. Reach out to Dr Greenslade at the Bristol Pain Clinic.
Thank you very much for your note. It is great to hear that Botox (albeit painful) helped somewhat, and wonderful to hear about the pulsed radiofrequency ablation procedure being so successful.
We’re you experiencing rectal pain?
Also, can I please ask did you experience any continence issues after the Botox injections?
thanks so much
I was severely injured by a transvaginal mesh sling. I was diagnosed with pudendal neuralgia, obturator neuralgia, piriformis disorder, vaginismus, and a few other pelvic floor disorders. I had 22 surgeries to get the mesh out. I still have incontinence issues from all the damage caused by the mesh. I did get periodic rectal pain, tailbone pain, clotoris pain, etc. Botox did not make my incontinence worse. I have fared the best with the pulsed radiofrequency ablation. I am no longer getting botox injections. I hope this info helps.
Thanks so much for sharing your story. I am so very sorry that you have had this experience. It is so encouraging to hear that several members here have experienced relief with pulsed radiofrequency ablation.
Some have reported incontinence and no sensation of bowl movement. Also a dr said if you have alow uterus watch out it might drop even lower
⁰Hi Nike101! I feel your pain as I have been thru surgery for Pudendal Neuralgia, nerve blocks & yes...Botox Injections! Today is 2 weeks post botox injections ( I was injected with 100 units all over my pelvic floor)...this was done by a well respected Pelvic Floor Specialist in NYC. Unfortunately, my pain seems to be worse but I was told this is normal & to give it more time because it can take 4 weeks + to see results. I can't lie, I am concerned!! Botox works for many people & if you have been through alot of unsuccessful treatments, you might want to go for the botox injections. My advice is to make sure you get it done by a Dr who has experience. I am leaning towards no more injections of any type in my pelvic floor again & giving Physical Therapy another shot because my pain gets worse after every nerve block & botox injections. I also want to mention that the botox constipated me & I am already someone who takes miralax every morning, eats healthy fiberous foods & only drinks water. This side effect really bothers me because constipation has been a major problem of mine for years. My Dr who did my botox told me to take Magnesium Citrate Pills/Capsules & I now take a dose of 500mg which might be high for some but it helps. Sorry such a long response. I could write a book as there's so much to tell & share when you have Pudendal Neuralgia or any form of Pelvic Floor Dysfunction. STAY STRONG 💪
Thank you so much Badassy for your reply. I am so sorry to hear that the Botox has flared your pain a bit, I hope it settles soon. At the moment I haven’t really had any treatment except for a bit of pelvic PT. I take a low dose amitriptyline but am concerned about long term effects of taking this, I am considering trialling medicinal cannabis. May I ask do you take any medications to manage your PN? Has anything worked? Also, what treatment/s would you say have been effective? The surgery was not successful? Thanks so much!!
Thank you for your kind sentiment! I am on gabapentin but not sure it is working. Also an ointment of gabapentin & lidocaine made in a compound pharmacy that I put on my pudendal nerve externally. I have been on antidepressants since my younger days so I think they help because 24/7 pain can definitely effect you mentally too!! Antidepressants/benzos are not a suggestion unless they are needed. I see you take amitriptyline, I have been on an antidepressant called Cymbalta for yrs & recently learned it is also prescribed for nerve pain. I thought about medical cannabis but I am not going in that direction...not ruling it out & definitely support those who use it! When I was diagnosed with PN , my Dr/Surgeon went over a few treatments & surgery & I immediately said that I want surgery thinking this would be my best option to eliminating pain. I was so wrong!! The pain was worse & I was told it could take months to years for nerves to heal. I would have done Physical Therapy & then see what other treatments are available & if all that did not help, then as a last resort surgery. So I am waiting impatiently to see what happens with the botox but at this point... never want to do it again. I have a follow up appt on Feb 11th. I am leaning towards Physical Therapy again. How long have you been going to Physical Therapy? Has any Dr written you a script to get any imaging exams? I have had many done & I had an MRN, not MRI, that can detect Nerve Images. I highly recommend an MRN as well as other test. I use to do yoga 🧘♀️ & Zumba 💃 before this thing called Pelvic Floor Dysfunction started. I worked out often & hard which might have caused my issues. Anyway. I like to think of myself & others who go through life's struggles & keep fighting as Badasses...as a female, I use Badassy! I am here for you...if you have questions or want to vent...you can reach out to me! Hopefully, both of us will get the help we need soon. 💪💪Please, keep in mind that my experience with surgery & botox doesn't mean that any of these will not be successful for you! I am only sharing my experience
Hey! Thanks so much for your note. So has the Botox flared your pain up? Any other negative effects? I have read of others having Botox, both good and bad experiences it seems. It is very difficult to know what to do treatment wise in our situation, as you say do we continue with conservative treatments if we can have somewhat of a reasonable quality of life in the hope that time helps the nerve to heal, or do we go for more invasive treatment with the risk that it may make us better, or indeed may make us very well worse. It is a very difficult decision always.
I am going to take your advice, and that of others, and keep trying to manage this conservatively for the time being. I am also going to organise a 3T MRI of my pelvic nerves and lumbosacral plexus and see if it shows anything up.
I absolutely LOVE your term “badass” for those of us who are facing life’s struggles as badasses!!! I have so now embraced this term myself!!!! I woke up this morning and read your post saying this and it brought a huge smile to my face, which was so needed in this dark time I am facing. There is something very empowering about being a badass and fighting like a badass!!! Thank you!!!!!
Hope you have a good day! I don't know if this happens to you...my pain is way worse at night!! Happy to know you are going for 3T MRI & doing conservative treatments. If Physical Therapy is working, give it more time. I wish I did Physical Therapy before surgery. I know you will get well soon! We both are Badasses! Glad I made you smile because we both know smiles are rare when going through this. Pls. Keep me updated! 💪💪
Hi Badassy, just wondering how you fared now it’s a month on from your Botox injections? Did it have any effect on your pain levels?
Hi! Unfortunately, Pelvic Floor botox increased my pain level. I was injected all over my pelvic floor so it is possible that if I was injected less, just maybe things would have been better....I have NO plans on ever doing botox again!!! After all the unsuccessful nerve blocks, botox injections, Pudendal Nerve Surgery & I am returning to Pelvic floor Physical therapy by a Pelvic Floor Specialist to get internal & external PT. She wants to get my bum relaxed because I have had so many procedures done that my nerves & muscles in my bum are hyperactive. Also, there is a Physical Therapy technique called myofascial release that the therapist will be doing. I had laser done to my obturator muscles, sits bones & lower back to see if I get pain relief. I asked not to be lasered on the Pudendal Nerve because I want to see if I get pain relief in the other areas. My Pudendal Nerve is very sensitive. THANK YOU for reaching out! Let me know how you are Nike101
So sorry to hear it is still flared. Some small improvements here, then also setbacks. It’s a frustrating difficult condition isn’t it!! I have started pelvic PT, and am using a muscle relaxant and gabapentin suppository, which does actually seem to be knocking my pain levels down a bit. I wasn’t keen on using gabapentin, but it does seem to have helped a bit. Early days. I will let you know xx Trying to avoid interventional procedures where possible!!!
I am happy to hear that you are doing PT & feel less pain. Remember that it will takes time to get back to Healthy You because the Pelvic area seems to be a very complex area to treat. Keep up with the Physical Therapy & I hope your therapist is very experienced in Pelvic Floor Dysfunction/ Pudendal Neuralgia. Best Wishes!!!
Thank you my good friend!! Yes she seems to know what she is doing, unlike the first one I saw. There are definitely differences between pelvic PTs.! The first session felt great, but the second session I had last week badly flared my pain up from the internal release work, but feel quite good after yesterday’s session. Does your pelvic PT ever seem to flare your pain an hour or two after treatment? Thanks for your support xxx
I am so honored to be called your friend! Absolutely, flare ups are very common when getting Pelvic Floor PT. ..both internal & external therapy will do that. I actually feel pain during therapy too!! I always share my pain levels through out PT because she wants to know. Usually, where I feel the worse pain my physical therapist will not be surprised because she can feel scared tissue & tightness with her hands ( I have alot of scar tissue because I made the regrettable decision to have pelvic floor surgeries ) This doesn't mean she should stop because this physical therapy needs to work on painful injured nerves, tissue, muscle, etc... I know that I have a long road ahead!! I hope yours is shorter! Your friend, from New Jersey, USA is always here for you 🤗
Thank you so much for being such a good faithful friend!!!
Yes, after the bad flare up of nerve pain after the second session, I nearly didn’t go back. But yesterday’s session (third session) did not hurt as much afterwards, it did flare it a bit. But I slept well.
I really hate taking these medications. Before this nightmare I was in no medications at all. I take a low dose Amitriptyline (5mg) and a suppository with gabapentin, Valium, baclofen and lidocaine. This suppository has definitely seemed to stop the intensity of my afternoon flare ups a lot, so far.
Do you find your pain is worse in the late afternoon/evening?
With best wishes for your evening from your friend in Sydney, Australia !
My pain is always worse at night. My pain level is over a 10 right now. Every night I take 3 extra strength tylenol, 300 mg of oral gabapentin, ativan & Trazodone to sleep. I have to sleep on my side with a pillow between my legs to take some of the pain away. Do what is working for you. I need to sleep now. I will tell you 1 thing that makes my pain worse & that is STRESS/ANXIETY. This Pelvic Health situation is stressful enough without added stress from anyone or anything else. Hard to avoid but try! Stress will cause our pelvic floor to tense up & exasperate pain. Chat soon my Australian friend
Yes, have also been sleeping on my side too! You are so right with what you say to me, stress/anxiety makes the pain worse. I could not agree more with you, this pelvic health situation is already stressful enough without added stress from anyone or anything else!!!! Amen to that!!! I have dropped my work right back to part time, to take pressure right off me whilst my poor body rests. And these medications make me feel very tired and a bit spaced out at times, especially in the early morning!
It is approaching 4 months, and I never would have thought I would have to face this unimaginable horror in our lives.
You have been a shining light to me with all of your tips and support, thank you so much!!!! 🙏🙏🙏
I hope all is OK...I saw that a severe storm was going to hit Australia. I am spaced out all the time & I know mine is from being depressed during these months of pelvic floor dysfunction. Chronic Pain 24/7 changes a person. Oral Gabapentin at a higher dose then I am on really made me feel strange ...spaced out & I couldn't remember what I was going to do or get. My Gabapentin dose is so low, I doubt it does much or anything. Sometimes, I miss that really spaced out feeling from Gabapentin 🙃🤪 Like I mentioned, Hope all is OK & you were not affected by the severe weather. 🙏🙏
hope you have a good day too! My pain definitely is worse in the late afternoon and evening. I often use a heat pack at night time, which seems to help me a lot. I will definitely keep you updated with how I go. Keep being a badass and stay STRONG 💪 💪💪
Hi I have just come across your thread. What are your symptoms? I think I have PN. I feel like something is stuck up my bum and it gets heavy and uncomfortable. I also experience some numbness across my perinium. Can I ask who diagnosed you?
Hi I suffer from pudendal Neuralgia for 14 years. I have tried many cushions
My sister is always looking for remedies for me to sit on, with no luck
She saw a don't cushion at coles for 19.00 and it seems to he working. Just thought I would let anyone.e in Australia know
Good luck to every one finding anything that might help to receive symptoms with pelvic pain.
Thank you so much, would you please kindly be able to send a photo of the cushion? Thank you!
Sorry I can't send it at the momemt, having trouble loading It's a Gel Memory Foam Seat Donut Shaped.
Hello, nearly 9 years ago I suffered, at the hands of a surgeon that removed womb/ovaries and from waking up in “Recovery” to this second. My Virgina burns, like insane Sun Burn” 24/7/52/365….No let up. The drive initially to have Botox was two hours drive. By the time I returned home, my agony returned. Almost like the anaesthetic worked until that wore off. In my opinion this is a life long journey which has sent me over the edge at times. Like my head can’t deal with this constant burning. If you have any questions I am more than happy to point you in some different areas. I self lignocaine injection form as far up my Virgina as I can. Some days my pelvic floor locks on so tight, I cannot even self medicate. I take 16 tablets a day to function. At the ill hands of a terrible surgeon. No compensation in New Zealand 🇳🇿 so I just have to push on. I haven’t worked since 2016. I was once a hard working mother, now at 52, I feel like a little old lady. Don’t let anyone ever “down play” Pudendal Nerve Damage, mine was burnt with an instrument in surgery.
Take care x x
Omg that is an ordeal itself I feel for you and all the many more's who have gone down the road of going through an hysterectomy to be left worst much worst off my consultant on the day of my surgery called me in his office as he thought every procedure and tests I have had have all been negative I'm chronic pelvic pain he was stating we could operate get rid if the fibroids only by an hysterectomy I'm.59 but as the Dr's thinks fibroids do not cause pain only at degenerative stage explaining the hysterectomy might not solve this pain either I went home without having it and ever since regretted not going ahead 8 yrs ago we are having to fight constantly to try help ourselves to be without all the pain we have I'm still confused as to what's next very much feel like a guinea pig & I haven't got far with my pain management consultant & gp a big fat feeling useless and your on your own trying to feel better etc not winging but love listening to you all & advice
Thanks for your note. I am very sorry to hear that you are in this situation. I am praying for you. 🙏
You are right, this is a terrible condition. Have you tried any nerve blocks or other pain management therapy?
Yes I have tried pregab duloxetine about 3 just endured side effects off duloxetine terrible so bad but being a guinea pig for such a long time now you don't half get so fed up mainly trying to manage it all like everyone else it's disheartening plod on I keep telling myself😊
Hi Nike! I know what you're dealing with. I have tight pelvic muscles too. I'm female and mine started from repeat UTI's from menopause. I had Botox but it was pretty temporary and not total relief. I didn't do it again. I think what will help a lot is watching Dan Buglio's videos on you tube. His channel is called Pain Free You. He has a lot of pelvic pain success stories (men and women)...so check those out. A lot of my problem is fear of the pain and that creates a cycle that I can't break. But I'm working on trying to use techniques that Dan recommends to bring down the fear. There are other you-tubers out there talking about this topic. It might be the way out for you. Give it a try and God bless you.
Thank you so very much for this!!! Yes, I can totally relate, the fear of the pain also creates a cycle in me that is difficult!!! I will definitely watch his videos tonight, thanks again. Have you had any nerve blocks or other pain treatments?
You're so welcome! Let's try to get better together by watching his videos. You too DonDon. It is difficult to remain calm when you're so uncomfortable! I have taken up golf and other fun things to try to distract myself from the pain. Just having something to focus on other than pain seems to help. Winter is harder because I can't get out and walk and play golf, so I'm struggling a little bit more right now. But I just keep going and pray a lot. I never had any nerve blocks. I've just done physical therapy, dilators and botox one time. I finally quit PT and the dilators because they weren't helping. I've tried antidepressants for anxiety but they just made me feel horrible after a few days! I take a drug called Baclofen but it doesn't seem to do much. I do hope the videos help you!!!
Will watch Dan B video later 🙏
Wonderful! I hope they help you! 
I have and they didn’t work for me. I’ve had some vaginal blocks and now I’ve moved to a a sacral epidural and my pain is gone for 3 months at a time. For break through they have me on slow release morphine.
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