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!
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! 💪💪
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