Botox anyone?

[kalecolbe12]

Just wondering if anyone has had long lasting pain relief with Botox into pelvic floor or even resolved their pain, how many treatments it took and how long in-between?also wondering what treatments have worked well for people...thanks

[Hidden]

Hi

Thank you for posting this as I'm really interested in this too. I wonder where you can get the Botox?

I am trying to get my doctor to prescribe Baclofen muscle relaxant and antispasmodic. I'm finding with physio, bowel movement, exercises etc. that muscles go into painful tense spasm so I end up back at square one. So far no success in getting it prescribed.

I'm currently trying taking CBD from the health shop.

Best regards from Korin

[kalecolbe12 in reply to Hidden]

Thank God I have muscle relaxers Korin....it's the only thing that helps sometimes...do you get pain after bowel movements too?...also I was wondering what your prognosis is and how long you had it...you may have told me but I forgot I speak to so many people..as for the the botox,I hear mixed results... I will try cbd too

[Bestill in reply to kalecolbe12]

Hi there! Do you have pain during the day without a BM or only with BM? Mine is mostly left sided and is worse after BM, but I feel pain when I sit too on the left side towards tailbone, a spot deep in the buttock, and anal. It’s a raw/burning pain in that area.

[Hidden in reply to Bestill]

Hi

Just wanted to make contact as I'm suffering fairly similar symptoms. Mine more centralised.

Korin

[kalecolbe12 in reply to Hidden]

Sorry cut myself off anyway I've actually had weeks of very little to no pain and my PT said that now I'm in central sensitization where my muscle and nerve memory things I'm supposed to be in pain but there's no reason for it but it's hard to believe because the pain is so intense after the bowel movement and it gets worse after a few hours or gets better after a few hours it's so confusing... I was wondering what imaging you had and if you've had colonoscopy

[kalecolbe12 in reply to Bestill]

Yes usually after bowel movements...same area as you...but feels like really heavy and pressure too as well as pain....my cyclobenzaprine helps a lot and doesn't even make me tired...just relaxes me and I can take one or two a day instead of three that I used to....I have actually had weeks of very slight pain too which my pt says is because my muscles are now relaxed and

[Hidden in reply to Bestill]

Wow, did I wright this I don't think I did but to find some one with the exact issues I have is really freakie and I am male and on the westcoast of the US

[kalecolbe12 in reply to Hidden]

It's a miracle ,!!no but seriously I don't know how but if you need help with this you're in the right place!! What's going on with you and what have you tried??

[Hidden in reply to kalecolbe12]

Hello again

Thank you for replying. It's great to be in touch with those who understand.

Pelvic floor problem with front area for 30 years, always understand undiagnosed. It wasn't until end of last year when I was using legmaster home exercise machine (involves tightening and lifting pelvic floor by tensing and look lifting everything in pelvis while you perform addiction and abduction of legs standing). I then developed severe rectal symptoms which I recognised as very similar to front symptoms) Medical profession still in denial about it as you can't see on scan. Saw Dr Greenslade in Bristol who confirmed too tight pelvic floor. Suggested lots of painkillers but was leaving loosening it off to Physio. First physio was hopeless. Seeing another one on Tuesday. Also booked in to Sayer Clinics in London. Very on my own as the GP does not recognise Pudendal Nerve. Nerve heard of it! Just changed GP. Will keep pleading my case. Because you can see Tarlov Cysts on scan the medical profession want me to pursue but is red herring I'm sure.

Yes, I find my rectal muscles go into spasm after bowel movement. Horrible unbearable pain.

I looked up Botox pelvic floor in UK and there's a guy in Essex spire hospital who does Botox injections for levator ani. He's a procologist and surgeon. He sounds good

Thank you for being in touch.

Wishing you a day of less pain.

Korin

[Gou20 in reply to Hidden]

Hi Korin. I have just had my first visit to Sayer clinic. So far promising.

[kalecolbe12 in reply to Gou20]

What did you have done?

[Hidden in reply to Gou20]

Thank you very much.

You have given me hope on a day where my GP told me I should just accept my condition and pain.

Really appreciate your message.

I'd be really interested to hear how it goes.

My appointment is on 16th March. Travelling from Liverpool area.

Korin

[kalecolbe12 in reply to Hidden]

What are you getting done at appt Korin?

[Hidden in reply to kalecolbe12]

I've written a long reply but forgot to ask.... what's the name of the muscle relaxant you take please?

Thank you.

Korin x

[kalecolbe12 in reply to Hidden]

Yes I go into spasm after bowel movements too...ugh...only thing that I find helps is my anti spasm muscle relaxer cyclobenzaprine...it makes me feel normal and if I take them for a few days with some ibuprofen I can get a few days where I don't need any meds until I have a bowel movement that might kick it off again....I am definately better after all my pelvic pt and diligently doing the stretches and breathing good I feel like the muscles go back faster to less pain now than they used to when I would have it constantly but I still find like I need that muscle relaxant take it at least three times a week but I used to take it everyday for 3 months so

[kalecolbe12 in reply to Hidden]

We have exactly the same thing Korin...I even wondered if I got a colostomy if then the pain would go away since I wouldn't have to have a bowel movement ,buy the maybe the nerves would still flare up....I don't know...what do you think of that idea...I know it's redical but I wondered

[Hidden in reply to kalecolbe12]

Hi again

I know what you mean about colostomy but my own thought is it probably wouldn't help as pain coming from nerves. All very confusing. I've read of people who go through all sorts of procedures but still have the pain.

I don't buy the pain centralisation thing at all. I know your brain can learn certain pathways but surely pain would always be exactly same then. Doesn't hold logic. Seems a fob off to me.

I went to GP this morning and she said can't have antispasmodic as are a black or amber drug. Said often these pain syndromes have no answer and suggested I take paracetamol and live with it. Talk about taking away hope.

The rear end started with what was effectively trauma end of December but they seem to now be turning it into chronic pain condition.

Does your pain ever go away?

Was it you who sent me your email address?

Best wishes from Korin

[lucyp]

Yes I had Botox with Dr Greenslade in Bristol. It gave some relief but only lasted a few weeks.

Lucy

[kalecolbe12 in reply to lucyp]

I believe from other people i have spoken to that it takes several Botox sessions to work more over time

[lucyp in reply to kalecolbe12]

Yes Dr Greenslade did say that repeated injections would eventually weaken the muscle. I had two, I don,t know how many the NHS would have funded, but went on to find my own way.

Lucy

[Red1974]

Would love to do Botox in my clitoral area.

[KellyTab]

I’m also interested in this. I’ve been offered Botox for PFD and vulvodynia which I’m suffering from really badly at the moment. I take nortriptylene but it’s not really relieving any pain at all.

[swt16s]

I’ve had PN since early 2018, chronic pelvic pain since 1998. Had 7+ rounds of pulsed radiofrequency ablation of PN with and without Botox transgluteally (long needle through gluteus muscle to pudendal nerve via CT guidance) 7 times. Brief periods of relief after 2+week flare-ups. Then tried cryoablation with Botox which worsened pain. I’m in the US, and this was all done under the recommendation of Richard Marvel, pelvic pain specialist in Annapolis, Maryland, in collaboration with interventional radiologist, Howard Richard, at the Unuversity of Maryland. All over a 14 month time span.

I then sought out world-renowned PN specialist, Dr. Michael Hibner in Phoenix, AZ. He does the procedure transvaginally under anesthesia. Flew out for 3-day consult with his team, then had procedure done twice. Unfortunately, I had a rare 6-wk flare the second time and no improvement. Quit PT after 3 years and I am back to managing pain as I could not handle the internal work and was simply just over it.

I have been on Cymbalta for many years due to depression and anxiety. Doctors feel like this also helps with pain. Additionally, I am prescribed a vaginally suppository with Valium/baclofen/ketamine as well as a topical compounded cream of amitriptyline/Baclofen/gabapentin. These make life bearable most days. I could not function on oral amitriptyline or gabapentin.

I am seeing a massage therapist trained in traditional Chinese medicine hoping she can help me. I have also ordered a home PT program called DCT fir pelvic pain and am hopeful it will help me on my road to recovery. I haven’t started due to life stressors and hoping the massage therapist can loosen up the myofascia before I dive into the DCT so it won’t be as strenuous on my body.

[kalecolbe12 in reply to swt16s]

Yep dr. Hibner is here in Phoenix where I am and I thought of Botox but I hear so many conflicting things and as you said it didn't really help you so I am doing the more Eastern philosophy now like you are... Do you have pelvic floor dysfunction with pu dental nerve irritation or do you have entrapment? did Dr Hibner do the t3 MRN to see if your nerve was entrapped or not before he did anything? I have had pelvic floor physical therapy for the last eight months and she did pudental nerve glides and mobilization and I couldn't take the interior rectal which is where my pain is but I was able to do interior of vaginal without much pain but as you say I feel it helped some what I know but you can't keep going forever if it's not really helping a lot...I am on cyclobenzaprine muscle relaxers which have been great because they don't stop me from being alert during the day and I'm fine on them they just calm everything down...and I also have gabapentin to try but I am trying not to use it....I also have the Valium and lidocaine suppositories that I can use if I need to but it felt like they burned a little bit...I am going to try additional Chinese acupuncture and one particular one called battlefield acupuncture which they use for the troops to take pain away on the battlefield... I will let you know how that goes and also aconsidered DCT but I was wondering how it really works I think it seems like it's resistance training and David McCoid thinks the problem is in your glutes SI joints and hips is that correct? If you can give me some idea of what kind of exercise is it is but I may get that also...stay in touch please

[Painsogreat in reply to kalecolbe12]

You are lucky to be so close to Dr. Hibner. I just got back from seeing him for the first time. I live in Cincinnatti and the plane ride nearly killed me. He did the pudendal nerve block and I flew back the next day. Big mistake-Pain unbearable. He did say it would take 5-14 days for relief. I will go back in May to have the pelvic floor botox as well as another pudendal nerve block and a look at my bladder volume. It is discouraging to read about those who have had poor results but I believe there are many success stories. I just hope I can afford to keep going to see him.It is expensive to stay in Phoenix.

[kalecolbe12 in reply to Painsogreat]

Did you stay in an Airbnb?it's a lot cheaper than a hotel... Yes I understand a lot of people have success with Botox and some don't I myself have just been using my muscle relaxants and gabapentin if I need it and ibuprofen if I need it but I've been doing mostly the curable brain training now relax my nervous system see if that helps... Did 8 months of PT which helped ...as my pain doctor said it takes a little bit of everything to manage it. And you actually get used to a little bit of pain at least but I'm taking the word pain out of my vocabulary and I'm going to try and do positive reinforcements...I may try David mcoid's DCT training too!!I feel like I have less inflammation now I have cut out gluten and dairy though

[swt16s in reply to kalecolbe12]

I did have MRI ordered by Dr. Hibner at St. Joseph’s. To clarify, I asked and was told they do not have the T3 capabilities but he has a specific protocol and works very closely with radiologist to be able to produce the results showing him what he is looking for. Anyhow, I have had chronic hypertonic pelvic floor/myofascial pelvic pain diagnosed in 2001, which he felt was inflaming the PN.

I do very much agree with the theories behind DCT as the myofascia is like a spiderweb is interconnected tissue that overlays your muscle tissue from the bottoms of the feet all the way up to the abdomen and from the top of the head down to the abdomen, meeting in the middle. My massage therapist has pointed out and worked on areas on my feet, heels, toes that are extremely tense/tight that she says are causing my knee/hip pain and same with other areas. DCT uses resistance stretching to pull apart the tight myofascial tissue, as well as strengthening since many people with chronic pelvic pain have very tight but weak pelvic floors and core muscles, as is my case. I have had SI joint dysfunction since I was pregnant in 2001-2002, and it was actually my chiropractor who felt my low back/hip/SI joint pain was being referred from what I later found out was endometriosis, pelvic congestion syndrome, as well as my hypertonic pelvic floor. It’s all interconnected so the DCT makes perfect sense as an actual cure where as the other treatments are more pain management and not long term fixes. And they just so happened not to work for me. I have read success stories, but for mine lasting nearly 20 years, I have a lot of damage to undo and repair.

I have actually just started cupping treatments with my massage therapist, which she explained as being similar to acupuncture, except with acupuncture there is a limited amount of needles that can be inserted vs. infinite amounts of cups that can be placed. Herbal tinctures are added to the cups and get into the body through the pores (vs. being prescribed Chinese herbal medicines while having acupuncture). I am interested to hear more about the battlefield acupuncture.

Will definitely keep you posted on my progress.

[kalecolbe12 in reply to swt16s]

Sounds the same as me except mine is all rectal pn pain,however I know it's a pelvic floor dysfunction because it often affects my vaginal and urinary tract too... I have some pain after bowel movements where the inflamed nerve is reacting and of course the muscles are also malfunctioning... my MRIs and CT scans were clear..haven't had the nerve MRI but my pt said same as you have...although now my muscles are relaxed but dysfunctioning for so long that now my inferior rectal branch of the pain nerve is inflamed and will take quite a while to go back to normal If ever (I hope )gastro wants to do a colonoscopy which I feel will flare everything up now that I've gotten somewhat better I just don't want to do it yet...I m really interested in following your story also ....let's stay in touch...can you pm me since I don't know how to do it?lol..I am older so not so savvy with tech

[swt16s in reply to kalecolbe12]

My rectal branch of the PN is also affected and I was told from the first Dr. I sought out for treatment that they cannot target a nerve block to that branch specifically due to its close proximity to the sciatic nerve. Hibner blocks the nerve before it branches off.

Will PM you so we can stay in touch.

[kalecolbe12 in reply to swt16s]

Thanks

[kalecolbe12 in reply to swt16s]

I forgot to say I agree with the tension being in all the body....and the cupping sounds interesting.... One last question ...are you considering doing DCT?

[swt16s]

Yes, I have purchased the DCT. I have not started yet.

[kalecolbe12 in reply to swt16s]

Okay please keep me posted and /or PM me about what you think of it and if you'd be willing to just give me an idea of what maybe one exercise is so that I can decide if I want to purchase it or not I would appreciate it but if not no worries

[Bestill]

Hi! How are you? I’ve heard you several times state that cyclobenzaprine help to you. How much do you take a day? I normally take 10 mg at night and now I have been increasing it 5 mg in the morning as well.

[kalecolbe12 in reply to Bestill]

I am only taking it as needed now...if I have a flare up I will take it

[Bestill]

How much daily did you find relief

[kalecolbe12 in reply to Bestill]

I did 5 mg three times a day for three and a half months straight and I believe that broke a lot of the spasm down....I am getting fairly frequent flareups because mine is the inferior rectal branch of the pudendal nerve is compromised but we don't think I'm trapped we think just from butt clenching during stress which I had an extreme amount of..... And of course it will flare after a bowel movement sometimes but I will take a cyclobenzaprine and put lidocaine in there also looking into battlefield acupuncture and CBD oil but I just think it takes years to get in this condition and it's going to take a few years to get out of it so we have to have patience...of course people do Botox with mixed results that helps and all the other nerve blocks etc ...other people get surgery to untrap the nerve but I'm trying to be conservative and it's the long route but the least invasive... pelvic PT has helped a lot too.... I'm about 15 months and now I'm definitely seeing some improvement but you never know when it's going to flare up

[Hidden]

Hello, I had spine/back issues since 1980 the short version is 1999 surgery 5 level fusion lumbar. April 2019 I sell and caused this fusion to move and have had bowel issues since as well as needing a complete new back surgery. Did not know what was wrong with my bowels had know idea of what kind of Doctors to go to went to 3 different Gastro Doctors at least I got a Colonsocopy and it was super clean for a 68 year old only 1 internal Hemy.

But the back surgery couldn't wait . Its amazing what they can do with robotics. My surgery was 12 hours over 2 days the new fusion is from S1 to T3 and I am 2 inch's taller. Finally found some info on bowels by searching "it feels like I am sitting on a Lump" most of the Pelvic floor PTs would not see males or take my insurance. Fortunately one of the highly rated PTs that would see males was only a few miles away so had to pay out of pocket. the PT gave me some Doctors names and another PT that took my insurance. at that time every thing was still normal the virus had not caused any issues. So it took a month to get a Dr. appointment and the first test a "DEFECOGRAPHY" took another month then getting to see the doctor again another month . my condition has 100 and 1 names "Pelvic floor dysfunction" "Paradoxical Puborectalis Contraction" "Obstructed Defecation Syndrome (ODS)" "Dyssynergic Defecation". Plus "Pudendal Neuralgia " I may have that under control but for how long I don't know. Ok had the "Defecography" with a diagnosis "Nonrelaxing Puborectails Muscle". Found a doctor close by that would do some of the exploratory injections . I first went to him to get a Pudenal Nerve steroid injection the theory was that this nerve was the cause of the Puborectails problem he talked me into a "Gaglion Impare" injection that did not help then I had to insist on the "Pudenal Nerve" injection well it helped but at a cost I now have "Pirformis Systom" due to how the procedure was done. then we did a "Superior Hypogastric Plexus Block" got nothing from that. So I had the Botox injections in the Puborectails Muscle a few days ago and the first day I thought I could feel a difference. But today had to use an enema to move thing and I am sitting on ice as we speak. My next step is to see about PT from "DCT

Dynamic Contraction Technique" was hoping to go and see them in person but they are a little to far for a day trip. dctforpelvicpain.com

CBD may help but you need to find a good source it did not help me but I have a lot more issues. The Botox is still a good option it was only $600 out of pocket insurance would not cover. I hope I get some releaf, I have only been suffering for a year and I read stories of people suffering alot longer I don't know how they do it.

[Ailiesonkerr]

Hi kalecolbe12 I think we have spoken before as I have some symptoms etc. that were a bit like you. I have had Pudendal Nerve entrapment/neuropathy sort of diagnosed. I was told the only way to really find out was to have the nerve block done, but I had read that some people had bad reactions to this so I did not want to go down that route. My pain is only when sitting of having tight clothing next to my skin, the compression just brings on the pain, which is like burning/raw feeling, like someone has poured acid over my skin..... But also after reading numerous posts on this site, some of my previous history I think could also be related to it..... I had endometriosis, then had full hysterectomy like 12 years ago. I now suffer with chronic constipation, but I must say I cannot pinpoint if that makes is worse. I have had this for past 3 years and I am on Amitryptilline which I would really like to get off. Anyway I finally found a Pelvic PT very close to me and she helped a little but think it was more I was just so relieved to find someone who knew exactly what I was talking about!! With the PT we usually just ended up talking..... finally I asked her if she could do some accupunture, but I am not sure that helped. Anyway I sit down all day for work so by end of day I am in agony and I was just wondering if perhaps Botox would help and I saw your post on her from like a year ago..... I just wondered if you had found any answers as I feel I am back to square one again and had to up my Amitrytilline - have you found any better solutions that are helping you?

[endoTHENmesh]

I have lasting relief after 2 rounds of botox injections into my pelvic floor muscles. I had the first round (50 units) in April of 2022. I had a second round of 100 units in July of 2022.

Things that are important to get relief AND keep relief.

1) My gyn examed me again right before doing the injections. She made sure she knew exactly where the trigger points (or most tender points) were at that time. Remember it is your pain. That means you chose what you cannot live with. My gyn injected most of the botox where I directed (3/4) and the balance based on her understanding of anatomy.

2) Once the muscles begin to relax, you have a window to "rehab" the muscles. After the botox took effect after the first round (about 2 weeks) - I had pelvic floor PT twice a week. After the second round, I had myofascial release of the abdominal muscles (adhesions, fascia) that could be accessed from the outside. The botox not only stops the spasms, but it numbs the nerves (pain) during that work. It lasted 4 to 6 weeks after it took effect - for me.

Hints on where to work: As the botox took effect in each round, I made notes of where the pain and muscle spasms released. It was very easy to show my PT and then my myofascial therapist, where it was previously spasming - so they could work to "restructure" the muscles and fascia. Neither of these were fun (they were painful), but we were trying to keep things from "rebounding". Apparently with long term spasms, the muscle fibers actuallychange character - so you have a windows to undo that.

So my message is - be prepared to do some sort of body work after the botox to try to keep the pain from returning. While the first round (pelvic floor PT) did not work, the second round (myofascial release) is keeping me pain free. I still have to see that therapist about every 3 weeks...

Best of luck and do not give up. I had been in chronic pain for 7 years and unable to bend at the hips to pick something up off the floor. I am now back doing yoga... Don't give up!

[sungirl55 in reply to endoTHENmesh]

Hi Endo! I just saw your reply to this post. I'm not the author of the post you were responding to but I'm just wanting to ask you a few questions. I am so encouraged by your post! I just had a Botox procedure 8 days ago and am disappointed because I don't feel any relief. My pelvic muscles are still tight and spasming. But I noticed you said it took you two weeks to feel the effect of the Botox. Is that correct? My doctor said it should take effect in 3 to 4 days but that didn't happen for me. My mom and sister get Botox for their faces and they said it took them 10 days to 2 weeks to notice an effect.

I also thought it was interesting how you explained PT after Botox. I have been doing PT once a week but I think I need to up it to twice a week. I've been plagued with a tight pelvic floor for about two and half years and just trying to treat it with PT and dilators. I wasn't having much luck so I opted for a Botox procedure. My PT person does internal work and outside massage on my abdomen, glute muscles and hamstrings. Do you also use dilators?

[endoTHENmesh in reply to sungirl55]

I noticed the relaxing of the spasms around day 9 or 10, but it took a full 2 weeks to get the full effect. I took zinc supplements before the botox and for a couple of months thereafter. Zinc is required for the botox to work, and we may not all eat right. Never too late to start, as it also prolongs the botox. Stay within the FSA max...

I did not use dilators, although they were offered. Just massage of the internal trigger points and stretching of the (mostly) abdominal fascia externally.

Wishing you success and all the best!