Anyone had Botox injections done externally in OI and/or Piriformis muscles to relieve tight pelvic floor muscles and pain? Interested to know outcomes, as been recommended to have it down now from my PT.
I had internal Botox injections into pelvic floor muscles previously but that never worked for me.
Thanks
I had them done and the softened my muscles, but it didn’t end up helping. I’ve tried everything outside of surgery with little success. I know it has helped others, though.
Thanks for replying Aryah. What were your symptoms you were suffering with out of interest?
And were you seeing a PT at the same time for ongoing treatment after you had the injections to help try and keep them relaxed?
I also had this done in Bristol. It gave me some relief for a few weeks the reverted back to how it was.
Lucy
Thanks for replying Lucy. Can I ask you, did you continue with Physiotherapy straight afterwards?
I cannot honestly remember, but I don,t think so. I have subsequently learnt that after procedures that help, is the optimum time to do physio as the muscles are not so spamsed.
Finally got huge relief from monster walk, which disappointingly does,nor seem to have had this effect on others,Just goes to show what a complex condition this is.
Lucy
Have you heard of headache in the pelvis? I read the book and attended one of the workshops last October - I’m essentially pain free now. It’s not cheap but it was a game changer for me. I suffered for nearly 10 years. They teach you a program that combines meditation and self administered physical therapy. But interestingly, mediation is 80 percent of getting better. What was crucial for me was recognizing the link between catastrophic thinking and pain. The pain is very real, but the more you worry about it, the worse the pain is. I
Before getting any invasive surgery, I’d highly suggest reaching out to them and attending a workshop. You have to go to Northern California for a week... but it’s the only thing that worked for me.
I read headache in the pelvis and I found it extremely helpful and I'm using a lot of there instruction but I can't seem to get the meditation down and as you say it's a huge part of it so can you tell me how you do it every day and for how long,thanks
no problem -- I'll do my best to explain it but I'm definitely no substittue for Dr. Wise. I'd say the majority of the clinic is learning this meditatation technique. Basically, you want to lie down somewhere with no distractions... in a position you feel extremely comfortable, using pillows, blankets, etc. You can be on your back or side, doesn't matter. Get a sleeping mask or eye covers. As you begin meditating... concentrate only the sensation of relaxing. The way I do it is to actually say "relax" to myself on every out breath. Over and over and over again, hundreds, thousands of times. If you do this on the out breath, you can feel you body relaxing, like it's sinking down. If you mind strays onto something else, like work, life, pain etc. -- which it constantly will -- simply return to back to focusing on the sensation of relaxing. This is very difficult... try doing it for an hour in the morning and then an hour in the evening. That's what I do. It's an enormous time commitment. It's wild to think that such a simple, self-help thing could be the key to beating this condition. But it works.
Additionally, you need to deal with catastrophic thinking. If you feel pain today or tomorrow, accept it, embrace it. Know that it won't last forever. Do not allow it to prevent you from doing anything you love or enjoy doing. Eventually, you'll forget about it.
Wow! May I ask what your symptoms were and where your pain was before you took that class? Are you able to sit without pain now?
My symptoms were tightness and pain in the rectal area. Felt like I could never relax and my muscles seemed to constantly spasm. I rarely have sitting pain now. The trick is to teach yourself to relax your pelvic floor muscles.
That's amazing! Did you ever have pain at your sit bone when you sat? Do you think you had PN or something else?
I did have that sort of pain. It made sitting extremely uncomfortable. I saw a PN specialist in Santa Monica who diagnosed me with the condition. But I was also diagnosed, by other specialists, as having levator syndrome, prostatits, etc. They all seem like different names for the same problem- pain in the pelvic floor area.
I got botox injections done in Bristol two weeks ago and while the pelvic floor feels softer and more relaxed I'm not feeling my sexual function return which is what I hoped. Going back to get another round to see if it makes a difference.
Dave, What were your symptoms please?
Did you have it done internally or externally?
He did them on the superficial muscles externally.
Yes thought that might be the case. I don’t think they do it externally on the NHS.
I’ll be getting mine done privately also but in London.
Hi JoJo012 I hope you're well. I read this as I've been searching for somewhere to get the procedure done, also in London. Are you able to tell me if you got it done, how it turned out for you? I hope well. Also, where you found in London that does this? I really appreciate it. Even if it's private. I'm also looking for a PT, if you have any recs let me know. I'm so desperate at this stage! I'm sure you understand. Good luck if you haven't had it done as yet!
Hi, for the external injections I had to get them done privately, as the don’t do the particular ones I wanted on the NHS. I had them in both Piriformis muscles and Adductor muscles both sides in 4 different places along. I have to say it didn’t help me pelvic pain wise in the end but did help release my hip tension pain I had.
I had it done by Dr Deanne Halfpenny at King Edwards Hospital in Harley Street area. My PT recommended (Maria Elliott) who came with me. I was also seeing her privately at the the time, as found the NHS ones I saw to be useless and the appointments weren’t regular enough. You really need to try and go once a week to make it work properly.
Maria is also based in the Harley Street area.
That's wonderful news, just that the tension has been resolved. I 100% appreciate that doesn't resolve the pain, I'm sure that's been quite frustrating to put it mildly. I'm presuming you're not seeing a PT anymore? Did you find that it just didn't do what you'd hope for? How are you now? Would you go back for the botox, again? I'm guessing you have PN, which so many of us have. I have to admit, I don't know if I do or don't, as in I question if my diagnosis was correct or not. Sorry for all the questions! I think it's awful that so many of us go through this.
Thanks so much for the info though, this is really helpful. Like, more than you know! I haven't been able to find anyone in the UK to do the procedure. And, I've been looking for a good private PT for years. Spent so much time going through the apts and doing the 'breathing' but it just wasn't working. I've done the NHS route too and not found much help, I'd almost given up tbh. I don't like to moan because I'm sure there's worse to moan about (!) but all these treatments are so expensive!
Any way, I do hope you're on the road to recovery! Take good care of yourself.
No not seeing PT anymore. Stopped once she closed for lockdown. I was seeing her for just over a year and whilst she had help to improve me it hasn’t been a total success for me. She probably helped me about 50% I’d say. Therefore I decided that if PT was the answer for me it would have worked by now for me.
I don’t have PN, just very tight pelvic floor muscles, mainly on my left side. This does give me some nerve pain but I’ve been told it’s just surrounding nerve irritation from the tight muscles, not PN. Apparently it’s very hard and rare to suffer from PN and far too many people are over diagnosed with this unnecessary, when it’s often just the tight pelvic floor muscles causing nerve irritation. Unfortunately you can get into a viscous circle pattern though, where the tight muscles cause the nerve pain and then the nerve pain then causes your muscles to tighten even more! You just have to find a way to calm it all down to try and break the cycle of pain.
And no I wouldn’t have Botox again. Had it twice now, both internally and externally and felt neither helped me with my pelvic floor pain at all. In fact for me the internal Botox actually made it worse.
I’m now trying out DCT instead but only been doing it for nearly 6 weeks, so early days yet.
I'm so sorry. It sounds like you've been through the mill and back again. I'm with you on the PT, I don't think I've seen good results beyond like 25%. I still use some of the techniques but, I can't help but feel there's more that can be done. I'm fairly certain my problem isn't PN, but I've had nothing but trouble trying to be heard by any dr/pt, anyone really.
Resistance stretching is excellent for many conditions, it's used for EDS too. I really, truly hope for your own sake that it works for you. I know it's a hard slog, and if you're not feeling too great it's hard to get on and just do it.
For what it's worth, it may seem strange, but well done for continuing to try new things and put so much effort into your wellbeing. I know that might seem weird from a stranger on the internet but we do share a common ill and I see a lot of people giving up and being so unhappy. Personally, I'd rather keep going but accepting that it may never be how it once was. If that makes sense? I can still be unhappy with how I feel but I would feel lost entirely if I didn't keep trying. Who knows, maybe one day I'll give up! haha. Right now, I have to keep trying.
Are you doing the course or the book? 6 weeks is decent. I know someone who's been doing it for the past 3 months, they're feeling a lot better. They're posture is a lot better, that's for sure. They're using a book though and doing it every morning and night, along with another book which is what DCT is apparently based on. Best of luck with it!
Thanks again for the feedback and info! I'd love to hear how you get on with DCT, keep us updated, if you want. 
Thanks for such a lovely email and I hope things work out for you to. I like what you say about not giving up, that is so me also. I want to try all possibilities to try and cure this thing. Like you I’m a fighter and don’t like to give in without a good try.
I’m actually doing the course on DCT not the book.
I think it might be worth you doing a trip to see Maria though, as she is great at diagnosing if you are possibly suffering from PN or not. She has vast experience in this area.
Happy to stay in touch, as you sound like a lovely positive person. Please feel fee to private message if you like. It would be great to swap stories with someone similar and compare notes ha ha.
Take care,
Jo x
Hi! I just read your post from 3 years ago! What is DCT? I have tried EVERYTHING there is for pelvic floor dysfunction!!!!! I do mean EVERYTHING!!!!!! I’m at my wits end!!!!! I’m thinking I might have PN but not sure!!! My doctors have tried EVERYTHING too!!! They don’t know what to do anymore!!!! I’m a tough case for sure!!! I hope I hear from u as I’m dying a little everyday!!!! Thank u so much!!!!!
Sorry for the late reply Karen, been very busy what with work and the Christmas season.
That’s a lot of explanation marks you use there!! 😁
DCT is Dynamic Contraction Technique. It’s something David McCoid developed with an American Physiotherapist. Basically dynamic stretching exercises that you have to do about 1 hour each day 6 days a week and build up to over a period of time. The theory behind it is you stretch out certain tensed up muscles that are around and support your pelvic area which leaves room for your pelvic floor to have less tension within it and soften. Some people say it works for them others don’t. I think it depends on what condition you have driving your pain. If it’s bladder issues then they say it’s unlikely it will work for you. Search David’s name on the internet and you can read up on it there.
I have been seeing my specialist PT for about 4yrs now on the NHS and I couldn't cope without their help. I have complex health needs but one is pelvic floor dysfunction, which causes my pubirectalis muscles to "lock". In extremely painful spasms, causing issues with my bladder and bowel.
I have been getting internal and external vaginal trigger point therapy along with botox injections into pubirectalis muslces. Whilst it doesn't eradicate pain it allows short periods of respite that allows me to walk short distances and can sit on bottom like A normal person.
I believe that the combination of therapies and treatments is very beneficial as it is relatively non invasive. Hope you find what works for you.
Thank you Skye. Was your Botox injections done internally or externally. And was that done on the NHS?
Injections done externally with consultant locating relevant trigger points in pubirectalis muscle. I have my treatment within the very overstretched NHS and I cannot understand why there is such a shortfall of specialist women's physiotherapists, I would definitely not be able to cope without my physio. I think for many it is a postcode lottery and I feel saddened that so many women are feeling let down and left alone to struggle with a very debilitating condition.
Where abouts is your NHS hospital then Skye?
I stay in the beautiful West coast of scotland. I have a multidisciplinary care team of gynea & colorectal consultants who work in collaboration with my specialist physio. They share care plans and treatments to help manage my conditions
I really benefit from the way they all collaborate with each other as you are not left waiting months between appointments and being passed round different doctors . The NHS gets a lot of bad press, they are underfunded and understaffed and undervalued. I was very proactive about my healthcare as i do have a few conditions that are interrelated. I chose an all female team as previously was let down by male doctors not "getting it" about female health, maybe just unlucky as there are really good male docs.I
Hope your treatment has a positive outcome for you.
Hi Skye22 This is great! I'm so pleased you're being cared for properly. How are you now? Can I ask, are you able to share or private message me which hospital/consultant it is that you see? I ask because it's possible to request through the NHS that a patient partially pays or directs funding to something they feel they really need or have been recommended. I'm looking at all available options atm.
Take care! And, thanks for your help.
Thank you Skye. From what I understand NHS treatment does tend to be a lot better in Scotland than England.
I wish you lots of luck also going forward.
I only had them internally and sorry they didn’t work either for me . Created more problems than cured - though the detrimental effects do wear off after 3 months
Botox in Pelvic Floor = Increased pain so far! 
Botox shots in pelvic floor
When does Botox start relaxing muscles?
Short pelvic floor syndrome and Botox treatment available on NHS
