Botox: Hi Everyone- for those of you... - Pelvic Pain Suppo...

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Botox

Dem74 profile image
13 Replies

Hi Everyone- for those of you whom have gone through the pelvic floor Botox procedure, I was wondering if you could please tell me how many units of Botox you received, and if you had to repeat the injections. I originally heard 200 from one doctor and another doctor started at 100. Just wondering how other doctors are dosing Botox for this procedure. Thanks in advance!

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Dem74
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Skye22 profile image
Skye22

Hi there, I have just had my second round of botox (50) into the pubirectalis muscle, after trigger points identified. initially I was sceptical about getting more injections as I was still getting pain after first injections, however it was reduced. It was about four months on that my pain increased and I realized after talking to my consultant, that the first injections had begun to wear off and my pain was steadily getting worse again. (you can only have injections 6mths apart) With my first injections I guess I hoped to be pain free so I would advise others who are thinking about getting botox is be realistic about the outcome. Having four months of reduced pain was good and I am hoping for the same again. Be mindful that everyone will react differently to botox and it will have different effects depending on where you get the injections and what your conditions are. Whatever you decide I hope it works for you. I received my treatment through the NHS. Good luck.

Dem74 profile image
Dem74 in reply to Skye22

Hi! So 50 units into one muscle really makes be think I may have needed more Botox. So puborectalis was your only problem muscle? I did 100 units into whole pelvic floor. Yes, I hear that usually more then one round of Botox will be necessary. 3 seems to be the magic number. Thank you for responding to my post. Best of luck to you as well!

Skye22 profile image
Skye22 in reply to Dem74

Sorry dosage should have said 5 injections of 50 units of botox into pubirectalis and levator muscles some of them was done vaginally.

kalecolbe12 profile image
kalecolbe12 in reply to Skye22

Can I ask you what your diagnosis is ?or is it just pelvic floor dysfunction?I was wondering where your pain was as in vaginal area or rectal area etc?also did you go to a pelvic floor physical therapist at all?sorry for all the questions..just trying to understand all these issues

Skye22 profile image
Skye22 in reply to kalecolbe12

Hello there, my diagnosis is complicated so will try to be brief, an umbrella term CAPPS, chronic abdominal pelvic pain syndrome covers multiple issues, there is really good info online .when I read up on it things started to make sense only took 30 odd years!!!! I have chronic adhesions on bladder, bowel, abdominal and pelvic areas. I have dysfunctional bowel so have to do daily irrigation and manual extraction and yes it is as bad as it sounds. This in turn affects my bladder with severe incontinence. My levator and pubirectalis muscles go into horrendous spasms almost like they stay locked with pain radiating from vaginal and anal areas and down the back of my legs, all of these issues are interrelated and I must say that my conditions are at the severe stage and due to complications surgery is not an option,hence I take a lot of meds and I am now trying botox injections. My saviour is my specialists who all work together to try to make my life as tolerable as possible. My PT does trigger point therapy vaginally which lasts about a week of reduced spasms and pain. A mixture of meds, injections and PT does releive some pain but realistically I will always have some pain but I remain positive and adapt my life accordingly and one of my goals is to sit on my bottom like A normal person!!! Hope this answers some of your questions and stay strong remember all our conditions are personal to us and what works for some might not work for others.

kalecolbe12 profile image
kalecolbe12 in reply to Skye22

Can you please let me know how the Botox works for you?thanks

Skye22 profile image
Skye22 in reply to kalecolbe12

It's difficult to describe, it reduced the intensity of the spasms some of the time but not the frequency. Because of my symptoms of related conditions some days/weeks are better or worse and I sometimes struggle to get the balance of meds, and physio. Also it depends on how good or bad my issues affect each other and how they impact on my levels of spasms and pain. As I said previously I really noticed a change In levels of pain when the botox was wearing off after about 4ths and it was only then that I realised that the botox did help.

kalecolbe12 profile image
kalecolbe12 in reply to Skye22

Yes a friend of my nieces gets Botox every four to six months in her bladder because she has interstitial cystitis of course that's the national health and it's difficult to navigate any medical system as we all know...I am here in the US and I am on Medicare as of this year ...I am a young 65 !!and so far I am liking my new healthcare system...they take $130 a month out of our social security to cover it but we have a few copays...well if you need to talk I am here!!

Skye22 profile image
Skye22 in reply to kalecolbe12

It has taken me 30yrs of endless appointments, various tests, lots of surgeries to now get a proper diagnosis. I changed hospitals and now have 2 female consultants, a Gp and a female PT. I felt that a male consultant couldnt really understand our lady bits and was disillusioned to the point of giving in. I am a young 57 and I truly intend to live life despite my pain!! Likewise I'm here if you want to chat.

Dem74 profile image
Dem74 in reply to Skye22

Hi Skye22- I just wanted to say thank you again for responding to my post... Also, I want to wish you the best of health possible, and to let you know I will keep you in my prayers.

Frankieandgracie profile image
Frankieandgracie in reply to Skye22

do people wil this condition dysfunctional defecation and pudendal neuropathy with rectal pain amoung other debilitating symptoms that are felt can they claim disability for it.

Skye22 profile image
Skye22 in reply to Frankieandgracie

It depends on diagnosing your condition and how it effects your daily life.

There is a good NHS link on benefits which could give you more information.

Frankieandgracie profile image
Frankieandgracie in reply to Skye22

thankyou for your kind reply😇🌺🌴🌈 wondering if any have and if possible

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