Health Organization for Pudendal Education

I wanted to share my experience with Botox. After about 9 months of physical therapy and many sessions of internal trigget point injections my doctors and physical therapists decided that it was time for me to try Botox. My pelvic floor was pretty normal but I was still suffering from disabling nerve pain. I went into the procedure rather innocently as I was told that i did not have much to worry about in terms of side effects. I was not told that a possible side effect was a severe and permanent increase in pain. The Botox was a horrific set-back that left me either bed-ridden or rocking my body on the floor. I was devastated and completely crushed. Whatever relief and progress that had been made with the help of physical therapy and trigger point injections was completely erased.
I wonder if there are others here that have experienced similar adverse effects with Botox. Please share with me your stories as I am still trying to make sense of mine.

Dear AS,

I'm really sorry to hear about your experience with botox. I think that many health practitioners often understate the risks of medical procedures, saying things like ". . . one in a million chance it would happen to you. . . .". I don't think they really have any idea how risky some of the procedures are, since many patients simply don't return instead of complaining.

I haven't had any experience with botox so I can't give you any words of wisdom about it. But I'm really feeling your pain and sending you warm healing thoughts. Hopefully you will feel better once the botox wears off.

Thank you for posting your experience so that the rest of us may learn from it.

Warm regards,

Lernica

I am so sorry for your experience. It sounds horrible. How experienced was the dr who gave you the botox injections with doing them in the pelvic floor muscles? I think dr experience cannot be overrated with this.

For me botox helps me tremendously although as soon as it wears off after 4-5 mos my full on symptoms recur. So it is only a temporary fix in my experience. The main side effects I have had is nausea, flu like symptoms and very bad stomach upset for about 2 weeks.

Merrie

I attend a doctor here in Northern Ireland who at the moment is treating me with botox injections after lots of other treatments have failed to relieve my pain. Botox injections worked for five years but the last two years (yearly injections) have not been successful. I have been having horrendous pain for nine years following a labiaplasty (completely unneccessary, just a whim on my part) on my left side. My whole life from the day I had this done has changed completely. I am in constant agony and am so depressed and tearful all the time. No doctor has diagnosed me with anything, they cant understand why I am in such pain following a simple labiaplasty. I have so many symtoms like urgency to use the loo with intense stinging and burning, numbness, stabbing and increased sensitivity, so much so that underwear is almost impossible to wear as all my pain centres in my left side of my vulva. I have now developed bowel problems to boot, just to mention a few. Everything was fine until I had my labiaplasty and as soon as I opened my eyes after the surgery I was in complete agony and have been so every since.

I am now trying pregabalin and amitripiline again and yet again as yet with no success. I am so desperate for an end to my pain as it is so completely disabilitating. I had to give up working and my enjoyment of life has disappeared and fear for my marriage as this puts a terribly strain on our relationship.
I would welcome any suggestions from anyone as to what they think I might have or what I can do.

Tigerlily,

It sounds like classic PN symptoms that you are describing. You have found the right place. Keep reading the material you find on this website and you will start to get some ideas as to how to get better. Welcome to the forum, where you are among friends.

Have to agree with Lernica (and Violet on other post)
Welcome Tigerlily. You will find the home pages very informative. Maybe print the symptoms page and/or letter to medical professionals out to take to your doctor. Might help them solve your puzzle too.
Helen

I must say that I had a terrible side effect as well. Only mine was severe and persistent nausea. It was terrible. I had 2 separate injections. The first time I had a low dose. (I cannot remember the exact dosage). 3 days later I noticed I was slightly nauseous. Both the doctor and I decided it was possibly incidental....as nausea is a rare side effect... I tried it again because I felt the botox did help my pain. We decided to double the dose. Big mistake. I lost 13 pounds over a 2 month period. It was terrible. Please be aware - google botox. Things can go wrong. I am better now, but it was not a good experience for me. Just thought I would share my 2 cents.

i am really sorry about your experience.
I also have a bad experience too. I have been getting 200 units of botox injections in my neck every 3 to 4 months for Cervical Dystonia.
I am 62 years old male with no health issues other than a neck injury. I eat very good and am in very good shape. I have no family history of thyroid problems.
I am very concerned that the botox has effected my thyroid. The Dr. treating me says you can read anything on the web but that does not change how I think. I thought this before reading anything.
Just wanted to put this out there.

really feeling sorry for you. that's really sad. and thanks for sharing your experience

Botox is a drug made from a toxin produced by the bacterium Clostridium botulinum. It's the same toxin that causes a life-threatening type of food poisoning called botulism. Doctors use it in small doses to treat health problems, including

Temporary smoothing of facial wrinkles and improving your appearance
Severe underarm sweating
Cervical dystonia - a neurological disorder that causes severe neck and shoulder muscle contractions
Blepharospasm - uncontrollable blinking
Strabismus - misaligned eyes
Chronic migraine
Overactive bladder