Desperate for Botox suicidal please help

[Melanie9999]

Hi everyone I have had pudendal pain for 18 months, piriformis pain for 5 years and SI back pain for five years. I have a spinal stenosis at L5/S1 but a caudal block did nothing for my piriformis pain but back ache went for two weeks, now returned. Pudendal pain seemed worse because my bladder pain worsened with the steroids, had insomnia and severe sweat and anxiety too. Saw dr greenslade in September and not had any details of my date for a pudendal block which I am now quite scared off. I have had a lot of physio with no relief. My piriformis is so tight and I have been stretching and massaging for six months and still stiff and sore. Now the pain also starts from walking and exercising. I think my piriformis is taking over all movement as my abs are wrecked from surgery and my pelvic floor is also taking the strain it is so strong. I want the try Botox to either my pelvic floor or piriformis but want to know if either are a bad idea. Vaginal tens is agony. Nobody understands any if these health problems hear. Dr greenslade doesn't seem to believe in piriformis syndrome although my physio told him my piriformis is causing sacral torsion. Should I have Botox to my pelvic floor or piriformis. How much is it and who will do it in Uk. I am suicidal I need to try something drastic but also scared. All my pain is out if control. I can't sit down comfortably even on a toilet seat!!! My life is not worth living like this

[Melanie9999]

Also forgot to say I need to core exercises to help my spine recover but this gives me vaginal pudendal and bladder pain so would Botox enable me to do core exercises? I feel trapped in a circle I can't get out of, one thing has caused another I need to break this cycle, could I have Botox to piriformis both sides and pelvic floor both sides. My pudebdal pain has been diagnosed as bilateral. Advice is desperately needed, dr greenslade wasn't the help I thought he would be. How much does private Botox cost and who can do it? I will probably lose everything with debt but I am losing my life anyway so can't win whatever I do. I have been searching for help for so long

[molly]

Hi Melanie,

I have had Botox with Dr G at Frenchay, this had need discussed and planned as a course of treatment. Mine was just on one side so I don,t know whether he would do both sides at the same time.

Do you know what he has listed you for,if not you need to find out perhaps his secretary would be a good place to start.

The Botox did give me some relief for a couple of months so one again it is not a miracle cure.

It sounds as if you could do with a good consultation to weigh up what your options are, unfortunately you cannot mix HHS and private.

Have you thought about a sacral spine stimulator, or do you have other treatments you wish to consider, also what pain meds are you on?

Regards Molly

[calluna]

Melanie, if you are having thoughts of suicide then you need to address that immediately.

You can ring 111 if that is available in your area, or 0845 4647 otherwise. Please don't wait.

[mary jane]

You could try asking here:

http://www.gynae-centre.co.uk/fees/

they have botox, even though it;s for vaginismus....but you could try and ask if they can offer something different...it's 600 gbp...
skn clinic had botox for vulvodyinia but they removed that page

otherwise, you could try ringing up private hospitals ....
I'm interested in the botox as well, though I do no know if it';s right for me

[mary jane]

hi melanie, I finally found you a doctor via the nhs

quote "2011 I met Vik Khullar who examined me and said that I had very severe pelvic floor spasms which he felt was causing my Coccyx to contort and curl under me. He put me on his list for Botox injections to the pelvic floor"...

he is in london...google him and ask gp for a referral!!
good luck !!

quote source: http://www.coccyx.org/personal/2012/amanda.htm

[Violet M]

Melanie, I understand. I've been in a state of pudendal neuralgia where I did not want to live. This was before I had a diagnosis and had no clue where to turn. But you still have lots of options so it would not make sense to end it all. Please be a "squeaky wheel" and keep calling until you get the treatments/procedures you need. I don't know what the right options are for you because sometimes it's a matter of trial and error. I understand the fear that some treatments can make you worse but eventually you will find something that helps. So don't give up and please try to be strong until you find what works for you because you could have a great life ahead of you.

Violet

[Melanie9999]

Hi everyone, a lot later on and still not got very far. I have been diagnosed with anismus from a proctogram, basically my pelvic floor does not relax. I have bladder pain, constipation, pirifirmis and buttock pain and PGAD, the PGAD is the worst of the symptoms. I was referred to Mr Anthony Dixon because of the anismus, on the 7th October. Seeing Mr Dixon on Thursday, hoping to have botox. Has anyone else had all of these symtpoms and had botox? I had a pudendal block a week ago, so far it has made it worse but it is early days. I couldn't walk either, it made my thighs and buttocks so weak I couldn't stand up or walk all day I was paralyzed! I can walk now, but I am a weaker, however I have had muscular problems for a long time, and the endometriosis was so bad that I used to really tense up.

Any ides if botox is a possiblity and if it is dangerous etc? I really want to try something to relax my pelvic floor, I think my pelvic floor is causing this pain as the pain is level with my bladder in the vaginal area and in the bladder and in the rectum and severe pain on sitting on the buttocks even on a toilet seat, valley cushion helps a bit becuase it is soft. xxx

[Violet M]

Melanie, sorry to be answering this so late -- I got a bit behind on the forum. Just wondering whether you went ahead with the Botox and if it gave you any relief. It's really hard to predict whether it will help without trying it. Most people don't have a problem with it but I've known a several people who felt they had some sort of reaction to it and got worse. Sad...but as with any procedure there aren't any guarantees.

Take care,

Violet

[Melanie9999]

Hi everyone, I saw Mr Dixon in Bristol and he has put me on the waiting list for botox to the pelvic floor. I am supposed to be having it end of March/April. I am getting a bit scared because some people say it has made it worse? I have so many muscle problems I am scared my other muscles with over compensate, although if it helps with the PGAD then I will put up with muscle pain anyday! I can cope with pain quite well, it is PGAD that makes me suicidal. I have SIJD which I have been referred to Dr Grahame Browne in Birmingham for prolotherapy to my lax and hypermobile joints. I am a bit scared that having the botox before the prolotherapy might be bad, however I really want to try the botox because my bladder symptoms are awful. Basically my bladder feels like it sets of the PGAD when I urinate or whenever there is pressure to the bladder, when I pick something up and it touches my lower abdomen I get PGAD intensly for hours afterwards. I seem to have more abdominal symptoms than anyone else?? I have a huge scar vertically down my stomach all the way to the mons pubis and it has stretched due and is very sensitive to touch, if it is touched lightly in one spot, rather than all over with clothers, the touch in one spot causes PGAD. Not even Dr Greenslade or Mr Dixon know why?? nobody does know why. They say the nerve in the scar area is not related to the pudendal pain. Anyway can someone with botox success at least give me some hope? I can't find much about success stories here. Although I really want to try it, I am scared, however, could I get much worse!! I doubt it. I have also gained a lot of weight after the pudendal blocks and the caudal block which has depressed me a lot. NOw nearly 14 stone and the amitriptyline is also making me fat. I can't seem to lose weight no matter how many fruit and vegetables I eat. I do eat a lot more on weekends but I am very careful in the week to be strict. I can't stop amitriptyline it is the only thing that helps me sleep through the bladder pain, PGAD and I can go back to sleep after weeing (which I do 6 times a night!). Sorry for long post. Hope everyone is OK xxx