Short pelvic floor syndrome and Botox treatment available on NHS

[Htemo]

I have a condition that has been diagnosed after many years suffering and pain. I am now receiving successful treatment. My pelvic floor muscles are in constant spasm, with severe spasms lasting hours-weeks and causing excruciating pain and incontinence. The condition has affected every aspect of my life over the last 35+ years. The condition may be related to my EDS (hypermobility disorder). I have SIJ dysfunction. I have had a rectocele and cystocele. I have suffered from IC and had every treatment going. I recently saw Mr Vic Khullar at St Mary's Paddington London. I now have Botox to my pelvic floor every 6 months. This reduces the spasm and allows my bladder to function more normally. I practice and teach Pilates to help with my EDS and strengthen my core and postural muscles to help my SIJ issues. I take nortyptiline if I have a particularly strong spasm. My condition is not well understood by medical professionals outside of Mr Khullar's team. My GP is next to useless. Other urogynae consultants do not understand this condition. I have seen so many posts on here that sound like mine. I want you to know, if you are reading this and thing you have the same, that you are not alone. There is someone who can help. Your condition can be managed and there is somewhere you can go. St Mary's is a teaching hospital so anyone in the UK can ask their GP to refer them to the clinic. Stay strong. Seek help and don't give up.

[jackytap]

I have read your article with great interest, my goodness there are so many things to remember and I forget so many as my pain takes over. My specialist was going to try botox but changed his mind and I am having a Video cystometrogram first to see what is going on. It has been going on for over 8 years and the pain has ruined my life. Can you tell me in more details exactly where and how the botox was injected. My next appointment is April 11th and I would like to give my specialist the details of what you had done, many thanks, Jacky.

[Htemo]

Hi Jacky I've had Botox injected to all the pelvic floor muscles (reached internally via vagina). My consultant is able to feel the spasm through physical examination of the pelvic floor. He then injects those muscles. This is NOT Botox to bladder. Just pelvic floor. My consultant has also given me 6-week courses of rotational antibiotics to treat moderate IC. Mr Khullar and his fellow Mr Digesu at St Mary's (Imperial College) are leaders in this field. Suggest you point your specialist in their direction or ask for second opinion if you're not happy with treatment/diagnosis. Best of luck.

[jackytap in reply to Htemo]

Thankyou so much for your reply, this gives me another question to throw at the Doc,blimey this can get so tiring trying to remember everything. Will let you know how I get on, Jacky.

[MrsEB1988 in reply to Htemo]

Hi did this work for you? I’m with prof Khullar and just had botox 3 weeks ago...

[CuppaTea]

Hi I'm really glad I found this post I am new to the site. I'm desperate for help but have been so confused on where to get it. I'd seen the list of 6 nhs hospitals on the resources and clinics page and had been trying to work out which one is best for me as I have a few weird things going on and the long list of specialists I've seen the past 6 years in the midlands has got me no where. I have weak pelvic floor muscles due to crohns disease and surgery to remove bowel and rectum (so I don't have a bum hole which makes my case a bit more unique) my whole pelvic floor spasms constantly it's just so painful. What also seems unusual with me though is my abdominal muscles spasm too. The physio I was having at Birmingham womens hospital has made things a LOT worse so I've stopped. I also have an extremely painful cervix and lower uterus, I have no idea if this is caused by the spasms or is nerve damage from surgeries or even adhesions, no one can tell me. I've been through the scans/tests/examinations and no one can give me answers nor can they offer any effective pain relief which baffles me. I've also developed bladder frequency/ irritation and painful bladder spasms. The gynaes/ physio/ pain specialists and urologist I've seen are not fully understanding what's going on with me, they're each trying to treat symptoms seperately and not looking at the bigger picture so after 6 years of no help and no life I feel like I need to take things into my own hands as I just can't go on like this anymore, I know you will understand as you have suffered for much longer than me.

Does St Mary's have a specialist pelvic pain clinic, pelvic floor clinic and urogynaecology do you know? I'm guessing I'll need all of these. I've managed to find out that Oxford has each of these specialised clinics which seemed like a miracle but of course how specialised they are is another question. I was struggling to find enough info on St mary's so I was very interested when you mentioned the constant spasms you have because that sounds like me, I never have a day free of them. I know my GP will refer me to whoever I suggest no problem but I'm going a bit crazy working out which hospital I want to be referred to. I'm glad you have found help finally this gives me hope!!

[Poppy26]

You could try the Bristol team mr Wong and mr Greenslade I'm sure they treat nhs patients. Both have trained on nante France under the guidance of the prof and they specialise in pelvic pain and pudendal nerve entrapment. Good luck

[Htemo]

Hi there St Mary's is a leading research centre. They have been excellent at putting me in touch with other specialists to ensure my condition is understood/treated by a multidisciplinary team. Here's more info on the services they offer: imperial.nhs.uk/services/gy... Best of luck

[CuppaTea]

Thank you Poppy and Htemo! I'm looking into both of these hospitals now. I just found out my gp has left the surgery I see her at and medicine in general I'm gutted, she was the only one I could rely on. I've made an appointment to speak to another gp about a referral but it's a month wait, nothing is ever simple is it.

[Htemo]

You're right, nothing about anything to do with what we have to deal with is easy. A hard path to travel and medical support is hard won. I don't have much of a relationship with my GP (who told me I was on a crusade when I asked to be re-referred) but when I met Mr Khullar all that disappointment and frustration was replaced with understanding and hope. I wish you luck with your new GP and hope you have a similarly positive experience. Never lose hope.

[CuppaTea in reply to Htemo]

Thank you I'm really hoping I can find someone who at least wants to carry on trying to help me once the general generic tests come back with no immediate answers. I feel your frustration with your GP, it's soul destroying when no one wants to help you. It baffles me that all the specialists who i've seen are happy to stop trying when their usual tests show no answers. Its as if it is acceptable to let a patient suffer as long as you've done the routine tests.

[sweetie-78 in reply to Htemo]

Hi Htemo

I've been meaning to get in contact with you for ages as I to have just been diagnosed with pelvic floor muscle dysfuntion (my muscles are in constant spasm) I also have hypersensitive nerves in the pelvis & suspected endo in the lining of the womb. I have suffered for 10+yrs in chronic pain & every area of my life has been affected. I have been refered to Oxford & see Miss Moore & her team. I see Katie for physio had 4 sessions with her so far, she has been an amazing support. I have an appt to see the counsellor too in May. How are you doing? Wish you all the luck. Nicky x

[mcpip]

hi i have one question can you contract the pelvic floor muscles once injected

[moneyangel22]

Hi, I'm sorry for your suffering but glad you have found someone who understands and a treatment that is helping! Can I ask about symptoms please? Do you have pain internally during intercourse? and unexplained lower abdominal/uterus area pain and tenderness? Thanks

[Nicolaatherton]

Hi ,

Your story has given me hope , i have suffered for 3 years now with severe bilateral pelvic floor and bladder spasm , i read your story and got myself an appointment a pricate appointment with dr khullar at st marys , he has recomended botix injection which im currently waiting for on the nhs , please could you tell me do you still have this procedure and is it continuing to help you .

Thankyou

Nicola

[MrsEB1988 in reply to Nicolaatherton]

Hi! I know this was 3 years ago but did it work for you? I’ve just had botox with prof Khullar too. 2 weeks out and no change yet

[goha]

Could you advise us whether the botox injection can be applied during the first visit or whether you have to make two appointments: the first to assess the condition and the second to treat it.

[Htemo]

Definitely will need 2 appointments (minimum) - one for assessment and 2nd for treatment. Treatment is often under general anaesthetic so would be as a day patient (expect it to be all day). Even without general anaesthetic, at St Marys at least, it is done as a day patient - you just don’t need an escort home. It is an extremely painful and undignified treatment without general anaesthetic - not for the faint hearted!

[MrsEB1988]

May I ask how you are doing now? I’ve just had botox with prof Khullar