Anyone had botox into pelvic floor muscles and/or a cystoscopy?

Hi everyone,

I need some advice as to people's experiences of botox and cystoscopies...

I've been offered botox for my pelvic floor pain (at St Mary's Hospital, Paddington) and they also want to check out my bladder 'just to make sure it's okay' by doing a cystoscopy, but I really don't like the sound of the possible side-effects of the latter, e.g. bladder infection and bleeding, which can sometimes become chronic! :( . I can't make up my mind whether to 'go for it' or not, i.e. the botox. (I think I've almost decided not to have the cystoscopy as their only concern was that they elicited some pain when they put pressure on my urethra during manual examination but, as I also suffer with generalised fibromyalgia - which causes wide-spread muscle pain anyway - I'm not surprised or worried at there being pain when the tissues were pressed hard in that area....although maybe I should be worried?!)

The consultant gynae I saw at St Mary's was Mr Vik Khullar, but I don't know who will be actually administering the botox into my pelvic floor. I was told by Mr Khullar that I have a muscle in constant spasm in my pelvic floor and when he examined me he certainly managed to elicit the burning pain that I experience whenever I sit or stand, which gets worse the longer I stand or sit (with it being especially bad the longer I sit).

I'm really scared that botox might make things worse for me....as at the moment I do get total relief from the pain when I lie down flat in bed. (I think if the botox were to make my pelvic floor hurt while lying down - which would obviously interfere with my sleep - I would rue the day that I ever agree to botox and feel like committing hari kari, especially as I already have such a lot to contend with health-wise, e.g. chronic wide spread muscle pain caused by fibromalgia, chronic fatigue, hypothyroidism, a rectocele and ocular myasthenia gravis.)

My pelvic floor pain came on after using a neuro-stimulation 'kegel' machine with probe (a 'neurotrac' machine). Even though I used it judiciously and there are other factors coming into play, i.e. I am 58 years old and 8 years post-menopausal, have vaginal atrophy and had lost a lot of weight circa the time that my pelvic pain came on with a vengeance, I really think that it was the neuro-stimulation that was the culprit and triggered the pain (over 8 months ago now, so it's now pretty much become chronic). I was using the 'neurotrac' machine with probe because I also suffer with stress and urge urinary incontinence and was told that this was due to weak pelvic floor muscles and that it might help.

Is botox into the pelvic floor and cystoscopy ever done at the same time, from anyone's experience?

Any advice gratefully received.

Thanks in advance to all. (Sorry it's been quite a long one!)

Fielder

8 Replies

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  • Hi. I've been using botox for pelvic floor pain for several years and it's been great. The cause sounds logical, because it can come from too much muscle tightness--too many kegels can be harmful. In my case, I have an autoimmune disease which causes muscles to pull the pelvis out of alignment. But there can be many reasons for this malady. You aren't crazy! Botox is very sensible and useful medicine.

  • Thanks very much for your reply, SheRa13,

    Can I ask what side-effects, if any, you have experienced in having the botox?

    Also, it's very interesting to me that you mention that you have an autoimmune disease which causes your muscles to pull your pelvis out of alignment, especially because I experience similar problems that I have always put down to my fibromyalgia. Every now and again the muscles in my sacro-iliac region spasm and wrench and torque my pelvis sometimes to the extent of not being able to weight-bear due to the pain - anything from a few days to sometimes several months. And, about 2 weeks before my chronic genital/pelvic floor pain came on, I was not only using the neurotrac machine, I also experienced a bad spasm of my pelvis which lasted about a week, where all I could do all day long was lie on my electric recliner and wait for the spasm to subside (my muscles go like concrete)...

    Would you mind telling me what auto-immune disease causes your pelvis to go out of alignment - as I've always wondered if mine might have a different cause and not be purely down to my fibromyalgia?

    Many thanks.

  • I've had many botox injections and cystoscopies. Cystocopies hurt because I had mesh in my urethra. My urethra has been extremely damaged. However, they are really minimally invasive and give the doctor a good look at everything from the inside. I think most recover from it just fine.

    Botox injections have given me mixed reactions.

    1) They are extremely painful injections. Doesn't last long, but it is torture.

    2) They worked for me and allowed me to be able to walk for the first time in a long time, problem being for me they only lasted a month to 1 1/2 months. So at first it was great, because it knocked my pain down so much. As time went on they became less effective. They gave me some life back for a short time. But this differs for everyone, some women report 9 months or more of relief.

    3) Botox injections also cause the muscles to become paralyzed. So this increased my atrophy of the piriformis and gluts. But it is also what stopped the pain.

    4) Are the injections for the bladder or for pelvic floor dysfunction? - I have both bladder and pelvic floor dysfunction, but was given them for the pelvic floor issues. I have pudendal neuralgia.

    5) Since you have fibromyalgia, I think some of the drugs for fibro might work better - although they've tried me on all of them and the side effects are horrible for me.

    6) While my pelvic floor was in complete spasm the valium (2.5mg)-lidocaine (50ml) - flexeril (10mg) suppositories (vaginal) worked the best for the pain. They relaxed the pelvic floor. They were compounded by my local pharmacy. Some women have told me that neurontin in the suppositories helped them a great deal. I can't tolerate neurontin.

    7) Amitriptylene is also something that has helped many. It causes my pain to get worse.

    8) I too have complete relief while laying flat on back in bed - of course, this is no life. Have you been looked at for pudendal neuralgia or any other nerve issues, other than fibro?

    All of this is so complicated. I wish you the best of luck and hope. That an answer will be found to give you relief that you desire.

    Desperate for relief.

  • Hi desperate for relief,

    Thanks so much for taking the time and trouble to reply.

    I believe that the botox injections are for pelvic floor dysfunction only. (Whereas the cystoscopy is to investigate why my urethra hurt when they put pressure on it when they examined me.)

    As the botox injections are torture - don't they ever give some sort of anaesthetic? - I'm not sure whether you're in the UK or not, but I was reading on another thread that someone in the USA had botox into their pelvic floor and they gave her 'twilight' anaesthesia so that she was too 'out of it' to remember the pain. (I'm in the UK though.)

    I've had fibromyalgia since 1997 and have had tried most of the pain meds that they prescribe for it...And like you, all of them have given me intolerable side-effects of one sort or another, to include amitriptylene. (The med that worked the best was pregabalin, but I had to stop it because it turned me into a zombie - Another side effect of pregabalin can be muscle weakness, i.e. 'myasthenia', which is supposed to go away when you cease taking the drug, but with me it has remained: it affected my eyes and, as a consequence, I have Ocular Myasthenia Gravis, which causes me permanent double vision and droopy eyelids.)

    How did you manage to get the valium/lidocain/flexeril suppositories? Did you have to go privately to a pain specialist?

    With regard to pudendal neuralgia - I have suspected it as a possible cause. My pain (burning and aching) runs midline though, from vagina to clitoris, which I understand is not quite so typical for pudendal neuralgia, but it could nevertheless be a pudendal nerve issue. I've not been to see anyone about nerve blocks to try to diagnose it and/or help with the pain because I've heard horror stories about them. I've also thought about going to see a PT for treatment, but have read mixed reviews about doing that - even those PTs who are experienced and take a special interest in pelvic floor issues seem to have as many bad reviews as they do good reviews.

    Many thanks for your advice and good wishes.

    Kindest regards,

    Fielder

  • My pain runs midline through the vagina to the clitoris also. There is an article by Dr. Jason Attaman that shows this is the area innervated by the pudendal nerve.

    The mixed suppository was ordered by my pelvic pain physician. I am in the US, however the botox injections differ by Dr.'s. Some use anesthesia and others don't. The reason I was given for not using it was he could better find where the pain was located and hit it where it would work the best. Botox is also used for bladder dysfunction. They are covered by insurance for bladder issues, but not pain issues. The nerve blocks completely blocked my pain and I think they use this as a diagnostic tool to indicate pudendal neuralgia. It is worth investigating. Make sure they use fluoroscopy and CT at the same time. Otherwise they can miss the nerve entirely. They are injecting steroids and they can be trouble. They need to get 3 blocks 2 weeks apart. I had a Dr. who only used fluoroscopy and he missed the nerves. A waste of time and too much steroid put in for no reason. Another lesson learned.

    If you get severe urethral pain, B&O (belladonna & opium) suppositories are the only med I found that relieves this pain. They work wonders. Unfortunately they are also considered highly addictive and have to be used for the worst of the pain - I save them for the 9 pain that I can't tolerate. The severe urethral pain is caused by urethra spasm. It is absolutely the most horrible pain! Also, another medication that is good for bladder/urethral pain is Uro Blue. It turns your urine blue, but has provided so much relief for me.

    I've been told to avoid PT until they get the pain from PN under control. Right now it could make it worse. So I'm in the process of figuring out what to do next.

    Best wishes!

  • Hi Despertateforrelief,

    Thanks so much for the information re treatments for pain relief. I shall investigate whether they're available to me here in the UK - either on the NHS or privately, if necessary.

    You're the first person I've come across with pain in the same area as me. I've been looking on the pudendal hope forum and most people on there seem to have pain running along one side of the labia, but, as you say, the nerve innervates where we experience our pain too.

    You're right about nerve blocks being used as a diagnostic tool for pn and thanks for advising me about the methods they should use to go about doing those. I was going to try and get a nerve block done by a specialist in London, but have read of people having those go disastrously wrong, causing additional chronic pain to that of their pn.

    I'm like a rabbit caught in the headlights - stuck not knowing what to do, but knowing that I need to do 'something' as I don't want to have to lie on a 'day bed' for the rest of my life!

    What options are you considering/investigating for getting your PN under permanent control, i.e. before you can start PT, i.e. if PT is what you plan to do?

    All good wishes,

    Fielder

  • Hi,

    Somehow I didn't see your post. I'm considering seeing a doctor about spinal cord neuromodulation (not the interstim). I think it's in it's infancy, so am being very cautious. But the trials are supposedly 100% reversible if you don't like it, so it may be worth a try. It seems I have to travel far every time I need help for these issues. I don't want to be a guinea pig. Been there, done that. It's expensive, all this traveling so I think I'll wait a while longer. It is no fun being in bed most of the time. The tens unit sometimes helps for some of the pain. I got a 100% relief from the pudendal nerve blocks, however it only lasted a short time. Hang in there, I know this is really challenging. It's one day at a time. I do think I'm getting some better with the treatments to date. I hope it continues. The doctors are on a learning curve with this. I have done pelvic PT and it only gets me so far, and then my pain goes way up. So something does have to change here. ??? In the learning process, like us all.

    Best wishes for the right doctors!!

  • Hi Desperateforrelief,

    Glad you eventually saw my reply :)

    The spinal cord neuromodulation sounds very interesting and promising - especially with it being 100% reversible. I will do some surfing about that for more details. Let's hope that they get cracking with doing them for a number of people so that you won't have to be a guinea pig again - and won't have to wait too long to get it done.

    Would be great if you could keep me posted with how you get on.

    Kind wishes,

    Fielder

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