Could a TVT cause Pudendal damage

[KarenM6]

Hi,
I am new to this site and wondered if anyone can help me, In 2003 I had a TVT procedure and ever since I have had no feeling when I need to empty my bowel or bladder and no feeling when having intercourse, could this be the result of damage to the Pudendal nerve?, I have seen several consultants, and I have various responses, from - there are no nerves in the area where the procedure was carried out to what do you want me to do?!
Can anyone help me, I am on anti-depressants, and have no quality of life, as I have to wear pads constantly and carry changes of clothes and extra pads and wipes etc. wherever I go. I can't work, because I never know when I need the toilet, so therefore, am backwards and forwards to the toilet all the time.
Please help,
in desperation ,
Karen

[helenlegs 11]

Hi KarenM6,
Welcome to HOPE. So sorry for the dreadful problems that you face since your op in 2003, not a good situation to be in. The areas that your describe are innervated by the pudendal nerve but I am not very familiar with your TVT procedure, so I looked it up. I found this straight away http://www.oxfordradcliffe.nhs.uk/forpa ... 624tvt.pdf
If you scroll down to the bottom of page 4 it does say this
In less than 1 in 1000 patients very rare complications of bowel and nerve trauma can occur.
Of course it doesn't say which nerve they may mean BUT the pudendal nerve is responsible for the sphincter muscles which is responsible for bowel control. See below. from http://www.med.umich.edu/bowelcontrol/p ... dendal.pdf
The pudendal nerve is found in the pelvis. Right and left branches of this nerve extend to the
bladder and bowel sphincter muscles. When the nerves and muscles perform normally, we
have control of bladder and bowel functions without discomfort. A problem with pudendal
nerve function may lead to loss of control of the anal sphincter muscles. Such problems may
cause leakage of urine or stool, conditions referred to as urinary incontinence and bowel
incontinence. Problems with pudendal nerve and sphincter function may also cause chronic
constipation or rectal pain.

Of course one of the symptoms of a nerve problem can be lack of feeling, which is exactly what you are describing.
I would imagine that the medics you have seen have the sacral nerve roots in mind for bladder and bowel function. This is where they originate at the base of the spine, so because your op in 2003 was as they say they were no where near any nerves that could be responsible for bowel control, they MUST be thinking of nerve roots or cauda equina. It's a shame they say this because the pudendal nerve as you can possibly see from the diagram in the link below, could be exactly where the TVT surgery took place.
https://www1.columbia.edu/sec/itc/hs/me ... index.html
If you click on the listed anatomical parts on the link above and select peritoneum,this will show the female anatomy and where the 'exists' are, click on rectum and urological tract too so you can get a good 3D picture of where things 'geographically'. If you then highlight pudendal nerve(remember there are 2, one on each side) this will show how near this nerve is to the bladder etc. If you then click on sacral plexus I think THIS is where they expect any pelvic nerve issue to stem from. . . . of course they don't JUST stem from there unfortunately. (edited: see Calluna's post, thanks C)
As Calluna says below that area is full of nerves with a major nerve bundle situated at the clitoris. Wonder where they think these come from?

Take care
Helen

[calluna]

Hi Karen and welcome from me too

So sorry to hear about the problems you are dealing with.

I would echo everything that Helen has said. (Helen, that last link doesn't work...?)

It is absolute nonsense for anyone to say that there are no nerves in that area. The whole region is one of the most densely supplied areas of the body. And yes, nerve damage can and does happen. Fortunately it is rare, but that's not a lot of help when it is you being affected. I do get so cross when I hear of doctors putting people off like that, it is completely out of order, in fact it is downright cruel. And asking you what you expect him to do????? Grrr....

I had colposuspension back in 1994 -(this op was fore-runner of TVT) - since then I have had reduced feeling that my bladder is full and if I am not careful then I have accidents. I had damage to the pudendal nerve during mesh surgery for prolapse in 2009, since then the bladder problem is worse and I also now do not have normal sensation that my bowel is full, nor do I have normal control over either bladder or bowel. Again if I am not careful then I have accidents. Sensation during intercourse is also reduced. So I know something of what you are dealing with (pads, wipes, spare clothing, all par for the course) although your situation sounds to be much worse than mine.

Now - suggestions!

I don't know whereabouts in the world you live, but it would be a good idea to see a doctor who specialises in Pudendal Nerve issues. You will find lists on the home page of this website - link 'Go to home page' in the header of this page, then choose 'List of doctors' in the sidebar.

Re continence issues. For bowel control I was referred for biofeedback sessions at the Physiology department of Bristol Royal Infirmary, and despite being more than a bit doubtful beforehand about whether it could help - turns out that I have found it helpful and things are definitely easier to manage at the moment. So that's another idea. If you want more info on this (or anything else) and are not comfortable talking about it in the forums, please feel free to PM me.

Re urinary continence, I am still on this road myself. I have more surgery coming up at the end of this month where my wonderful surgeon is going to try to remove more of the remaining mesh, once things have stabilised after that then a urology referral has been mentioned.

I do hope this helps a little bit. The problem with pudendal nerve issues is that it is something of an 'orphan' condition - neurologists don't want to know, according to them it is a gynae issue - and gynaecologists don't want to know either, according to them it is a neurology problem. So we are left in the middle with just GP help.

Things started to go right for me once I saw Dr Greenslade at Frenchay Hospital, he is one of the few doctors in the UK who have a special interest in PN.

[nyt]

Hi Karen,

I am so sorry to hear of your troubles. There is more and more literature being published about the problems with TVT and TOT procedures and the development of pudendal neuralgia. I haven't had any voiding sensation in 5 years since my TOT procedure. If you try pelvic floor PT you need to be very, very careful and only work with someone very knowledgeable or it could very easily make things worse. This is because you have a mesh that has scar tissue all in and around it and doing PT on the pelvic floor will move the mesh and could make things worse. You should really see someone who specializes in pudendal neuralgia and if the decision is made to remove the sling make sure it is only someone who is very, very knowledgeable about how to remove slings or you will end up more problems. Did you have a hysterectomy at the same time as the sling?

[KarenM6]

Hi,
Thank you for all of your support and comments, I will look up the list of doctors.
No, I didn't have an hysterectomy at the same time as the TVT.
I am very new to this, what is PT? I'm not too familiar with the abbreviations yet.
I live in the UK, and I am glad that I have finally found a website where I there are people I can chat to who are going through the same sort of things I am, sometimes I feel so alone (although I have my partner, who is very supportive and understanding) not having someone who understands how I am feeling to talk to.
I am waiting for an appointment for 'bowel training', I don't know if that would be the same as biofeedback?!?!, but I don't know if that would work, if I can't tell when I need to empty my bowel.
Karen

[helenlegs 11]

Hi Karen,
Calluna and I are British too, I live in the north east near Newcastle. PT is our just physio: physiotherap/yist
Can't help you with the rest as I haven't had any bowel training, let us know how you get on and if it seems appropriate for your circumstances.
So if you are in the Uk you have,
Dr Greenslade at Bristol Frenchay hospital who Calluna mentioned earlier, He is a pain management consultant. He is fully clued up with PN issues as he studied with Professor Robert in Nantes France, the author of the 'PN bible, The Nantes Criteria' all of the info on this can be found in the home pages.
Dr Andrew Baranowski and Natasha Curren are in London
Dr De Mellow is in Manchester.
Basically that's it, unless you want private (which the above all do, maybe not Dr Curren, not sure) and pay an absolute fortune with Dr Filler who holds a clinic in Harley St. a few times a year. Sorry there is Prof Carlsteadt in London too but must admit that I haven't heard much about him lately.
I'm not sure that any physio would help long term with your history although it may well help and release any muscle tension and therefore pain so worth pursuing to find out if it could help.
Here are a list of physio's who are PN aware.
http://www.pelvicphysiotherapy.com/manual-therapists but as nyt mentioned be careful and explain your circumstances in advance of any treatment.
I would say that an anti seizure drug like gabapentin or pregabalin may help but you didn't mention pain so it may not be appropriate. If you do have other typical nerve type symptoms other than numbness (itching, burning electric shock type pain) see symptoms on home page, some medication like those mentioned may help in the mean time.
Hope you can get some decent help from the medical community now, 7 years is just plain rude!
Take care,
Helen

[calluna]

Hello again Karen

As Helen says, both she and I are in the UK as well. I'm in Wiltshire these days, not far from Bath.

I expect that 'bowel training' will indeed be biofeedback. If you have been waiting any length of time, I would strongly recommend giving them a call and telling them that you are really having problems. I was referred in December last year, received a letter in January telling me that there was an 8-12 week waiting list and saying please call if your condition is getting worse. So I waited - and waited - not getting any worse - and left a couple of messages, because it was well past 8-12 weeks - and then I gave them another call two weeks ago when I was told my surgery would be at the end of this month, just wanted to make sure that the appointment letter wasn't in the post becuase these things have a way of clashing, this time someone answered the phone - and instantly they offered me an appointment a few days later....!

They mentioned that a lot of people decide they don't want help, by the time their appointment comes round. So do give them a call and tell them you are struggling.

I did learn a lot from it. I learned that I actually have more conscious control than I thought I had, that the real problem for me is that I cannot feel what's happening. I also learned that I actually have much less feeling than I thought, for example when I really ought to be feeling that the bowel is full, actually I am not feeling anything whatsoever.

They've given me lots of suggestions and advice re what to do and how to manage, with this knowledge of my level of control/feeling, in order to minimise accidents. It is very reassuring knowing that I do have muscle control even if it doesn't feel like anything is happening! The rest of it is down to routine really - also diet. Hah, sounds simple doesn't it. Anyway, I've been given a phone number and email for ongoing support, and also they are going to contact me again a couple of weeks after the surgery.

All in all, very helpful. I hope that the same turns out to be true for you!

How I got a referral to Dr G through the NHS. He is based at Frenchay near Bristol which is not too far from where I live, although in a different PCT area. I went to see my GP and told him that I had found out that there were several doctors in the UK with a particular interest in pudendal nerve issues, and one of them was at Frenchay, and please could I go and see him? He said yes straight away - that it would be good to get a review of my situation from someone with specialist knowledge, and that even if the consultant couldn't help, it would undoubtedly be useful to him (the GP) to have the consultant's views and opinions. And he sent me out with one of those booking forms with a password on it, I rang the number as soon as I got home and lo and behold an appointment with Dr G in 10 weeks time.

Having said that - I was lucky. Not all GPs are as nice and as helpful as mine.

I'd suggest you pick which doctor you'd like to go and see, and make an appointment to see your GP.

Oh - and yes, we know how it feels.

[KarenM6]

Hello Calluna,

I'm in Suffolk.

Funnily enough, you talking about referral letters, I received a letter from the hospital about the 'bowel training' today and phoned them to make an appointment for next week.
I hope that appointment goes as well as yours did, and that I get as much help, support and information from the hospital, as you did.

What sort of surgery are you having, is it soon?

I have a new GP, and so I will definitely be telling her about my problem and how I have found a list of specialist doctors, who deal with PN problems, and would like to see one of them, as the other doctors/consultants I have seen only seem to concentrate on the bowel/bladder side of things, and not look at the 'numbness' or 'nerve damage' aspect. I just seem to be banging my head against a brick wall, like all of us, I just want to get my life back, without worrying about having 'accidents'.

I'm so glad that I have finally found a website where I can talk to people who have gone/are going through what I am, and find support and advice in one place.

Thank you so much for all your support,

Karen

[calluna]

Well, there's good timing! I do hope your appointment goes well, next week.

The surgery that I am having soon is firstly to remove a mesh erosion (fourth time for this), and also Mr Dixon is going to try to remove some more of the remaining mesh. He is technically a colo-rectal surgeon but he has a particular interest in fixing things where mesh surgery done by other people has gone wrong - and that is definitely my situation.

I hope that your GP is as nice as mine! I suppose that Dr Baranowski would be the person for you to see, initially - or indeed Dr Natasha Curran. They are certainly the closest for you. We've heard good reports about both doctors.

Are you in any pain?

[KarenM6]

Thanks, Calluna, I hope so too,

I will ask my GP about referring me to one of these doctors, and will let you know how the GP appointment goes.

I hope your surgery goes well too.

No, I am not in any pain at all, in fact I don't feel any discomfort or pain, even when I have a smear or an internal examination, I feel nothing at all.