Health Organization for Pudendal Education

xxxxxxxxxxxxx Sorry, I have to delete everything I've written. I knew it was coming - lawyers. However, I do sincerely thank you all for answering me. I think I can still be PM'd if I'm not mistaken. Is that private? I needed to know something, since I don't trust Dr.'s and hearing from patients made me feel so much more comfortable with decisions I am making. I hate this. I do have more ???? But it was great while it lasted.

Ellen, welcome to the board. Your situation is very similar to alot of other people here. I am new also but the experts here are good at keeping things in perspective and made me realize that you have to take things one step at a time and not panic. I was referred to Dr. Hibner also and it was the best thing I ever did. Pursue the route to see Dr. Hibner and see where it leads but remember just keep on fighting and don't this stuff beat you down.

Jim

Hello Ellen, welcome to the forum.

I am so sorry to hear what you've been through, and that things are so difficult for you.

I too have PN from mesh surgery, but I've been a lot luckier than you, from the sound of things. I have not had any nerve blocks - my consultant here in the UK ( who has a special interest in PN) said that he thought they were unlikely to help in the long term, and they were not needed for diagnosis, so no point in doing them. I am sorry to hear that yours have not helped long term, either.

What my consultant suggested was that the mesh needed to be removed - he likened it to someone with a telegraph pole fallen on them, all well and good to give them pain relief and look for ways they could learn to live in this situation, what they really need is the telegraph pole to be taken off them. So he referred me to a surgeon who took out most of the mesh - I'd previously been told this was completely impossible - and freed the nerve, which was completely embedded in scar tissue. This has greatly improved things for me. I've also had a lot of problems with mesh extrusion, currently waiting for yet more surgery for that, and the same surgeon is going to have a go at taking out the rest of the mesh at the same time.

If the mesh removal surgery had not helped, then for me the next step would have been a trial of a neurostimulator. My consultant told me that they have had excellent results with this.

I have already tried all the usual meds - amitriptyline, nortrityline, gabapentin - and finally pregabalin/Lyrica which turned out to be the most helpful for me. I'd go back on it, if the pain were to get worse than it is at the moment. I don't know if you have had the opportunity to try this particular med?

And I don't know your precise situation of course, but it seems that your doctors have decided that removal of the mesh is not appropriate.

I do think that it is a good idea for you to see a doctor who specialises in PN issues, to decide the best way to move forward.

I'd also suggest that you ask for some psychological support. I was very lucky in that my GP referred me to the local psychology service early on in this journey, I had a lot of help from the CBT sessions which were arranged for me, it turns out that this incredibly helpful in pain management - I'd say it actually made more difference than any medication. Also I had become depressed, and it helped me there too.

One other thing - a book. Coping Successfully with Pain, by Neville Shone. This was recommended to me by the psychologist, I originally borrowed it from my local library, but I soon bought my own copy as I was referring to it so much. This has helped me a lot in this journey and I would recommend it to you unreservedly.

Hang on in there, you're not alone in this.

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Welcome Ellen
Usually people who are new to this forum are worried about any surgery for a differ3nt reason to you. I can understand your reticence, re more; you have been through such a lot already. I have no real understanding of your past problems and difficult surgeries, but I totally commiserate.
It isn't unusual for mesh surgery to cause or compound a PN problem as Calluna has mentioned (and understands too well)
This cause of PN would be termed as a 'trauma', in which case, it would be doubtful if conservative treatments like physio would be totally helpful. However, if all of the mesh has been removed this may make a difference.
I suppose with all of the resources available (I know, as if ) a good plan would be to get a Hollis Potter scan to hopefully see what was causing the PN.
Then again, Dr Hibner does not agree that this scan always shows a full/true picture anyway. . . . . He does however, seem to be an excellent, forward thinking and compassionate individual. I would take the chance to visit him just to get an idea of what he thinks and what options you may have.
No one is going to force you into anything, if you can't face it (which is understandable) I do think tho' that you seem as if you are at a low ebb and maybe everything is washing over you, rather out of control, worrying and confusing you further. It all gets too much sometimes.
I find that if I take some pro-active steps I feel a little more in control, just 'having a plan' is slightly empowering. There is no need to follow up on anything, just gather the info so that your options are there, even if they are dismissed for the moment.
With regard to ligaments Dr Hibner's most recent surgical video ( new on the home page) does show some ligament re-sectioning with cadaver tissue.
It has been hypothesized that unless the patient is hyper-mobile, cutting the ligament is not a problem, although there has been much discussion for and against this argument here. All you can do is accrue as much information as you can to make informed choices.
Wishing you the best,
take care Helen

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Hello again Ellen

So glad you are having counselling - I think we need all the help we can get! I personally have not had counselling - my CBT sessions were very much focussed on pain management and helping with depression - but I know that lots of people have found it helpful. I am sure you will find that book useful.

I am sorry I don't have any specific information about Dr Hibner or the stay in Arizona but I am sure someone will be along soon who can help. I know it will have been discussed before.

You are quite right that mesh can be a causative factor - in my case it was very clear, I woke up from the reconstruction surgery with the left pudendal distribution totally numb, feeling came back as pain and has been with me ever since. I too was a guinea pig, first time this particular mesh surgery was done here in the UK and it is not likely to be repeated now. (It is funny how with some people it never causes any problems yet with some of us it wanders all over the place.) Sounds like it is very clearly the causative factor in your case also.

Good that you've got it all out now - I still have one section lying along the pelvic floor (and part sticking out) - that's the bit I am waiting to have removed, or at least the attempt made.

How long is it since your last surgery, out of interest?

With regard to the neurostimulator, my consultant Dr Greenslade told me that they get excellent results with it. It is a life-changing thing, though - no MRIs, no defibrillation - and I think I would choose to go back on pregabalin first should it become necessary. That did work pretty well for me, once we got the dose up high enough.

There is a forum section about Neurostimulator treatment, if you have a read there then you'll get quite a lot of information I think.

With regard to further surgery and the risk of getting worse - when I had the big surgery for mesh removal, this was one thing that I did worry about, and it was of course a possiblility. But I knew that if I didn't have the surgery, then I'd definitely not be seeing any improvement, and I decided to focus on that.

I hope you have a good day today.

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Mesh doesn't cause pain - excuse me whilst I fall off the sofa laughing! - oh, that's a good one. I think we both know the reality of that.

I think you are right that removal in one go is the best option - but I think we have to go with what we can get. In my case, I have not got worse with successive surgeries - but in my case there have only been three so far. Lets hope that Dr Hibner has some helpful ideas, from everything I've heard he is a kind man and an excellent surgeon.

Don't worry, you haven't said too much. You'll get support here - we all know what this pain feels like, after all.

You'll find threads about visiting Dr Hibner here, here, and here. And remember you can always PM if you want to talk to someone privately.