Health Organization for Pudendal Education

Hello again
Sorry to post in the welcome centre but I need people to see this and hopefully respond!
I am booked in for bilateral pudendal nerve block with dr Baranowski in london in a few weeks. To remind people my symptoms were feeling of fullness in the vagina burning sharp pains and agonising pain in the coccyx. This is now controlled by 2400mg gabapentin and 60mg duloxetine daily.
Having read the pudendal nerve block section on this forum I am now scared. It seems the best I can hope for is a short term relief, worst case becoming disabled by agonising pain.
So why do it? So do I Spend the rest of my life taking 9 pills a day to live in semi comfort but be an overweight zombie due to the side effects or what?????
Please someone help me make my decision

Hi Chrissy

Glad to hear that you've got the pain under control. (Or have you? you say that you are in 'semi-comfort'.) And by the way there is no need for you to expect to gain weight. (I've managed to lose 40lb over the last 2 years, and I can guarantee that's not down to the topiramate.) Also you should not be feeling like a zombie. If you are, then you aren't on the right meds yet.

I think it is worth bearing in mind why nerve blocks are done. They have two functions, they are a diagnostic tool for the doctor, giving information to help decide how best to move things forward, and they also can have longterm benefits for you. The short term pain relief is incidental, really.

There have been people on here who have told us that they have been cured by nerve blocks. Do they stay cured? We don't know. But perhaps something to bear in mind. The other side of the coin is that people can get a flare afterwards - but if you already have effective pain meds in place, then you've got a lot less to worry about in that respect. And flares do settle down again.

Perhaps the best thing to do if you are really worried is to ring up Dr B's secretary and ask if you can discuss this? Don't leave it to the last minute.

Thank you calluna for once again answering me! I did ask his secretary and she said dr B will discuss with me when I attend in a couple of weeks. I was initially very happy with my appointment I think it was only once I started reading up on the internet that I am wondering if I will regret doing it. I can cope with a flare up, I would say that I have the pain controlled to around 80% and I only get flare ups after doing certain activities/things.
I think the weight gain bothered me a lot more than I thought it would I really thought that I wouldnt care as long as I wasnt in pain but it seems I am more vain than I realised! In the last month I seem to have put on 1lb every couple of days. I am determined to lose it either with or without coming off the meds but I would like to work towards the goal of some kind of normality and to me that is hopefully not having to carry round a pill box every time I go out for the day. But then saying that I am grateful to be where I am now as a year ago I was not in a good place...
Sorry this is rather rambling its late and im tired.
Thank you again I think you have helped me rationalise was beginning to panic!
Chrissy

You are very welcome! Usually around, although not always feeling like talking. But I do know the feeling - oh dear am I doing the right thing? But we can only make decisions as seems best at the time. And if you are worried, then this is the place to come, because we do know what it feels like, after all.

Worth bearing in mind when reading on the net - that if people have a bad experience then they will go looking for help, quite rightly. But if people have a good experience, if all goes as they have been told to expect - well then, the internet will most likely have no trace of them whatsoever. We don't tend to hear from the people who have good experiences.

Re carrying around a pill box - I'm going to point you at the bit about acceptance in the homepage info. When I first read about it, I thought it meant giving up, and got really cross. But it doesn't mean that at all, it took me ages for it to click, what this really means. Don't be afraid to ask your GP about counselling. Having chronic pain in your life isn't easy, having something like this - so openended, you don't know where it is heading - that's not easy either. Yes, it changes your life. I found counselling to be really helpful, once I got my head around the fact that it was sensible to ask for it.

Regarding weight gain - I certainly don't think you are being vain. It is depressing to find that one's clothes simply don't fit any more, not to mention expensive. Also there are health issues here as well. Regarding the pain - the more overweight we are, the more intra-abdominal pressure, the more pressure on the nerve, the more pain. So, being overweight = more pain. Also of course being overweight is bad for health in general. BMI chart here is the one I use....

However I weighed myself this morning and seem to have mysteriously gained weight over the last few weeks, now how did that happen? Maybe we need to go over to the Social area, there used to be a couple of weight loss threads there, I shall go and see if I can find them.... Shall we do that?

Yes I will take a look at that section I think... I dont mind a few lbs but this is ridiculous!
My dr touched on counselling, I had cbt previously for post traumatic stress related to the birth etc but I find it hard to receive counselling in fact I hated it. Maybe I will have to consider it in the future.
You are right though about reading on the net it is usually the horror stories I wish I could stop and trust the drs but I have had such awful experiences with drs in the past I cant lwt myself do that.

Welcome to the forum Chrissy. It looks like you have already gotten great advice and are hopefully feeling better about your upcoming nerve block. I agree that you have to make the best decision for yourself right now in taking the medicine that will keep you (hopefully) comfortable while you continue to figure out exactly what is wrong. The nerve block can help as diagnstic tool and can cause pain flares, just like, it seems, anything else done to this nerve! As far as counseling, I think it is very individualized. Some people benefit from it and others do not. I never had much success with it, but that may have been because I didn't really "click" with the therapist. My best to you.

hope all goes well chrissy
xx