newbie please help me

[chrissy]

Hello I am new to this site and I need help desperately. This post will be long im sorry for rambling. I gave birth 16 months ago and after the birth I went into urinary retention but this was not detected and my bladder inflated to four times its maximum size causing nerve damage. I was unsure for a long time what damage had been done.My symptoms were feeling a foreign object in my vagina feelings of burning scratching pain, being unable to have bowel movements or empty my bladder ir feeling like I had not done so, my pelvic floor muscles were slso in spasm. I was checked by many cinsultants who could not find a problem and insinuated that the problems were in my head. Eventually I was prescribed prescribed Duloxetine to numb the pain and referred to a physio for trigger point release. This helped for a few months however I recently started to get wirse again and I now have a new symotom which is agonising pain in the coccyx. My physio suggested manipulation and this made it worse. I can not sit down without being in in agony! So my consultant is now saying to get injectiins in the coccyx but my physio says this will make matters worse. I am so confused and cant imagine living like this. My consultant said she will refer me to dr baranowski in london but tge wait is nearly a year. I need some sdvice as I have to little ones at home and I can not not cope with with this.
Sorry if I have not posted properly I am new to this
thanks
chrissy x

[shana]

Sorry your going through all this. I've been through the ringer and its not fun. I too have coccyx pain and so far that's the only thing I've been able to get relief from. I had what's called a ganglion impar injection which took my pain down to a level of discomfort but I was still able to sit for a good few hours at a time. There are many who tried this and did bot get relief but its worth a try.

Good luck

Shana

[chrissy]

Thank you for answering. I want to try the injections but got scared by what my physio said I dont want to end up eorse but I've been having physio for nearly a year now and it isn't helping. I dont really want surgery as I look after by two young sons who are not in school so I dont know how I would cope with the recovery. However I would do anything if there was hope of putting this behind me x

[calluna]

Hi Chrissy, welcome to the forum, sorry that you are having such a hard time. It must be very difficult with two little ones to look after.

I too am in the UK. I would suggest that you get on the waiting list to see Dr Baranowski asap. Yes, the waiting list is long, but the sooner you get on it the better.

First thing you need is some effective pain medication. Your GP is the best person to start you off on this, you've already been recognised as having neuropathic pain, that's why you were put on the Duloxetine. So the thing to do is to go back and let your doctor know that the Duloxetine is not giving you effective pain relief. It really is important to give feedback about medications, if we don't let our doctor know there is a problem then otherwise they will assume that we are now doing fine.

So please do go back and let your GP know that you are not doing fine and need some more help. There are lots of medications that can be tried, honestly you have hardly got started yet!

I will just show you this, which was tracked down by another forum member called Helen - NICE guidelines for treatment of neuropathic pain - you might find it useful. As you can see there are lots of options.

In the meantime, have you tried using icepacks? Lots of us have found ice to be our first and best help. Packet of frozen peas wrapped in an old teatowel if nothing else is around! - ten minutes in each hour. Hurts at first, I won't pretend otherwise. But then, numbness sets in. And numbness is pretty good when it has been hurting really badly all day. Please try it. I don't know how I would have got through without ice.

Please don't even think about surgery, it really is a last resort and you have many many things to try before you even start to consider that.

[chrissy]

Thank you! Two questions is it worth going to local pain clinic while waiting to see baranowski or could this be counter productive?
Second can you pay to see him privately and avoid the wait on nhs?
I feel like my duloxetine stops a lot of the vaginal and bladder pain but does nothing for the coccyx.
I am seeing my physio today so will bring this up with him too...x

[calluna]

Absolutely yes, go along to the pain clinic! I had lots of help from my local pain clinic, they were wonderful, so supportive and they really wanted to help. Take every offer of help, don't say no to anything - that's been my principle all the way through. Some things have really made a difference, some things not so much, but how do you know unless you try....

Support groups, yes, excellent - talking therapy, wonderful, it all helps - and no, being offered things like this, it doesn't mean that they think it is 'all in your head', it is just that the pain clinic is very used to dealing with people who are in truly horrible pain, and they know exactly how hard it is to deal with this, day in and day out. Of course it affects us......

Pain clinic, yes, if you have been offered this then please do go. They vary a lot, some are brilliant, some less so. I even had a course of acupuncture at my local pain clinic. You'll find out what yours has to offer when you go along and see.

Stopping 'a lot' of the pain - well, marks out of ten there? Maybe have a think. In fact, print out the pain scale, and keep a note each day. It is a bit of a chore, but if you keep track for a week, maybe if you can manage to make a note of where you are on the scale three times a day? Your doctor will find it really useful information. So many people when asked how bad is the pain on a scale of 1 to 10, will say 11...! and then the doctor has no useful information at all.

You asked about private appointment to see Dr B - yes he takes private patients. But do bear in mind that your GP is the person to get you started with the additional meds that you need right now - you don't need to wait to see a consultant, this is GP territory - and the meds will take time to get running with full effect - and maybe you''ll want to try a different combination - lots of people find that a combination of an anti-depressant (like duloxetine) and an anticonvulsant (such as gabapentin or pregabalin - or topiramate, come to that) is the best thing for them. I'm bucking the trend, I'm on two anti-convulsants and it is working like a dream. But then my problem is not the same as yours! Anyway, I've had all my treatment from start to finish on the NHS and they've looked after me jolly well.

Hope things went well with the physio!

[chrissy]

Thank you
I would say the duloxetine blocks 80% of the vaginal discomfort but does not seem to stop the coccyx pain at all.
I attend the pain clinic on 22nd so will update then
I had acupuncture on friday and having it again on tuesdsy it seems to help relax the muscles at least

[calluna]

Well that is certainly something positive to look forward to!

And I do hope that you can get something sorted out for the coccyx pain, and get something added in to deal with the remaining vaginal pain. Is your GP being supportive?

I would just point out, by the way, that referrals to consultants (like the possible referral to Dr B) do seem to go faster if they come from a GP, rather than from another consultant. At least, that's been my experience. It took me literally 30 minutes from when I left my GP surgery with a referral form, to when I was writing an appointment time in my diary. Ok, it was some time in the future, but at least I had an appointment on a definite date. When I was referred from one consultant to another, it took 6 months until I got an appointment. Secretaries forgetting to put forms through, forms not arriving, forms fallen down the back of the desk - one excuse after another. Six months, and if I hadn't been chasing it, I am sure it would have been longer. And then there was the actual waiting for the appointment, after that!

By the way, I found that the acupuncture helped whilst the course was going on, but the effects did not last. But we are all different, who knows it may have some lasting results for you, wouldn't that be good.

[chrissy]

Wow thanks for that advice it makes sense but I wouldnt ever had thought of it.
Luckily my mother in law is a physio and she can do acupuncture so I can get it regularly and for free!!
I hope to get an appointment with my gp tomorrow I will let you know how it goes x

[calluna]

Hooray for having a helpful mother-in-law! That is just excellent!

Really hope that the GP can help with the coccyx pain. And maybe see if you can walk out of there with a referral form for Dr Baranowski. You can always go private if you can't face the wait.