Just diagnosed and terrified!

[helenlegs 11]

Hmmm it is such a silly situation Jackson when there is no recognised medical training pathway to become a 'pelvic pain specialist', especially when the area is so complex.
A urologist takes care of some bits,a gynae a bit more, even a urogynaecologist exists but still doesn't need to know about pelvic nerves??
It's not like those nerves aren't important is it?? Then again most neurologists would say they are not important, they are so disinterested in them.
Thank goodness for the few, worldwide (listed on our home page) who have taken it upon themselves to specialise but only because they have recognised individually that a major problem isn't being addressed.
As I have mentioned before a UK pain audit has recognised that the figures for pelvic pain equal the back pain population (may outstrip it? as I'm still in the back pain group for instance) and the asthma sufferer figures. These groups are already recognised as a major drain on economies because of wasted sick days and the growing burden of benefit systems quite apart from the individual suffering. In the UK the NHS are hoping to set up multidisciplinary medical centres to include the separate specialities required to treat pelvic pain including physio and psychotherapy, as well as gynae and uro's. . . . . ., OOOPs who's missing? a pelvic nerve specialist! perhaps because they hardly exist?
I feel sure that this problem will be addressed but the other lot need to realise that pelvic nerve problem exists AND they need to communicate between the separate specialities once set up.
Soon every government will wake up to the realisation that pelvic pain needs addressing and they can 't just miss the nerves out again, can they?

[molly]

Hi Helen,

Picking up on a small part of your entry, when Isaw Dr Greenslademlast week and discussed treatment options at Frenchay, he said they were trying to get a service that does nerve blocking and very swiftly moves onto surgery if diagnosis is positive. They are very pro decompressing the nerve as early as possible to try and achieve the best outcome.
He recognises the huge hurdle patients face and said that some areas of the UKstill do not admit pn exsists, as your appaulling story tells.

As frenchay, soon to be combined with southmead, has an excellant long term reputation as a neurological centre, the placement of spinal cord stimulators, which has recently been given the thumbs up by NICE, also gives hope for people struggling with this ghastly condition.


Regards Molly
L

[calluna]

Hi Kate - Another one in the UK here! I thought I'd posted on this thread but it seems I never actually hit 'Submit'. Honestly, I'd forget my head these days if it wasn't fixed on.....

You mentioned that you've already seen a PNE specialist, could I ask who this was?

And by the way - Helen mentioned ice, it really can help a lot when you're at your wits end what to do. I've heard that some people have found it helpful for vaginal pain to freeze a mixture of water and alcohol in a condom - apparently it goes slushy not solid. Anyway, care required with that one I'd imagine - but ice in general is brilliant, if you haven't tried it yet then I'd urge to to give it a shot. Wrap a pack of frozen peas or similar in a soft cloth.

I hope you have a better day today!

[HerMajesty]

OK, finally after reading everybody else's comments and then rereading yours, Kate, I see where you said you are in the UK...sorry, not sure I know of a PT over there good at aligning the pelvis, but will check with my own PT and maybe somebody else who lives over there will respond to this thread. You can travel to the USA to get your pelvis aligned; but I assume this is a huge expense unless you get some kind of flight privileges due to your former work affiliation.
Jackson, in my experience, not only is there no such thing as a "Pelvic Pain Specialist", but the practitioners working on different aspects of the same issue often do not even respect each others' work. It's very frustrating. I handled it by declaring myself the head of my health care team, finding an excellent and respectful Pain Clinic Clinician who would refer me anywhere I wanted to go, and then getting help a little here and a little there.
Many times, a useful practitioner, in addition to helping me correct a piece of the puzzle, has badmouthed nearly every other helpful practitioner in the field. Dr. Filler was kind enough to point out my tarlov cysts on MRN, but then told me not to worry about them and let him do piriformis injections instead. My tarlov cyst surgeon told me that piriformis injections will not work if there are tarlov cysts at S2, since they keep the piriformis in spasm. My nerve block Dr. told me tarlov cyst surgery is butchery. My tarlov cyst surgeon told me PNE is a figment of PN surgeons' imagination, I suppose because it is not his field of interest. My tarlov cyst surgeon and my PT mutually insist that in having both SIJD and tarlov cysts, I just got lucky twice - both deny any connection, although everybody with tarlov cysts with whom I have corresponded, also has an SIJD history. Each and every physician I have seen, has shown blank disinterest when I explained that I was greatly improved by PT correction of SIJD. I went to the IPPS conference and watched Dr. Dellon announce on stage that all the other PN surgeons are failures. I could go on and on.
We are, each and every one of us, on our own to put together a treatment plan. This is not to discourage anybody. It can be done. I am improving steadily. 1st step: realize that nobody but you is in charge of your plan of care.

[kate1981]

Calluna the one doctor I saw in the UK was driving mello. He really frightened me bcos he said I could possibly have this forever which I'm terrified about. He is a very nice man and very clever indeed but I'm so scared about the unguided nerve blocks. All my physios have told me to stay clear of them.

I'm still confused esp with the pelvis misalignment sijd leg discrepancy and back issues. This makes more sense to me to be the reason behind it as opposed to constipation. Her majesty, how long did it take to get your pelvis aligned and all the other trigger points sorted? Did you have pt internally as well? The problem is all right sided with me and that's where I have the vagina pain. I could deal with pain anywhere but there is the most sensitive part of your body. I'm am so depressed with this situation I don't feel like me anymore I feel like a total freak. Has your ic symtoms fully resolved now? Where abouts is your physio? I have family in vegas and Virginia so I could stay with them. I will do anything to make myself better again.

[calluna]

I've heard lots of good things about Dr de Mello, he does have has patient's interests very much at heart. And yes, he is a very clever man indeed.

But all of this is so difficult to take on board, especially at the beginning. As you know. It is a bit like an emotional rollercoaster, except with more downs than ups....

It is confusing, you are absolutely right. It is confusing even when there is just one issue involved, let alone a complex situation like yours. But first off I would not assume that you have PNE. You've been told that you have PN, yes - pudendal neuralgia, pain in the pudendal distribution - but not necessarily an actual entrapment. That remains to be seen.

I too would be more than a bit wary of unguided nerve blocks. Perhaps it might be an idea to seek out someone who could provide guided nerve blocks and a more holistic approach?

And I'm going to point you also at this article which Helen has found, I think it is the clearest explanation of our common problem that I've ever come across, and a really sensible explanation of treatment options as well.

How are your pain levels at the moment? (Remember to use ice if you need to... )