post op physio

[calluna]

Really surprised that you have not been able to get physio on the NHS - did you actually ask your GP? I haven't asked for any but I can't imagine that such a request would be refused.

Has your GP referred you to a pain clinic yet? - usually there is physio available there as well. Also TENS units to borrow - that's also free of course.

[molly]

Hi Calluna,

I have bedn to three pain clinics in my four years of having pn. The only physio I was offered was is London where they have a no touch policy. At one plint I did write to Dr B. and ask why manualphysio was not available, the bottom line was money. I do not feel with the type of condition I have a physio without pn experience would be of little value. My GP whilst having been pretty supportive confessed to having no knowledge of this condition.

Regards Molly

[calluna]

Goodness, physio with no touching, that's a new one.

Seriously though, it might be worth asking your GP for a physio referral. All my treatment has been through the NHS and it has not cost me anything - well, apart from the prescription prepayment card each year, of course.

How are you getting on with your TENS? I found it did help to a degree but took some careful adjustment of the different settings to find what worked best.

[molly]

As you can imagine pn physio,s have a very high level of expeftise. They have a woman,s health qualification on top of attending the course on pelvic pain and pelvic muscle dysfunction. I know if I by some chance presented in front of a standard physio they would not understand. Even the lovely Dr Greenslade admits they don,t have specialist physio at Frenchay, and that is a centre that treats pelvic pain.

There is currently a move towards educaging physios in the UK, and courses are running headed by Maeve Wheelan from Ireland, but I think the time at which this treatment will be available in the nhs is in the distant future. There is simply not the funding ar present.

I know many people in the UKhave have to dig deep to fund or partially fund their own treatment, that is the nature of the beast, so Idon,t feel I,m alone in tis aspect. There is a growing awareness among professionals concerning the scale and misery of pelvic pain, and I am aware that things will improve, but as you know an institution as large as the nhs takes a long time to effect change.

I,m glad you have good treatment coutesy of the nhs but for many this is simply not

[janetm2]

Molly,
Thanks for letting us know how you are doing. So sorry to hear there is little help in your area and health system. I have been very lucky to have access to care and a flexible plan to see whomever and at least get partial paymennt from the health insurance. I hope you get a break and further treatment soon.
Janet

[molly]

Thank you Janet, I indeed hope to make further improvements as Istill feel its early days. Iknow the nerve was jammed in at the ligament grip, so Iexpect it was traumatised just in releasing it. I will keep you posted.

Molly

[helenlegs 11]

I don't know what on earth is going on with our NHS molly! I am going to try and approach this from a urognycologist now and at least did manage to get a referral although not from my regular GP. I did send in another letter of complaint about her, thought it best that she be given a chance to redeam herself. . . .but no! I have just received a reply that she has done everything she can for me!
I suppose she could have said it another way and I will be going on my merry way now. I am SO disappointed and feel very let down by people who are supposed to help. It's on to the ombudsman now. I'm not sure how many diagnosis of pelvic nerve entrapments they require before anything is done!! My problems can't be explained any other way!
Hope you continue with steady progress molly, as you say it is early days considering the length of time you were in surgery. Yours must have been more complicated I expect. Good luck.
Helen

[molly]

Hi Helen,

Yes I,ve had my share of trials with the nhs, although nothing like you,ve had to put up with.

Whilst we are not wealthy we have funded most of my treatment having paid tax all ours lives. I don,t think I can suggest anything to be helpful , would a few private physio sessions to get you going be helpful?

Sorry can,t think of anything else,

Regards Molly

[rea]

I wasn't able to tolerate PT until about a year after surgery but I think most PNE docs would advise having it sooner than that. I found it somewhat helpful -- especially in relieving the piriformis pain that had developed as a result of PNE. They showed me how to use a TENS unit for piriformis pain and obturator internus pain and if was very effective.

Best,

Violet

How did the PNE cause you to have piriformis pain? Mine started on the left side due to what I thought was always sitting sideways on my left side, trying to keep my butt from touching anything.

[molly]

Hi Violet,

Did your piriformis pain or obdurator pain eventually subsidd, and if so do you think this was with the help of physio or natural recovery or a combination of both.

I,m due to see my pain consultant in four months and whilst I,m not totally opposed to some more botox would much rather do it through physio.

As the few physio,s we have in this country don,t work along side the surgeons I,m feeling my own path rather tentitively.

Regards Molly