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Author Topic: Pelvic Pain  (Read 56363 times)

Hattie

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Re: Pelvic Pain
« Reply #60 on: August 29, 2014, 09:06:05 AM »

MJ and Judith

You are doing the right thing trying to sort this quickly even though it is costing you. I was given vagifem and amitriptyline and a 2 year window for this to heal and then for me to just carry on with vagifem.

I sidestepped my GP at one point and went to see a consultant privately in Bristol - he explained everything about nerves to me and said that in years to come 'they will probably laugh at us' (his own words) as knowledge hopefully will be better.

Hattie
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Hattie

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Re: Pelvic Pain
« Reply #61 on: August 29, 2014, 09:22:51 AM »

:bighug: how about you getting together to write a book?  Getting the info out there ?  Would you be prepared to visit Dr Currie and talk about a video or similar that she can share with her colleagues?

CKLD

One step to awareness would be to get a sticky thread on here - you are more susceptible to this kind of thing happening during menopause and this is a menopause forum. Even this thread maybe helping someone out there.

I am trying to do my bit by getting contacts together locally so that women do not feel so isolated with this - a counsellor at my pain clinic is prepared to pass on someones email to me if they ask her - i can't think of any other way of doing it at the moment without posting my email openly at the clinic which i am not keen to do.

I couldn't follow through with your suggestions here CKLD - bit to overwhelming for me at the moment - i am struggling with my own reality and things are affecting my family and i do really need to concentrate on that - in fact i should probably get off this forum as well. 

Hattie x



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Maryjane

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Re: Pelvic Pain
« Reply #62 on: August 29, 2014, 10:31:04 AM »

I too have to get myself better first, physically and mentally as it is such a complicated problem, one shoe doesn't fit all.

But the London consultant said menopause is the time you see more of this, as the pelvic floor relaxes and takes the PN with it.

Things like Vulvodynia and IC are all " under the same umbrella " as the PN is in charge down there, it has control over our bladder, bowels, orgasm. Which is why peolpe who have IBS are more susceptible as this area is being constantly irritated, and peolpe who are hyper-mobile also as there Pelvic Floor is unstable.

Long term UITs and long term undiagnosed thrush can cause this also, and something as simple as a smear test it is just bad luck for us who have not been put together so well, it is also seen in horse riders, which I was for years, as was my youngest daughter who is pregnant and has SPD.
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Wanderer

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Re: Pelvic Pain
« Reply #63 on: August 29, 2014, 03:49:04 PM »

Good afternoon ladies.

Do any of you get "spasms" with this pelvic pain. I woke this morning, and everything was "squeezing and flipping", made my head feel really weird, well, more than normal! with each little squeeze I get a little bit of adrenalin, been happening all day, goes into my bladder but I have no feeling of needing to pee, just left me with a low dull ache, and "spaced out head"! Really don't know how much more I can take!

Wanderer. xxx
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Judith57

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Re: Pelvic Pain
« Reply #64 on: August 29, 2014, 04:39:59 PM »

Hi Wanderer, yes I get spasms in my pelvic floor, they are horrible and cause quite a lot of heat. When I first went to see the specialist URO/Gynae who is now treating my bladder condition, he did an internal exam and commented on how hot it was in there, he said it was due to the pelvic floor muscles overworking. I tried to have a 'pre fanny-gate' day today and went out to a local shopping mall, the first time I have been there on my own since February when all this started. As soon as I sat down on a hard chair to have a cup of coffee the spasms and squeezes started and along with that the dreaded burning!

CLKD, I agree with Hattie, perhaps if ever this nightmare is behind me, I will happily discuss how I got myself better with anyone who needs help while struggling with chronic pelvic pain but, at the moment, coping with my own life and the limitations this has put on me takes all of my strength. I am having to try and hold down a fairly stressful job in Central London and I can't even sit on the train anymore during my commute. I also have to fit in the many appointments with Harley Street specialists, four different ones the week before last, physio, pain management specialist for nerve blocks, URO/Gynae and finally vulva specialist, it is physically draining as well as emotionally draining!
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CLKD

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Re: Pelvic Pain
« Reply #65 on: August 29, 2014, 04:46:25 PM »

 :bighug:
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Maryjane

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Re: Pelvic Pain
« Reply #66 on: August 29, 2014, 05:01:45 PM »

Yes I did get lots of spasms, but mine are reducing pretty quickly ( touch wood ), it is as J57 says hyper-tonic pelvic floor muscles. If you are able try and go for a good fast walk everyday, breathing down into the pelvic floor, and letting it all hang out ( tummy wise) we are the opposite to the prolapse ladies. Although Kegels aren't that good for any of us actually, it is more to do with posture, and Yoga was designed for the mans body, not ladies and there are a lot of the exercises in yoga women shouldn't do.

Also the problem is we are now really tuned into are pelvic floors, and notice far more than we did before, if you lie down and close your eyes and do body mapping, start at the top and work down , you will find all sorts of pains you just ignore, but this has now become tuned into our brains and central nervous system, which is why they give us the pain drugs to try and cut off the signals to the brain.

However I am not wholly convinced, because I now wake every morning pain free, and my pains don't start until about twoish these days, so of I was looking for it, my mind would make it happen in the am to. If you all understand that then well done.  ;D

I have had an almost pain free day today, but who knows what tomorrow will bring. Judith57 the golden rule for us is to NEVER sit on a hard chair again, even if / when we get mended. ( positive thinking).

Wanderer I think it would be a very good idea for you to go to the vulva specialist judith57 and I see, she gives a very thorough vaginal MOT. it's a way of crossing the Ts and doting the Is. She works along side the Physio, and uro/gynae she said Judith57 and I couldn't have found a better team.

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Maryjane

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Re: Pelvic Pain
« Reply #67 on: August 29, 2014, 05:07:28 PM »

Wanderer the reason your head felt funny is more than likely what they call " centralisation" which means the rest of the body is on red alert and the nervous system wants to join in the party, although I do not consider it a party more like an unwanted guest gate crashing a party.

I the early days, I could actually feel it going up my spine to my head, I have been left with general neuropathy from it, which is reducing but is quite common with pelvic pain.

You can tell I have been reading " medical papers" my physio says she can't fob me off, as I know exactly what's going on.
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Judith57

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Re: Pelvic Pain
« Reply #68 on: August 29, 2014, 05:43:22 PM »

Hi MJ, you are quite right, I am conscious of my whole pelvic floor all the time but today, while walking around the shops, and trying really hard to release everything, there were small windows of time when I forgot about it. There were only wooden stools available in Waitrose, I just wanted to try and see if I could sit on one for about ten minutes - sadly the answer is still no! I find this all so confusing and can't really understand how my life has become so compromised... :'( the journey home was difficult as all the roads were jammed due to M25 problems but I consider today a minor victory. I didn't spend the day on the sofa feeling sorry for myself!

Wanderer, forgot to mention my electric toothbrush brings on the spasms, as did the Jools Holland concert last week, the couple above me have builders in and their drills are playing havoc with my pelvic floor. I plucked up the courage to have a pedicure on my birthday earlier this month and although the sitting was OK because I was sitting on a bed, the vibrating foot spa sent my pelvis twitching...
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Hattie

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Re: Pelvic Pain
« Reply #69 on: August 30, 2014, 08:01:06 AM »


Also the problem is we are now really tuned into are pelvic floors, and notice far more than we did before, if you lie down and close your eyes and do body mapping, start at the top and work down , you will find all sorts of pains you just ignore, but this has now become tuned into our brains and central nervous system, which is why they give us the pain drugs to try and cut off the signals to the brain.

However I am not wholly convinced, because I now wake every morning pain free, and my pains don't start until about twoish these days, so of I was looking for it, my mind would make it happen in the am to. If you all understand that then well done.  ;D


As i see this !

The body mapping as you describe is on the Mindfulness CD by Jon Kabat Zin i mentioned earlier.
As you say as you go through it old pains that you have had in other areas of the body come back to light - but these are ones that you no longer notice generally. I could feel all my old sinus trouble but it doesn't bother me now generally.

As you say if it was totally the brain controlling you would wake up in pain - so it seems it has to be the localised nerves that are still somehow generating the signals for pain and this can only be getting under control by the medical help and everything else you are using.

The Mindfulness for Pain Relief CD by Jon Kabat Zin is a spin off from his centre in America to help people in chronic pain - it teaches you to accept the painful part of your body just as sensations in part of your body.
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Taz2

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Re: Pelvic Pain
« Reply #70 on: August 30, 2014, 08:59:09 AM »

I wonder whether any of you suffering from this really dreadful sounding condition have been offered valium vaginally? I've read that it has been shown to give quite a good result.  There is a thread on Hystersisters http://www.hystersisters.com/vb2/showthread.php't=533532

Taz x
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Hattie

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Re: Pelvic Pain
« Reply #71 on: August 30, 2014, 03:46:10 PM »

Taz

I have never been offered valium vaginally at NHS Pain Clinic - you may be able to get it privately though.
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Taz2

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Re: Pelvic Pain
« Reply #72 on: August 30, 2014, 04:04:46 PM »

I just wondered whether this was a form of treatment on the NHS as it does seem that sufferers have been getting some quite good results from it.  It seems a shame if it isn't being offered routinely.

Taz x
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Maryjane

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Re: Pelvic Pain
« Reply #73 on: August 30, 2014, 05:16:06 PM »

Yes I know about them, you can also get ones that go up the back passage, more along the lines of Ibroprfen, for those that can't take them with stomach problems. I no the second one is available on the NHS. I think the Valium is to, problem is a lot of us with this problem are so sensitive to the fillers.

In America they can have them made in compounding pharmacies, so they use fillers suitable for sensitive skin.

I am going back to see the Vulva specialist soon, I will ask her.

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Hattie

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Re: Pelvic Pain
« Reply #74 on: August 30, 2014, 06:39:43 PM »

I did ask about Baclofen once at the NHS pain clinic but the consultant said it wouldn't be suitable.




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