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[Judith57]

Oh Hattie, I am so sorry you are in so much pain, i hope you manage to get some relief. Are you any further with your plans to go to France?

I am in a dark place too at the moment, my bladder is really playing up and my anxiety is going through the roof! I just went to sit (very carefully) on the bench that I had put in Greenwich Park after my husband died. There was a woman already sitting on the bench crying when I got there so I sat down and said I hope she didn't mind me sitting there but it was my 'husband's bench'. So she told me all about her problems, relationship broken down, lost her job, sciatic nerve pain....and I told her all mine. What a couple of sad souls we were!

I am still struggling to understand how I have ended up in this state 

[Wanderer]

Thanks Hattie, you are kind to be concerned. I am being carefully monitored by both my GP and Consultant, and my Evorel is very low dose, as is the Vagifem. I used to be on 25 twice a week, and now I am only on 10, as the 25's have been discontinued. Actually the Vulvadynia is the least of my worries, it's the PFD that is the centre of all my main symptoms.

My Chiropractor now tells me that the Ischial Tuberosity is the main cause of my pain, that's the bone that goes into the buttock, caused by the pulling up of the pelvic floor muscles and ligaments. She says that it's now affecting my hamstring, that's why I have a clicking feeling, the ligament is out of alignment! When I touch that bone it is really sore and tender, and I can feel it going right into the genital area, and accounts for the weakness in my thighs, She thinks the whole nerve area is inflamed, hopefully the Pregabalin will help this. With the VA and Vulvadynia, no wonder I am going bonkers with it all, and that's without all the digestive issues!!!

Thank you for caring!

WANDERER XX

[Hattie]

Wanderer

I think sometimes it is half the battle when someone can explain to you what exactly is going on - although you don't really want any of it.

Take Care

HattieX

[Hattie]

Hi Judith

I've not heard anything back from france but it has only been just over a week - it is giving me time to think about how to react to a decision either way.

The bench must mean a lot to you as a connection with your husband - i think i would feel that anyone i met whilst sitting there was someone i was meant to meet that day.

Hope that you are not in such a dark place today - it is all to easy to go off to the bad places because this is restricting your life -my counsellor spent a lot of time with me talking about how thoughts affect you - if i am going to a bad place i try and change the thought immediately. You have had two losses very close together - did you have any counselling help at all afterwards ?

My counsellor offered me further counselling after she had finished with the pain counselling but i didn't take it up as i was pretty tired by then - i used to come back mentally exhausted after sessions with her.

Hattie X

 

[Maryjane]

Off to UHNN to in London, really can't face the journey it is pouring, just dug out all the paperwork to take with me and read the original consultants report " he said this lady has major issues " regards PN and we look forward to seeing her that appointment has taken seven months for the pelvic pain department it is that overstretched with referels for this problem.

They would have many more I am sure if more people knew about it, my GP had never heard of it, and it does not come out of the local budget, it comes out of NHS England pain budget which is separate, a special pot for chronic pain sufferers.

Although I am not expecting anything earth shattering to happen, but need to discuss some oddeties on my MRI neurography, as I have nerve impingement at L5 which is the nerve that goes to the genitalia, I was originally told that shouldn't be causing a problem, but two other specialists disagree .

Depending on how it goes, then I will send my letter to France to have that in the simmering pot regards PN surgery,so much to think about.

I have my first grandchild to look forward too, so that is keeping my mind occupied.xx

[Hattie]

Hope that it goes ok Maryjane - My experience of the pain clinic is that they are just there to help you cope with the pain - drugs, blocks, acupuncture, physio, counselling etc.
You may need another specialist in on the same appointment to discuss your MRN with the pain consultant.
I had a gynae in on my appointments only because he was recently working with the pain consultant i saw and giving blocks vaginally.

HattieX

[Judith57]

Hi Hattie, the bench is a very special place for me and people are always so kind if I join them when they are sitting on it. They had to move it to the children's playground during the Olympics as it's normal 'spot' was on the cross-country horse jumping course. I didn't go and visit it then because it wouldn't have been the same and I imagined that all the benches that had been moved would be squashed around the edge of the playground....

I have had a better day today mentally, I am far better mentally when I am at work, it is just difficult trying to manage the pain sometimes. Something has made my bladder flare up again and I had forgotten just how nasty that is, when my bladder is behaving itself it is easy to forget! So I have had the constant burning and needing a pee all day.

I didn't have any counselling after my two losses but I did really throw myself into my job and that was therapy for me. Also, I was really healthy and could cope mentally with anything really. I will have to increase my ami again because I didn't sleep very well last night.

I hope you are getting better pain relief now.

Wanderer, I think I have the same as you, the actual sitting bone in my right buttock is so tender that, in order to sit down, I have to cup my hand under my right buttock. Also, when I touch the sore spot I can feel it going through to my genital area. I also have numbness at the top of my right buttock, just where the 'builders bum' would be if I was a man. I am also aware that my pelvis is mis-aligned. I have been toying with the idea of going to a chiropractor for a while now so I might make an appointment.

Take care

Judith xx

[Hattie]

Thread bumped for Sarajoy to find easily

[Hattie]

I have just bought a book with two CDs called 'You are the Placebo Making your Mind Matter' by Joe Dispenza - someone on another forum has recently read it who is slowly healing.

My pain is not imagined but if my mind can heal my body that would just be great - no doctor can tell me what exactly is wrong or solve it in their way with masking pain with drugs so this may be worth a try.

Will post back on it sometime.

Hattie

[Maryjane]

Anything is worth a go with this awful condition, or any long term chronic pain.

[Hattie]

Judith 57

Hope that you are ok ?

Just thought i would mention what i was given in a nerve block when i had it done - it was and anaesthetic and Depomedrone active ingredient methylprednisolone. I just wonder what you have been given in your nerve blocks to compare notes ?- only say if you want to.

To All

I now have also just started taking Magnesium - half a 150mg tablet a day to begin with from Superd**g to see if that will help. This is magnesium oxide which is not best absorbed so i am going to get some Magnesium Citrate or Malate.
You just have to be careful not to get loose stools with this.

http://www.medhelp.org/posts/Heart-Rhythm/Magnesium-supplements----to-avoid---how-to-take-it-and--safety/show/1002415

Hattie X

[Judith57]

Hi Hattie, I am struggling quite a bit physically and emotionally at the moment. This time of year is always sad for me as my husband died on 1st November and I remember very vividly how ill he was and how frightened I was the day the clocks went back, he was very ill on that Sunday and was taken into a hospice early the next morning.

I have all kinds of really weird things going on with my bowels at the moment, probably the same kind of things that Minnie has. The burning has now moved from my vagina to my rectum and if I put any pressure on the area where I feel I have a trapped nerve, it causes my pelvic floor to start 'flipping' do you know what I mean? If I sit down for any period of time I start to get the 'cheese wire' feeling.

I'm afraid I don't know what was in the nerve blocks, just that it was an anaesthetic and a steroid.

I saw a medical herbalist at The Hale Clinic recently and the tests she has had done confirm that I have a leaky gut and she thinks this is the cause of my bladder problems so I have ditched the anti-biotics as they were making me feel really unwell and am trying to adjust my diet and am taking her pro-biotics and herbal supplements to try and calm my bladder down. I don't really know what to do for the best anymore but there is no getting away from the fact that there is a nerve trapped somewhere, whether it is the pudendal nerve or the cluneal nerve I am not sure....

What have you decided to do regarding France? Have you started taking the Gabapentin again? Is it helping?

I have not been very active lately on the Forum I'm afraid as I have been in a bit of a dark place.

Apparently what doesn't kill us makes us stronger....

xxxxxx

[Hattie]

Judith57

Sorry - i have asked you about the nerve block at a bad moment - i didn't realise that this time of year held sad memories for you - i apologise and hope that the coming days aren't too dark for you.

I don't get the pelvic floor flipping as most of my pain and muscle tightness is in around the vulva and below it - in that line of muscles running towards the rectum - i get the cheese wire quite often.

I heard back from France - they will see me having read the 'history' i sent them - i was given appointments for early February next year but have asked for it to be changed to the following month or beyond. I thought that i would initially just hear that they would consider my case - not to be given an appointment straight away. I can't make this appointment and I am waiting to hear now about another appointment date.

Also need to consider that they will give me another block or blocks as a test in France and that they are deciding about surgery or not - i am not entirely sure it would be an answer for me.

Are you considering France now ? - i will pm you any details if you would like me to.

I titrated back off the Gabapentin - it makes me feel awful headwise and doesn't do much for the pain - the doctor has now given me one lot of Pregabalin but i have not taken it yet. When my pain is bad it is the back of the vulva around the Ischial Spine that is always worse - i just wish someone could tell me what is going on there - is a nerve/s getting trapped or is it a nasty trigger point. No doubt all you want as well is for someone to tell you which nerve/s and where you might be trapped.

Probably madness but at the moment i am trying titrating down off the Nortriptyline - after 4 years just want to see if my body has an answer for all this - none of the drugs have meant i have been painfree - at least i am not so constipated at the moment. If i go back on a drug it will be the Pregabalin first.

Hattie X

[Judith57]

No need to apologise Hattie, I am just feeling extra sad at the moment.

I think I need to get my bowel problem sorted out as I am sure I have a huge bacterial overgrowth due to all the anti-biotics I was taking for my bladder. I am like you, I just want to know what has happened to my body. I think I will need to give up my job shortly as my self confidence is at an all-time low.

I would be very interested in the contact details for France, if you could pm me the details that would be great.

I am just taking 20mg of amitriptyline at the moment, I don't really want to go on anything stronger just now.

Take care,

Judith xxx

[Hattie]

Hi

I have asked someone on another forum who i respect to recommend some books on mindbody connection and he has kindly replied with the following

These are for general information

Healing Back Pain - the mind body connection - John Sarno (about more than just back pain includes pelvic pain but a bit short on the 'how to' )

The Great Pain Deception - Steve Ozanich ( receives good reviews)

The Hidden Psychology of Pain - Dr James Alexander (the author had pelvic pain)

At the Speed of Life - Gay Hendrick


 i have nearly finished the Joe Dispenza book i mentioned earlier - i would say that this book is partly a scientific explanation of meditation - there are 2 CDs that accompany it which i haven't tried as yet - i can relate to things he is saying but he is very repetitive - i found some of his examples of 'healing' a bit hard to swallow but i am not dismissing it entirely - my starting point is that i am a firm believer that emotional stress puts your body out of kilter    .He openly admits that he is comfortable with criticisms that he is a faith healer.

Hattie X