Menopause Matters Forum
Menopause Discussion => Other Health Discussion => Topic started by: Hattie on March 28, 2015, 10:51:22 AM
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Is there anyone on this forum please who has been 'living' with Chronic Pain for several years and who would be willing to chat to me by personal message ?
My pain started Five years ago this May and is vulva pain - i am 60.
During these years i have put my faith in whatever remedy i have been trying at the time be it medication, physiotherapy, acupuncture etc but things are no better. Now i am putting faith in my body to find some sort of answer as i don't know where else to turn to.
I 'live' now by a series of different distractions and a small element of hope - today i am looking forward to watching the Voice on tv- wednesday i will be seeing my daughter.
Thank you
Hattie X
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Hi Hattie
Have you tried local and/or systemic oestrogen? I have had horrible burning urethra and discomfort around my vaginal area on and off for many years - I tried local oestrogen when I wasn't on full HRT which helped a bit but I'm now on systemic and local oestrogen and now I'm really comfortable for the first time for years.
I still use Multi Gyn Actigel every night to keep that whole area healthy and I make sure I empty my bladder properly every time.
I would definitely try some local oestrogen as this would be quite safe.
You have my sympathy - pain around that area is truly horrible and makes one feel miserable.
DG x
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Thanks for your reply Dancinggirl - i'm glad that the HRT is helping you.
I used vagifem for over two years and ovestin applied to the vulva before it all got too sensitive and i couldn't stand it any more.
The vagifem made no difference to the pain which gradually got worse during that time.
I am not willing to go on systemic oestrogen at 60 and i would probably need to see a gynae privately to obtain it.
I now have daily burning pain or severe itching, swelling and tight muscles around the irritated nerves so it is pretty chronic.
Some days i can't believe your body could do this to you.
Hattie X
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Hi Hattie,
You probably know about this site but just in case I've put the link below.
http://www.vulvalpainsociety.org/vps/index.php/vulval-conditions/vulvodynia
I have no personal experience of this but is sounds miserable and I wish you well.
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I did try using the Estring which gives a more continuous small amount of oestrogen and I found this the least irritating and the most effective. The only thing I found was I tended to get a bit of thrush with it but managed to control that by using lots of Multi Gyn Actigel. When I started using Vagifem it made me burn and it irritated quite a bit but now I'm using full HRT I've gone back to using vagifem twice a week alongside and it seems to be working better now. You could try the Estring to really give that area a boost of local oestrogen to see if it helps. It is latex so there aren't any additives that can irritate - Vagifem and the oestrogen creams have fillers that made me burn. You simply slip the Estring up inside and it sits around the neck of the uterus and you quickly forget it's there - you just change it every 3 months. I used to shove a dollop of Multi Gyn up inside every night to help keep the balance right.
I can understand you not wishing to use full HRT especially if you don't get other meno symptoms - I wasn't getting any sleep because of flushes and finding it difficult to keep working, so being back of full HRT (though on a very low dose) has made life a lot easier.
I think this whole issue around vaginal discomfort is a difficult one to treat - we are all different and finding a way to control the symptoms seems to vary from one women to the other. You seem to have tried every alternative in the book - probably at great expense - so perhaps going back to local oestrogen and concentrating on keeping the vaginal flora more acidic might be a good and possibly the safest option at the moment.
I do think the burning and itching is a sign that the flora balance is wrong, so do try using some of those treatments that restore the acidic balance and eat lots of live yogurt. I assume you practise the 'be kind to your bits' regime of showers not baths, nothing scented etc.?
I think the tight muscles and nerves happen because you are in pain because of the itching a burning - it's a vicious circle.
I hope thats helpful DG x
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Hi Hattie, sorry to hear you are still suffering. I am no better either I'm afraid but I think my problem is a mixture of a few things, a trapped or compressed pudendal nerve on the right side which makes it impossible for me to sit down normally, it causes intense pain and then causes my pelvic floor to go into a spasm which then leads to a burning pain in my vagina. Dr B also diagnosed a rectocele last year which causes a whole host of other issues. I was also diagnosed with interstitial cystitis last year which is miserable with intense burning and bladder pain. As you know, I really went through the mill last year trying to get myself better but now I am just taking amitriptyline and HRT and hoping my body will sort itself out. It is so awful living with chronic pain, especially in the vulva. I could live with chronic pain in my knee or shoulder but this really is the pits!
I know what you mean by distraction, I now stand on the train doing a Su Doku Puzzle to take my mind off the pain during the journey to and from work. I just try to make sure that I don't do anything to cause a flare-up but it means I am only living a half-life, existing rather than living! Work is a good distraction for me but I need to use a special cushion and, even then, sometimes the burning is so bad that I have to go to the loo and pour cold water over my vulva :'(.
I am seriously considering giving up work now to try and concentrate on getting better, I might look into Body Stress Release as I have read that it can be quite successful in treating vulval pain.
I know what you mean about not quite believing your body could treat you this way.
Take care
Judith x x
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Hi Hattie,
You probably know about this site but just in case I've put the link below.
http://www.vulvalpainsociety.org/vps/index.php/vulval-conditions/vulvodynia
I have no personal experience of this but is sounds miserable and I wish you well.
Thanks Rosebud - i have known about the vulva pain society for some time.
Hattie X
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You seem to have tried every alternative in the book - probably at great expense - so perhaps going back to local oestrogen and concentrating on keeping the vaginal flora more acidic might be a good and possibly the safest option at the moment.
I do think the burning and itching is a sign that the flora balance is wrong, so do try using some of those treatments that restore the acidic balance and eat lots of live yogurt. I assume you practise the 'be kind to your bits' regime of showers not baths, nothing scented etc.?
I think the tight muscles and nerves happen because you are in pain because of the itching a burning - it's a vicious circle.
I hope thats helpful DG x
Thanks for your reply Dancinggirl - my pain is all on one side and i know that it is an irritated nerve problem - a physio has explained to me that the tight muscle reaction is the area protecting itself.
I did not have VA before all this and but being postmeno i have been told that i was vulnerable to this happening so maybe the oestrogen comes into it all there - i am really not sure what amount of oestrogen would 'cure ' this now.
Hattie X
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I am only living a half-life, existing rather than living!
Judith x x
Hi Judith
Fear that we are in a similar boat and can't get off - i am not sure where i will look to this year as i feel that i am all out of options.
I watched Poldark last week and he was asked if his war wound pain still bothered him - he said that it no longer did - on the Missing programme the man whose leg had been badly crushed in a car door also said that his pain had somehow gone after 8 years - my ears **** up at comments like this now and i think can this pain some how stop.
My emotions are all over the place - vulnerability and fear being the worst - i am sure that you feel the same.
Take care too.
Hattie x
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Hi Hattie, my emotions are all over the place too, on a fairly pain-free day sometimes I make the mistake of thinking I am 'normal' but then it all comes crashing down again. I have very dark times too as I can't imagine living the rest of my life like this. My brother phoned me last night and asked me to join him and his family on holiday in Cornwall this summer but I can't even imagine how I would tolerate the journey down there. It makes me so sad :'( :'(
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http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3324744/
http://www.research.vt.edu/resmag/sciencecol/hypnosis96.html
I found these two web links for you regarding hypnotherapy and pain relief. I know it's completely off the wall but sometimes the most unlikely things work. There are proper medical hypnotherapists out there so it might be worth doing a bit of research.
Pain is a strange thing, and the brain is the signal sender for pain so anything that can break the link might be worth thinking about.
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Hi Judith
All i can do is :'( with you - the furthest i can tolerate now is a 30minute journey into town or my daughters and i am not driving my husband is. I used to be afraid that the medication might cloud my driving judgement now i am afraid that the pain with affect my concentration.
I have had to turn down my invite to a family wedding which is in a few weeks time - it hurts deep down as my head wants to go with everyone else - so i know how you feel about Cornwall - i know that i won't stand the journey let alone dolling myself up for a wedding when i feel like such crap , staying away and meeting different people - it is all going to be too much.
When my dad was ill he used to say 'you have to know your limits' - i keep telling myself this now - staying within my limits is where i am safe, where i can do what i can manage - not to push somewhere beyond even if i want to and that is hard for me as i have always pushed myself to do things - planned and organised things for and around my family.
I'm blinkered about living the rest of my life like this but i know that it is on the cards - each day i think tomorrow will be better and like you say some days are. Three weeks ago i went for a walk with not too much pain but then it all comes back.
All such negative stuff to put here on the forum but it is the reality :'(
Hattie X
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http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3324744/
http://www.research.vt.edu/resmag/sciencecol/hypnosis96.html
I found these two web links for you regarding hypnotherapy and pain relief. I know it's completely off the wall but sometimes the most unlikely things work. There are proper medical hypnotherapists out there so it might be worth doing a bit of research.
Pain is a strange thing, and the brain is the signal sender for pain so anything that can break the link might be worth thinking about.
Thank you Rosebud i will look at these links. Hypnotherapy is not something i have tried and it is not off the wall at all.
One consultant has told me that the brain is a monster when it comes to maintaining pain - need the switch off button somewhere.
Hattie X
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I hate the 'limits' that this has imposed on me, like you I was always a whirlwind, never stopping and living life nineteen to the dozen. I really struggle to understand how this has happened to me but just keep telling myself 'it is what it is, try to deal with it and hope it goes away'. My other half keeps telling me to get back on the medical merry go round but I have lost all my confidence in the medical profession I'm afraid.
Take care,
Judith x x
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All I can offer is a :big hug: …………. chronic pain is tiring, difficult, restrictive :bang: :bang: :bang:
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Hi Judith
I was given a 2year window on amitriptyline and vagifem to get better and you are still within that time span.
Hattie X
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All I can offer is a :big hug: …………. chronic pain is tiring, difficult, restrictive :bang: :bang: :bang:
thanks for the hug CLKD - maybe oneday chronic pain will be fully understood - as far as a process in the body goes it doesn't seem to fulfill any purpose.
i much appreciate now what my body does 'do' in any circumstance to put things right when something goes wrong.
Hattie X
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I don't think there are any limits on the use of Vagifem now - it is now accepted that VA doesn't go away and ongoing use of local oestrogen may well be necessary. DG x
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Hattie, I think a lot of my problems are 'mechanical' as I remain pretty much pain-free as long as I don't sit down and put pressure on that damned nerve. I am typing this kneeling down and leaning on the sofa, can't face sitting down at the moment. I hate it.....
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I don't think there are any limits on the use of Vagifem now - it is now accepted that VA doesn't go away and ongoing use of local oestrogen may well be necessary. DG x
According to current thinking you are right in that respect and I accept that Dancinggirl but if you haven't got VA in the first place is oestrogen going to help nerve pain ?
During the 2 years and more that i used localised oestrogen it did nothing for the pain which just gradually got worse.
i can compare one side of my vulva with the other - one side is fine - no pain - the other side where my 'injury' occured is where i have all the pain.
I feel that i was given vagifem because it is in the tool box but is not a remedy for everything vulva.
Hattie X
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Rosebud
I have found a clinical hypnotherapist in my local town who specialises in mental health and persistant pain which seems to fit the bill - i have been given an initial appointment for mid April when she is back from holiday.
Feel i have nothing to lose in giving this a try. Will see what she says at first appointment which is free.
Hattie X
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Well done Hattie, you've nothing to lose, go for it. :great:
P.S. Let us know how you get on.
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Some Hospital Anaesthetists run 'pain clinics' ………..
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i have been through the pain clinic system - i am sure that they can help some people - a friend of my husbands was helped with back pain but like Judith57 i have lost my confidence in the mainstream medics.
At the most all they can offer me is a limited selection of drugs which mask the pain - i have also had a nerve block done which i can't be sure hasn't done me more harm than good as a lot of muscle tightening happened after i had it done.
Hattie X
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http://www.pelvicpainrehab.com/alternative-treatment/404/how-hypnotherapy-can-help-your-pelvic-pain/
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Have just read these very sad posts and my heart goes out to all who suffer chronic pain. I have constant back, hip and shoulder pain and was diagnosed with possible fibromyalgia many years ago. Nightitime is especially bad so I have an idea of what you are going through. Like you, I can't bear to think that I will suffer this for the rest of my life but unless a miracle comes along to dissolve my arthritis then that's what's it's gonna be. Love and hugs to all.
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I sympathise with you all. My pain is not in the same area as some of you but it never goes away.About 8 years ago I fell down the stairs and did considerable damage to my facial bones. The remedial surgery to insert titanium plates resulted in permanent damage to the nerve running from under the eye to the chin. As a consequence I have constant pain and burning down the side of my face and through my mouth area. Painkillers do nothing, I find distraction works the best so I try to keep my mind occupied. If it gets really bad I sometimes find a heat pad helps but sometimes I just feel that I would give anything for an hour completly free of pain. I do try to remind myself that the outcome of the original accident could have been a lot worse but to always be in pain is tiring and does take a bit of the pleasure out of life. I did wonder about acupuncture but can't find any info that says it helps nerve pain. Hope everyone finds some relief somehow!
Thorntrees
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Thorntrees - in 8 years treatment may well have altered enough to consider some form of mechanical pain relief? Have you seen the Surgeon recently? Could an injection into the nerve root, similar to what is given for trigenimal neuralgia, a possibility?
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I have the same issues as Hattie and Judith 57 and its the PITS. I am going to see a Chinese accpunctorist tomorrow who worked in hospitals in China for ten years, so will report back. I did not get on with hypnotherapy.....
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Nothing mechanical can be done CLKD as the nerve is severed not just inflamed or irritated. A nerve block injection might take some of the burning sensation away but not the numbness and the Consultant said it would need repeating at regular intervals and would be difficult to place.To be honest I have learnt to live with it mostly. Will be interested to hear how the acupuncture goes Maryjane.
Thorntrees
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:bighug: so sorry Marras and Thorntrees
All you want is a day off sometimes from the pain.
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I have the same issues as Hattie and Judith 57 and its the PITS. I am going to see a Chinese accpunctorist tomorrow who worked in hospitals in China for ten years, so will report back. I did not get on with hypnotherapy.....
I have tried Chinese acupuncture at a Natural Health Centre - it didn't help but it may help you. Also If you try Western Style acupuncture which goes in closer with needes to the area it may help you.
A GP at the pain clinic did western style acupuncture on me - needles in the vulva and perineum at one point - she believes i have a trigger point in muscle that she couldn't shift.
Hattie X
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To be honest I have learnt to live with it mostly.
Thorntrees
Thorntrees
Could i please just ask you if you feel that your pain has lessened over time ? Have you got any other coping tips at all ?
I try not to feed the pain by giving it attention but it is easier said than done - i often find myself going into a tunnel or getting distressed neither of which is any good to me or others around me.
Thank you
Hattie X
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Hi Hattie. It's difficult to say if the pain has lessened as I think I have just got used to it being there. Sometimes I seem to go through periods when it seems worse but that usually coincides with my feeling under the weather for some other reason when everything about life seems worse. There are practical things I do like trying to keep the cold wind off my face but that only relates to my type of pain and wouldn't be relevant to you. You are right that it is very difficult to ignore constant pain,it's also difficult to explain to other people who can't understand why you can't just take a couple of paracetamol!. I know that if I can lose myself in a book or craft activity it fades into the background and I do try to keep my mind occupied but of course it doesn't always work. Sorry I can't be of more help, if I ever find a solution I will be posting on here. Take care .
Thorntrees
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Thank you Thorntrees
I think the bit i now need to overcome is just getting used to it being there -deep down i am still fighting it and wishing it away - my husband keeps saying to me to try and change my attitude.
I have read somewhere of a lady using mindfulness to eventually let back pain seem like different sensations in the body but i think it had taken her some time to achieve that.
Yes - like you i find any stress makes it all worse and the distractions do work at times for short periods.My best day recently has been when we went for a walk with my daughter in an area where i hadn't been before - the pain was always in the background but not so bad. I was where i wanted to be - new scenery etc - the brain is so complicated.
Many people think that if you have been to a pain clinic then things are solved - even i went along at first to the pain clinic with high hopes - by the end i was feeling quite cynical.
I will be posting too if i find a solution - one consultant said that in years to come there may be greater understanding and we will be laughed at for how things are treated now.
Take care too
Hattie X
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I am seriously considering giving up work now to try and concentrate on getting better, I might look into Body Stress Release as I have read that it can be quite successful in treating vulval pain.
Judith x x
Thanks Judith for mentioning the Body Stress Release - i've been looking into that this afternoon and sent off for a free booklet.
There is one practitioner in the next county to me.
Hattie X
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You never know Hattie, if we all pool our resources we might find something. I am so miserable with it all at the moment, this very day last year I was awake all night with the pain so took myself off to a private hospital on April 1st, they did a cystoscopy that afternoon to check for bladder cancer. I can't believe I am still searching for an answer a year later... :'(
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Neither can I. For me acute pain is worse 'cos I don't know how long it's going to last and then I get scared :'(
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Acute pain may last a while but it usually has an outcome as its function is for healing or warning in the body. If your pain lasts for 3 months or more you are moving into chronic pain.
Only a minor thing but i shut the corner of the car door on my leg recently - daft as i am ! - quite a painful mark but i found myself watching it healing more than i would ever have done in the past. So the body can heal there so why not in the vulva - maybe there are too many nerves there to be affected ?
Until someone develops a scanner that can see nerves especially in the pelvis to me it is all a bit of a shot in the dark regarding treatment.
Hattie X
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You never know Hattie, if we all pool our resources we might find something. I am so miserable with it all at the moment, this very day last year I was awake all night with the pain so took myself off to a private hospital on April 1st, they did a cystoscopy that afternoon to check for bladder cancer. I can't believe I am still searching for an answer a year later... :'(
i will post back on anything i try - as you say you never know. Looking round at Body Stress Release yesterday i came across one site and had a look at the cost - it said 350 per half hour - i thought What ? ::) then realised i was looking at a South African site and it was in Rand !! beam me up !
Hattie X
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Oh I've done that with the car door too, the pointy bit at the bottom >:( - when I had radiation treatment my body took longer to heal …………… it took about 5 years before healing became 'normal' for me.
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Tonight, for the first time in I can't remember when, I went for a drink after work with my colleagues. I was so nervous about it as it was going to involve sitting down. We got a taxi from work to a wine bar in Covent Garden and I sat with my hand underneath my right buttock as usual, got into the wine bar, found a table and sat with my hand underneath my right buttock - so fed up with it all. Here is the thing though, after about an hour of discomfort, with spasms in my pelvic floor, it gradually improved and after a few glasses of wine I found I could sit comfortably and chat to my friends - a combination of relaxation and distraction I guess. I couldn't sit on the train on the way home though but it does show that the brain has a lot to do with this pain. I'm not suggesting we spend our lives tipsy but we certainly do need to try and relax and divert our brains. I'm acutely aware of how vicious this circle is, pain = stress and stress = more pain, but how do we break it?
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Judith
If it helps at all my husband made me a type of 'cushion' to sit on which may save you putting your hand underneath your right buttock all the time.
We got two garden kneelers from B&Q and he stuck them together to make them thicker as they are quite thin then cut two rectangles out of them. When i do sit on a hard chair i put each piece under one buttock to keep the vulva area off of the chair.
i have two lots - one stays in the car permanently. The ones i got are bright yellow but could be covered with something to make it more discreet or a carry bag that folds around it for use.
I also made a 'U' shaped cushion out of a TKMax draught excluder - it is a thick one with harder foam - i bent it round to suit me then used strong sewing webbing to sew around the ends of it and underneath to keep it in a 'U' shape - bit of a challenge but it is holding together still.
I take some heart from someone on the 'other' forum who has healed after 10 years or so even though he is a man - he puts it down to mindbody approach - i can't quite get my head around it all at the moment but it does seem that the answer lies in your subconscious mind that is maintaining pain. As a woman though i do realise the menopause effect in the area is not helping healing - that area can heal easier when you are younger - so what is happening to us in the localised area probably isn't helping.
I am sort of hoping that the localised nerves can switch off or the brain gets tired of maintaining pain - i could deal with numb all the time.
Take Care
Hattie X
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- when I had radiation treatment my body took longer to heal …………… it took about 5 years before healing became 'normal' for me.
I had no idea that radiation treatment has that effect.
Hattie X
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What's the 'other' forum??
Sound subversive!!
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Hi Rosebud
Sorry I just wrote 'other' forum as Judith will know what i mean - now i will mention it anyway - there is a forum on the HOPE (Health Organisation for Pudendal Education) website. The forum is pretty gloomy and not good reading as there are very few positive outcomes but it does give information which can help you make decisions.
It is an american site it shows how their approach via their health insurance is different - which seems to me is much more client led and about how much insurance you have. They have a few more treatments than we do but don't seem to have many answers.
The man i mentioned came off all his medication after having had two pudendal surgeries and gradually healed.
Hattie X
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Not subversive then, just depressing. :( :(
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Afraid so - i first found the site in 2012 after one of my pain symptoms then became like something poking in my vagina - which indicates pudendal neuralgia - they list UK consultants and specialist physios - i have been to see one of both and wouldn't have had the information otherwise - not that it got me anywhere much but back to my local pain clinic.
Also lists for other countries - germany, australia etc. Unfortunately France where they do more for pudendal issues and where others including the americans have gone for training don't report much for some reason.
Hattie X
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Hattie knows I refer to it as the 'No-Hope' forum. I do have a cushion that I use in restaurants Hattie and it is quite successful, I think someone had recommended it on the interstitial cystitis network forum. It was about £30.00 from Amazon but it is really good and quite discreet. I just can't really carry it around with me all the time and the trip out last night was very much a spur of the moment thing so I wasn't prepared.
xxx