Menopause Matters Forum
Menopause Discussion => All things menopause => Topic started by: cjmca on December 12, 2016, 04:07:11 PM
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I am in so much pain I don't know what to do with myself. I flew over to London from Dublin to see Nick Panay and while the visit was useful, I'm still in the dark about what's going on with my bladder/urethra/pressure/spasm. And the traveling has multiplied my level of pain, I was crying on the blooming underground. I just don't know what to do anymore :'(
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:bighug: ring your GP?
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Oh cjmca - I do sympathise - that pain is awful. What did Nick Panay say? Perhaps you need advice from a urologist as well to check the bladder etc? I can't remember what you are using e.g. Vagifem, vaginal moisturisers?
CKLD is right - do contact your GP as you could have a UTI???
Try drinking water with half a teaspoon of bicarbonate of soda to neutralise your urine and drink enough water at other times to reduce the burning and flush things through well. Trying washing the area with warm water and bicarb as well. Do lie down if you can - this can relief the pressure not the bladder and urethra. DG xxxx
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I had my bladder checked via cystoscopy and have a "perfect bladder wall". I had two weeks where I was much better with the bladder pain, then I a) had a 3 day gap on Vagifem b) had stopped taking overactive bladder medication and c) pudendal nerve block may have worn off.
I've a GP who thinks it's overactive bladder, a gynae who thinks it's lack of estrogen, a pain specialist who thinks it's pudendal nerve and now Nick Panay was asking me whether I had a bladder biopsy and if I'm no better to fly back to London to see a urogynae. Panay is a very nice man, but if he thinks I'm going through all this pain from travelling again, he needs his head examined. I'm angry too because I asked if I could have the consult over the phone and was told no. There was no part of the consult that was anything other than a sodding conversation that could have been done over the phone and saved me a hell of a lot of pain.
I seriously sat on the plane and started praying to god that he'd just blast me out the sky and put me out my effing misery. This has ruined my life and is becoming unbearable, and everybody with their different opinions and scaring me with biopsies and IC talk is feeling like the final straw. I've just had enough :'(
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I'm so sorry you're feeling so bad hon. I'm afraid I don't have any words of wisdom on your problems but I'm sure someone will soon.
Big hugs dxx
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As you may remember I have a PN diagnose which is an umbrella term that covers all the things you have been told you have.
Yes the nerve block may have given you some relief and is now wearing off.
I hope oestrogen helps you , it does me but I am not cured and definitely have VA but also have PN as my extra pain exactly follows the PN.
However PFD pelvic floor dysfunction , can make all these things worse , and after four years it is a case of management and no cure per se , I have had to completely change my lifestyle and pace myself and it drives me to distraction some days how I have had to completely change the life I had.
I don't no where abouts in Ireland you are , but Maeve Whealan is a highly respected women's health physio in Dublin.
Has anyone suggested any of the nerve pills such as amitriptyline etc ?
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cjmca - out of all the treatments and advice you have had so far, which gave the most help?
If you need the combination of Vagifem and over active bladder medication together then maybe this needs to be continued. Did the Nerve block really help - if so maybe you need this?
I'm not surprised you are feeling angry. I've had truly horrid urethra pain on many occasions and it's utterly miserable and overwhelming - my theory is that gravity and oestrogen deficiency does it's worst and the urethra becomes squashed and then inflamed. The Vagifem used 3 times a week does seem to keep things OK for me, thank goodness, but I don't know what it would be like if I hadn't got Vagifem. Good luck Dg xxx
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Hi Maryjane
I've been to see Maeve Whelan and was being treated by one of her colleagues - who didn't think it was PN as I wasn't reacting to any of the trigger points. But the pain doc did some kind of nerve test and said my PN nerve reacted to it.
With regards to what worked - I've no idea. I was using Vagifem daily, on overactive bladder meds and had the PN block done all in quite quick succession. I noted improvement in symptoms prior to the nerve block. I'm back using Vagifem daily and on the overactive bladder meds the last two weeks but no improvement, tho too early to tell?
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I hope things start to work for you soon :hug: DG xxx
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It's the way you have been told it's due to different reasons, however, there are so many nerve endings down there it may be difficult to tell.
Do you take any over-the-counter pain relief as well as the Vagifem etc.?
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I've been given everything from
over the counter paracetamol to a morphine drip, nothing touches it. I tried amitriptylene, nortryptelene and Lyrica, all made me feel horrendous and unable to function. Lyrica made my hair fall out.
Just dunno what to do anymore, feel completely lost, and alone. I'm just existing, not living, it's misery :(
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It certainly is because chronic pain is scary - when I had dental pain I was scared because I didn't know how long it would last or how much worse it was going to get.
How long were you on morphine, it's un-usual for it not to make a patient feel woozy at the very least. Did you ring your GP or local Pharmacist for support?
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Opioids should not be given for nerve pain .
I started a secret FB group a year ago for PN , there are quite a few Irish ladies on there.
I am no longer a member , but if you want to join , there is an intermediate group called "Pudendal Neuralga and vulvodynia UK" request to join this group , they will then message you and allow you to join the secret group . However this may be not what you want to do.
.You need to be careful the amount of nerve blocks etc you have in the vasinity of the PN as it can cause more problems than it solves.
NO ONE can say yes or no to PN , it is an on an aaaumption of your symptoms, it could be coming from your sciatic nerve via the piriformis muscle , I have seen the best of the best for PN in London and there is no definite answer or cure it's management , the nerve pills can take a few months for some to get used to I also couldn't take them.
Have you tried a TENS? Give the systemic HRT a good go. There's a book called " Heal pelvic pain " by Amy Stein again some find this book helpful.
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How did you get through the night?
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I am so sorry you are still feeling bad and in pain cjcma (yesterday) after your visit to London. I do hope you are feeling better today and are able to act on Maryjane's good advice. Do keep posting whatever you are feeling and someone will be along to support you - even if you have to wait a little while ( due to Xmas preps...!)
Hurdity :bighug:
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Thanks all. Maryjane - could I ask what symptoms of PN you have? I have found a lot of my symptoms have calmed down, I remember the days when lying on my stomach was next to impossible, the pain from my bladder was so bad I think it was spasming as I felt the pain right up to my belly button. This disappeared to a large extent before I had the block done, as did the horrid bladder pain I had when lying on my side.
I feel now that I have more pain in my urethra than I do my bladder, externally it stings to the touch and I thought Ovestin was gonna burn my bits off! I don't really have any other symptoms other than that. My ladies health physio poked and prodded up in there and I didn't react to any trigger points. If it's PN related, what else can they do other than a block? If that's what did the trick for me initially, I felt no added benefits until 2-3 weeks after the block and then the benefits lasted 2 weeks. Coincided with a reduction in both systemic and topical HRT so I'm just as confused as ever. And as scared as ever. Running is a huge part of my life and I'm literally petrified that I'll never run again. Sounds daft I know :-X
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Hello cjmca -
I am very sorry that you have had such a hard time.
My story is a bit similar to yours in a couple of ways. My ovaries failed at 42 and it felt like hitting a brick wall at 100 miles an hour. I can't imagine how it was like for you, being so much younger.
The other way I feel our experiences are similar is that bladder pressure and pain are my worst symptoms.
When my ovaries first failed 12 years ago I felt I had cystitis and bladder pain for 18 months (nightmare) until I stumbled on Estrogel (HRT as estrogen gel) and everything gradually resolved. I had squillions of other symptoms but the bladder stuff plus perineal burning etc practically made me suicidal. I quit work and it was just unmanageable.
I was fine on Estrogel for about ten years + and then my doctor said I should try Tibolone (mimics estrogen without the risks) as I had been on estrogen for a long time. This was ok until I developed a horrible UTI last august and what I thought was thrush but was diagnosed eventually as vaginal atrophy 3 months ago.
I immediately returned to Estrogel and have taken Vagifem for almost a month now. Am still not well, though there is the occasional good day.
I still have horrible flares that involve urethral pain; burning perineum but most distressing of all, bladder pressure and quite frequently now, horrible bladder spasms. I am trying to figure out if it is VA, vulvodynia or PN. Or vulvodynia and PN as a result of VA due to low estrogen, I guess.
Its a nightmare and has taken over my life.
How are you doing ?
Kkay