Having a bad day

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Yes I may need to keep using this meds longer Tracy because as you say, its early days yet. May go to the doc re the urinary probs and even mention a Urologist/urogynecologist etc. I will just give it a bit longer first. Yes its very trial and error isn't it. I was OK again this morning but the soreness is coming back again. I hope it doesn't go as bad as yesterday. :-)

That's a good point sha, an ice pack though I can see that getting to see the proper doctor is the answer. Thanks. :-)

Hi Suki, I'd never heard of vulvodynia till it was mentioned on here. Interesting reading about it though, and yes going by what you and others say, I may have got it too. Often my condition does flare up during the day. The it will sometimes come and go too. So not, I've not tried amitripilyne but I think I will mention it to my Doc when I see her. Thanks

:-)

Vulvodynia? I've read some about that, but don't know much about it. Hope I don't have to find out. Don't need another dis ease. If you are having an urge to wee alot and only dribbling a lilttle. You might be retainining urine. With the UTI's get it checked. A GYN, the one that said I wasn't her patient and had never been to her office, she sent me str8 to a urologist. Bad UTI and urine retention. Handed me a bunch of catheters and told me to cath myself at least once a day. Imagine the UTI I got from that one! Yeah buddy I will be back to your office. Don't know about the UK, but  here those doctors got their hands out for the cash before ya get into the exam room. No lie.

Sorry you have the symptoms too Liz. Though I must admit i that unless I get a UTI, my wee doesn't burn. It's up inside my vagina that burns or is extremely sore. You say it took a year for your to be diagnosed with vulvodynia. Well I've had what they think is V A since about July 2014 so its been almost 2 years. Definitely going to mention it to my Doc though. Anything is worth mentioning isn't it. It might be my answer. Thanks.

Hi Suki girl, Thanks for taking the time to type this out for me. Very interesting that vulvodynia is about the nerves and needs something like amitripilyne or something that will dampen their activity. I am wondering if it affects your urge to wee as well as I have days when I feel I want to go all the time. Then when I do go, there is only a trickle. Also I have noticed that when I have days when my urge is normal, I feel like if I don't get my pants down quick enough, I would wet myself - I'm not bursting or anything when I feel like this. I remember in the early days of the "VA" 18 months ago, my family and I were heading home from the south coast and I wanted to stop at services, a trip of about 16 miles. I was in a desperate state and was bursting on this occasion though I'd only had two cups of tea. We got to the services and hubby parked a way off the entrance. I was really scared I would wet myself in front of the kids so I had to concentrate just to get to the entrance. Then it turns out the loos were at the back of the building so even further to go! Can't tell you the relief it was to get to the loo! But I've never felt so desperate since then. It's just felt like bladder irritation and bloating and ive wanted to wee all day. It's not there now I might add. Infact apart from a bit of soreness on the outside of my vagina, I have no symptoms as yet. Like most days, they will probably build up during the day. Thanks again. :-)

Hi Suki do you still have vulvadynia and is it manageable? Has your doctor tried taking you off the tablets ? Mine did and the same pain returned as when it all started. I also get recurring thrush and in some medical info it seems to be linked do you have this? 

Hi Shirley. I believe that urinary incontinence is a symptom of the menopause, not directly related to VA. There is stress incontinence, when a little bit leaks out when you laugh or cough (a "whoops" moment, as that stupid advert for the women's incontinence pads says) and there is urge incontinence when you suddenly feel like you need a wee and you have to go there and then and holding back the flow is near impossible. I have the latter - I have to bend over and clench every muscle down there so tightly or the flood gates will open, which they sometimes do and there is no way I can get to the loo in time. Luckily this has only happened at home thus far - I think when I am out and about I make sure I go at every opportunity so it doesn't get to the tipping point. I am doing the pelvic floor exercise where you squeeze the muscles around the wee hole (to use the scientific name) to try to help with this problem.

hi Liz, I think I have said on other discussions that after 1.5 years I was free of the vulvodynia due to a combination of amitriptylene, acupuncture, manual desensitisation and pelvic floor exercises. However, I am still on the amitriptylene - my consultant told me that once I feel I am completely cured I should stay on the amitriptylene for 3 more months then very very gradually ween myself off it, otherwise she has found with other patients that the pain returns. I am not really sure when I was completely cured because although I no longer had that burning sensation, I still felt sore after intercourse. But I was not sure how much of that was due to lingering vulvodynia or beginning of VA. However, just recently my hubby and I have been able to have a reasonable duration on intercourse and I have not been sore after. That could be because the vulvodynia is completely cured or the various supplements I take and topical the vit e oil and coconut oil are helping with the VA. I suppose I need to ween myself off the amitriptylene eventually but I am afraid the pain will return - I do not want to go through that again, it was very debilitating on my ability to live a normal life, and function as a working mum.

oh yes, and my vulvodynia began due to recurring and persistent thrush - I had it on and off for 5 months. Taking fluconazole would stop it for a week or 2, then it would return. We are not sure exactly when the thrush ended and the vulvodynia began. After that I did eveything I could to stop thrush occurring again - went on an anti thrush diet, took various supplement that are meant to be anti thrush (garlic, cinnamon, probiotics, thyme leaf, rosemary leaf, oregano oil, olive leaf extract) and was very careful not to get too hot or stressed. Even then , I still get it every 3-4 months, but fluconazole seems to get it under control now.

Oops - I forgot grapefruit seed extract and Caprylic acid (the anti fungal but of coconut oil).

Hi suki I too started with thrush and keep getting it back. I came off nortryptoline for all of 26 days and all my symptoms returned exactly the same. Flucanazole seems to help for ten days then it's pain city again . It's very interesting how it started for others I think thrush is a connector. I've to try 6 months more and then reduce tablets to one again very scary as pain is unimaginable and can't function like you I just want a normal life.

What are you doing about preventing thrush? As you can see, I have tried lots of "natural" preventatives in the hope it will not return. As I said I no longer have the persistent thrush (just get it every 4 months or so) and fluconazole now seems to do the job. The dermatology consultant I saw for my vulvodynia said that she found in cases like mine that 100mg of fluconazole for 7 days gets rid of it properly. The problem is that sometimes the fluconazole doesn't do the job properly and there is still a little bit of thrush hanging around in nooks and crannies which can then easily flare up again. The usual dose is the 150mg single dose or the GP may prescribe 50mg for 7 or 14 days in stubborn cases, but that clearly wasn't working for me. The 100mg per day seems to work and the GP will now prescribe that for me as the consultant wrote a letter. The last time I had thrush was in mid October, so I am keeping my fingers crossed that everything I am doing (anti thrush supplements, coconut oil, no washing down there just cleaning with coconut oil, no sugar or yeast diet, no knickers when at home) keep it at bay! The problem is, with vaginal dryness, intercourse can cause a bit of damage and trauma in the vagina can encourage thrush - I just use loads of oil based lube!

I am scared to come off the amitriptylene ☹️

Hi suki I am terrified to come off nortryptoline the 26 days were a living nightmare and you just can't function. The pain is constant and that wears you down you understand as you've had it. I can't get a doctor to prescribe flucanazole on a regular basis they don't believe it's thrush!!! I too take garlic cinnamon etc no bath stuff just water and no sugar. It's like a tightrope what do you balance today to stay ok. It's so nice to be able to talk to someone else who understands. Sometimes you just need to talk it gets you through a bad flare up.

Ive had similar problems with thrush and have been using garlic supplements and coconut oil for their antibacterial and antifungal properties plus other recommended treatments. I just turned a corner regarding thrush after treating myself with 3 doses of fluconazole quite close together after my last bout. As I got fed up going to the dr to have the test only to say I have thrush and found the tablet worked best. My specialist also recommended the 7 days treatment you mentioned if it continued as its resistant thrush.

I also take Nortriptyline for the vulva pain which is such a relief I can almost forget about the discomfort and have managed to wear jeans once a week! But I did have to come off to see if my VA symptoms were linked to the pain which they are not as it returned slowly over 10 days and I was on my way back to square one. So im now on it longterm which is a relief. I understand your apprehension to come off Amytripyline but it maybe worth trialing it just to check if things have improved or maybe you could use a lower dose? Although I do find the benefits of a good night's sleep are an added bonus and I would miss that alone.

Hi Tracy how lucky you are to wear jeans even once a week. I can't do trousers at all. What dose nortryptoline are you in and did you come off altogether I dropped to one tablet and still got the symptoms back. Which was odd as when I started one tablet worked quite well. I'm worried they won't be as efficient the longer I stay on them.

I do feel lucky I wore jeans everyday beforehand. Im now a skirt & dress women which I never have been being a bit of a athletic build but its much more ladylike :-).

Im only on 10mg which is working well I just have nerve pain at the front of the vulva around the clitoral hood. And a stabbing pain in the urethra any pressure was painful but I am very sensitive to medications probably why a low dose works. I did wonder if over time you need to increase your dose as your body gets used to it. As you say a lower dose was OK once. I know someone who takes Amytripyline for similar problems and hers has increased with time.

Hi Suki girl, Yes probably urinary incontinence is a symptom of the menopause. Though thankfully so far, I've managed to not wet myself. Like I said, I don't have to be bursting to feel the rush to get my pants down. And I only feel that rush once I get to the bathroom so its not like I'm in town or anywhere and am desperate for the ladies or anything. But I can't understand why I only get the feeling to rush once I'm in the bathroom.

Sorry you had accidents but glad to hear they've only been at home so far. Perhaps I should do pelvic floor exercises too before my problem gets worse too. I understand you going to the ladies at every opportunity when you are out and about. None of this is easy is it.

I think that is the way with this urgency incontinence - as soon as you think "hum, I need a wee" it just comes. That is the trigger for me, I suddenly find I really need to wee and as soon as I think that I will go to the loo, the wee starts coming! You trigger seems to be going into the bathroom.

Hi Tracy and Liz. I must admit, I do get a really good nights sleep these days! I used to be such a light sleeper. I am on 50mg Amitriptyline. I was on 20mg but still experiencing pain and my dermatology consultant said she wanted me to be on 50-75mg. I seem to have adapted well to it and have no side effects other than being a bit constipated, but even that has been a benefit because I had milk intolerance (caused terrible diarrhoea) but now I am fine with small amounts. My consultant told me that the body does get used to it in terms of becoming more tolerant to the side effects, but the effectiveness in combatting the pain doesn't decease. I know that people can stay on Amitriptyline for the rest of their lives if they have chronic pain so I am not unduly worried about continuing on it, but I do wonder if I could drop to a slightly lower level e.g. 40mg.

One thing I am concerned about with weening myself off amytriptyline, in addition to the pain returning, is the sleep thing - I have read that when people come off Amitriptyline they get insomnia. I cannot bear the thought of the pain returning AND not being able to sleep - that was how I was for months during 2013, the burning pain was so severe I couldn't sleep and all I felt like doing all day was laying in bed - I hardly did any work and I struggled to look after my young kids (then age 8 and 10 - I had kids late in life).

You do sound quite similar too myself as I can hear a pin drop in my sleep and never felt rested. Now I have a very sound sleep and feel rented after. So I can understand your concern there especially with young children when patience is paramount. Pain and lack of sleep will certainly push you to your limits. There is no harm you reducing your dose to trial that then if you feel the symptoms return you can at least tell the Dr you tried already. I did this with Hrt and documented the date and effects and the Dr was happy with that when he suggested reduction.

BTW I suddenly developed milk intolerance out of the blue I only drink Soya now. I wondered if the menopause had anything to do with it. As a couple of ladies I know have suddenly developed food intolerances.

Hi suki and Tracey

It's interesting to know what level of meds we all use. I'm on 20mg and my side effect is constipation which is manageable never knew how much I could get to like prunes!! I too worry that the dose will have to increase as time goes on. Weird feeling coming down to one tablet your head actually feels lighter so they definitely suppress the nerve in the brain that send signals of pain. Shame they can't just tell it to stop. When I went back on two it took a long time to really work again. From January to now. I get soreness at the vagina and sensitivity at the vulva so no trousers at all only gym soft ones. Plus tights with the gusset cut out seems to work best. I also have physical therapy to release the tension down below. Tried acupuncture only felt it worked once and that was with a pain specialist and you just can't book them. I think the medical profession are letting us down very badly.

Hi it is interesting and good to be able to compare symptoms as we all vary so much. Luckily my VA is being managed better now and this means im more comfortable its more the vulva pain which the dr did think was VA related but once I stopped taking Nortriptyline it came back. It may well subside over time as I heal. I never thought of cutting the gusset out of tights thanks for that. Ive been wearing stockings which my bf loves you may well of spoilt it for him lol! Loose cut bf jeans for a few hours is OK but I tend to change to jogging bottoms once home. Have you got VA as well? Are you saying that 20mg hasn't cured your pain?

Hi Tracy I thought I had VA but once I took nortryptoline no more like sitting on a prickly hedgehog feeling or inside of me sore anymore. My two tablets hold it and I really don't want to take three. Sorry to spoil the stocking for your bf I did stockings until I worked out cutting the gusset out much warmer.

At least you have found something that works for you. Hopefully you won't need to increase the dose. It is a bit chilly so tights is better I agree :-D

Yes I see what you mean Suki. It seems to be the case for me too. Although interestingly the urge isn't there all the time, not as described above I mean. That comes and goes, as does the urge to wee all the time, then I just do a trickle. On the days I want to wee all the time, there is no rush to take my pants down when I get to the bathroom. So the symptoms re weeing vary for me. I can't understand it. Going to sort myself out now. I'm so sore I could cry my eyes out but don't want to do that with my daughter in the house.