Hello again, I've been in really agonising pain for 12 weeks now. At first I thought it was an infected tear so was prescribed Amoxycillin which did help with the soreness of the skin, but it was the dreadful aching all over the vulva area that just continued.Three visits to dermatologist during that time and I eventually ended up in A&E I was in so much pain I could barely walk.I was examined thoroughly by a Gynaecologist Registrar The upshot of that A&E visit and the 3 Dermatologist visits resulted in them deciding it was Vulvodynia, and I've been prescribed 15mg Amytriptiline and to gradually introduce 300mg Gabapentin daily. Co-codamol 4times daily and Oramorph when needed. Presently I'm up to 200mg Gabapentin and 15 mg Amytriptiline but it doesn't seem to help much yet. Does anyone know how long it can take to help with the pain? I've been on 10 mg Amytriptiline for 16years and it's always helped but not this time. I'm at the end of my tether and spending most of the time in the house because it's so agonising and really difficult to walk about. Does anyone have any ideas how long these medications can take to kick-in? Please help, really desperate now.
Hi Yvonne
So sorry to hear about this, hopefully the treatment your on will kick in soon and give you some relief, can't believe you had to go umpteen times before getting diagnosed, do you think the lichen planus caused this ?
I'm still the same Yvonne scratching everywhere and sore mouth it's a terrible disease x. Hugs Karen
Hi Yvonne, I know your pain...I've had this a couple of times in the past. I did find that zinc oxide cream helped me some. So if you have some handy you might want to try it and see if it helps at all. Certainly won't hurt you. Also, you might consider Manuka honey. Be certain to purchase a good grade. It has been medically proven and accepted by medical professionals as an excellent healing salve. It's a bit pricey...but a small jar lasts a long time as you just use a pea size amount and rub it in at night before bed. I scoop a little out with a clean cotton swab. It also is a great wound healer...so if you get a tear or fissure...is great for that as well. Good luck...hope you are better soon.
Doe a warm bath help to relax you?
or perhaps a warm hot water bottle to the area - or maybe an ice pack covered witha cloth so it isnt too cold, sometimes alternating the warm and the cold can help
Have you seem the device called a vagi wave i noticed that someone withthe condition mentioned - if you look it up you may find it of help
It sound horrible for you I really sympathise. Some people find mindful meditation helps their pain a great deat so may be that could help too
With the co codamol and the oramorph do take stool softeners and drink A LOT of water - try and eat high fibre veg - cabbage / colslaw and the like, broccoli is good too, you will find the medications can "bind" you up , and constipation is THE LAST thing you need just nnow!
Good Luck
Sue
Hi Yvonne, gosh I'm sorry to hear that your in such pain. What initially triggered the pain or did it start randomly? I'm assuming you have LS?
I've been treating my LS since January and despite some itching (not sure why I've developed this as I'm using a steroid. I never had the itching) I am in pain too. The pain is like a deep pain in the vulva, not really superficial as in I don't think it's coming from the skin itself. I'd describe the pain as stinging, burning and aching.
Is the pain constant or does it wax and wane? Does it feel better at certain times of the day? I also spend most of the time in the house as walking and being out and about for long periods of time exacerbates the problem. It's miserable. Hopefully the medications start helping. These things usually take some time.
I'm going to see my doctor next week and will have to run this past her as I'm also pretty fed up.
Hi ladies
All us ladies are having a pretty bad time with these issues just not fair men get away with murder, I suffer to I thought after having treatment over 10 years ago for abnormal cervical cells was the end of it but obviously not, I'm now going through a divorce
because of this he's gone off with someone else I'm in so much stress lately which isn't helping
Hi Karen
Your divorce must be awful for you on top of everything else. Sex isn't the be all and end all for women but it appears to be for men. Try not to get too stressed and remember that everything happens for a purpose!
Thankyou carmarie
I am definitely not interested now in another man I'm 57 and wouldn't trust the best of them Iv been married 20 years he's lead a double life for the last three it's all the lies and deceit, do you suffer with this awful disease
Hello Ladies, thank you SO much for your quick replies, it really helps to know I'm not alone in all this. It certainly is REALLY difficult to deal with you are all so right! Thankfully my husband and family are understanding and particularly my husband of course, I realise how lucky I am and I focus on that thought to get through. Thank you for all your tips and support. Fortunately the dermatologists I visited all said that the LS was acquiescent and the tear healed. They think the pain is caused by trauma damage to the nerve endings of the vulva, maybe a combination of an accident I had as a child and a long labour with a 9lb 15 baby. Although she was born...43 years ago now!
Once again, I'm so grateful that you all replied! It makes me feel much less alone, and just to know someone else actually understands how difficult each day is with this rotton thing.
Hugs everyone.
Me again Ladies, sorry just realised I didn't answer the questions. I think I've permantently got a hot water bottle stapped to me 'Sue', but I will try that alternating hot and cold and see if that does anything. And I will look into the vagi wave....ha ha! sounds fun....;( not!
And warm baths do help 'renee', just wish it would last when we get out. Thanks for reminding me about brocolli etc, I've just said to my husband I'll make some home-made coleslaw as well. I'm drinking pints, water, cranberry, prune juice, peppermint tea, camomile and spearmint tea, and I find Linwoods - Flaxseed, almonds, brazil nuts, walnuts & co-enzyme Q10 with my breakfast cereal and loads of fruit during the day helps with the constipation, oh and plain pop-corn.
I agree with you 'danni', as you mentioned the pain does seem more deep-seated within the vulva, not just at skin level. The pain does wax and wane, though never actually goes altogether, I agree, going outside where lets face we do walk differently than we do around our own home, does aggravate the pain. The pain's hellish! When I went to A&E I couldn't sit still at all, I felt I had to keep moving, I just couldn't get comfortable any which way.
'karen' your divorce and the consequent stress must be aggravating all the problem, oh! I do sympathise with you. Having had similar happen to me long ago now thankfully, I can still remember all the difficulty and stress it puts on you. I do hope things settle down soon for you.
Kindest regards Ladies, thank you for chatting, it definitely helps.
The aching deep pain does subside after awhile...it is like you have suffered some sort of trauma...like riding a man's bike and slipping and hitting the crossbar...and getting a deep ache. I've had it more than once and do have a bit of it now. I believe it can also be a result of some of the cream or ointment type medications...as I believe you can have a sensitivity to them after using them for awhile as they do soak into the skin layers. I have just a touch of the ache now so have backed off using my traditional methodspure and am going with just the pure coconut oil for a bit to see if it subsides. Certainly don't want it to flare up again as I now how awful it is from past experience.
Hello renee,
Oh thank you for that! I didn't know about that one at all. At least it gives me help in that it might not be forever. After so long I was beginning to think there might be no light at the end of the tunnel. It's such a nasty thing to deal with isn't it? Have you ever had to take Gabapentin and Amytriptiline?
Hi Yvonne. So sorry to hear that you are going through such pain. I sometimes try a hot water bottle when the pain gets so severe across my lower abdomen and up where fallopian tubes are supposed to be. (mine's gone with hysterectomy so not sure why so painful). Perhaps a small hot water bottle would help you too. Other than that... have a cuppa T and know that we are all sharing it with you in the spirit and giving you lots of love and hugs!!! This too shall pass!!
Hi Karen
So sorry to hear about divorce, but you know what.... if this is what he does then it definitely is not worth stressing over. Things happen for a reason and eventually you will be much better off. Try to concentrate only on your health and getting the LS/LP under control. Main priority now. Much love and hugs. xoxo
Thankyou cuppa T I know you are right Xx
Hi Cuppa T,
What a lovely comment that you posted, thank you SO much it made me smile and I definitely feel all those hugs!! Right....I'm off to fill my hottie bottle right now and make a cuppa T!!! )
Hugs and love back.
I don't recall what I used...but remember that it didn't help much. It finally just resolved on it's own. Just do whatever makes you most comfortable. I remember that being off my feet seemed to help.
I went through a bad divorce...cheating...abusive...I finally realized I was so much more that what he was making me believe of myself. Do what makes you happy. Possibly this is a time for you to pursue a vacation you have always wanted to take...or a hobby. It's time to just take care of you. Give yourself a big hug...you are worth being loved. Keep good friends around you...find a little joy in every day.
Just to clear something up men also suffer this condition. I feel sorry for anyone who doesn't have an understanding partner when this problem rears it's ugly head. You do not need to be with someone who makes you feel uncomfortable about an illness that is definately not your fault. I agree time to take care of yourself and definately do something for yourself not others. Look for the good in people, there are men out there who want a companion rather than a sex partner. Don't cross them all off your list Karen or Renee. Just give yourself the hug and yes we are definately all worth more than being made to feel bad for having this condition. I believe in Karma and given time I am sure your ex's will pay for their poor treatment of you both. I divorced uncaring men twice and now have a great marriage. No sex but the greatest friend you could wish to have. I also believe that good friends are important and yes look for the joy in life and the little things will make your life much happier. Happy days are ahead I'm sure.
Thankyou chrissy
You are right I would be lost without my family and friends and I love chatting on here to you girls I don't feel so alone then,
I am in court next Friday about the financial stuff I really don't want to look at his slimey cheating face, my youngest daughter is coming with me he hasn't seen her since he left but she has got no time for him now she hates him after all his deceit.
Lovely to hear from you again Chrissy keeps me going, hope you are well, this hot weather is driving me nuts constantly sweating how are you with the heat.
Take care speak soon Xx