Hello @francesmharris123 and welcome to Mayo Clinic Connect. I am sorry to hear you are going through this. It is great you've reached out to connect with others who may understand what you are going through.
I have been to at least 8 doctors and my dermatologist treats Vulvodynia and she gave me gabapentin but probably not a high enough dose. Recently I started taking lyrica which is similar and it seems to work a little. The doctor is being careful not to raise the dose too fast because I get dizzy and my head gets numb.
I tried amitriptyline but it made me feel very drugged so I was taken off of it. I would have to say no to the 3 questions you were asked. I am on 75 mg of Lyrica in the morning and the doctor increased me to 100mg before bed. It helps a little. Because it makes me a little dizzy and my head numb and foggy she is being careful about increasing the dose. I will look up lichen sclerosis and clobetasol. Thanks for your reply
People react differently to medication. I know what you mean about side effects and how they make you feel. Sometimes it’s scary. Everyone has to decide for themselves what is acceptable or not. In my case I really didn’t’t care about any side effects. I just wanted relief from the pain. It was worse than any side effects.
As it is now I am suffering from a bout of discomfort. I get them a couple of times a year. They last a week or two, this in spite of any of the medication. It seems that an abrupt change of temperature was the culprit. That is why I can’t go swimming. Well, there are worse things in life than not being able to swim with the family. That said, I have found that side effects wear off in my case, if I persist with the medication. Good luck to you, I hope you find a solution to your problem.
I am staying on the lyrica even though I don’t like the side affects. Maybe I will get to a high enough dose where it works better. The dizzyness does away after I stand for a while. The side affects from amitripyline we’re so intense my psychiatrist told me to stop taking it. Before 4 years ago I was very active and only got a cold or a 24 hour virus. I am 72 and am not use to having physical problems.
People react differently to medication. I know what you mean about side effects and how they make you feel. Sometimes it’s scary. Everyone has to decide for themselves what is acceptable or not. In my case I really didn’t’t care about any side effects. I just wanted relief from the pain. It was worse than any side effects.
As it is now I am suffering from a bout of discomfort. I get them a couple of times a year. They last a week or two, this in spite of any of the medication. It seems that an abrupt change of temperature was the culprit. That is why I can’t go swimming. Well, there are worse things in life than not being able to swim with the family. That said, I have found that side effects wear off in my case, if I persist with the medication. Good luck to you, I hope you find a solution to your problem.
Has anybody suffered from vulvodynia? I have extreme discomfort (burning and tingling in the vulva) which has been diagnosed by my GP. Apparently that is the diagnosis when there is no other condition to explain the symptoms. He has referred me to a gynaecologist, appointment next week. Strangely I only get these symptoms at night but it is driving me crazy as I can’t sleep. I would be grateful to hear of anybody else’s experience.
Hi I am experiencing pelvic pain. I have been to so many Doctors. Still have many more to see. The only thing that has helped so far was a Pelvic floor Specialist. I have extreme burning. This has been going on now for over a year. I just wish someone could tell me why.
Hi I am experiencing pelvic pain. I have been to so many Doctors. Still have many more to see. The only thing that has helped so far was a Pelvic floor Specialist. I have extreme burning. This has been going on now for over a year. I just wish someone could tell me why.
Hello @francesmharris123 and welcome to Mayo Clinic Connect. I am sorry to hear you are going through this. It is great you've reached out to connect with others who may understand what you are going through.
I have been to at least 9 to 10 doctors. The pain is there all the time. The pain gets worse as the day progresses. When I first wake up the pain is at a low level. When I start doing normal things the pain gets worse especially when I sit. Once it starts it gets worse. I wish I could sleep most of the time. By this time of the night the
Burning is the worst. It is 11:00 pm so thank goodness I will fall asleep soon. I have had Botox injections, Pudendal nerve Cyroablation, and many medications. I am taking 150mg of Lyrica/day. It helps a little. I can’t believe no one knows how to stop the pain from Vulvodynia. I don’t look forward to anything any more. I wish I could stay asleep until I die. I have been very healthy all my life until I turned 68 four years ago.
Many women have this problem. It can be a skin condition, for example lichen sclerosis, or other skin problem resulting from allergies or a prescribed or OTC medication that wasn’t good for you. It may not be a gynecological problem. Have you seen a dermatologist? I saw several but wasn’t’t diagnosed until I was seen by the head of dermatology at a major hospital. It matters who you see in terms of doctors. In the end I was prescribed the correct treatment and now I am pain free. Can you provide more details about your case ? When did it start and where have you gone for assistance?
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I have been to at least 8 doctors and my dermatologist treats Vulvodynia and she gave me gabapentin but probably not a high enough dose. Recently I started taking lyrica which is similar and it seems to work a little. The doctor is being careful not to raise the dose too fast because I get dizzy and my head gets numb.
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Like -
Helpful -
Hug
1 ReactionPeople react differently to medication. I know what you mean about side effects and how they make you feel. Sometimes it’s scary. Everyone has to decide for themselves what is acceptable or not. In my case I really didn’t’t care about any side effects. I just wanted relief from the pain. It was worse than any side effects.
As it is now I am suffering from a bout of discomfort. I get them a couple of times a year. They last a week or two, this in spite of any of the medication. It seems that an abrupt change of temperature was the culprit. That is why I can’t go swimming. Well, there are worse things in life than not being able to swim with the family. That said, I have found that side effects wear off in my case, if I persist with the medication. Good luck to you, I hope you find a solution to your problem.
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Like -
Helpful -
Hug
1 ReactionI am staying on the lyrica even though I don’t like the side affects. Maybe I will get to a high enough dose where it works better. The dizzyness does away after I stand for a while. The side affects from amitripyline we’re so intense my psychiatrist told me to stop taking it. Before 4 years ago I was very active and only got a cold or a 24 hour virus. I am 72 and am not use to having physical problems.
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Hug
1 ReactionOk I have received your message on many days in my inbox. Thank you for
your comment.
Hi I am experiencing pelvic pain. I have been to so many Doctors. Still have many more to see. The only thing that has helped so far was a Pelvic floor Specialist. I have extreme burning. This has been going on now for over a year. I just wish someone could tell me why.
Thanks for replying. I have considered a pelvic floor specialist, good to know that they can help.
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1 ReactionI have been to at least 9 to 10 doctors. The pain is there all the time. The pain gets worse as the day progresses. When I first wake up the pain is at a low level. When I start doing normal things the pain gets worse especially when I sit. Once it starts it gets worse. I wish I could sleep most of the time. By this time of the night the
Burning is the worst. It is 11:00 pm so thank goodness I will fall asleep soon. I have had Botox injections, Pudendal nerve Cyroablation, and many medications. I am taking 150mg of Lyrica/day. It helps a little. I can’t believe no one knows how to stop the pain from Vulvodynia. I don’t look forward to anything any more. I wish I could stay asleep until I die. I have been very healthy all my life until I turned 68 four years ago.
Has anyone had Vulvodynia which is pain in the vulva.
Many women have this problem. It can be a skin condition, for example lichen sclerosis, or other skin problem resulting from allergies or a prescribed or OTC medication that wasn’t good for you. It may not be a gynecological problem. Have you seen a dermatologist? I saw several but wasn’t’t diagnosed until I was seen by the head of dermatology at a major hospital. It matters who you see in terms of doctors. In the end I was prescribed the correct treatment and now I am pain free. Can you provide more details about your case ? When did it start and where have you gone for assistance?
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Like -
Helpful -
Hug
1 ReactionYes it’s very painful. The trick is finding a dr. Who knows how to treat it.