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.
I have been suffering from Vulvodynia for 4 years. It gets worse when I sit. I have been to many doctors and taken many medications and done physical therapy and nothing really works. Sitting makes it worse. The pain is similar to diabetic pain but in my vulva and vagina. The pain I have is a burning pain in my vulva and opening to my vagina. I started taking lyrica and it seemed to help a little but the lyrica doesn’t work if I am not careful how I sit down. I even sit on a doughnut to make me not hurt as much. I just had shoulder surgery and was put on a pain medication which also helps my Vulvodynia. No doctor will prescribe pain medication such as oxycodone-acetaminophen for Vulvodynia.
Has any one had experience in chronic pain in your vulva and vagina. This first start d when I would sit and now I have the pain all the time. Do you know a doctor, medication or anything that helps.
I have been suffering from Vulvodynia for 4 years. It gets worse when I sit. I have been to many doctors and taken many medications and done physical therapy and nothing really works. Sitting makes it worse. The pain is similar to diabetic pain but in my vulva and vagina. The pain I have is a burning pain in my vulva and opening to my vagina. I started taking lyrica and it seemed to help a little but the lyrica doesn’t work if I am not careful how I sit down. I even sit on a doughnut to make me not hurt as much. I just had shoulder surgery and was put on a pain medication which also helps my Vulvodynia. No doctor will prescribe pain medication such as oxycodone-acetaminophen for Vulvodynia.
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.
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.
For women who have vulvodynia, you might see a dermatologist along with a gynaecologist. Really this is a skin condition. Ask about lichen sclerosis or other types of skin problems. Not every problem in the vulva is a gynecological one.
I have used Lyrica (pregabalin) maximum dose 300 mg, amitriptyline 30 mg per day and Tara-clobetsol ointment twice weekly for 2 weeks then nothing for a week and resume twice weekly etc. Be careful of cream formulations as they don’t stay on as long and can have reactions based on the formulation of the cream.
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.
I have burning in my vulva all the time. I have been to many doctors and I had 12 hours of relief from a Pudendal Nerve injection in a hospital setting where they hit the correct place. I have had other Pudendal nerve injections which did not work. I am taking lyrica and it is helping 10%. My Gyn is working with a nerve doctor to figure out what may help.
For women who have vulvodynia, you might see a dermatologist along with a gynaecologist. Really this is a skin condition. Ask about lichen sclerosis or other types of skin problems. Not every problem in the vulva is a gynecological one.
I have used Lyrica (pregabalin) maximum dose 300 mg, amitriptyline 30 mg per day and Tara-clobetsol ointment twice weekly for 2 weeks then nothing for a week and resume twice weekly etc. Be careful of cream formulations as they don’t stay on as long and can have reactions based on the formulation of the cream.
I am taking 150 mg lyrica and it helps a little. I makes my head feel numb and not enjoy anything. I have been to the dermatologist who gave me gabspentin but it did not make me better. There is nothing that a person can see on my vulva to treat with a cream. At first I only had the pain when sitting. Now it hurts all the time. When I first get out of bed I feel better but once I start doing things the pain comes back.
I am taking 150 mg lyrica and it helps a little. I makes my head feel numb and not enjoy anything. I have been to the dermatologist who gave me gabspentin but it did not make me better. There is nothing that a person can see on my vulva to treat with a cream. At first I only had the pain when sitting. Now it hurts all the time. When I first get out of bed I feel better but once I start doing things the pain comes back.
When I went to the head of dermatology at the Civic hospital in Ottawa Ontario for the problem with my vulva the first thing she asked me was whether there was any asthma in my family, and I thought she is not talking about the right part of my body problem but I agreed there was asthma in my family. The second question was whether there was any eczema in my family, and again I agreed there was. Third question was whether I had ever had any surgery on the vulva and I agreed that there was because some parts of the labia had sort of grown together and had to be stitched back. Then she examined me and told me that I had a condition callled Lichen Sclerosis that was causing the pain in my vulva.It is an autoimmune disease that is most likely inherited. She told me it was incurable but medication could help. We tried lower doses of Lyrica but they were not sufficient. Seems only the higher dose worked for me. Also, if I try to lower the dose the pain comes back. Maybe you should try that along with the amitriptlyine and clobetasol. I know how miserable it is to have pain in the vulva. Is also tough on the married life! I used to be so exhausted from suffering the pain all day that by the time I got into bed I just fell asleep with the pain. Now I have another chronic condition related to my ears that is also incurable (tinnitus) only this time there is absolutely nothing that has been developed to cure it or even reduce it in intensity. I do hope that things improve for you. Please let me know how things are going.
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 10 doctors and had 2 procedures which did not work. There was only a 40% chance they would work. My GYN is sending me to a pain specialists. At this point it appears it is not going away so now he is taking a different approach.
@lizziemnz Your symptoms sound like they are impacting your sleep. I'm sure you are looking forward to your upcoming appointment with the gynecologists.
You will notice that I moved your question to a previous discussion on this topic. I did so there was a central location for members to connect.
I guess he is trying to manage my symptoms by suggesting certain procedures which I have had and prescribing medications. At this point he has referred me to Emory Pain clinic since nothing has worked.
When I went to the head of dermatology at the Civic hospital in Ottawa Ontario for the problem with my vulva the first thing she asked me was whether there was any asthma in my family, and I thought she is not talking about the right part of my body problem but I agreed there was asthma in my family. The second question was whether there was any eczema in my family, and again I agreed there was. Third question was whether I had ever had any surgery on the vulva and I agreed that there was because some parts of the labia had sort of grown together and had to be stitched back. Then she examined me and told me that I had a condition callled Lichen Sclerosis that was causing the pain in my vulva.It is an autoimmune disease that is most likely inherited. She told me it was incurable but medication could help. We tried lower doses of Lyrica but they were not sufficient. Seems only the higher dose worked for me. Also, if I try to lower the dose the pain comes back. Maybe you should try that along with the amitriptlyine and clobetasol. I know how miserable it is to have pain in the vulva. Is also tough on the married life! I used to be so exhausted from suffering the pain all day that by the time I got into bed I just fell asleep with the pain. Now I have another chronic condition related to my ears that is also incurable (tinnitus) only this time there is absolutely nothing that has been developed to cure it or even reduce it in intensity. I do hope that things improve for you. Please let me know how things are going.
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
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I have been suffering from Vulvodynia for 4 years. It gets worse when I sit. I have been to many doctors and taken many medications and done physical therapy and nothing really works. Sitting makes it worse. The pain is similar to diabetic pain but in my vulva and vagina. The pain I have is a burning pain in my vulva and opening to my vagina. I started taking lyrica and it seemed to help a little but the lyrica doesn’t work if I am not careful how I sit down. I even sit on a doughnut to make me not hurt as much. I just had shoulder surgery and was put on a pain medication which also helps my Vulvodynia. No doctor will prescribe pain medication such as oxycodone-acetaminophen for Vulvodynia.
Has any one had experience in chronic pain in your vulva and vagina. This first start d when I would sit and now I have the pain all the time. Do you know a doctor, medication or anything that helps.
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 was able to find an existing discussion on this topic so you will notice I have moved your post here: https://connect.mayoclinic.org/discussion/vulvodynia/
Members such as @gardeningjunkie @gingerly @lizziemnz and @ronnie3716 have all previously shared in this discussion and may be able to come back to provide you with some needed support.
In the meantime, I'd like to share the following resource that may be of interest.
- Volvodynia: Diagnosis and Treatment: https://www.mayoclinic.org/diseases-conditions/vulvodynia/diagnosis-treatment/drc-20353427
Have you sought a second opinion for care, by chance?
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1 ReactionFor women who have vulvodynia, you might see a dermatologist along with a gynaecologist. Really this is a skin condition. Ask about lichen sclerosis or other types of skin problems. Not every problem in the vulva is a gynecological one.
I have used Lyrica (pregabalin) maximum dose 300 mg, amitriptyline 30 mg per day and Tara-clobetsol ointment twice weekly for 2 weeks then nothing for a week and resume twice weekly etc. Be careful of cream formulations as they don’t stay on as long and can have reactions based on the formulation of the cream.
-
Like -
Helpful -
Hug
1 ReactionI have burning in my vulva all the time. I have been to many doctors and I had 12 hours of relief from a Pudendal Nerve injection in a hospital setting where they hit the correct place. I have had other Pudendal nerve injections which did not work. I am taking lyrica and it is helping 10%. My Gyn is working with a nerve doctor to figure out what may help.
-
Like -
Helpful -
Hug
1 ReactionI am taking 150 mg lyrica and it helps a little. I makes my head feel numb and not enjoy anything. I have been to the dermatologist who gave me gabspentin but it did not make me better. There is nothing that a person can see on my vulva to treat with a cream. At first I only had the pain when sitting. Now it hurts all the time. When I first get out of bed I feel better but once I start doing things the pain comes back.
-
Like -
Helpful -
Hug
1 ReactionWhen I went to the head of dermatology at the Civic hospital in Ottawa Ontario for the problem with my vulva the first thing she asked me was whether there was any asthma in my family, and I thought she is not talking about the right part of my body problem but I agreed there was asthma in my family. The second question was whether there was any eczema in my family, and again I agreed there was. Third question was whether I had ever had any surgery on the vulva and I agreed that there was because some parts of the labia had sort of grown together and had to be stitched back. Then she examined me and told me that I had a condition callled Lichen Sclerosis that was causing the pain in my vulva.It is an autoimmune disease that is most likely inherited. She told me it was incurable but medication could help. We tried lower doses of Lyrica but they were not sufficient. Seems only the higher dose worked for me. Also, if I try to lower the dose the pain comes back. Maybe you should try that along with the amitriptlyine and clobetasol. I know how miserable it is to have pain in the vulva. Is also tough on the married life! I used to be so exhausted from suffering the pain all day that by the time I got into bed I just fell asleep with the pain. Now I have another chronic condition related to my ears that is also incurable (tinnitus) only this time there is absolutely nothing that has been developed to cure it or even reduce it in intensity. I do hope that things improve for you. Please let me know how things are going.
-
Like -
Helpful -
Hug
1 ReactionI have been to 10 doctors and had 2 procedures which did not work. There was only a 40% chance they would work. My GYN is sending me to a pain specialists. At this point it appears it is not going away so now he is taking a different approach.
-
Like -
Helpful -
Hug
1 ReactionI guess he is trying to manage my symptoms by suggesting certain procedures which I have had and prescribing medications. At this point he has referred me to Emory Pain clinic since nothing has worked.
-
Like -
Helpful -
Hug
1 ReactionI 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
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Like -
Helpful -
Hug
1 Reaction