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?
I started 4 years ago. I have done physical therapy, took gabapentin from dermatitis to, took many botoxinjections , used Valium suppositories, estrogen Supository, used Premarin
Cream, coconut oil, lidocaine gel, Lyrica I had Cyroablation of my Pudendal nerve and many Pudendal nerve injection and after one by a doctor in a hospital setting which took away the pain for 12 hours so he would not give me a series because the effect didn’t last long enough. I have taken yeast infection medication and antibiotics. I am about to give up. My GYN just sent me to a Emory pain clinic. They can do a trial to see if it works. I will probably do that since I don’t know what to do. Maybe all the stress living with a mean husband for 42 years caused it. I have done many spin classes which may have caused it. Do you have any suggestions?
You will notice that I have moved your post into an existing discussion on the topic of Vulvodynia that you had previously posted in as well to keep this discussion going.
I started 4 years ago. I have done physical therapy, took gabapentin from dermatitis to, took many botoxinjections , used Valium suppositories, estrogen Supository, used Premarin
Cream, coconut oil, lidocaine gel, Lyrica I had Cyroablation of my Pudendal nerve and many Pudendal nerve injection and after one by a doctor in a hospital setting which took away the pain for 12 hours so he would not give me a series because the effect didn’t last long enough. I have taken yeast infection medication and antibiotics. I am about to give up. My GYN just sent me to a Emory pain clinic. They can do a trial to see if it works. I will probably do that since I don’t know what to do. Maybe all the stress living with a mean husband for 42 years caused it. I have done many spin classes which may have caused it. Do you have any suggestions?
You seemed to have pursued many avenues to achieve relief. I sympathize and know how this affects your life. My husband was very understanding and supportive, so it must make things a lot worse if your husband can’t imagine your pain and be supportive. In my case it might help to know that my vulvodynia began with an antibiotic cream that was prescribed. I was allergic to it and it burned me. This injury caused damage to the nerves. Following that my immune system kicked in to further complicate things and I ended up with lichen sclerosis an incurable condition that is now under control. I take the maximum allowable dose of pregabalin, that’s Lyrica I believe, and 3 to 4 10mg. Pills of amitriptyline. If I feel a flare up ai apply clobetasol ointment only twice a week for 2 or 3 weeks then stop for one week and use only petroleum jelly. I don’t suffer from anxiety or stress very much with exception of suffering from constant ringing in the ears for which there is no cure and little relief. I don’t have any further suggestions for you except maybe to give all treatment involving application of stuff to your vulva except for petroleum jelly for awhile and then begin the clobetasol ointment providing your doctor prescribes it. Have you seen a dermatologist? Lots of women automatically refer us to a gyno which is not where we need to be. I firmly believe that vulvodynia is not really a reproductive system problem, it’s a skin problem. Good luck to you finding some relief. Let me know how it goes, I feel for you.
I have not been treated by Mayo; there is none close to where I live. But...I have had this problem for almost 10 years and through my doctors and my own trial and error I have some suggestion that may help:
White cotton underwear only, no sprays or douches or whatever, wash with plain water and...And herbalist suggested using a small amount of eucalypts oil & tea tree oil to 8 oz plain water to rinse after using the bathroom. I use 6 drops or so of each. although I am not very exact, it doesn't really matter. Because of her advice I also started using one part of each of the above oils with two parts pure coconut oil to moisturize morning and evening and that has helped a lot! My last suggestion is just weird, but it really helps me and if I don't, I'm in trouble. Do NOT wear the same pants two days in a row. I always change underwear of course. but have found that changing my pants helps too. Actually, I have found the best luck if I actually wear clean pants each day! I don't have discharge or anything, but still, changing pants every day really helps! When in a flare up I try to not wear any underwear at all when I am at home and wear a dress, robe or whatever. Oh, the ONLY thing I have found for the pain is 5% Lidocaine ointment, not 4% cream or gel. The gel is useless because it burns me. The 5% ointment can be a problem with insurance, but I fight with them. I have told them if the president of this insurance company had this crawling around his penis it would be covered because the pain/irritation is so bad you can't sleep! And I got it. It can be expensive, but I don't care, it helps! Good luck!
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.
The answer to those 3 questions are all a ”yes” for me too. I had no idea about this. It’s been 20 years since my pain started and I still have not had any help. Are you still on Lyrica or have you found anything that works better?
Still using Lyrica and amitriptyline for nerve pain associated with LS. As well, using Clobetasol ointment for flare ups. Also using Vaseline in between times when it’s not a Clobetasol day. I have been on this regimen for many years with no problem. The pills I take every day, the ointment on,y for flare ups.
I started 4 years ago. I have done physical therapy, took gabapentin from dermatitis to, took many botoxinjections , used Valium suppositories, estrogen Supository, used Premarin
Cream, coconut oil, lidocaine gel, Lyrica I had Cyroablation of my Pudendal nerve and many Pudendal nerve injection and after one by a doctor in a hospital setting which took away the pain for 12 hours so he would not give me a series because the effect didn’t last long enough. I have taken yeast infection medication and antibiotics. I am about to give up. My GYN just sent me to a Emory pain clinic. They can do a trial to see if it works. I will probably do that since I don’t know what to do. Maybe all the stress living with a mean husband for 42 years caused it. I have done many spin classes which may have caused it. Do you have any suggestions?
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
@francesmharris123 - if it isn't too late to enter into this discussion, it sounds to me like Lichen sclerosus, which I have had for 40-some years.
If I may suggest you search for the Lichen sclerosus (LS) discussion topic, you will see some of my posts, along with others, and that the Clobetasol propionate 0.05% is the current treatment (NOT a cure - there still is none) for LS.
I won't go into my need for laser ablation this past Feb. to address it when it became pre-cancerous, but you can read more about it and others' experiences there. It IS an autoimmune condition with possible inherited aspects, but my gyne oncologist has patiently listened to my Qs and concerns with the procedure/s, and I now continue follow-ups, with biopsies if needed to check out areas of concern.
Do check out additional information on the nih.gov sites, and be informed.
Wishing you well, and even that it has been controlled by the time you read this.
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I started 4 years ago. I have done physical therapy, took gabapentin from dermatitis to, took many botoxinjections , used Valium suppositories, estrogen Supository, used Premarin
Cream, coconut oil, lidocaine gel, Lyrica I had Cyroablation of my Pudendal nerve and many Pudendal nerve injection and after one by a doctor in a hospital setting which took away the pain for 12 hours so he would not give me a series because the effect didn’t last long enough. I have taken yeast infection medication and antibiotics. I am about to give up. My GYN just sent me to a Emory pain clinic. They can do a trial to see if it works. I will probably do that since I don’t know what to do. Maybe all the stress living with a mean husband for 42 years caused it. I have done many spin classes which may have caused it. Do you have any suggestions?
Hello @francesmharris123. I see that members @willows and @nanny23 have joined you to share their experiences.
You will notice that I have moved your post into an existing discussion on the topic of Vulvodynia that you had previously posted in as well to keep this discussion going.
Here is a link to several of the treatment options at Mayo Clinic.
- Vulvodynia: https://www.mayoclinic.org/diseases-conditions/vulvodynia/diagnosis-treatment/drc-20353427
Have you exhausted them or do you feel you may be ready to explore care at a teaching facility such as Mayo?
You seemed to have pursued many avenues to achieve relief. I sympathize and know how this affects your life. My husband was very understanding and supportive, so it must make things a lot worse if your husband can’t imagine your pain and be supportive. In my case it might help to know that my vulvodynia began with an antibiotic cream that was prescribed. I was allergic to it and it burned me. This injury caused damage to the nerves. Following that my immune system kicked in to further complicate things and I ended up with lichen sclerosis an incurable condition that is now under control. I take the maximum allowable dose of pregabalin, that’s Lyrica I believe, and 3 to 4 10mg. Pills of amitriptyline. If I feel a flare up ai apply clobetasol ointment only twice a week for 2 or 3 weeks then stop for one week and use only petroleum jelly. I don’t suffer from anxiety or stress very much with exception of suffering from constant ringing in the ears for which there is no cure and little relief. I don’t have any further suggestions for you except maybe to give all treatment involving application of stuff to your vulva except for petroleum jelly for awhile and then begin the clobetasol ointment providing your doctor prescribes it. Have you seen a dermatologist? Lots of women automatically refer us to a gyno which is not where we need to be. I firmly believe that vulvodynia is not really a reproductive system problem, it’s a skin problem. Good luck to you finding some relief. Let me know how it goes, I feel for you.
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1 ReactionI have not been treated by Mayo; there is none close to where I live. But...I have had this problem for almost 10 years and through my doctors and my own trial and error I have some suggestion that may help:
White cotton underwear only, no sprays or douches or whatever, wash with plain water and...And herbalist suggested using a small amount of eucalypts oil & tea tree oil to 8 oz plain water to rinse after using the bathroom. I use 6 drops or so of each. although I am not very exact, it doesn't really matter. Because of her advice I also started using one part of each of the above oils with two parts pure coconut oil to moisturize morning and evening and that has helped a lot! My last suggestion is just weird, but it really helps me and if I don't, I'm in trouble. Do NOT wear the same pants two days in a row. I always change underwear of course. but have found that changing my pants helps too. Actually, I have found the best luck if I actually wear clean pants each day! I don't have discharge or anything, but still, changing pants every day really helps! When in a flare up I try to not wear any underwear at all when I am at home and wear a dress, robe or whatever. Oh, the ONLY thing I have found for the pain is 5% Lidocaine ointment, not 4% cream or gel. The gel is useless because it burns me. The 5% ointment can be a problem with insurance, but I fight with them. I have told them if the president of this insurance company had this crawling around his penis it would be covered because the pain/irritation is so bad you can't sleep! And I got it. It can be expensive, but I don't care, it helps! Good luck!
-
Like -
Helpful -
Hug
1 ReactionThe answer to those 3 questions are all a ”yes” for me too. I had no idea about this. It’s been 20 years since my pain started and I still have not had any help. Are you still on Lyrica or have you found anything that works better?
Still using Lyrica and amitriptyline for nerve pain associated with LS. As well, using Clobetasol ointment for flare ups. Also using Vaseline in between times when it’s not a Clobetasol day. I have been on this regimen for many years with no problem. The pills I take every day, the ointment on,y for flare ups.
@francesmharris123 I do believe stress exacerbates this condition. I have experienced more pain during stressful times.
@francesmharris123 - if it isn't too late to enter into this discussion, it sounds to me like Lichen sclerosus, which I have had for 40-some years.
If I may suggest you search for the Lichen sclerosus (LS) discussion topic, you will see some of my posts, along with others, and that the Clobetasol propionate 0.05% is the current treatment (NOT a cure - there still is none) for LS.
I won't go into my need for laser ablation this past Feb. to address it when it became pre-cancerous, but you can read more about it and others' experiences there. It IS an autoimmune condition with possible inherited aspects, but my gyne oncologist has patiently listened to my Qs and concerns with the procedure/s, and I now continue follow-ups, with biopsies if needed to check out areas of concern.
Do check out additional information on the nih.gov sites, and be informed.
Wishing you well, and even that it has been controlled by the time you read this.