vulvodynia

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.

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!

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.

@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.

I just started having these painful symptoms. Over the last two months I have been to several doctors and GYNs and they are not sure what is wrong, but have ruled out any yeast, bacterial or virus. They say I have atrophy of the vulva (most likely the vagina as well), and have prescribed estrogen cream. As I am in a heightened state of pain and itching (comes and goes, but it seems like it is always there) over the last few weeks, topical relief seems to be the only help. The estrogen cream seems to make it burn and itch more, so I have held off on that treatment for a few days to get some relief. I also have been diagnosed with neuropathy for the last four years, and experience many symptoms of Sjgorens as well. Up till now, I have been managing my symptoms, but this is a horror! Most doctors don't have any true understanding of neoropathy and treat symptoms as best they can. I must say I am frustrated by all the expensive and ineffective prescriptions my GYN and doctor have thrown at this over the last month or so with little result. Can anyone relate and is there a next step for me?

I have had this since my 50s. Finally I found a dr at Mass General in Boston. She put me on Estradoil and gabapentin. Has worked. When I get a flare it seems to last not as long. I am going through a flare now and ice is my best friend.