Sore spot on labia

Posted by frustrated1 @frustrated1, Jun 17 9:45pm

I have a red and raw sore spot on my inner labia that never goes away and hurts all the time. I have been to 3 gynecologists and a specialist. None of them know what it is or why it won't go away. I've had MRI's and sonograms. I've had biopsies that come back inconclusive. It hurts all the time sometimes to the point that I can't walk or even sit comfortably. I've missed a lot of work because of this issue. Sometimes the area itches to the point of excruciating degrees. It's close to the vein and sometimes my vein swells up. All of these doctors dismiss the vein theory but I'm convinced it could be just that. It used to be that the pain and itching was just in that one spot but it has traveled up the vein line to my upper inner labia and sometimes affects that area. No raw spots there though. It's not an STD...I've been checked out throughly. I've been put on Gabapentin and Amitriptyline and every cream there is. Nothing works and the creams give me a yeast infection every time I try to use them. I've used steroids and estrogen. My quality of life is so diminished that I spend all of my time in bed, sad and depressed. I've been dealing with this for over 6 years now and no relief. The specialist sent me to a pelvic therapy clinic and the therapist told me it isn't that either. They finally just labeled it vulvodynia but nothing helps to eliminate or eleviate the pain or even make the spot better. Every doctor just looks at me and says "I don't know " and throws medicine and creams at me that don't help. Can someone help me?

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paisley52 | @paisley52 | Jun 18 8:34am

I'm so sorry to hear your going through this. My husband has eczema, which is red spots. I have vulvodynia which nothing shows,but burning. Were you checked out for eczema or psoriasis? You can get these anywhere. Sometimes we have a gut feeling. If you think its your vein you could be right. I hope this helps. Hugs

minnesota10 | @minnesota10 | Jun 18 9:00am

About 20 years ago I had about the same thing going as well with smell. My nose was very sore as well from blowing my nose. I have an allergy to trees.
My allergy doctor told my to try cotton TP paper as well cotton handkerchief. In a few days it felt much better.
So I only use cotton TP paper. I even take a roll with me when I travel.
Just a thought.

dlydailyhope | @dlydailyhope | Jun 18 9:43am

@frustrated1
So sorry to hear you are suffering for so long and are not getting any help properly diagnosing and treating this sore.

Here is what AI responded with:
“ I'm really sorry to hear about the pain and frustration you're experiencing. Chronic vulvar pain, especially when it has persisted for so long, can be incredibly challenging both physically and emotionally. Here are some potential avenues to explore that may help you find relief or at least improve your quality of life:
1. Seek a Specialist in Vulvar Pain
Vulvar Pain Specialists: Consider seeking out a gynecologist or pain specialist who specifically focuses on vulvar pain or vulvodynia. They may have more experience with complex cases and alternative treatment options.
Multidisciplinary Approach: A team approach involving gynecologists, pain management specialists, physical therapists, and mental health professionals can provide a more comprehensive treatment plan.
2. Physical Therapy
Pelvic Floor Physical Therapy: If you haven't already, working with a pelvic floor physical therapist who specializes in vulvar pain can be beneficial. They can help address muscle tension and other physical factors contributing to your pain.
3. Pain Management Techniques
Neuromodulators: Since you've tried Gabapentin and Amitriptyline, discussing other options with a pain management specialist may be worthwhile. Medications like topical lidocaine or other nerve pain medications might be options.
Alternative Therapies: Some individuals find relief through acupuncture, biofeedback, or mindfulness-based stress reduction techniques.
4. Lifestyle and Home Remedies
Dietary Changes: Some people find that certain foods can exacerbate vulvar pain. Keeping a food diary to track any correlations may help identify triggers.
Gentle Hygiene Practices: Using mild, unscented soaps and avoiding irritants can help reduce discomfort. Wearing breathable, cotton underwear and avoiding tight clothing may also provide relief.
5. Mental Health Support
Counseling or Therapy: Chronic pain can lead to feelings of sadness and frustration. Speaking with a therapist who understands chronic pain can help you cope with the emotional aspects of your condition.
Support Groups: Connecting with others who have similar experiences can provide emotional support and practical advice.
6. Consider a Second Opinion
If you feel that your concerns are not being addressed, seeking a second opinion from another specialist may provide new insights or treatment options.
7. Research and Clinical Trials
Stay informed about new research and potential clinical trials for vulvodynia or chronic vulvar pain. Participating in a trial may provide access to new treatments.
Conclusion
It's important to continue advocating for yourself and seeking the care you need. Chronic pain can be isolating, but you're not alone in this journey. Finding the right combination of treatments may take time, but there are options available that can help improve your quality of life.”

astohrer | @astohrer | Jun 19 6:33am

I am so sorry that you are going through this. My advice for this is simple: seek out providers locally. If they can’t help, make an appointment at your regional center of excellence. If they can’t help, go to a national center of excellence (ask and ask “Who is the best doctor in the world for this?” Do your own research and become your own best advocate. It’s hard when you are depressed so a support person can be really helpful. Good luck!

queenie2030 | @queenie2030 | Jun 20 5:59pm

In reply to @astohrer "I am so sorry that you are going through this. My advice for this is simple:..." + (show)

I started having pain and itching and some burning in the vulva. I also had bumps which were biopsied. The result was inconclusive. When the nurse called with the result she said it was inflammation. The biopsy report says it shows past inflammation. I was given Clobetasol cream which is helping. I have been on prednisone for 4 and a half years for PMR. It must be another autoimmune thing. I hope you can get relief. I am going to talk to my rheumatologist about it on Monday. So sorry for your pain.

pml | @pml | Jun 21 9:44pm

Hi,
How awful for you to have this situation and no one seems to know what to do about it! Whenever, I have a soreness or just uncomfortable feeling in that area, I put Mupirocin on it. Mupirocin is a prescribed antibiotic that actually is for a sore in my nose but works great on a sore in my vaginal area also. However, when I didn't have Mupirocin I used over the counter Neosporin. It worked just as good. I hope this can help you and that you can get this under control and have no more uncomfortableness.
PML

mrbear0830 | @mrbear0830 | Jun 22 8:53pm

Have you ever been tested for lichen sclerosis? I have similar symptoms and treat it with betamethasone ointment, which is similar to clob but must be an ointment not a cream. A vulva specialist can determine if you have it.
In the meantime, protect the sore area with aquaphor. I use an icepack for pain.
I hope this helps.