Does anyone go to pain management because of AV?

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I'm newly diagnosed, with a vagina so narrow that even a half speculum wouldn't fit. I assume sex would be excruciating, but since I have no partner, no worries there. The labial/vulvar pain is what is the worst, especially since it seems to flare periodically. After a brutal endo biopsy, I was recommended to take "an" ibuprofen, and let me say, it hurt like crazy.

I've already been using replens, coconut oil, epsom salts, vagisil, ice, and vagisil. Doc did give me some lidocaine cream, however. So how does everyone else cope with daily pain, and do you all find yourselves victims of the opioid crisis? Do docs brush us off as "woman problems," dismissing our pain? I'm already a chronic pain sufferer, and now I have a whole new diagnosis that docs can use to ignore my chronic pain. How do people deal with what I can already see is an uphill battle and how do we get our pain treated respectfully?

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  • Posted

    Hi, I must say I must have a high tolerance of pain which isn't somethimes a good thing as I wait too long I guess to get treated. You have every right to get help for the pain but as long as they are correcting the cause. It's been an awful journey with this never fully ending since my hysterectomy 3 years ago but grateful the cancer is gone.

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  • Posted

    First, let me say I'm sorry you are experiencing such pain. After they performed the biopsy, what were the results?  Is having a narrow vagina uncommon?  Is it the source of your pain? Could you have a bacterial infection or a yeast infection that is causing the burning? If so, they can do a urine test and give you antibiotic that will clear that up. Vaginal Atrophy?

    Have you heard of the Mona Lisa Touch? I have had three treatments and that has helped me. I believe doctors try to give each of us a true diagnosis and the best medicine to treat it. After the scare using hormone replacement for these "female problems" because of cancer, they may not know a good alternative. 

    My advice would be, do more research on the computer, ask more questions and don't give up. I sincerely hope you find something that works for you. Please keep us posted. We are all in this together.

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    • Posted

      I was a little unclear. I have no vaginal pain, only frequency and vulvar pain, but I had a period after 24 years, which prompted the biopsy because she couldn't get in a speculum. I don't have the results and she was unsure she even got enough tissue anyway. So I am delaying pm til I find out if I have cancer.

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  • Posted

    Did they say why your vagina is so narrow? Is there any reason you won’t use HRT, even oestrogen creams / pessaries? On another discussion we came to the conclusion that whatever natural methods we use, in the end HRT is the only thing that works.
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  • Posted

    To answer your question about coping with pain ...the key word is COPE. Unfortunately, there isn't even an opioid that takes the pain away because it is all so nerve related.  This is my personal story.  I have resorted to pain management, getting a nerve block.   This does help me with sitting. I have tried all the creams you listed,  and they only increase and aggravate the pain.  I do use lidocaine to get a little relief, but that is short lasting. This is a devastating problem to live with. 

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    • Posted

      Who suggested the nerve block, you or your doctor? Not familiar with this particular treatment? Does it interfere with your ability to urinate? 

      Sorry about all the questions. Just curious if that would be an option for me.

      Thanks.

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    • Posted

      Hi Linda, 

      Because I was having extreme difficulty sitting, my dr sent me to a pain management Dr.  He made an assessment based on my description of pain.  I also have problems with urimary frequency, but he said the block would not help that problem.  Besides the sitting problem, the block would hopefully calm down the symptoms of  stabbing pain, poker feeling .  He also labeled me with pudendal neuralgia. You can google this for more information.

      The block is done using a machine that guides the Dr to determine where to inject the medicine.  There is a lot of numbing meds administered, so the pain of the injections is minimized.  Lying on your stomach,  I received two injections right above each side of buttocks.  I can only receive 3 to 4 blocks per year, so they are spaced out accordingly.  To get a better idea, google pudendal neuralgia, Vulvodynia, and  atrophic vaginitis . You will learn how they all have some of the same symptoms.  It's all very confusing and there are many Drs who are unaware of the problems women face. 

      I hope this helps you. 

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    • Posted

      If it is nerve related then it is vulvodynia. VA in itself doesn’t involve the nerves it refers to the dryness and determination not of the vaginal wall. Atrophic vaginitis is the chronic and progressive inflammation of the vagina (and the lower urinary tract) due to the thinning and shrinking of the vaginal tissues and is often accompanied by vulvar and urinary pathologies. The urinary pathologies are uti’s and the vulvar pathologies are vulvodynia. VA, right AV can be treated with HRT but vulvodynia requires damping down the overactivity and hypersensitivity of the nerves which can be achieved by taking amitriptyline, nortriptyline or gabapentin, which numb the nerves, and acupuncture, which reduces the overactivity, and manual desensitisation which retrains the nerves to register touch and touch and not pain.
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    • Posted

      Pudendal neuralgia and vulvodynia are curable. Because the problem is nerve related it takes time, but it is possible. Have you seen my post “how I cured my vulvodynia”? Where I and other women share our success stories. You do not have to live with the pain, you do not have to cope. When my gynaecologist told me that he couldn’t help me get pain free but could help me manage the pain, well that was it for me. I didn’t want to manage my pain, I wanted no pain! I did some online investigating and found a consultant dermatologist who specialised in vulva pain and ran vulva pain clinics. She had vast experience of many women. She said there were many causes of vulvodynia, which literally just means ‘vulva pain’ (dynia = pain), pudendal neuralgia being one, so it is worth trying everything she had found to work to cure the pain (amitriptyline, physiotherapy, chiropraction, acupuncture, manual desensitisation) and find what works for you. Nerve blocks are just managing the symptom, they are not a cure.
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    • Posted

      Patricia, Thank you for this detailed information. I will Google it to learn more about it and discuss the possibility with my doctor.

      Hope you are doing well.

      Linda

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    • Posted

      Suki,

      I am well aware of all the interventions you listed.  As we have all stated, we are all so very different and react differently to all meds.  Like you, I have seen a dermatologist specializing in vulvar pain, have tried many different meds, compounded estrogens , and have done many rounds of manual desensitization.  I am currently doing acpuncture.  I'm not settling for accepting this pain, and if the nerve block offers me a bit of a normal life , until I find a cure , like you have done, I'll  take it! Thanks for all your input.  I know you feel the pain all of us are experiencing. 

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    • Posted

      How much acupuncture have you had? Give it time, it should help. If it is a nerve problem higher up the next physio and yoga should help. I did yoga positions to free up the pelvic nerves. I know everyone reacts differently to different treatments and has a different etiology. That is why it is worth trying everything. Because I cured myself I just want to help everyone else be pain free. I know how debilitating and depressing it is to be in such terrible constant pain.
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    • Posted

      Thank you for your continued kind thoughts.  I have been interrupted with my acupuncture and need to get back to it.  Presently , I'm traveling between a city and country house for the summer, so Im away from my weekly acpuncture. Idid receive a traditional body massage yesterday and the therapist couldn't believe how tight my back and Saccrum were.  Interestingly, while she was massaging my lower back, I felt sensation In my vulvar area.  I felt pretty good after the massage !  I've made two more appointments.   But yes, I'm going to get back to the acupuncture as well.  I also do the yoga stretches ; I have bought many books specifically written for pelvic pain and follow the specific yoga stretches. I'm going to see a Dr who specializes in bioidentical hormones next week, so Im hoping she can shed some light on my sensitivity issues of all topical creams applied.  Perhaps it's time for me to look into a patch... not the route I want to take, but I'll see. I still have hope that I will find a cure! 

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    • Posted

      It seems like you are doing all the right things. Keep it up, I’m sure you will Ben pain free someday. What type of acupuncture have you been having? Oriental or western? I had western acupuncture which is beaded on the nervous system rather than mythical meridians. The needles were inserted in my sacrum area and electrical current passed into them. After each session that whole area felt so relaxed and the vulva numbed.
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    • Posted

      I can really sympathize with the pain. I've already been in a pm program, but I felt that they were interested only in making money from steroid shots, which gave me no relief. I have a Tarlov cyst and other spinal isdues, but they insisted I was not experiencing nerve pain. Well, the uro-gynoc confirmed they were wrong. So I am looking for a new practice and a nerve block sounds promising.

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