Does anyone go to pain management because of AV?
Posted , 7 users are following.
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?
0 likes, 21 replies
yolanda11663 lindanb
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.
linda50940 lindanb
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.
lindanb linda50940
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.
Suki_girl lindanb
Posted
lindanb Suki_girl
Posted
She prescribed estrace, lidocaine, and myrbetriq. I'm assuming a very early menopause led to the narrowing, but I didn't ask.
Guest lindanb
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.
linda50940 Guest
Posted
Sorry about all the questions. Just curious if that would be an option for me.
Thanks.
Guest linda50940
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.
Suki_girl Guest
Posted
Suki_girl
Posted
Suki_girl Guest
Posted
linda50940 Guest
Posted
Hope you are doing well.
Linda
Guest Suki_girl
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.
Suki_girl Guest
Posted
Guest Suki_girl
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!
Suki_girl Guest
Posted
lindanb Guest
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.