Extreme Vaginal Atrophy Burning Pain unsuccessful with lubed insertion of vitamin e caps. Help?

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Burning & urgency so severe I . I can't do HRT as had total hysterectomy with endometrial cancer 2 years ago. Now severe vaginal atrophy & scar tissue in vagina w/extremely narrow entry so tried inserting vitamin e cap. w/coconut oil & was so hopeful this would help but urgency & pain all night. Hard to find a vaginal moisturiser that doesn't burn. Will try Gynatrof creme next. Trying to keep hope alive so any other ideas?

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    Hi Marlene,

    Have you explored this subject with your gyno, I'm assuming you have. But there is a vaginal hormone called Estrace Cream.. I had a hysto due to fibroids and a family history of breast cancer, so I can't take oral HRT either,, however my gyno put me on the Estrace cream bc I was exactly like you are now. This cream is a miracle! Very little if any will enter your blood stream and has been used by many women who've had cancer. I've been using it for 3.5 years, I'm basically back to normal. It took a while, it doesn't work overnight bc its a topical cream inserted at night or there's a tablet called Vagifem that does the same thing its just not messy like the cream, I prefer the cream bc its soothing almost immediately. I'm not a doctor so this isn't medical advise, except talking to your doctor. But do some research on it and I think you'll be encouraged to bring it up with your doc if you haven't already. I was so miserable I was at the end of my rope. I started out using 1 gram a night for a couple weeks, then I went down to a gram 3x a week, now I use a half a gram once a week. I use it internally and about a pea sized amount smeared on my outer bits and around my urethra. The burning has stopped, the urgency to pee non stop has also stopped, and sex isn't painful in the least any more.. My doc also sent me to pelvic floor physical therapy to strengthen my pelvic floor. Its amazing how many women including me do kegel exercises wrong.

    I feel bad for you bc I know how miserable you are, I can't tell you how many nights I slept with an ice pack. I did the Replense, coconut oil, which helped for a bit, bought expensive lube, you name it I tried it, and none worked. But ill use this cream for the rest of my life if I have to! I swear by it.

    oh! also they use the vagifem on nursing home patients who are prone to UTIs, the study they did on it had amazing results.

    Do some of your own research on these two topical therapies and then go see your doctor and discuss your pros and cons.

    Good luck! Keep us updated if you find a treatment that works for you!

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    • Posted

      Gigi, I want to thank you from the bottom of my heart for answering my post in such detail! Yes, I have spoken to my gyno. who just told me to moisturize, but hasn't helpedthis burning & nothing seems to soothe it. My other option was to use premin but was warned by the oncologist that I have an estrogen dependent cancer. When they finally found it, the tumor was only a pencil lead's width b4 breaking thru the uterine wall. That is why they couldn't remove it laproscopicaly and needed to bring it doen thru the vag.canal which was so narrow with Vaginal Atrophy, they needed to reposition my body, cut the vagina to be able to accommodate the uterus, taking care to not spread any cells & suchure the vaginal vault. I was to have wide beam radiation as soon as I was healed, but because they couldn't find the bleeding source within the 3 month window & covid affecting treatment, I was unable to have the only treatment to extend my life. In hindsite, I'm glad I didn't have the wide beam rad. because everyone who has is suffering with pain & incontinence of both bladder& bowel. Apparently, if my cancer returns, they won't b able to stop the bleeding. I go for ct scans w/contrast dye every 90 days for the next 3 years but wanted me to stay away from estrogen & self isolate b/c of covid . That would put me over the top.

      Btw, I wouldn't have known about the extreme vaginal atrophy had I not ordered an "operation summary" from the hospital where I got the info about VA. I was told nothing about it. I am hopeful that my story and your lovely reply will help someone else. Thank you so much & I am so grateful for all of you!

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    • Posted

      I was 33 when I had my hysterectomy.. they did it vaginally too. I had 2 fibroids, one the size of a softball and the other a little smaller than a baseball. I was hemorrhaging so bad my blood count was way too low. They took everything but my ovaries. I'm 54 now and started having problems 4 yrs ago, started with non stop yeast infections, UTIs, itching, burning and finally BV. I have other health issues too, my white blood cell count is ALWAYS high for no reason so I see an oncologist every 6 months along with an endocrinologist, they both ok'd the Estrace Cream.

      Estrace cream is Estradiol and Premarin is Conjugated Estrogens.. I'm not sure what the exact difference is but my gyno refuses to prescribe Premarin to anyone. IMO its worth asking your docs what the difference is. Mine told me the Estrace was as safe as I could get bc very little if any enters the blood stream. I just had all my hormone levels checked and my estrogen is so low that the cream is definitely not getting into my blood stream.

      You've been thru more than anyone should have to go thru. There has to be something you can use! I'm in the US and a lot of women use holistic docs and get their meds from compounding pharmacies. Do some googling and see if there's a holistic home remedy besides lubes and moisturizers. A lot of women on this forum get creative, hopefully someone else answers, but if you do a search on past conversations you'll probably find something.

      But in the meantime here's a few things that I swear by (and my physical therapist told me to do lol). make sure you wipe front to back using non scented toilet paper, don't use soap on your vagina, plain warm water is best as your vagina is "self cleaning", no douching, wash your panties in non scented detergent (a free and clear formula), and no bleach or fabric softner. All that can cause even more drying. Google pelvic floor exercises and try them out. Retain your bladder for the urgency, when you feel you have to go, hold it as long as possible, then go, while sitting on the toilet after going, bend forward to squeeze out any that might be left. It takes a while to retrain your bladder but if you can the urgency stops. If you leak, the pelvic floor exercises will help strengthen those muscles and either stop the leakage or slow it down.

      I hope some of this helps!

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  • Posted

    I have pain urinating, mild abdominal pain, itching, burning, pink on tissue when peeing is burning. Had hysterectomy 40 yrs ago and no sex the past 15 years. What women have to endure! I use Replens. It does help. My doctor told me to use a vaginal moisturizer, not a lubricant. I hope this helps you.



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