Diagnosed 3 months ago...specialist seen twice...my story

Hi all and thank you for contributing to this forum. It has been very helpful to me over the past three months.

I am 57 years old and about 6-7 years post menopausal. 2-3 years after menopause I started having issues with painful sex and diagnosed myself with vaginal atrophy. I threw everything at it...moisturizers, lubes, nightly suppositories... It then got to the point where I started having small tearing after sex at my fourchette, the base of the vaginal opening. It looked tight. So after more self diagnosing, I started doing dilation therapy along with all of the creams, etc. This all worked so I could have sex but it was still painful and if I wasn't consistent with the dilation I would backslide and get tighter. It got to the point where I had to dilate just prior to sex. I was contributing all of this to vaginal atrophy.

This year was my year for my pap test, the last being in 2015. So a doctor hadn't taken a look for awhile. Due to a move I had found a new gynecologist in my new city and went in for a yearly check. She performed the pap and exam and asked me if I had any vaginal itching. None, I replied. She seemed skeptical of this and told me that it looked like I had LS but to be sure I would need a biopsy. She said there was no hurry but it was the only way to be sure. We talked about my symptom of vaginal opening tightness and I told her I had thought it was due to VA but she says that VA does not affect the outside of the vagina, it affects the vaginal walls. There is the problem with self diagnosis...I didn't know enough...

In addition to the vaginal opening tightness I was also experiencing recurrent UTI's. I had a couple the first few years after menopause but suddenly this past summer I had many right in a row. That is due to VA along with the vaginal dryness I had. So diagnosed with VA too, but I knew that already. She prescribed Estrace and gave me a prescription for Clobesterol to use after the biopsy.

I had the biopsy a week later. No waiting for me and it came back positive. I did not fill the Estrace. After doing research I decided I wanted to use Estriol. I found that it is the best estrogen for thickening the vaginal walls, bladder and urethra along with a lower risk of breast and uterine interaction. I started seeing a naturopath who prescribed the Estriol vaginal cream from a compounding pharmacy.

After this diagnosis of LS, I took a look down there and saw white patches ringing the opening of my vagina. This was also where she took the biopsy. Other than those white patches, my vulva was generally pretty red but no other white patches or lesions cold be seen. She had given me the instruction to apply the Clob twice a day for 2 weeks with no instruction on where or how much. After finding the LS support groups, doing online research and watching Dr Goldstein's video, I decided to put it on the white patches but would do it once a day for a month. I also realized I needed another appointment to discuss the where and how. That is when I decided to find a specialist in my area. I made an appointment with her but had to wait about 6 weeks.

In the meantime, I started the estriol and the clob at about the same time. Putting the clob on the white patches and doing the estriol vaginal cream every night for 2 weeks. In about 7 days my vaginal opening had lost it's tightness, it looked like my fourchette had relaxed and shrunk and sex was unbelievably easy and comfortable. My vagina felt plump again. My husband and I were amazed.

I continued with the clob and was using estriol 3 times a week after doing it nightly for 2 weeks when I had my appointment with the specialist.

The exam with her was very informative. She said I could go down to Clob twice a week around the vaginal opening, (even though the area was still white) but she found additional areas that needed treating. I had fissuring in my sulci, the valley between labia minora and majora. I had thought it looked red but I didn't know it needed treating. I had some scarring on my perineum, I was totally cluless on that. I have some fusing, the lower third of each labia minora is fused to the majora., I had seen that. Sad...She used a mirror and showed me where to treat. She showed me how much to use...not much. She didn't agree that it had to be rubbed in for 90 seconds, ala Dr Goldstein.

She had a few tips...don't apply the clob after sitting for a long time. Too much blood pooled there. Keep the entire area moisturized. Keep the emollients simple...vaseline, coconut oil, emu oil, aquaphor... No strong soap, White cotton underwear. Use a free and clear laundry detergent for undergarments.

She told me the thinking is 1 in 22 women have LS. She might mean 1 in 22 post menopausal women. Dr.Goldstein has it 1 in 70. There is a genetic component, she has a couple multi generational families in her practice.

I left knowing a lot more and more comfortable with the treatment. I scheduled a followup for a month later.

For the month, I applied clob once a day for three weeks and then every other day until my appointment. At the exam all looked better so I am now on maintenance of clob twice a week. If I get a flare I am to treat with clob twice a day then taper. I asked where to put clob during the maintenance phase and she told me where I had been treating it...the vaginal opening, the sulci and the perineum. I asked about using a weaker steroid. She said I could but I would need to use it more often. I asked about the whiteness I still had around my vaginal opening..she said it often does not regain its color. I asked her how she knew it no longer needed to be treated since it was still white. She told me to feel the texture and firmness of the patches. I guess at first they were rougher and made the tissue tight. Now the white patches are smooth and the tissue is very elastic. That's the best way I can explain it.

I have been keeping the whole area moisturized. Followed a lot of tips from this forum. Using coconut, emu and olive oil, emuaid and neueve cream, sometimes a natural vaseline product. I use a spray bottle after urinating. I am trying to unfuse with applying the borax solution with a q tip a few times a day. The area seems plumper...I can't take baths, too fearful of an UTI. Though since being on the estriol, my bladder feels better so I hope I have that problem solved. I have gone a couple of months now UTI free...so fingers crossed. I am having regular pain free sex...though a little lube, while not needed makes it even more pleasurable...I don't need to dilate anymore.

In hindsight, I wish I had known that the tightening of my vaginal opening was not attributable to VA. I probably would have gone to see someone sooner about that issue. I did not have the classic itching of LS but now I can say that while I didn't have any serious discomfort on a day to day basis I did have a vague discomfort now and then. Just an awareness of my vulva, a sensitivity in a way... because now that I have treated the external areas I don't have that feeling anymore. I also wish my doctor had stressed the importance of estrogen when I was going through menopause because I think that plays a large part for many of us with LS.

I am a person who doesn't like to take meds. I eat organic, very little meat in my diet. I work out. I don't paint my nails and I am now giving up the hair dye. So I don't take this idea of using clob regularly for the rest of my life lightly. But after seeing the photos and reading the research I do believe it is worth using despite the side effects. I believe if used correctly and you can tolerate it, it will give you the best chance of staying healthy.

I look forward to being a part of this community. Thank you again for all of your experience based knowledge you have shared and will continue to share.

3 likes, 12 replies