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

Posted , 10 users are following.

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.

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12 Replies

  • Posted

    WOW! Great post! Thank you for sharing all of this info! Glad you have found treatment that works and congrats on the improved sex life!

    All great news. And it sounds like you have found a great doctor! Mine just stared at my lady parts then invited all the other medical professionals to come have a look, lol. They all scratched their heads and said... "try clobetasol." they did not offer the ointment, only the cream, which works just fine for me.

    Anywho! THANKS FOR THE POST!

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    • Posted

      Thank you and you are welcome...

      I was very lucky that my general gynecologist recognized it immediately since it appears I have caught it early. She is young and smart and I am thankful for that. During this time I had seen an urologist and she said LS is very common but often goes undiagnosed or misdiagnosed.

      I think the only reason ointment is usually prescribed over cream is that some people may be sensitive to the ingredients in the cream--so glad it is working for you!

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  • Posted

    Wow rubydee, I am so glad you have found a treatment plan that works for you and that you can enjoy sex again. I wish you continued good success and pleasure. Take care.

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  • Posted

    Hi ruby, thanks for sharing.

    I think Goldstein was the only real authority on LS for a while, but fortunately there are new doctors that have a good understanding of Lichen Sclerosus. The only difficulty is finding them as I suspect they are quite rare - yours sounds like she knows her stuff.

    It also sounds like the estriol cream played a role in getting you back to where you want to be, it is not something that I looked at to be honest..maybe I should.

    With regard to UTI's I was in a similar situation with repeated infections but since taking cranberry capsules they are a thing of the past.

    The borax treatment I am still figuring out. Like yourself I used a q tip twice a day but it made me horribly sore and so I had to stop. The key seems to be figuring out the ratio of pinches of borax to water which suits ones individual needs. I then tried two pinches in a small squirty bottle of water and got the same results..sore sore sore! I am now better, and I am going to try one pinch of borax and see what happens.

    I have not mentioned this before on this site but the borax DOES unfuse your labia minora from your labia majora. I can honestly say I noticed the slight unfusing, but as I said I had to stop because I had got the ratio wrong. I wanted to try it myself before commenting.

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    • Posted

      Guppy--I too think the estriol played a large part in relieving my major symptom of tightness. I asked the specialist what she thought and she thought it was due to the clob. For it to work after only a week seemed strange to me. I'm going to chalk it up to the combination of the two...

      Before menopause I had only experienced one UTI so after getting two in a few years after menopause I started taking D Mannose for prevention. Seemed to work for awhile and then this past spring and summer I had recurring infections. I started taking Ellura daily, sometimes 2 a day along with d mannose and nothing worked. I saw a urologist and she said the LS may be contributing to it since anything unusual going on down there could play a role. During this time I started testing my urine with those dip sticks on a regular basis and I noticed I almost always tested positive for leukocytes or white blood cells. Since being on the estriol that has stopped.

      I too noticed slight unfusing with the Borax treatment so I will continue as long as it feels okay. It does seem hard to believe I wold be able to unfuse it entirely because it looks like the minora has been totally incorporated into the majora...we'll see.

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  • Posted

    Hi Rubydee. Thanks for your post - so informative and you clearly have an excellent gynae. It's so good to hear some positivity on here. We are all suffering to different degrees and it helps to hear of a journey where someone has found a routine and potions that suit them. I too have found estriol to be really helpful and wish I had been told about it earlier (I am 65). I have been using it for 5 years and I am not about to give it up. And the borax is soothing and does help with unfusing although some of my unfusing occured when using the steroid - I have never completely unfused however.

    Good luck and keep us up to date.

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    • Posted

      Hi sarb--It is good to be in a good place at the moment. Like everyone else here on this forum when I first was diagnosed with LS it was a real kick in the gut. To have a lifelong condition that will need to be maintained with a prescription drug is a real downer. I felt sorry for myself briefly... I realize this disease is a roller coaster so I hope any downs I have aren't too extreme. One of my questions to the specialist was how will I tell if I am in a flare if I don't really have any symptoms. She said to keep my eye out for the white patches and redness along with change in texture. She also suggested I only examine myself once a month. Ha...I take a look everyday since I need a mirror to apply everything...

      The journey to finding estriol really opened my eyes to how greedy drug companies are especially here in the US. I discovered that while estriol has been used worldwide (with the exception of US and Canada) for decades, it is not routinely prescribed here in the US because the drug companies can't patent it. In fact, Wyeth has tried to get it banned from compounding pharmacies. So the patented estradiol drugs are what get prescribed. Estriol is the gentler estrogen and the better estrogen for vaginal tissue. I'm not giving it up either...so far it has been a miracle for me not just for the painfree sex but for my bladder health.

      I'll keep at the Borax but I don't think it will completely unfuse the bit of fusing I have. I console myself with the fact that many women have surgery to reduce their labia minora...I got it for "free"...

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  • Posted

    Hi

    Thanks for posting your experience, that's really useful info. I'm always interested in hearing the estimates of how many women get LS. My old GP who was also a dermatologist thought most women will get it at some point in their lives, my friend's doctor thought 1 in 50, I saw a specialist recently who thought 1 in 50 was too high, but yours says 1 in 22. Personally I believe the higher figures. My specialist did say that more and more younger women are presenting and that is a worry as it was always thought to be mostly seen in older women.

    I too am having unfusing with borax. At my first specialist appointment, I had moderate-to severe LS, at my last I was told it was mild. I've never seen the same doctor twice and obviously they don't read the notes or they might have asked how it had suddenly got better when it's not supposed to do that.. but I am pretty much only using borax and carrier oils with essential oils to moisturise. Plus cutting down on sugar. I still have quite a lot of fusing, but there is a very gradual relaxing of the severity of it and seams have appeared where it looked like things were completely gone. It gives me hope, where before I felt defeated.

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    • Posted

      Bridge - can you tell me how often you use the borax and do you soak in it? I have further fusing and I do swab with borax every morning and occasionally soak in it. I am wondering if upping my use will help relax this latest fusing.

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  • Posted

    I'm expecting teenage son home any minute, so if I cut off mid-word that's why...

    I have a small spray bottle next to the toilet. about 100mls I think. I put a pinch of borax in and fill with water. After every toilet visit I dab with very wet toilet paper to wash away the urine, then spray liberally with my dilute borax solution, then put one of my oils on. I use a 100ml bottle with some combination of oil and essential oil then, when it's finished use a different one

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    • Posted

      My combinations are; Avocado oil, olive oil, coconut oil, epaderm. The last two I use without essential oils, the first two I mix a combination of frankincense, palmarosa, chamomile matricaria and turmeric. I can't tell you what quantities because i forget every time and do something different... I know I put much less of the frankincense in than the others. I looked sepcifically for essential oils with anti-bacterial properties, and they seem to work well for me.

      I felt much better when I started using borax after every toilet visit - I'm guessing that it neutralises the urine, and that might be where the benefit comes from. Every now and again I take a three week break from it and use steroid and wash after every wee instead. I don't know how often, I just get a feeling now and again and think 'ok, time for a break.' Maybe every six months or so.

      I hope that helps

      Bridge

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