I wanted to get some information and education from any of you who have dealt with vaginal atrophy.
I am assuming most of us have had a radical hysterectomy due to our diagnosis either prior to menopause, during the process or post menopause. I was 3 years post menopause, and fortunately had very few symptoms.
I have been NED since my 2013 surgery. However, I have continued to suffer from UTIs. In 2017 I had one that led to a very serious case of sepsis.
I continued to have 3 or 4 UTIs yearly after my recovery, but they always cleared after antibiotics. However, I have now had one right after another since last Christmas.
I was just diagnosed by the Nurse Practioner at my urologist's office with vaginal atrophy!
Not ONE doctor mentioned the possibility of this tcondition to me since my 2013 hysterectomy! Not my primary, my regular gynecologist, my oncologist or the urologist himself!
I am pissed off and appalled that I have had to deal with this when there were treatments available!
So I guess what I'd like to hear is if anyone else has this condition, how do they treat it given we need to be careful about or totally avoid estrogen/hormone replacement therapies, and did your doctors ever mention the possibility of this occurring after your surgery...
Maybe I'm really dumb or misinformed, but I never heard of vaginal atrophy as a possible result of menopause or a hysterectomy. I thought hot flashes, weight gain & a lack of sex drive were the main problems.
I don't get a UTI very often, but a dear family member developed one last spring and, within just couple of days, died from sepsis. So I know how bad these infections can become.
Around this time a good friend of mine was having recurring UTIs. She would take the antibiotics prescribed by her doctor, but they kept coming back. She was referred to a urogynecologist, who told her that UTIs were not uncommon as women aged and their vaginal wall tissue became more fragile (the vaginal atrophy). So even women like my friend who is extremely healthy can develop this problem, despite never having had any kind of gynecological surgery. She has never taken estrogen.
The urogynecologist prescribed a cream for my friend to use internally. I also suggested that she use a peri bottle occasionally to help keep the area clean between her daily showers. The cream must be helping because it's been about 6 months and she hasn't had a UTI recurrence.
Until this occurred, I wasn't aware that there was this rather new specialty called urogynecology. So while I know you've already seen a number of different doctors, perhaps it would be worth checking out a urogynecologist to see if that doctor can offer any different advice in dealing with vaginal atrophy.1
I am being treated for a combination of atrophy
and incontinence, which is exacerbated by the lack of estrogen, thin tissues. I am seeing a urogynecologist as well as beginning pelvic floor therapy in November. Menopause was 19 years ago, UPSC treatment 3 years ago, which removed my ovaries and estrogen. I have no history of UTI's, only had one in the 1980's. My atrophy symptoms are burning during a shower due to the soap to the external tissues, my pelvic exams becoming increasingly difficult and painful to the point of wanting to scream, and stress incontinence which I did not know was affected by lack of estrogen and vaginal atrophy. When explaining this they used drawings to show a healthy vagina and intact organs compared to post hysterectomy and vaginal atrophy, then talked about what each treatment approach needed to accomplish. Almost no burning upon urination, which seemed strange to me. The stress incontinence slowly gets worse every year and it was explained to me that the lack of vaginal tissue strength is causing me to leak every more. I was prescribed estrogen cream, expensive, but it seems to be working. I was cleared to use the cream by my oncologist as my cancer is not estrogen dependent. They told me it would take a few months to see any results because I was so estrogen deprived. The burning has gone away, I will have my next internal early November so we shall see if this cream has helped. I had been complaining about the incontinence since surgery as it definitely got worse after the surgery. I was unable to hold any urine for a week, and it has gotten better but still worse than before surgery. They explained that the nerves probably were slightly bruised and the fact that my insides had to settle back down after organ removal.
So yes, this is a thing for some of us, and I hope that through therapy I can get better function. They explained to me that often vaginal atrophy and incontinence go hand in hand. I don't want surgery to fix it at this time, so I am going down the list of treatments with the therapy and cream as a starter.
According to the Cleveland Clinic, 50% of women have it post-menopause. That doesn't mean immediately, but at some point. The drop in estrogen is the cause. My aunt suffered from it even though she never had surgery or a gyn cancer. https://my.clevelandclinic.org/health/diseases/15500-vaginal-atrophy The problem comes in when treatements are discussed as usually any cream is hormone based and can be dangerous for those that have had hormone sensitive cancers.
I asked after surgery if everything woiuld be lower in my pelvis since so much was removed and was told "no" but that wasn't true and on one scan the radiologist mentioned that it was lower. When I have an urge to pee or defecate I have to get to a toilet straight away. It is not uncommon for me to leak on myself and I, too, get UTIs.
I had severe frozen shoulders (both) which is another symptom of lack of estrogen within a year or so post-surgery.
It is true that most doctors don't discuss all of the symptoms you may have. I hope that your symptoms can be managed.
Thank you ladies for your
Thank you ladies for your experience, feedback and information.
I did alot of research on my own after joining a vaginal atrophy group on FB which was a treasure trove of information! (Much like this group).
Many ladies posted that topical estrodial cream used a couple times a week can significantly reduce symptoms without risk of reoccurence.
I also discussed this with 2 of my doctors...one of which was the PA at my PCP's office. She agreed the cream was of minimal risk, and gave me the prescription. My UTI symptoms have almost disappeared entirely within a month. Incontinence has been an issue since perimenopause, but is more manageable.
I am willing to take the minimal risk associated with the cream as another bout of uti related sepsis is always a big fear. As you noted cmb in reference to your family member it can take you out quickly and unexpectedl
And frankly I was so sick of the constant UTIs and antibiotics with their various side affects I was willing to try anything to stop the symptoms! And yes, it is expensive!
So thanks once again.
Forherself Member Posts: 813 Memberedited November 2021 #6GREAT news
I am so happy to hear you have found relief. It does seem that we often have to seek our our own solutions these days.1
edited November 2021 #7I had my follow up with the urogyncologist
who prescribed the estradiol. I am three months into the cream regimen of twice a week. The cream seems to be doing it's job, no burning and my internal exam was fairly comfortable again. They indicated that the tissues look a lot better, not so gray. (!) The cream is expensive, but I was able to get it not using insurance at Costco for $31.00 a tube, about $125 for the year, so not bad. With insurance it would be $732!
My pelvic floor therapy is going well. I am doing numerous exercises which hopefully will help going forward. I was very hesitant to begin therapy, but I am happy that I took the step.
Yes, for Herself, I believe
Yes, for Herself, I believe the burden has been on us as individuals to seek out as much info on any medical issue we may be having. It appears that since the 1990s when the insurance companies took lead over medical professionals that this began happening. I feel bad for most doctors who have been sidetracked by managed care regulations to the point where their medical expertise becomes compromised!
Denise, I am glad things are working out for you and you are finding relief! Can I ask you about Costco? Did you just take or prescription there and it's that much less? I am a Sam's vs. Costco customer, but never thought of checking out their costs. And that's quite a savings!0
edited November 2021 #9Yes. You don't have to be a member of Costco
to access their pharmacy and immunizations, even though we are members. The Part D plan with Silver Scripts that I chose, is very inexpensive and all of my generic medications are either free, or $1.00 a month, this year I am using CVS. However, anything like the estradiol (which is also a generic, but expensive in my plan) I ask my prescriber to give me a paper prescription so that I can shop around, instead of them sending it to CVS. I also use GoodRx which has a pretty neat feature of giving you the opportunity of price checking your drug to any number of local pharmacies to see who gives the best price, Meijer, WalMart, CVS, Costco, etc. This works for me because all of my current meds are available as generics. I also was able to circumvent my plan's insistence upon a drug for incontinence that has bad side effects, but was cheaper, and if that did not work they would pay for the better med. I used GoodRx and was able to get the more effective drug with no insurance cheaper than the price I would have to pay with my Part D. The insurance companies obviously subsidize their cheaper plans when they gouge us for the newly prescribed drug that gets automatically sent to our providers. I had a tick bite that got infected and needed meds ASAP and was shocked at the cost of the topical drug so I decided to go this route of not allowing them to automatically fill the prescription. I discovered it was a fraction of the cost at another pharmacy, not using insurance. But you gotta shop around! It has saved me a lot of money.
Hope this helps.
Harmanygroves Member Posts: 480 MemberThe pharmacy info....
...is extremely helpful. Thanks, D!1
Thanks for all that info
Thanks for all that info Denise!
I didnt know you didnt have to be a Costco member to access their pharmacy...I will definitely check them out.
Also, I will look into the Silver Scripts since it sounds less expensive than Humana. I can't complain too much about the generic copays as most are zero, but the various antibiotics I have been on this year were between $4 & $6 a piece..
I am 'only' on 6 daily meds that don't break the bank so when prescribed the estradiol for $45/month I freaked! My husband is on 12 meds daily some of which cost $50 or above so I prefer to find ANY savings I can.
And I always thought that GoodRX was one of those savings cards that didn't help much.
I need to check that out, too!
The beauty of this board! Come looking for help with one specific problem, and leave with a dozen pieces of really useful info.
Thanks so much again!
Silver Scripts that I have is by Aetna.
My monthly plan cost is $7.50, with my generics $1.00 a month, total cost of $12.50 a month in the county where I live in Michigan. This year I am chosing CVS as the provider. My prescriptions are readily available generics, so I chose this really cheap plan.
I thought GoodRx was a scammy thing at first, too good to be true type of thing, but it is not. It is 100% free to use. (I don't know how they make money but if something is free, you are the product) I have used it for several years with no problems. It has a website that is a great resource to price out your exact medication at your local pharmacies. You simply input your zip and your prescriptions and the pharmacies near you. Sometimes the price is the same without GoodRx, so I always check, but I have saved quite a bit for me and my family using them. I don't know of any other aggregator site that allows you to check all of the pharmacies at once, rather than going on any individual website like CVS, or WalMart.
Another tip now that we are in the time to evaluate our Part D drug plans, is when I first went on Medicare in 2015 I chose a Humana Part D plan, it was not expensive for the 1st several years, stayed about the same cost wise. Then in 2018 the mother of all bad health years happened starting with spiking blood pressure, cancer, so much time, tests, doctor's visits and during the worst of it we did not look at the new pricing. The price increase was not in the drugs, it was in the monthly cost, which we did not notice. If you do not cancel your plan they roll it over with any price increases. It cost us almost $800 extra that year because we were not vigilant. So the moral of the story is check your Part D provider costs every year. I have been happy with Silver Scripts, but I know if I get prescribed any costly drug I will have to wait until the next enrollment to change my plan.
woodstock99 Member Posts: 194 Memberedited November 2021 #13I am still on my emploeyr
I am still on my emploeyr plan so have deferred Part B & D as it is less costly for my husband and me to be on work insiuranmce than Medicare for now.
But I recall when I took over handling my moms affairs about 8 years ago until 2019 when she passed away that the first time I went to do her Part D renewal with UHC, I saw that she had been paying for the top plan for 10+ years even though she could have been on the lowest premium plan which required using Walgreens which ironocally is where she had everythng filled. She never com,parison shopped during open enrllement - same with Part B.
I have also speone with Boomer Benefits a few times to get info and they seem to be the best 3rd party in terms of getting info and rates on Parts B & D.0
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