All Topics → Forum: Hormonal Therapy - Before, During and After → Topic: HELP: vaginal problems & tamoxifen
Risks and benefits, side effects, and costs of anti-estrogen medications. Note: Please remember that there are good experiences and bad with ALL treatments and this is a safe place to share YOUR experience, not to be influenced or influence others.
Posted on: Mar 9, 2009 02:20AM
I went into chemo-pause prior to my 2nd dose of TC. Things have been on the "dry side" after that but not too problematic. Mainly some atrophic vaginitis that my onco said extended into my urethra. Taking cranberry extract twice a day helps the slight irritation. Already had a recent urinalysis to double check that the UTI I had after my mastectomy definitely cleared up.
Started tamoxifen on 2/15/09 and things have been on the "wet side" ever since. Boniva was started at the beginning of Week 3.
Week 1: slight discharge.
Week 2: sudden deluge of vaginal discharge. According to MD, my body would equalize after a bit.
Week 3: discharge still heavy at times but increasing discomfort down below by the end of the week. I started using a very dilute vinegar water to rinse with after going #1 and hopefully head off any problems. Been told to do that pre-BC when it seems I might be developing a yeast infection. Also my RAD ONCO says vinegar water rinse might actually help w/ the discharge.
Today, I know for sure all is not quite right down below--very tender and swollen. My body is still out of whack from chemo and anti-hormonal therapy that I'm not sure if this is more atrophic vaginitis or I'm brewing a yeast infection and / or a UTI. Normally, I have no trouble telling the difference. I currently don't itch so much as have a constant low-grade burn. Most of the burning I'm feeling is on the outside vs. the inside especially when going #1. My vulvar tissues could just be raw from the (moist, warm, dark) "swampy" conditions that favor yeast overgrowth. Now even the dilute vinegar water rinse burns. I also noticed a few pinprick specks of blood when very gently patting dry. I could also be at the very early stages of a UTI which I'll know for sure if the burning gets really bad.
It's the weekend and though I'm not comfortable, it's not a life-and-death problem to bother the on call doctor with. This is my first yeast infection or UTI since chemo, rads, and anti-hormonal therapy so not sure what protocol doctors usually prefer. Treat myself w/ home remedies only (vinegar, acidophilus, boric acid powder, etc.) or go ahead and use miconazole (Monistat generic) that I have on hand? I will call in tomorrow but don't know how soon they can get me in.
As you may have already deduced, I have been prone to yeast infections in the past. Is this going to be an ongoing problem for the next 5 years? I read that some ladies on tamoxifen have gotten yeast infections while on tamoxifen. What did your doctor recommend? Or better yet, what worked for you to deal w/ yeast and other vaginal problems?
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Mar 9, 2009 04:13PM 1in8 wrote:
Not douching repeatedly. Just rinsing down outside and barely at vaginal opening.
Just happened to have RAD follow-up w/ RAD ONCO a week a go last FRI--so she's the doctor I last saw. That just happened to be when discharge started getting out of control and I mentioned it to her.
Don't have GYN but 2 primary care physicians (at 2 different locations) instead: my original PCP whom I like very much and can still see as a PPO or cash patient and my new PCP whom I changed to when switching medical groups so I can see my MED ONCO as part of my HMO (trying to get handle on my med bills). Unfortunately, both doctors are in high demand and tend to book up way in advance. Calling right when the office opens never works but gets me the switchboard instead. Will wait a few more minutes first before calling.
Meanwhile, been using a leftover tube of Monistat around labia yesterday afternoon and evening. Burning is just a tad better. No urgency / burning when going #1 so I'm leaning away from UTI and more toward yeast or just more vaginal atrophy.
Mar 9, 2009 04:16PM Kleenex wrote:
I will add that since I started Tamoxifen in December, it's been a vaginal festival of fun, with new and different symptoms all the time. Some days things are normal, some days I have an odd discharge that's not yeasty or fishy but just there, sometimes I'm insanely itchy, some days my vulvar skin will be extremely dry and sensitive and I'll have a bit of bleeding (like it's chapped or something), and then I'll be back to normal. It changes a lot. I had my period after 41 days last week, and one day I thought I was just going to have to throw myself off a bridge - tampons almost felt sharp somehow, and yet using a pad and having to deal with the constant moisture was also hideous, because my skin was so irritated. And now two days later, things are virtually normal. It's impossible not to have mood swings when you're dealing with something like this...
I see my medical oncologist on Thursday for a follow-up, and ideas about this (and the "so, does this calm down over time?" question) are something I will ask about. And after that, I'll talk to my gyn if I'm still having issues.
I agree with Rose - less is more when it comes to that area of the body. It's really set up to do its own balancing thing. I think it's just harder with Tamoxifen messing with the hormone flow... There are all of the things that one does to ward off a yeast infection: cut back on bad food, drink lots of water, keep the area clean and dry, treat it gently and wear loose-fitting clothes, etc.
Mar 9, 2009 04:21PM pip57 wrote:
I was on Tamox for over a year and had the same issue. Terrible discharge. I thought that it would clear up after my hyster/oomph, but it did not. I was switched to Arimidex in the fall and over the next month the discharge lessened until it was gone. Definitely was the tamox.
Mar 11, 2009 03:23AM kayakgirl wrote:
I too had a brown discharge that got itchy and the vaginal area got raw and sore. I did see my GYN who did an endometrial biopsy to make sure the brown discharge wasn't bleeding from my endometrium. The biopsy was negative. I am using Replens Vaginal Moisturizer about once a week before going to bed. It is helping alleviate the raw sore discomfort.
Mar 11, 2009 04:02AM rferraris wrote:
I just got back from our Young Survivor's support group and we had an GYN & Oncologist there to talk to us about our "girl" problems and this was one of the things we talked about. Unfortunately I do not have the notes from tonight. (BTW it was a great meeting!) Anyway Tami you need to see an gynocologist about all of this. I would talk to my oncologist and find one that she/he recommends. If they have a good working relationship, you will benefit!!
Mar 11, 2009 06:58AM 1in8 wrote:
Good thing I was being patient active and called more than one doctor. It took the chemo nurse from my MED ONCO's office over 24 hours before calling back just to tell me to go see my OB. Yes, OB not OB/GYN. She said my onco does not deal w/ the problem I'm talking about. I wonder if chemo caused the vaginal irritation, then would she see me? Anyway, I told the chemo nurse that I don't have an OB anymore so she told me to see my PCP instead.
Fortunately, I had the foresight to call my previous PCP's office, too, yesterday and they managed to squeeze me in today. The verdict is that I'm extremely red down there and it is probably yeast though my doctor is sending a sample out to be cultured. Meanwhile, I can self-treat for yeast infection if I want as the culture will take about a week. Fortunately, the constant low-grade burning gradually gave way to sporadic intense itching. Who wants to go through that for a week--my doctor said that she wouldn't. She also said that coconut oil is safe to use inside and out in the vaginal area once my infection is all healed.
I've been taking 2 acidophilus capsules TID ever since chemo (w/ my onco's OK) since I've always been prone to canker sores and I only had 1 small one which is a miracle for me. That's worth it for me to keep it up even though I finished chemo on 10/29/08.
I'm already been doing all the "right" things to hopefully prevent yeast infections as I've been prone to them before: no white sugar and hardly any other kind of sweets or refined carbs, white 100% cotton underwear, no pantyhose, unscented white TP, no fragrances in anything, double rinse all laundry (I have sensitive skin), no fabric softener (I use white vinegar in the rinse cycle and that also helps to remove all traces of detergent while softening the clothes), etc. And of course, I have the some OTC med on hand just in case anyway.
Please note that I'm are using plain water or diluted vinegar water (~2t vinegar per 8 oz water simulates normal vaginal pH) as a peri-rinse for the outside only; not using it as a douche. Sitz baths are OK too.
Lots more self-help tips here: www.nva.org/patient_services/S...
Hope some of these tips can help others w/ yeast infections.
Mar 11, 2009 07:22AM 1in8 wrote:
Kleenex - I hope your onco will answers that will help us. Please keep me informed.
Rachel - normally, I do have a good working relationship w/ my MED ONCO so I was really shocked by the reply. I do know that they are currently short staffed since the other nurse is out for surgery.
Only one other time was there a delay in getting back to me and that was while I was on chemo. The problem (I forget whatever it was) gradually resolved by itself so I didn't bother to call back. I did mention it to my onco at the next visit and she was surprised that the chemo nurse did not get back to me the same day.
What I hate the most about playing phone tag is the waiting to get a response back. I feel as if I need to be chained to a phone if I want to talk to a live person. So I'm afraid to take a shower, run an errand, or do anything else that would take me away from the phone. Messages left on an answering machine frequently don't quite cut it.
BTW, my original PCP is a family doctor and she's the one who's been seeing me for my Well Woman check-ups for many years. My plan is to continue w/ her as a PPO patient for any GYN related problems and TVUS follow-ups. My new PCP is for authorizations to see my onco and any further scans and tests.
Agnes17 - I read about Replens and went to check it out. Unfortunately, it has parabens which won't work for me.
Mar 11, 2009 02:37PM djr wrote:
Wow I just posted about my discharge.. It is terrible.. Never had any thing this bad until i took tamoxifen.. I did Femera and Amorasion.. nothing like this.. I going to ask my Doctor to switch me .. Can't live like this and I am very emotional about everything .. been on Tamox for 5 months and getting worse....My life has be a rollar coster...AND I Don't NEED antidreppresion...The PA did give me the yeast pill and it helped alot...Good luck
Mar 13, 2009 03:41PM Kim_Ellis wrote:
I have been taking tamoxifen for about a year. I have not had a period since chemo in july of 07 until last week when I developed uterine hemorrhage. I had to go in the hospital and have a D&C and an endometrial biopsy. The gyn thinks it is related to the tamioxifen but I won't know anything until I get the results of the biopsy. Has anyone else been through something like this? What are the chances of developing a second cancer?
Mar 13, 2009 03:59PM awb wrote:
1in8---I would call the gyn and get advice on what to do. I just finished my 5 years of tamoxifen and only had one yeast infection in all that time--it was awful, so I empathize with you. My gyn put me on Diflucan and it cleared it up very quickly.
Kim--the risk of endometrial cancer from tamox is very low--reportedly less than 1%--but abnormal heavy bleeding is something to watch out for--so it's good you are having it checked out thoroughly by a biopsy. Praying you get good results soon.
Nov 14, 2009 05:29AM n6tmax wrote:
The first month after a started taking tamoxifen I started to have severe vaginal discomfort. I tried treating it with Monostat. I also tried Replens. I finally went to the doctor to see if it might be bacterial vaginosis and it was, so the Monistat was possibly making it worse. I was on antibiotics but the second time around I went to the health food store and got some BioK. It's a hi potency liquid acidofolus. I used it vaginally and got almost instant relief. I drink it as well. I continued to use Moist Again or Replens but was still undomfortable and noticed that my labia seemed to be changing. After a long discussion with a pharmasist she recommended that I try some Estiol (it is a bio identical estrogen but not the one that feeds breast cancer). The perscription is is .5mg/ml vaginal gel. I am supposed to use it twice a week but find that every two days is the best. She said that this was a very small dose so I am not too concerned. Bacterial vaginosis can be very itchy, irritating and the discharge is on the gray side. The lack of estrogen can also contribute to urinary incontinence and cyctytis. The estiol also solved this problem. I recently had another bout with bacterial vaginosis. I used a water douch with a capful of hydrogen peroxide, followed by an aplicator of BioK one day and the Estiol (before bed)every other day. I did this for about a week.I did try a very diluted vinegar douch once but found it too stong. I think that this is a better solution than anitbiotics because they can wipe out good bacteria and lead to other problems. I think my doctor was impressed. The lack of estrogen causes the labia, and vagina to atrophy but if you start using Estiol when you start on the tamoixifen you might be able to stop some of this from happening. I wished I had of known about this stuff sooner. According to my doctor these problem are very common in women who have gone through menopause.
Aug 23, 2013 06:58PM chattipatti wrote:
Question, Just started the Tamoxifen and having discharge, is this normal? I call the Onco and she said the discharge is not from the medication. Am I going crazy. Need help in WI
Aug 23, 2013 07:18PM TarheelMichelle wrote:
Chattipatti, your onco is wrong. As you can see from this topic, many women have problems with V. discharge on tamoxifen. The onco isn't the one to see for relief of your symptoms. Go see a gyno.
I'm really annoyed at how often our oncos give out flat out WRONG information.
Aug 23, 2013 07:29PM chattipatti wrote:
Thank you I just made an apt with GYN, but is there anything that can be done?
Aug 24, 2013 12:05AM 1in8 wrote:
Chattipatti - whether having discharge or becoming extra dry while on tamoxifen or other anti-hormonal therapy seems to be an individual thing. I'd highly recommend you see another doctor (GYN, PCP) if your ONCO won't / can't culture your discharge. That's the only way to know for certain if you have something that needs to be treated (BV, yeast, etc.) or not rather than suffering for a long time. As I had mentioned in an earlier post, even my PCP said that she wouldn't want to wait until the culture came back before starting some type of treatment for relief at the very least. If your tissues are irritated from extra discharge or yeast, see the many suggestions from the above posts for some relief in the meantime.
It's hard to believe that I'm 5.5y out from my diagnosis. My cancer journey is going smoothly and I'm still dancing w/ NED! I am on a GI detour (as I call it) w/ after effects from chemo and rads according to my PCP and 2 OSTEOs. My med & rad ONCOs disagree as I did not have any GI issues during active treatment and they started and / or got worse 2y after chemo ended. I agree w/ my PCP and OSTEOs as my mild Fructose Malabsorption before cancer has become quite severe afterwards.
Anyway, in that time, I've been on tamoxifen, anastrozole--got switched after I started getting out of control diarrhea that couldn't be linked back to anything other than possibly the tamoxifen and my ONCO swore up and down my hormonal assays indicated I was definitely POSTmenopausal; unfortunately, switching away from tamoxifen didn't do the trick as it was mostly due to SIBO (we later discovered) and Fructose Malabsorption--, back to tamoxifen again when my ovaries suddenly woke up 3.5y later, and now currently back to anastrozole again as I am supposedly POSTmenopausal again. My fingers, eyes, and toes are crossed that I am finally and truly POSTmenopausal. It was a nightmare when my ovaries woke up and I don't want to ever have to go through that again. My GYN follow-ups got switched to an OB/GYN and I even had to do an endometrial biopsy which thankfully came back negative.
During my first time on tamoxifen, I did my research and found out that of the 3 types of estrogen (estradial, estrone, estriol) in our bodies, estriol is the one least implicated in breast cancer. BTW, here in CA, estriol has to be compounded. When applied topically to your vaginal / urethral area, you get the most impact to tissues that need it w/ the least amount being absorbed into your body. I ran this info by my med & rad & surgical ONCOs as well as my PCP and like n6tmax' doctor, they all OK'd for me to use it while on tamoxifen since it is a SERM. Some doctors will allow Estring but mine felt estriol would be much safer in my case since I had ER+/PR+ late stage BC. 2.5y later, my body had adjusted and I was rarely using the estriol anymore when I got switched to anastrozole the 1st time around. Just in case, I did double check about using it if needed while on anastrozole but was told not to since that's an AI and not a SERM. When I was back on tamoxifen the 2nd time around, I did not need the help of estriol anymore.
I do still get the occasional itchies, sometimes quite intense. Whether from hormonal changes or maybe even as side effect of frequent loose stools, I don't know. What I do know is that 100% virgin coconut oil and oatmeal cream (I only rarely add this) are extremely soothing and stops the itchies in their tracks. Both are much safer, IMHO, than using Crisco shortening which some on this board talk about. Crisco contains hydrogenated vegetable oils--think trans fats--and soybean oil. I'll take pure, natural coconut oil any day over Crisco. Coconut oil is a saturated fat consisting mostly of medium chain triglycerides and full of lauric and caprylic acids. Coconut oil is anti-fungal, anti-viral, anti-bacterial, and anti-parasitic. Recent research reveals it's much healthier for us than we were misled to believe by the soybean / vegetable oil industry. As my PCP says, coconut oil is very good for me and can be safely used internally and externally. Of course, you do want to scoop out the external use portion into a separate container from the food use one. It's very good for hair and skin, too. Just be sure to use a very light hand--several barely there layers that are each allowed to soak in before applying another one--when used on your face.
At my follow-up this past week, my ONCO and I just discussed my anti-hormonal therapy. Thanks to my meticulous record keeping, we know exactly how long I've been on each drug. Since my side effects are tolerable, I'll stay on anastrozole for a full 5y altogether. Depending on what the latest research is at that time--I'll have 2y remaining out of the 10y--and how my body is doing--my longstanding osteopenia progressed into osteoporosis last year and I have since developed endometrial polyps, ovarian cysts, and a uterine fibroid for which I have semi-annual TVUS to keep an eye on things down below--I'll either stay on anastrozole or switch back to tamoxifen for the remaining 2y.
Tamoxifen is better for your bones but can increase your risk of endometrial cancers, blood clots, stroke, cataracts, etc. AIs (Arimidex / anastrozole, Femara / letrozole, Aromasin / exemestane) have lower GYN effects but are harder on your bones and cause more joint pain, fatigue, sleep disturbance, etc. This is not to say that you'll get all or even any of those side effects. Those are the side effects most commonly attributed to the different anti-hormonal therapies. You and your ONCO need to discuss the risks and benefits of each to determine which is better for you.
Hope some of this info helps and you feel better soon,
Aug 24, 2013 02:43AM chattipatti wrote:
Thank you so much,this site kept me from jumping when I found out.
Aug 25, 2013 03:36AM Creta wrote:
I have been taking Tamoxifen for 18 months and experienced vaginal discharge, severe itching and discomfort that started a few weeks after starting Tamoxifen. My gynecologist diagnosed the cause as yeast. I had never had a yeast infection before Tamoxifen. None of the prescriptions worked except for flucozanole which provided only temporary relief. The best solution for me has been to take an over the counter probiotic formula such as Garden of Life Raw Probiotics, Vaginal Care. When I started the probiotics, I was hoping it would add to the limited benefits of Vagifem and Estring but soon realized that only the probiotics were working, so now I take 1 capsule every day when I take the Tamoxifen tablet. Doing this has eliminated all of the symtoms. This amazes me since the cost is a fraction of my co-pay for prescription drugs that provided little or no relief. BTW - I learned about using probiotics to control vaginal yeast on the Andrew Weil website.
Aug 26, 2013 01:48PM chattipatti wrote:
Now the mini hot flashes r starting aaarrrrgggghhhh
Mar 22, 2015 05:11PM cathy727 wrote:
I have been on Tamoxifen for about 2 years. About 2-3 months ago I started having intense vaginal itching. It is so bad at times that it wakes me in the night. I don't have the discharge normally associated with yeast infection. I am trying Monostat anti itch cream as cortizone cream didn't help. Any advice?
Mar 22, 2015 10:41PM Moderators wrote:
Dear cathy727, welcome to BCO. We would suggest you see your doctor as your problem may be easily rectified by the correct cream or whatever. We cannot diagnose your specific problem but we do hope that with medical care this problem can be rectified soon.
Mar 23, 2015 09:47AM Ariom wrote:
Hi cathy, my Mother had BC in the 90's and she was on Tamox too. She had the same side effect that you have. The itching was relentless and she tried all kinds of creams too.I think that an Aloe one, finally gave her relief.
I am so sorry you are experiencing this. Hopefully some others will come along and may have some other suggestions, about what you can apply to relieve the itch.
All the best!
Sep 10, 2015 04:48AM miss-marsha wrote:
Hi Kathy 727, I have been on tamoxifen since Nov. 2012. I have times when this symptom shows up usually before I have some labial cracking. Replens gives me some relief and moisture back and it may sound strange... My Gyno told me to shave the pubic hair off of the outer labia. It really helped!! If you do decide to shave,use lotion not shaving cream, trust me on that!
Oct 5, 2016 12:28PM - edited Oct 5, 2016 12:29PM by rocityroc
i have been on Tamoxifin for 3 months now after switching from Arimidex for 2years. After being on Tamoxifen for 2 months I developed a small like pimple or growth outside on my vaginal lip and I tried squeezing it to see if it was just a cyst & it has not gone away. 2 days ago another small sore has appeared. Is this normal for Tamox users to get sores? Do I tell me oncologist or my Gynecologist?
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