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Vaginal Issues from Chemo

LuLu
LuLu Member Posts: 12

Anyone else have vaginal sores from chemo?

I finished four rounds of A/C four weeks ago and by the fourth round had extreme pain with intercourse. I finally saw my gyno today about it, she's the first doctor to see the sores. She thinks they are vaginal warts, but ran no tests and I think she doesn't know what she's talking about. I've put in a call to my onco, because as soon as I got home and started looking up things on the internet I realized that the gynocologist could be wrong (and trust me, she's been wrong before about a lot of things).

I  probably can't see my onco until Monday. Did anyone else get vaginal sores from chemo and what did they look like, how were they treated, how long til they went away, etc.?

Maybe I'm in denial, but I refuse to believe my gyno's diagnosis. She didn't even test me for HPV and in my fourteen year marriage I've never had a single symptom!  

I cannot see a senario where chemo vaginal sores would be wonderful (especially given the pain these give me and the total inability to have sex as long as they are there), but trust me ... if I have to chose between the two diagnosis right now ... I'll take the chemo sores! Suddenly finding out I have HPV would just be salt on my wounds this year. I can't take it and I hope this one will go down as a wrong diagnosis from an ignorant gyno. It wouldn't be the first time ...

Comments

  • kerry_lamb
    kerry_lamb Member Posts: 77
    edited September 2008

    Hey LuLu,

    Try not to worry too much about HPV; it's very common in sexually active people and doesn't usually cause problems. I had mine discovered 15 years ago when I had a hysterectomy.The gyno ( a top operator) told me not to worry about it and I haven't thought about it since.  

    This chemo-vag thing is a HUGE problem for me. I haven't had the problem too far inside, but on the outside...man, I can barely manage it. I had bladder issues on the FEC, but now I'm on Tax I'm getting major burning, followed by unbearable itching followed by lumps like insect bites which bleed. All this going on at the same time as mild to moderate UTI (probably caused by inflammation caused by chemo).  It clears up by the third week.

    As if having BC isn't enough! The ONLY thing that helps (and I've tried all sorts of things) is blistex for cold sores. I'm looking forward to my last poisoning (Sep 28) so much but at the same time I am absolutely dreading the effects on the poor old 'gina. I'm going to prepare early with a beeswax-based barrier cream. I'll try anything.

    If you do have HPV and it worries you can always have warts cauterized. The thought of that freaks me out more than the thought of warts!Embarassed 

  • priz47
    priz47 Member Posts: 161
    edited September 2008

    Hi! I was told that if you were prone to mouth sores from chemo you could also get sores in any mucousy orifice. So it could just be from chemo. I would definitely talk to your onc abt it.

    D

  • Caya
    Caya Member Posts: 46
    edited September 2008

    LuLu,

    I definitley had vagina/anal sores from chemo - it was Taxotere that did it for me. I called my onc.'s office for an emergency visit (in between chemo sessions) and he prescribed a cream for it.Taking sitz baths 3 -4 times/day helped immensely as well. 

    UTIs were always a problem for me before BC, but I have had so many since chemo and Herceptin - all 3 of my docs - onc., gyno and GP blame it on the treatment and the vaginal atrophy from "instant chemopause".  Lovely... -

  • LuLu
    LuLu Member Posts: 12
    edited September 2008

    I didn't have Taxotere, but had A/C and with the last three rounds got horrible oral thrush, all down my throat, not so much in my mouth. But I can see that they'd be related.

    I have a really strong suspicion my tiny "rash" looking vaginal stuff is more related to chemo and even candida, like the thrush I had, than the HPV.  But I think you can swab to test for HPV and I'll ask to have that done (don't know why the gyno didn't do this). If it's HPV, I feel like I need to know it for certain.

    I have had vaginal yeast infections before that didn't produce much in the way of discharge, just pain. And I suspect that's what this is. I was just so blown away by her quick diagnosis yesterday that my brain went numb and I didn't argue or push for a swab. I hate it when the mind goes mush like that in the middle of a dr. appointment.

    Also, vaginal atrophy... is that the dryness or is that the tightness? Because I feel like there is a tight rubber band inside me preventing penetration (and pushing things just leads to horrible pain). Is this what is meant by vaginal atrophy or is this something else ... like vaginismus?

    I hate waitiing for appointments. And how silly that I am as anxious to get answers to this as I was when waiting for the cancer dx. Why is sex so important? But it was just really alarming to be told to wait three months for sex, when chemo already gave us such a long dry spell ( no pun intended). Seriously ... I've had sex about 3 times in the last 4 months. And the gyno said I'd be waiting three more.

    Gotta go find that "I want my mojo back" thread ...

    Three days until the onco appt., 7 days til the GP.

  • lisa39
    lisa39 Member Posts: 8
    edited September 2008

    I didn't get mouth sores, but DID get vaginal sores.  And boy, did having sex ever hurt!  DH and I had to abandon penetration and switch to other ways to get down for a few months.  Several weeks after chemo ended, the vag sores went away.  I did take epsom salt baths to soothe the area. 

  • LuLu
    LuLu Member Posts: 12
    edited September 2008

    Thanks, ladies. My oncologist confirmed they are vaginal sores from chemo, not herpes/vaginal warts, and he said that I have vaginal atrophy. Dang that stupid gyno for giving me such unnecessary extra stress about it, thinking I had an STD after 14 years of marriage. And do you know what she said to me on her way out the door after giving me her wrong diagnosis last week? "I know. You've been through so much."Yell

    Thank God for my onco. He is going to let me use a little Estroven, just temporarily, to try to reverse the atrophy. But I will try the epsom salts for the sores. I just started my Tamoxifen today. Ugh. I hope the atrophy is reversed soon and the sores disappear. Thank you for the encouragement. I hope it will be a few weeks healing for me as well. Sure sounds better than the gyno's stupid "3 months without sex" advice.

    Is it just me or shouldn't a gynocologist be educated about the effects of chemo on a woman's vagina? I know she isn't an oncologist, but really ...   And, yes, I will not be going back to her. I'm done with her.

  • Roya
    Roya Member Posts: 16
    edited September 2008

    One thing I have noticed is vaginal dryness.  I find that now I absolutely must use a vaginal lubricant for intimacy.  Since this has started almost concurrently with receiving chemo I have assumed that it was the result of the chemo.

    Thank you for writing about these other symptoms.  If they do occur then I will be less anxious about them.  Thank goodness this is all temporary!!!

    Thank goodness for this forum.  It is an absolute lifeline!!!!!!

  • LuLu
    LuLu Member Posts: 12
    edited September 2008

    Roya, we were diagnosed the same month! Will you be done with chemo soon? I was done about 4 weeks ago.

  • Roya
    Roya Member Posts: 16
    edited September 2008

    Hi Lulu,

    Even though I had no lymph involvement and clean  margins, the docs wanted me to do 4 rounds each of A/C  and Taxol.  I think because I was triple negative.  Triple neg is very aggressive so they wanted to fight it aggressively.  I still have to do the Taxol starting   the first Friday in Oct.

    I will start the radiation in January........so far.  my lumpectomy was in June and I started chemo in August.

    When did you start your chemo?

  • tbird57
    tbird57 Member Posts: 50
    edited September 2008

    Hi everyone,

    Thank goodness for this thread.  I start TCH chemo on 10/3 and I've been so worried about this issue.  My dh has been through so much with me and is a gem.  Being able to be together in one way or another is so very important to us, and I'd really hate to lose it when we need it the most.  I'm praying hard that I don't have this SE, either oral or vaginal.  What do others do if this happens?  Lisa, what other ways worked for y'all to "getdown"? 

    Prayers and blessings to all,

    Teena

  • LuLu
    LuLu Member Posts: 12
    edited September 2008

    Teena, wanted to suggest you run a search for the "I want my mojo back" thread ... it's like 65 pages of advice on libido and sex during treatment. I discovered it after I started this thread. I haven't read it all, but there is some good advice there. I know ... it's important to be able to make that connection when you feel up for it. It sucks to have your vagina not be "in business" when you are!

    My oral issues weren't so much the chemo sores some women get as a yeast infection down my throat--like thrush, that babies get. It was awful. But the cure is easy. It's Diflucan, the yeast infection pill women can take for vaginal yeast infections. Fixes them both! So keep an eye on your throat too--like you don't have enough to worry about. Vagina, mouth, throat ...

    Roya, I was diagnosed in May, but I did a double mastectomy the same week and had to recover before chemo. Then I did chemo for all of July and August. Just four rounds of A/C, but it screwed me up royally. They caught my IDC in Stage 1 but the entire breast was full of DCIS --long story, I've been high risk for 3 years, I was tired of the ups and downs, I wanted them off asap once I found out it was cancer. But my IDC tumor was hormone receptive, so today I started Tamoxifen--I'm in for five years. I'm having genetic testing to see if I need to get rid of my ovaries. It's a bummer. But I feel blessed it was all caught early, I was being watched closely.

  • Roya
    Roya Member Posts: 16
    edited September 2008

    Lulu, thank God that this was caught very early!!!  If my BC returns, I have also decided to just go for a mastectomy.  Have you written about your story somewhere that I can take time to read it?

  • LuLu
    LuLu Member Posts: 12
    edited September 2008
    Roya, I sent you a PM to tell you my story. Smile
  • Roya
    Roya Member Posts: 16
    edited September 2008

    Thank you Lulu

  • cupcake7
    cupcake7 Member Posts: 321
    edited September 2008

    Hello:  I am usually on the Carboplatin/Taxotere/Herceptin thread, but when Tenna mentioned this I had to come on and read your post.  I am so grateful cause after talking to my ONC that knows nothing, my GYN that knows nothing I thought it was in my head.  I too have the painful intercourse issue with dryness and glad to know it is not in my head,but a real problem.  I figured if you get mouth sores, throat, the entire digestive system why in the world couldn't you get them in the mucus area of the vagina area.  I cannot believe all the health personal on this end acts like this is all new.  I am printing out your remarks and intend to take them to my next visit.  Thanks guys....My lil susie biscuit will appreciate all your suggestions...

  • LuLu
    LuLu Member Posts: 12
    edited September 2008

    Cupcake, glad this thread helped.

    And, ladies, my gyno be damned, I had *penetration* last night, just 2 days into the Estroven. And I felt like a virgin, but it didn't kill me. Nothing like before, trust me. It made ALL the difference, in JUST two days. The sores are completely healed, it's just a matter of stretching and lube now. (TMI??)

    So ... now I have to try and deal because I'm not supposed to use the Estroven all the time, only when things are really bad. But I'm sooo encouraged!

    Hmmph. Genitals warts, my a$$. (not that there's anything wrong with that)

  • AHepburn
    AHepburn Member Posts: 1
    edited February 2014

    Find a gynecologist that is a better match for you to start. Unfortunately HPV is extremely prevalent. More than 85 percent if population carries it. Its all a big family of wart viruses and some just happen on genitals where we are less likely to accept them. All extremely common but not talked about.

    You and others can silently carry papilloma viral types for decades and present with symptoms out of blue and especially when immunosuppressed. 

    None of this is to blame on your gyno, a virus or a marriage. Just complication of the us as organisms living among other organisms. 

  • Why2015
    Why2015 Member Posts: 14
    edited June 2016

    I noticed many bumps in the area outside vagina and in creases of legs. I believe from Herceptin. The vaginal dryness is so painful; the most odd feeling up my vagina. I couldn't imagine what it was, and then I guess who knows it could be atrophy? Having a breast cancer diagnosis is like living through hell on earth! I wish you all strength and resolve

  • three17
    three17 Member Posts: 2
    edited July 2017

    I am five years out of BC and two years out of ovaries removed. Switched from tamoxofin to Arimidex. Thats when the vaginal issues started. I am in so much pain i want to rip my vagina out. I am single and the thought of intimacy scares the hell out of me. When i have had sex i bled, and have sores in and around my vagina. I had STD testing all negative thsnk God. But this pain is unbearable. I have a cut at the tip that will not heal. Bleeding if i wipe too much, burning that makes me cry. I see the Onc on Tuesday. And scheduling an emergency appointment with Obgyn. Any suggestions please.

  • lam64
    lam64 Member Posts: 2
    edited February 2020

    I just finished AC regimen q2weeks x 4. Having severe vaginal and anal burning. No bumps but red irritated areas. Med onc gave me Valtrex but not sure this is viral or just normal from chemo. Anyone else had this issue

  • Dubhain
    Dubhain Member Posts: 17
    edited October 2020

    My issue is nothing like you alls', but was wondering if anyone can answer my question. 2 weeks after my 1st AC infusion (mid-August) is when my hair loss started. So, at this time I decided to groom the vaginal area with a straight razor. I'd heard that chemo can cause sensitive skin, and I ended up with what I believe is a kind of dermatitis, with white, itchy bumps in the shaved area, still existant. I've been using hydrocortisone cream, but it doesn't seem to really be working. Another far-fetched theory; is it possible that chemo in the urine could cause a rash out the outer vagina? Anyone ever this rash issue? I've emailed both my nurse navigator and PCP for advice on if I should have it looked at. Thoughts? Thanks.

  • minustwo
    minustwo Member Posts: 13,002
    edited October 2020

    Dubhain - nothing to do with Chemo - but grooming your vaginal area with a straight razor can cause itchy bumps at any time. I don't think I'd put hydrocortisone cream in that area. This is really a dermatologist question.

  • Dubhain
    Dubhain Member Posts: 17
    edited October 2020

    Thank you MinusTwo. A dermatologist makes more sense. I never got a rash pre-chemo.

  • Jekraus
    Jekraus Member Posts: 1
    edited June 2021

    Thank you Lulu for starting this forum! You described exactly what I have. I have been to my Onc and been to a gyno 3 times with no help but a estrogen cream. Didn't help at all. Was not happy with gyno so oncologist directed me to a new one for a second opinion. I went last week and she prescribed a steroid cream. I hate creams. They seem to be a waste! At any rate, she did swab my vagina and I will call tomorrow to see if there is bacteria. Intercourse is so painful! I need to get this figured out since I've been dealing with it for over 2 months and no one has an answer. Come on..BC has been around forever so why wouldn't they have this vaginal thing figured out. I will take this forum to my next appointment to get some relief. So happy to find this as I could not sleep last night. I'm on radiation and HER2 chemo at this time. Hope to be cancer free Jan 2022. Thanks again. Informative forum.