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Problems with sex after Chemo

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MLindaG View Drop Down
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    Posted: Apr 14 2013 at 12:37am

Just wondering if anyone has any experience with what I'm experiencing.  Diagnosed with tnbc June 11, 2012.  Chemo began July and finished Dec. 20 2012.  Did A/C first round - taxol second round.  Did have a lot of mouth sores. Had surgery in Feb. and started RAD's March - should finish beginning of May.  First time we had difficulty having sex was end of August........extremely painful - felt like someone was sticking a red hot poker up me. (Sorry to be so graphic!) Unable to have sex since.  Talked with oncologist who said it was a side effect of the chemo and to see my OB/GYN.......So I waited until I had completed my chemo and made an appointment.   She attempted to do an exam........which she was able to see what I was talking about but unable to do the complete exam..........She said I had a ring of extremely red, raw and inflamed tissue........everything else looked normal.........She felt it was a yeast infection (Had no yeast infection symptoms) but I was like OK........so I took the pills 3 days apart..........no change in symptoms.  Called back and she said I should go back to my oncologist - I pushed back a bit and she consulted with others and called me back and put me on a yeast drug smaller dose than before for a month.  I have finished that course of drugs and see no difference in things at this point.  Am I expecting things to clear up too soon?  Do I need more time to see if it will resolve itself?  She is talking about hormonal creams next.......not sure if that will be OK with the Oncologist.........Anyone use that?  I am 7 years post menopausal.  Any advice would be appreciated.  Even a web site to point my OB/GYN to......she seems quite clueless.........

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ddspain View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote ddspain Quote  Post ReplyReply Direct Link To This Post Posted: Apr 14 2013 at 12:52pm
Hi !
I am new here and dont know anything to help you...however I am having the "hot poker" situation and I havent even started chemo yet . I assume it is the result of coming off hormone treatment because of the cancer. We tried lube which was a little better but not much.
I am so sorry...I am post menopausal as well.
I anxiously await advice from others !!!!!!


right mastectomy 3-20-13.
1.5 cm
grade 3 tumor
nodes clear
awaiting chemo
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Post Options Post Options   Thanks (0) Thanks(0)   Quote MarissaK Quote  Post ReplyReply Direct Link To This Post Posted: Apr 14 2013 at 1:53pm
I had extreme inner-irritation and vaginal dryness all throughout chemo. My oncologist said bladder irritation is a less common, but normal side-effect of chemo. Intercourse was pretty much unbearable. I did not have an exam, but I had two pelvic ultrasounds because it was so concerning to me. Even the ultrasounds were tough! Everything looked normal. My discomfort started to ease up a couple months out from chemo.  I didn't have a period the entire time I was going through treatment & I think the hormonal wackiness I experienced from that probably contributed to my discomfort. Five and a half months post-chemo my period returned & has been normal and arriving like clock work ever since. I almost feel that my body is back to normal functioning.

The symptoms you're describing sound similar to my experience, it's just that yours is a delayed reaction months after finishing treatment. Those toxic drugs make our bodies behave in strange and unpleasant ways. I don't know much about hormonal creams, as I am pre-menopausal, but I'm guessing your discomfort will subside naturally. Everyone's healing time is different, so it may just take a little while.

Take care.
DX 5/18/12 at age 34. Stage IIIC IDC TNBC, grade 3, 3 cm (multiregional nodal involvement). DD ACT complete 9/5/12. BMX 10/15/12, ALND: 0/12 nodes. pCR. Rads x 25 + 3 boosts completed 2/6/13. BRCA neg
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Post Options Post Options   Thanks (0) Thanks(0)   Quote TriplePositiveGirl Quote  Post ReplyReply Direct Link To This Post Posted: Apr 14 2013 at 2:16pm
Hi Ladies!

What you are describing is not a yeast infection. I went thru this as well after chemo. Depending on your age, chemo can cause early menopause. Symptoms can include vaginal dryness and constriction (shrinkage) to where sex is very painful. You also might feel like you need to urinate more frequently. Unfortunately this did not change for me at all until I started using estrogen vaginal cream (estrodil i think is the name). I am using the lowest possible dose, and it has made a WORLD of difference. I consulted with an oncological gynecologist (mouthful to say that!!!) who said in the low doses that I am taking I am not at risk. Also, because we are triple negative, our cancers are not fueled by estrogen, so I felt better about using the cream. I do highly recommend this, and you all should ask your doctors about it. It has really been a help for me!
Lisa
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Post Options Post Options   Thanks (0) Thanks(0)   Quote TriplePositiveGirl Quote  Post ReplyReply Direct Link To This Post Posted: Apr 14 2013 at 2:19pm
Hi Marissa - 

I noticed that you are only 35 years old, so there is a strong chance that your body will bounce back and you will not go through an early menopause. I was 45 when diagnosed, so unfortunately my body did not completely keep me out of menopause. On the plus side, I have not experienced hot flashes (I hope that doesn't happen!).

Lisa
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Post Options Post Options   Thanks (0) Thanks(0)   Quote TriplePositiveGirl Quote  Post ReplyReply Direct Link To This Post Posted: Apr 14 2013 at 2:24pm
Hi MLinda -

I just re-read your post and saw you are post menopausal. I think that you should look into the Estrodil vaginal cream. It has made a huge difference for me. The nice thing about the cream vs. pills is that you can monitor the dosage (more or less) as you need it. It works pretty quickly and has eliminated the "hot poker" situation. As I mentioned, I consulted a specialist who felt that the low dose of estrogen alone was not putting me at risk. For me this was a huge quality of life issue. Also I was having some bladder issues that cleared up right away once I started using the cream.

Best of luck,
Lisa
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Post Options Post Options   Thanks (0) Thanks(0)   Quote MarissaK Quote  Post ReplyReply Direct Link To This Post Posted: Apr 14 2013 at 3:52pm
I did have hot flashes too, oh and MAJOR dizziness! I googled it and it's actually called "menopausal dizziness". There are different forms of it. I already felt dizzy at times just from the chemo & when those menopausal symptoms kicked in there were times I thought I was gonna fall over I'd get so dizzy! Because of my age my onc did say it was prob only temp menopause though and, as I mentioned, my periods have since returned. The plus side is I don't have any of those symptoms now. The down side - I have to look forward to going through it all over again some day. I guess now I know what to expect!
DX 5/18/12 at age 34. Stage IIIC IDC TNBC, grade 3, 3 cm (multiregional nodal involvement). DD ACT complete 9/5/12. BMX 10/15/12, ALND: 0/12 nodes. pCR. Rads x 25 + 3 boosts completed 2/6/13. BRCA neg
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Post Options Post Options   Thanks (0) Thanks(0)   Quote ddspain Quote  Post ReplyReply Direct Link To This Post Posted: Apr 14 2013 at 6:33pm
Thanks for the ideas. I am slightly ER positive so I am uncertain if that makes a difference. I am learning as I go here. I will be asking !!!!!!

I havent even started chemo yet.....
right mastectomy 3-20-13.
1.5 cm
grade 3 tumor
nodes clear
awaiting chemo
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Silver cloud Quote  Post ReplyReply Direct Link To This Post Posted: Apr 14 2013 at 7:06pm
I am somewhat jealous, at least your husband's are interested, mine has taken a "sabbatical" since diagnosis!
I do hope you ladies find a comfortable solution, sorry I really can't offer anything except I would definitely push your doctors for help. Intimacy is so important in a relationship, especially when we are going through so much and can feel alone and trying to adjust to physical changes.

Edited by Silver cloud - Apr 14 2013 at 8:31pm
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Natalie Quote  Post ReplyReply Direct Link To This Post Posted: Apr 14 2013 at 8:08pm
What a hot topic this is here, and very glad to see it. I have had problems in this department for many years. Up until I had my 2 boys I was fine, during pregnancy I was fine. It was after each and ever since that I have had dryness and lack of urge. I swore there was some hormonal connection for me, but all the repeated hormone tests I had to figure it out all came back normal, which really sucked because I enjoyed sex.
Fast forward to 2011 with my diagnosis, and the beast had to take what very little I had left. Chemo induced menopause since July of 2011. My periods were fine and consistent until then. I had no signs of perimenopausal either. My period never returned, and have all the symptoms to go with it (OH JOY).
I went to a visit with a gyno-onc and he seemed to feel I was not that dry. Did not recommend any creams at all even though triple negative. He felt there are to many studies supporting cancer and hormone treatments. He just pointed me in the direction of supplements first. 
Truth be told, I never went to get any supplements. I was on the fence with the whole thing anyway since my marriage had been a monumental source of unhappiness any way for a looong time. Would have been nice to know if I still had the ability though. Now don't even want to take the chance of being sexually frustrated.
just my own feelings, but wanted to share that I too have had issues since chemo.

TNBC stage1 size 1.8, grade3 no nodes 4/11 Lumpectomy 5/11 4cycles DD A/C 4cycles DD Taxol. Double Mastectomy 12/11 BRCA all neg
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Katdoll Quote  Post ReplyReply Direct Link To This Post Posted: Apr 15 2013 at 12:49am
I had dramatic changes of the type you are experiencing as a result of cancer treatment.  There are solutions!  First, do talk to your oncologist about vaginal estrogen cream.  I know many women who are using it following cancer treatment with the blessing of their oncologist.  I use it and it has made a world of difference.  Second, the book below helped me a lot.  It has a wonderful positive approach and a ton of good practical advice.    Third, consider visiting a woman-owned "sex shop" or website.  Two good choices are Good Vibrations (San Francisco and online) and Babeland (Seattle and New York City and online).  It took me a while to get up the guts to go to call one of these places for advice, and then place an order, but I was so glad I did.  The sales associate was kind and friendly and had a lot of knowledge and experience advising on dealing with post-cancer and post-menopause issues like vaginal atrophy and constriction. 
 
 
Product Details

Intimacy After Cancer: A Woman's Guide by Dr. Sally Kydd and Dana Rowett

 
Tested positive for BRCA1 mutation (187delAG) in 4/09 @ age 44; BSO 9/09; diagnosed w/TNBC in 10/09; 1 cm Stage 1 TNBC IDC, grade 3 + 1.5 cm DCIS; BMX 11/09, nodes clear; chemo (AC/T).
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Apr 15 2013 at 3:28pm
MLindaG,

Chemo creates so many side effects, even to other parts of our bodies.  Your experience is very similar to what I experienced with chemo the first time, which also put me into menopause.  Sexual intercourse was so painful due to the vaginal dryness.  I tried every lotion and lubricant, most of them causing burning, irritation and more pain.  It's been over 3 years for me and I can tell you sex does get better, but not like before chemo.   Someone mentioned coconut oil and I tried it.  It's the best thing that I've found and it works great.  Now this is the coconut oil you buy in the grocery store (bakery aisle).  No kidding.  A jar of organic coconut oil costs about $10.  The consistency is a solid until you touch it/rub it and then it becomes a liquid.  Smells good and doesn't burn or irritate the skin.


DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote TriplePositiveGirl Quote  Post ReplyReply Direct Link To This Post Posted: Apr 15 2013 at 5:04pm
Hi Everyone,

I thought I would add that the cream I use is Estrace (i had the name wrong!). I highly recommend it. I see Katdoll does too. Donna - I agree that the coconut oil is a good lubricant (olive oil too), and tried both, but I needed the Estrace cream as the lubricants didn't help with the constriction issue. Sex was still painful, just lubricated pain...lol (I have to laugh this is kinda funny). Coconut oil and its multiple uses! :)

Lisa
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Post Options Post Options   Thanks (0) Thanks(0)   Quote MLindaG Quote  Post ReplyReply Direct Link To This Post Posted: May 22 2013 at 5:06pm
Big smileHi everyone!!  I want to thank all that gave their advice!!  I finally went to a new gyno and she was fabulous!  She was able to give me a good exam with a smaller type speculum which was painful but not over the top.  I did not have the red/raw horrible skin that I had a couple of months ago which was encouraging.  She feels that I have atrophy.  Here was her suggestions.......1) use replens to add moisture 2) gave me a referral to a physical therapist - she wants me to use a vibrator (small) to move the tissue so that it will get the blood flowing in that area......she also said that I could buy this on my own if I did not want to go to a physical therapist.........I'm trying to figure out which way I want to go on this........seems a bit weird to me..........3) gave me a prescription for lidacaine cream to numb the area at first until things start to feel a bit better 4) gave me a prescription for some type of hormonal cream 5) Always use a lubricant..........she suggested olive oil.........but I like the smell of coconut oil and I'm thinking that might be good! LOL  Sooooooo I'm feeling so much better about all this and that I might get myself back to a normal......... She said.........if you don't use it you lose it.......I asked her what I could have done differently or what I could tell my onc if he runs into someone that has this problem.  I had horrible mouth sores throughout both A/C and taxol which relates to the problem in the vagina as both are similar in nature.  She felt that my skin might have completely shed itself which can take a long time to regenerate.  She thought that if I had used the replens throughout the process it might have helped the tissue but she wasn't sure.  I'm going to talk to my onc about it and see what he has to say.  So I'll keep you posted on what I think works and what doesn't and how long it takes.  She told me it could take a while.  Sounds like you ladies knew what you were talking about!!  Wink
Dx TNBC 6/12; age 59; Stage 3, Grade 3; 3.5 cm, 3/10 nodes + chest wall nodes; A/C x4, T x 12 completed 12/12 with PCR, 2/13/13 lump; IMRT Rads x 33 completed 5/22/13 BRCA 1 negative.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote JulieKCA2013 Quote  Post ReplyReply Direct Link To This Post Posted: May 22 2013 at 8:59pm
Thanks for the information!   I am halfway through so I will heed your advice.  Good to see you smile and not so frustrated.  :) 
Dx 3-7-13 TNBC, 5cm pT2N1M0
3-19-13 ACx4, 5-14-13 Taxolx4
7-17-13 BMX ypT1N2M0(.9mm) 4/24 nodes.
10-8-13 completed Rads x 30
12-3-13 completed Eribulin Trial
10-18-13, 3-19-14 Bone/Ct Scan Clear
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: May 22 2013 at 11:28pm
MLindaG,

Thanks for all your information.  It will help so many on this forum.  This is one subject doctors really never talk about when they tell you you have breast cancer.  There are so many side effects from the surgery, chemo and radiation and the impact on intimacy should be explained and helpful recommendations offered.

Donna
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote MLindaG Quote  Post ReplyReply Direct Link To This Post Posted: Jun 13 2013 at 11:31pm
Quick update........Went to the physical therapist which just so happened to be the same physical therapist that I went to for checking on lymphodema in my left arm- so it was a little easier since I already knew her.  When I called and they said she would do an internal examine I was a bit apprehensive but it went fine and she feels I have two possible problems - atrophy of the tissue and tight muscles - so we have sessions once a week........believe it or not they can hook you up to the computer and shows you  how tight your muscles are..........so working on relaxing those muscles is an important part of the process.  So I'm very hopeful that this will eventually get better.  
Dx TNBC 6/12; age 59; Stage 3, Grade 3; 3.5 cm, 3/10 nodes + chest wall nodes; A/C x4, T x 12 completed 12/12 with PCR, 2/13/13 lump; IMRT Rads x 33 completed 5/22/13 BRCA 1 negative.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Aug 15 2013 at 9:04pm
LBBC: Let's Talk About Sex (and Breast Cancer) (Let's Talk About It Video Series for Young Women)





Edited by 123Donna - Aug 15 2013 at 9:06pm
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote MLindaG Quote  Post ReplyReply Direct Link To This Post Posted: Aug 15 2013 at 9:55pm
Another update!! Big smile  Things are going very well and the physical therapist has dismissed me!!   I am doing the vagifem pill which I am going to continue.  Things are good.......some discomfort but I'm hoping that gradually gets better as well.  At least we can do it!!
Dx TNBC 6/12; age 59; Stage 3, Grade 3; 3.5 cm, 3/10 nodes + chest wall nodes; A/C x4, T x 12 completed 12/12 with PCR, 2/13/13 lump; IMRT Rads x 33 completed 5/22/13 BRCA 1 negative.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Jgari Quote  Post ReplyReply Direct Link To This Post Posted: Apr 03 2014 at 7:17pm
Going to get that estrace!! And coconut cream ASAP thanks girls, we need to have some fun through all we're dealing with and thank goodness. We have husbands who are still interested! Lol
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