Sex life and a life of HPV

Besides all of the physical problems that I think I will always have from this disease, the diagnosis of cervical cancer has taken away the ability to have a normal sex life with the man I love. In the past year we have had more time when I wasn't allowed to have intercourse than time that I was. Then, when I can, I have had many problems with pain and not feeling emotionally "sexual". We just waited two weeks after I had a surgical procedure and tried this weekend to have intimacy and I felt pain, like I was still bruised, and then there was slight spotting of blood. I couldn't continue. Now I have another surgery scheduled for this Thursday.

I feel very blessed that I do not have vaginal cancer. There could be few things worse for a woman than the loss of her vagina. I am also blessed that I am 45, have 3 grown children and 2 grandchildren. My hysterectomy will not effect my desire to have more children. I can't imagine the pain that young women who desire to have children go through from cancer treatments.

I have shared that I had no idea what HPV was prior to my cancer diagnosis. I had "heard" of it, but did not know the magnitude of the infection rate. Now I am part of a community of people who live with HPV and I spend time every day reading about and learning about this disease.

Life happens while we are living and I have lived a lot over the past year. I can either decide to focus on the sexual problems and physical problems that I battle or I can remember how blessed I am to be alive to have those problems and to help others dealing with worse issues than I have yet had to endure.

By sandbmom0
Posted June 26, 2007 at 12:42 pm
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Hi Mary:

I understand completely the frustration you are feeling. I am only 35 with 2 young daughters and recently had my hysterectomy. From the emotional roller coaster of being diagnosed with cancer to the healing from the LEEP and now the hysterectomy I feel like I can not connect withthe man I love. Don't get me wrong he is wonderful and supportive, but we had a wonderful sex life prior to all of this and now it has been sooo long I can't even remember. To top it off we are both afraid of the pain I may experience when I finally get the green light.

My emotions run crazy from being at peace from the fact that the cancer was removed, to the sadness of not having any more children and the guilt for not being able to have sex. When does it all end? You are not alone in this battle and I find comfort in talking to all of those that have to go through this.

Dawn

By ShaundraNCCC-AZ
Posted June 30, 2007 at 10:45 pm
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Time. All I can say is give it time. I was 28 when I had my hys and only found out I had invasive cervical cancer because my husband and I were trying to start our family. So no kids, and 8 years later, we are still figuring out our (sexual) groove. It's been difficult at times without a doubt, but, necessity being the mother of invention, it has forced us to become creative in the bedroom. I was a bit of a prude before but now I'm more open to trying new ways and ideas because the 'same old same old' just doesn't work for my physically anymore because it's too uncomfortable. My biggest suggestion, is find a female Ob/Gyn that you feel most comfortable speaking about these things face to face. I go to an all womans clinic now (my diagnosing Dr., surgeon, and oncologist were all males and WONDERFUL but...) and you may be surprised at some of the information she may have to share. Remember, you are not her only patient that are going through these things. Fortunatly I am blessed that I live in a metropolitan area (Phoenix) and have access to decent medical care and if I don't like my physician, it is easy to interview others, so I know it has to do with the availability in your area for physicians, but my "Careing for Women" practice that I've begun going to has been extremely helpful in this arena.
Good luck and keep TRYING. Don't give up.
Shaundra

By Suhay1
Posted July 24, 2007 at 3:03 am
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I am a survivor of Cervical Cancer. 10 years ago I was diagnosed and had a radical hysterectomy, with removal of lymph glands.
As I am still here it was a success, but what I did not realise it would take away any feelings of sexual enjoyment. My husband is a very understanding man but it must be very hard to have a wife who now has no interest in sex. I have also put on weight around my stomach and find it very hard to lose it. The alternative of being dead makes me laugh and realise I have little to complain about.
I will get to see my daughter get married in October so I see myself as very fortunate after being told I had 6 months to live. I have also survived Thyroid cancer also, so all in all I have been blessed. The thyroid cancer was not secondary it was a new cancer altogether.
If anyone has found a way to get their libido back, can you please let me know.
On the other hand I think that now I am a better person, my outlook on life is very different, and I hope I survived to do some good in the world. Cancer is only a word not a sentence and I have managed to keep on working throughout.

By flowershoplady
Posted July 24, 2007 at 5:59 pm
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Suhay1, I'm sorry to hear you've lost your libido. Did you have treatment in addition to your hysterectomy? How awful that you were told you had 6 months to live - but how wonderful that they were wrong and you're healthy 10 years later!

I had a total hysterectomy with ovaries removed as well, and I've experienced a significant change in my feelings of sexuality. My libido has diminished significantly. For me, to be honest, once I adjusted to it, I prefer it as I don't feel driven by my sex drive, as I used to feel. I'm more calm, and I really like that. And, I, too, have gained weight around my middle which I never had before - I'm the same weight as before, but there's extra fat in the middle of me! I've talked with other women who have been through menopause, and some of them have had similar weight gain experiences. For us, going through surgical menopause, and without ovaries, we have even less estrogen than others who experience menopause naturally as the ovaries continue to release estrogen even past menopause. And, I've recently learned that heavier women have more natural estrogen than those of us who may be thinner. I've got problems with vaginal atrophy because of the lack of estrogen, and now use vaginal estrogen in addition to oral estrogen. I did not know that having my ovaries removed could have such an impact, and I wish I'd been more informed as i probably would have made a different decision about their removal - but hindsight is 20/20.

Have you spoken with your doctor about the lack of libido? Some women take testosterone to help with this. There are options to be considered. There are even doctor who specialize in hormone replacement type issues, getting hormones 'balanced'. It may be worth researching this.

Again, I'm sorry that you are going through this, and I wish you well.

By Suhay1
Posted July 24, 2007 at 6:56 pm
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Thank you flowershoplady.
I have tried the testosterone implants to no avail. I will try to find a doctor who specialises in hormone replacement type issues. I am from Australia but I am sure we have someone in that field here also. My problem is probably doubled with not having a thyroid either, so not producing many hormones at all. I was lucky that I did not have to have anymore treatment but the operation, I had a wonderful surgeon who believed that removing the lymph glands from my heart to my knees would protect me and he was right so it seems.

You know I guess in the long run we really did not have a choice about what happened in the operation, it was maybe live, or know you would die. Even if we were told all the cons I think we would all choose life anyway. I am at least getting to see my daughter marry in Hawaii this year. My aches and pains well I can smile that I am here to feel them. It is nice to know though that other people have the same problems and you are not alone.

Thank you for the feedback and also good luck for the future

By flowershoplady
Posted July 24, 2007 at 8:10 pm
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and, i wanted to add that though you're in australia, i thought you might be interested in knowing that there's a place in chicago called the berman center, http://www.bermancenter.com/home/clinic.html, which deals with all sorts of women's issues including low libido. i've not used their services, but heard about it. it's very expensive, and, well, it wasn't something i was interested in pursuing. i believe the woman who heads up the center has written books, etc., and perhaps if you contact the center, they could point you to something similar in australia. just a thought.

By ladyluck
Posted July 26, 2007 at 8:22 am
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Well, ladies, I too am in the same boat. I was diagnosed w/ 1b2 cervical cancer at the age of 28. I too had a radical hysterectomy, and underwent six weeks of radiation both external and internal. My husband and I just recently started being intimate, and I think my problems are more mental than physical. Because the last time I finally relaxed and didn't worry about pain and used lots of lubricant and foreplay, and I actually enjoyed it. My husband is a very patient man and he's told me over and over that he wants us to get our sex life back, but the other day was a breakthrough to him because for the first time I wanted to. It is definately not the same but with a little time for healing, and a VERY patient partner who is willing to work at it a little. I think we can all get it back. so, in my case I do believe its more of a mental and emotional problem. I hope this will help you !!!

By aileen
Posted August 9, 2007 at 2:19 am
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More Sex-Related Care Needed in Women with Genital Cancer

NEW YORK AUG 08, 2007 (Reuters Health) - Despite profoundly more sexual problems, long-term survivors of vaginal and cervical cancer have rates of sexual partnership and activity that are similar to population controls. However, most feel that physician care related to sexuality is inadequate, researchers report in the August issue of Gynecologic Oncology.

"Many women value their sexuality as an important part of their health, even in the face of a life-threatening illness," lead investigator Dr. Stacy Tessler Lindau of the University of Chicago told Reuters Health.

"Physicians can have a lasting positive impact on their patients by initiating discussion about the impact of illness or its treatments on women's sexuality. Women typically will not initiate discussion of sexual matters with their physician, but most feel that physicians should do so."

Dr. Lindau and co-investigators came to this conclusion after they conducted a survey of 219 long-term survivors of vaginal or cervical cancer and matched controls.

The survivors were a mean of 49 years old and the median length of survival was 26.8 years. Although survivors and controls reported similar levels of sexual activity, the survivors had more than twice as many sexual problems (p 0.001).

The survivors gave a rating of 8 on a 10-point scale for their cancer treatment. However, the corresponding score for satisfaction with the quality of care and information regarding their sexual health was 5.5.

Although 74% of the respondents thought that physicians should discuss sex, 62% had apparently never had a conversation about the effect of genital tract cancer on sexuality.

Adjusted analysis showed that survivors who had not discussed sexuality with their physicians were significantly more likely to exhibit current sexual morbidity, as evidenced by the presence of three or more concurrent sexual problems.

"These findings," the investigators conclude, "suggest that improved communication with patients about sexuality may help maximize the experience of very long-term survivorship with gynecologic cancer."

By unknown206
Posted January 25, 2009 at 11:26 pm
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I stumbled onto this site while doing some research on HPV. I'm sorry to hear about all the stuff that has happened to you gals but I'm glad to hear that each of you are coping as needed and moving forward in life.

I wonder something, and I know this would be a difficult question to deal with after everything else but would it take any pressure off of you if the men in your life were to take up an additional sexual partner just for the purpose of sex (Your man would still be intimate with you whenever you wanted and you would/could know her and meet her etc, nothing secretive)?

By Oldernwiser
Posted January 27, 2009 at 12:32 pm
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Hello mary,

I'm in my late 40s and was treated for cervical cancer three years ago. I did not have surgery because of the stage of the tumour, but I did have extensive radiation therapy.

Because of the side effects of the radiation and going into sudden menopause, I was not interested in sex for quite a while, and when I was, it was too painful inside for penetration.

In time, I have healed very nicely, and I want to give you hope that healing does occur. I take a low dose of hormone replacement, vitamin A, D, E and green tea extract daily (on the advice of my naturopathic physician and MD), I have used manuka honey in the vagina as a salve, and always use lots of coconut oil as a lubricant, and lots of foreplay, as one other writer suggested.

The thing is, in retrospect it helped our sex life, if you can believe that. My husband had to really slow down, and spent lots of time finding out how I was feeling, doing body massage, and all those things that long-time lovers often don't do anymore. It helped both of us tremendously.

There's a fellow who wrote a reply here who suggested that husbands/boyfriends get another lover. That's a personal decision, but I do advise against it. The woman with cancer needs support and involvement, and if she can handle her pain and body changes and all the distress they bring, then her husband can stand a period of less or no sex. Also, women healing from cervical changes or cancer do not need to worry about any new HPV infections.

Really, if the husband involves himself in helping her feel better in any way he can, physically and intimately, and takes care of his own orgasms, if I may say this bluntly, then there really is no need for another lover.

Patience, maturity and taking it slowly, not expecting a love life to be the same, and being open to the possibility that it may be better in the end, will get you through.

What we need most is to believe in our sexualitiy as being a gift, and precious to us, no matter what happens. We are not unclean or undesirable because of a virus that enters most adults' bodies.

Hope this helps. I'm lucky that my treatment worked and I'm healing. I wish the same for everyone and their families.

By corellin
Posted January 27, 2009 at 10:39 pm
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Thank you for sharing. I'm particularly curious about using coconut oil & honey in the vagina. Is that safe? Are there any restrictions on how much/how often/what kind? And, did your naturopath & MD both think that was OK? Thanks so much for sharing, oldernwiser. I'm glad you're doing so well!

By astrocat88
Posted April 26, 2009 at 9:42 am
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I am confused. I just had a cone and my doctor said no sex for 3 weeks and then to use condoms for a year. But it sounds like a lot of you are abstaining from sex, is this correct? Is it because your doctors told you "no sex"? Truthfully, I am not feeling like having sex right now but it is not clear to me the protocol that some of you seem to be following.

By jamiegirl
Posted April 26, 2009 at 11:26 am
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unknown206 - If your husband/boyfriend takes up with someone else, then THAT person could become infected!!! and...who knows what that other person is carrying in addition???? Doesn't seem like a very smart idea.

By jamiegirl
Posted April 26, 2009 at 11:30 am
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corellin - I'm curious too as I have read about bee propolis and aloe vera being excellent in fighting hpv infection. I had posted a new blog about it but nobody has seemed to respond really. I eat raw honey all the time and have bee propolis too. I have't not stuck it up there yet as I do not know how much, how often, etc., but I take it internally. I believe it should probably be applied topically too though.

By corellin
Posted April 26, 2009 at 1:35 pm
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hi jamiegirl -- I have no idea about the benefits of bee propolis or aloe vera either consumed orally or applied topically. I do know that I've had some bad experiences with "home brew" type remedies, in that, one time, I put concentrated aloe vera and vitamin e on my face where I had a rough patch and managed to cause the rough patch to spread all over. Finally, I went to a dermatologist who gave me a prescriptive cream that cleared up the problem right away. So, who knows... I don't think there are enough studies to really know the outcomes/benefits of these naturopathic remedies. At the least, I would check with a naturopath and follow the care of someone like that who is a trained professional at alternative medicine.

astrocat88 -- personally, I don't think 3 weeks is long enough to fully heal after a cone. Did your doctor truly do a "cone" or was it a less invasive LEEP procedure? I'm asking because an earlier post of yours seemed to indicate that not much was taken off, so didn't sound to me like a true cone. If true cone, I would give yourself six weeks before sex.

In response to your question about abstinence -- doctors and researchers usually say (and believe) that resuming sex after a procedure is not going to result in reinfection. But, there are some studies that indicate reinfection is a possibility. It's my belief that reinfection is dependent on whether your partner is still infectious and whether you have developed immunity to the virus. Unfortunately, there's no way to know either of those things, so, in my opinion, it's safest not to resume sex until you're testing negative for HPV and have a normal pap. That way, you at least know your body is on top of the situation and you've given yourself plenty of time to heal before risking another exposure. But, there's no for sure proof that that makes a difference, so it's really up to the individual -- your own risk tolerance, etc. Your doctor clearly had a reason for suggesting condoms for a year (although that's not the standard doctor suggestion), and I'm curious what reason your doctor gave for that.

In addition to reinfection, there's the more likely possibility that sex can introduce bacteria or some other complication in the healing process (yeast or bacterial infection, etc.). Also, sex can create microtrauma that could be a new spot for an HPV infection to take hold (as could insertion of a tampon, for example). In my view, if you had a sore, would you rub a penis on it? No, obviously. So, I really think an individual woman can best determine when resuming sex feels healthy for her. And, there's the emotional/relationship consideration. Those are all things women need to weigh for themselves with no perfect evidence what course of action is really the best. I just think it's very unfair when doctors tell us just to resume sex without adequately discussing pros/cons and letting us make up our own minds -- especially because our partners will ask us what the doctors say and then hold it against us if we choose another path.

By jamiegirl
Posted April 26, 2009 at 11:33 pm
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I will try to find that link I read about the bee propolis. It was a study that was done that showed that it helped in getting rid of hpv...

By scgirl76
Posted April 30, 2009 at 10:08 am
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Ok...I'm so very confused! This HPV that we have been diagnosed with (mine is 16)...well is it safe to have oral sex? I was given my diagnosis, and surgery date but was too stunned to ask my doc any questions. Next time hubby will most definitely be w/me. Does anyone know if it is safe?
~A

By jamiegirl
Posted April 30, 2009 at 12:04 pm
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Basically, no. HPV 16 has been found in throat cancer patients too. Google "oral cancer and hpv" and you'll find a lot of info on it.

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