I think I may have said this before but here goes. I was totally unprepared of the effects of a total hysterectomy with the, what I call it, de-plumping of the vaginal lips etc. I mentioned this to the oncologist this week. He looked totally shocked with my frankness, but I told him he should tell his patients before hysterectomy the effect of losing estrogen to that area. He said no one had ever mentioned this before (?). Am I the only one who has experienced this? He said after a few months of remission he would see about getting something prescribed, Estradiol, maybe, for that area. Any feedback on this? I am (was) an active 61 year old woman sexually, married for 43 years, and don't want to give sexual intimacy up just yet, but it has affected me to a degree. Any feedback on this?
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"De-plumping" of "it" - vaginal area
- By mawmaw4
- Posted March 13, 2009 at 9:51 am · 39 replies
- In Side effects of treatment
- Shared with the public
Explore topics in this discussion:
Exercise Cancer Surgery Back pain Ovarian cancer Chemotherapy Menopause Carboplatin Premarin Hysterectomy Diabetes Breast cancer Pain Weakness Memory Insomnia Estradiol
39 replies
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- Newest first
- By nana55
- Posted March 13, 2009 at 8:48 pm
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I would really think twice or more about taking any kind of hormone.
- By peridot
- Posted March 13, 2009 at 11:19 pm
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Yes, I have experienced this. I am only 48 years old and had the sugery when I was 44. It was like aging 30 years. I can tell other differences, too. My "bottom" seems to get flatter and my waistline larger. Supposedly, that is another effect of no estrogen. As I have never had a good remission, my doctor would probably never go for any estrogen for me.
- By viki
- Posted March 14, 2009 at 2:41 am
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The mundane KY-Jelly can be quite helpful..
- By MarthaMcQ
- Posted March 14, 2009 at 7:56 am
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Hi Mawmaw, One effect for me of the loss of estrogen was a urethral prolapse, a little bulging of tissue at the urethra. The urologist called it a caruncle and prescribed Estrace or estradiol. It's a cream I apply to the vaginal and urethral area. (If you use an estrogen cream you do not want to expose your husband's penis to it as he can absorb it and it can have a negative effect on his ability to have and maintain an erection.) My gyn onc had to approve and he did because my particular ovca did not have hormone receptors.
I have also used vitamin E capsules which I snip and squeeze into the vagina and I have used jojoba oil for the external genitalia. There's no way around the fact that I am in an aging body but these efforts help me to feel better and keep that sensual awareness which is a nice part of being alive, sexually active or not.
There have been other threads on this site with very explicit advice for returning to sexual health which you might want read. I wasn't interested in that but I do like for my vaginal area to feel healthy and not so dried up.
Blessings,
Martha
- By Shelter
- Posted March 14, 2009 at 8:56 am
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Mawmaw...
I asked my Oncologist this same question last month...
as I noticed, mine have shrunk.. to almost nothing I feel like I am prepuberty like a litte girl...
Perhaps some paitients dont want to ask this question, or feel embarressed..
but I did ask...
the otehr thing I noted was.... the clitorus has almost disapeared like shrunk inside...
prob the same reason, I mentioned this... also
He had no comment.
the are above... pubic bone has gotten puffy??
I asked at last appointment.... if this should be a concern, as I had pressure on pelvic floor again
the Resident Dr, listend while I tld her about this... but she had no response as to why or what it might be...
we know our bodies shape, & details, and can tell when they change...
wondered if any one else had this happen to them too after the full radical hystorectomy...
- By Shelter
- Posted March 14, 2009 at 9:05 am
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oh ps: I am 48, will be 49 in May
had surgery Oct 29/08
Also been hainvg "pain" in bladder area/ infection ruled out , my Family Dr. thinks its all realted to Gyny Prob...
she emaield my ONC, and asked him to look into the pressure & the pain I am having this past month
- By Martha2
- Posted March 14, 2009 at 9:09 am
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Regarding the comment about not exposing your husband to estrogen cream: It is not true. It does not have any effect on a man's ability to have or sustain an erection. My source is my oncologist.
- By mawmaw4
- Posted March 14, 2009 at 2:17 pm
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Shelter, everything you said - it is me! The clitoris has shrunk, etc. I asked the oncologist about all this - his eyes got as big as half dollars and he literally seemed to vbe reaching for the door knob to get outta there!!!?? I said you mean no one has ever mentioned these things before? No, he said. Well, Is aid maybe you need to inform women before hysterectomy what to prepare for - and he is a professor at UK, ob/gyn oncology. I will so as instructed on here and read some other threads concerning these things.
Bev
- By mawmaw4
- Posted March 14, 2009 at 2:18 pm
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Martha2,
I think you are right because I used this about 6 years ago and di not notice any difference with his ability then, that was before menopause etc.
Bev
- By verlinda
- Posted March 14, 2009 at 5:29 pm
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Ladies,
I have found we're supposed to be so grateful to have survived ovca (and I am!) that nothing else is supposed to matter.
Taking hormones is a personal decision, but I really, really, really think taking them is extremely risky regardless of what we're told about some cancers not being estrogen receptive.
In the past two years, I've read one article that vaguely refers to some women experiencing sexual problems. One of my younger friends facing the possibility of a hysterectomy told me she read blog after blog after blog describing sexual problems.
My oncology nurse practitioner recommended Premarin and snidely told me painful pelvics just lasted a brief time anyway. My male gyn/oncologist is wonderfully sympathetic about painful pelvics--they never were before my tumor developed, but I just can't quite discuss this with him.
I'll try the vitamin E, KY jelly does nothing to help. I did ask for a metal speculum rather than the plastic disposable one at my last visit and that was better, though still painful. The gyn/onc said we have vaginal scarring after extensive surgery.
There are some really good posts on here with some ongoing discussion relating to sexuality.
Let's keep letting each other know what works. What doesn't work for me may be great for another woman, etc.
- By zircons
- Posted March 14, 2009 at 6:52 pm
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Agree with all of you. Tried KY jelly and that did not help. My doctor suggested Vagifem, but I am not sure about that. It is a pill that you insert in your vagina once a week. I am going to ask again when I see the doctor next week. Will let you know what she says.
- By birdee_rn
- Posted March 14, 2009 at 9:18 pm
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My Gyn/oncologist prescribed Estrace cream for me, inserted vaginally 2 times a week and it makes a world of difference.
- By birdee_rn
- Posted March 14, 2009 at 9:19 pm
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Oh...and I'm 44. No side effects noted either.
- By MarieBatt
- Posted March 14, 2009 at 10:40 pm
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O.K., here goes-
I'm 30 years old, I had complete hysterectomy and both ovaries & my cervex removed becauce of ovarian cancer. I've been married for only 2 & 1/2 years - so you can imagine that this topic is near and dear to my situation. I don't want a painful sex life with my husband.
My surgery was 1 & 1/2 years ago, and since then, sex has been difficult and painful. After I hit the one year mark, I was getting frustrated (Thank God, I have an understanding, patient husband!!). I told my GYN oncologist that sex is extremely painful for me, but he didn't offer much advice at all. He said use KY, or any other lube. AND he said that it should hurt, because the speculum doesn't seem to hurt me. Now, I like my doctor, but I though this was pretty insenstive.
It was at this point, I figured I was on my own in figuring this all out. But maybe not, because we can all help each other.
Thanks for this thread. :)
- By MarieBatt
- Posted March 14, 2009 at 10:42 pm
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Oops...correct this sentence in above post "AND he said it SHOULDN't hurt, because the speculum doesn't seem to hurt me"
- By AJ70
- Posted March 15, 2009 at 12:41 am
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Marie, I hear you about the painful sex and the insensitive oncologist!! I am "young" also, 38 years old......and had a hysterectomy 4 months ago. Sex is very painful (not that I have been super interested during chemo/recovery time!! HA.) But when we have tried - OUCH - had to stop. It feels like.......almost like it is raw - like I have a blister or something???? I told my oncologist and asked if my vagina was now a different shape or.......? When he did my exam he told me - THERE IS NOTHING WRONG WITH YOUR VAGINA. USE MORE LUBRICANT. Well - it doesn't seem to have much to do with lubricant!! It doesn't matter how much we use. I just don't know what to do or what will help..........?
I have also heard chemo/menopause make the vaginal wall thinner, membrane thinner, more fragile........maybe this is why the pain? It isn't "virginal" pain.........it is different.............
Anyone with more experience.......any advice or hope?
- By sim
- Posted March 15, 2009 at 2:42 am
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Hi u all
I seem to be in the same condition fr the last 2 years since my operation. There seems to be no desire to have sex. I have been on chemo since my operation as i have not gone into remission even once since then. I was very active b4 but now i hve no desire to have sex. The few times tht i hve tried to gives me no pleasure and is painful despite using the jellies. I am now 50 yrs and this part of my life seems no more imp. to me as my whole concentration is focused on how to get better b4 the next chemo. I feel sad fr my husband and i thank him so many times fr understanding. Is there any 1 of u in my situation and how do u activate your sexual drive? Anyone who can advise. It seems strange not to be thinking of sex at all in one's marriage. We been now married for 28 yrs almost.
Regards and prayers
Sim
- By MarthaMcQ
- Posted March 15, 2009 at 7:50 am
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It's not helpful to post that someone else's posting is not true. There can be a nuanced interpretation to what someone is caring enough to share. When I read about the caution to take with topical vaginal estrogen cream and the effect on the male partner it was from the perspective of the male absorbing estrogen through the penis. The advice was to avoid application immediately prior to intercourse. Perhaps this is more of a potential problem for an aging male with decreased testosterone. There's an awful lot that oncologists don't know......
On the desire to increase desire, there is an Eastern perspective on illness that disease is caused by stagnation of energy flow. It may seem a little silly and I'm sure there's an oncologist out there who will say it's not true, but it would help to simply begin moving the pelvic area. There is an exercise in tai chi to increase the pelvic flow of chi that involves sticking your butt out and then tucking it back in while tightening your abdominal muscles. It's a funny looking little maneuver. DON'T DO THIS IF YOU HAVE LOW BACK PAIN. If you do (have low back pain) you should only do minimal degrees of this movement.
Internal application of vitamin E will help restore a sense of genital health and this in turn will help develop sensuality. That 's the first step!
Blessings,
Martha
- By suemac
- Posted March 15, 2009 at 9:38 am
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Hi all,
Very interesting discussion. What you all need to know is that low magnesium levels can lower your testosterone, which is what gives you your sexual drive. Cisplatin can cause magnesium deficiency in 37% of women lasting months and even years. Carboplatin affects magnesium, but to a lesser degree.
I recently found out I have had a lifelong magnesium deficiency, which worsened with age, but had serious consequences after chemotherapy. Twenty years ago in my 40's I told my gyn that I was too young to give up orgasms and for some reason they just weren't happening anymore. He suggested masturbation, which I give him credit for even bringing up, but that's more of a guys solution. Tried it to see if it could help me along during sex with my husband, who had no clue there was a problem, since I'm a great actress! Well, my acting career is going on 20 years and counting!
I did go to a female gyn at the time, who specialized in sexuality. She tested my hormones and told me my testosterone was low (side effect of low magnesium, but none of us had a clue then), suggesting a patch. Since I'm a nurse I didn't want to mess with my hormones because, like everyone else, I worried about getting cancer. Well I got both breast and ovarian anyhow and missed out on 20 years worth of orgasms!
The magnesium piece of the puzzle has to do with the fact that calcium helps your muscles tense up and contract while magnesium helps them relax. Orgasms have everything to do with that process.
As far as lubrication those docs can stick that ky jelly where the sun don't shine. It is not the answer to everything. My husband and I prefer astroglide as an external lubricant, but you must use an internal lube, as well. KY does have a good product called Liquibeads. I call them Magic Beads.
Sex is more comfortable with the internal lubricant, so you can relax and enjoy it more. We realize just like many things have changed over the years, so has sex, we laugh a lot at the extra efffort it takes and all the lubricant on both of us, but just enjoy each other.
I started magnesium supplements in January and for the first time since surgery over a year ago, the vibrator came out, so my testosterone must be inching back up. It has also improved many medical issues I did not know were connected with low magnesium including, insomnia, muscle weakness, cramps and tension, painful hearing, blurry vision, incontinence...the list is endless because magnesium is involved in 325 enzymatic functions.
If you want to learn more about the magnesium connection go to the MAGNESIUM MAGIC discussion. I don't mention anything about low testosterone or sexuality there, because it was this discussion that jogged my memory about that issue. Thanks. The window of opportunity for an orgasm to show up has probably closed for me and is sealed shut. I don't have that expectation, this is a girl that just wants to have fun!
Best of luck,
Sue
- By Dot
- Posted March 15, 2009 at 1:22 pm
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Sue,
Thanks for your post! I was "a great actress" for many years, too. :-) However, my problem was neuropathy caused by type 1 diabetes. The nerves that are associated with orgasm were no longer working. After 27 years of diabetes, I had a kidney-pancreas transplant. A couple of years after the transplant, during oral sex, I suddenly had an orgasm! What a great surprise! :-) I was in tears, and my dear husband thought he had hurt me. Nerves can regenerate, and when the nerves aren't constantly surrounded my too much blood glucose, they frequently do regenerate. I have no noticeable neuropathy now. So far, I've not gotten any from chemo, either.
Now, almost 3 years after my surgery for OVCA, I am still having orgasms during oral sex, but I can't stand to have vaginal sex. I keep searching for something that will help, but it's still too painful, and is it any wonder that our sex drive dies? (I know it's hormonal, too.) I read about the Vagifem, but my GYN onc. says no estrogen of any type. I am going to check my last lab tests for my magnesium level. Thank you for mentioning that!
Losing our sexuality seems like adding insult to injury, ya know? :-(
Dot/Joan
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