Questions for women with hysterectomies

ocalalaurie said:

I don't think any of us
I don't think any of us should be taking hormones, as they can cause more problems. Not sure of your age range, but when I had my surgeries it through me into immediate menopause. I still deal with hot flashes, but I've gotten used to them (no way am I saying I like them though!)
I've heard of a common problem of dryness down there, but I haven't noticed that. That may be due to the other side effect: no drive what so ever.

Weight gain could be another issue after hysterectomy.

I guess you could just ask what you said here: "what to expect for the future?"
That's a good lead-in and may open the door for further discussion.

You may search online for "after hysterectomy for cancer". That may offer some info to ask about at your appt.

Best to you.

no hormones
ask about relief from early menopause. scar tissue, pelvic pain,there is also a site calledhystersisters thay can give you more advice...val

Hissy_Fitz said:

You could not pay me enough
You could not pay me enough to take hormones. I took estrogen, at my doctor's urging, for almost 20 years and I truly believe it contributed to the cancer.

Currently, my PCP and my gyn/onc both say I don't even have to have a Pap smear because I'm getting CT scans every 3 months - pelvic, abdomen and chest. I get my mammogram on time, religiously, however.

The surgery throws you into immediate menopause, so you may experience hot flashes, dryness of the vagina, and other symptoms. The hot flashes will pass on their own, and the vaginal dryness can be treated with any number of lubricants available at your local pharmacy.

PLEASE do not take any hormones, even the creams that contain estrogen, without talking to your gyn/onc first.

Carlene

Hidden hormones in cosmetics
I am very leary of using "anti-aging" face creams and other cosmetics as many of these products have substances in them that mimic hormomes--that's why the skin looks good from using them. The substances listed in the ingredient list on the label aren't even recognizable as the hormone-like substances that they are.

I have done hormone testing on men who showed up super high in progesterone (their symptoms were depression and fatigue) and it turns out they were getting the hormone from a skin care product...so just be careful.

Non-organic dairy products have bovine growth hormone in them--not good for anyone who is trying to stay in remission. I usually end up eating vegetarian (non-dairy) foods only if I eat in a restaurant.

I found that vaginal dryness/discomfort during intercourse was MUCH worse during chemo--apparently, the chemo affects ALL mucous membranes. Those problems improved alot after I stopped chemo.

Radioactive34 said:

Thank you all, I was able to
Thank you all, I was able to ask some interesting questions. And even found out more had been removed then I thought. I am at a loss about the hormones because my cancer is not the norm OVC and not estrogen affected. My onc ob/gyn deferred to my interal med oncologist who said it was ok to prescribe some for me. At least concerning vaginal dryness.

Though I pick it up at the pharmacy and it comes with the breast cancer warning. I am at loss right now. Despite being NED, I still feel like a dead woman walking. My mutation means constant exams. I have no cancer but I am already getting pushed towards more radical treatments.....just in case. It feels like the breast cancer warning does not matter, I am still expected to die of this other mutation faster than the norm.

It is a crappy place to be.

Don't Do It!
Radioactive,
Please don't use the hormones. My cancer also was not affected by estrogen, AND my medical oncologist prescribed an Estrodiol patch for me, when I was experiencing menopausal symptoms during chemo. I started working with a naturopath a couple of months later and she got me off that patch ASAP. She said that she has attended cancer conferences where the experts say that the sensitivity to hormones related to tumors can change. So although your cancer was not affected by hormones, your chemistry can change and you could start producing tumors that are affected by hormones. I recently talked to my gynecological oncologist about hormone replacement, to address my bone loss issues. He said he is REALLY against it. He had a patient who was in remission for 17 years. Then her medical oncologist gave her hormone replacment, and her cancer was back within 6 months.
Radioactive, I don't know whether you have kept up on any of my posts regarding integrative treatments, supplements, and diet, but you have a lot of options available to you. My medical oncologist recomended a double mastectomy to me due to my BRCA1 mutation. I have mulled it over and talked to my naturopath about it. I've decided that what I am doing should really keep all cancers at bay, so the surgery is not necessary. My naturopath says she has breast cancer patients who had the surgery done as a preventative, but they got breast cancer anyway due to their diet and lifestyle. We really DO have options.

Radioactive34 said:

I have read and listened to
I have read and listened to you all shout no way to hormones. I am looking at the little tube in my bathroom thinking it was a waste of money. And kicking myself for not listening. It is just hard when you keep hearing you do not have regular OVC. This medication is OK.


What other alternatives can I use for vaginal dryness? What are those premeasured little tubes?

OKAY, HERE GOES. . .
Vaginal dryness - no hormones for me, which ruled out the Premarin that the doc initially gave me to use after my first diagnosis - raised the CA125, so none of that stuff

Vaginal atrophy - well, what you don't use you lose, so-to-speak. Hate to be blunt, but keeping active as long as you possibly can helps. Either way, you will experience some atrophy just because of the normal process of menopause, dryness, etc.

Lubrication - tried them all - creams, gels, etc. I am at a total loss.

Libido - Definitely down, down, down. I'm sure the hypothyroidism doesn't help, but I hardly get those 'excitement butterflies' anymore when I remember all the discomfort, pain, and inabilty that I have.

I'm sorry to have been so forward. But just felt the need to vent while trying to offer some of my own experience. I've even tried to get into some trials that talk about all of this and claim that there will be 'no hormones' in the trial. But when the application asks if I've ever had a gynecologic cancer before, I don't qualify.

My best to you, and hope that you find some good answers and success with whatever you try. Please share your results!

(((HUGS)))
Monika

Tethys41 said:

I'll ask
I will ask my naturopath about this. She was ranting to me once about the cancer survivors who are given hormones to address vaginal dryness when there are natural alternatives that do not risk aggravating the cancer. I will let you know what she says.

PLEASE DO REPORT BACK TO US!
I would love to know what advice/remedies she has to offer. I'll be waiting to hear!

Monika

Tethys41 said:

I'll ask
I will ask my naturopath about this. She was ranting to me once about the cancer survivors who are given hormones to address vaginal dryness when there are natural alternatives that do not risk aggravating the cancer. I will let you know what she says.

Vaginal Dryness: The Continuing Saga
So my naturopath responded to my question with three suggestions:

1. Cimicifuga Vitamin E suppositories - I believe Cimicifuga is the brand name, and it may have other ingredients besides the vitamin E, possibly the herb, black cohosh. I tried to look this product up online and there isn't a lot of information, but from what I can decipher, you may need to obtain it through a naturopath or integrative doctor of some type. However, in my search, I came across a website www.hystersisters.com (cute, huh?) and there are posts about using vitamin E suppositories for vaginal dryness, and it sounded like there are other brands that are more easily obtained. I see Val mentions this site earlier in this post.

2. Organic comfrey oil used topically. Pretty self explanatory.

3. Direct quote "and, for really frustrating cases, short bouts on estriol (protective estrogen)suppositories." Emphasis on the short bouts, and note this is "estriol" not "estrodiol." Two very different forms of estrogen.

So, these are the options available to us without increasing our cancer risks. Sorry I couldn't get them to you before the weekend was over. Hope they come in handy next weekend.

Tethys41 said:

Vaginal Dryness: The Continuing Saga
So my naturopath responded to my question with three suggestions:

1. Cimicifuga Vitamin E suppositories - I believe Cimicifuga is the brand name, and it may have other ingredients besides the vitamin E, possibly the herb, black cohosh. I tried to look this product up online and there isn't a lot of information, but from what I can decipher, you may need to obtain it through a naturopath or integrative doctor of some type. However, in my search, I came across a website www.hystersisters.com (cute, huh?) and there are posts about using vitamin E suppositories for vaginal dryness, and it sounded like there are other brands that are more easily obtained. I see Val mentions this site earlier in this post.

2. Organic comfrey oil used topically. Pretty self explanatory.

3. Direct quote "and, for really frustrating cases, short bouts on estriol (protective estrogen)suppositories." Emphasis on the short bouts, and note this is "estriol" not "estrodiol." Two very different forms of estrogen.

So, these are the options available to us without increasing our cancer risks. Sorry I couldn't get them to you before the weekend was over. Hope they come in handy next weekend.

NOTE ON BLACK COHOSH
Thanks for all the tips! Just wanted to raise a red flag on Black Cohosh, as it is on my list of 'herbal no-no's'. You may want to research further, but I definitely don't use any of it. However, I will look into the other recommendations. Thanks!

Monika

Hissy_Fitz said:

Has the FDA removed their
Has the FDA removed their ban on Estriol?

FDA
The FDA banned Estriol in 2008, responding to a citizen complaint submitted by Wyeth, the phrmeceutical company that produces synthetic hormones, because they were losing business from women who were opting for bio-identical hormones. Shortly, thereafter, however, Congress, responding to numerous protests, asked the FDA to reverse their decision.

Radioactive34 said:

I checked on all three
I checked on all three options. The cimicifuga Vitamin E suppositories seems to be easiest to find online. It did not occur to me to ask if needed a prescription for it. I should have asked....save me some gas.

The organic comfrey oil was difficult to find because it came in an ointment with other ingredients. The oil by itself tended to come in an alcohol base, which would defeat the purpose and dry me out more.

I checked on the estriol suppositories and after a few shops it occurred to me to ask if I needed a prescription....which I did.

This area is big on organic medication. Portland, OR should have more available so I will check into the suppositories there.

Thank you for the suggestions. I keep looking at the Premarian cream on my counter, wondering if it will bite from the baggie it is in. Lol, it is sitting tucked away like a soap opera pregnancy test.

THANKS FOR THE ONGOING INFO
I'm going to check out some of the suggestions. I also wanted to mention that I get mail often from HysterSisters. I have used one of their products (can't remember the name but it was an oil/lubricant, natural) that is supposed to offer some relief from dryness. It did help, bu again it's very temporary and for external use only. So, I'll get back on their website to check out their Vitamin E capsules.

(((HUGS)))
Monika