I WANT MY MOJO BACK!

tangandchris

You look great Seachain!

*sigh* I know you are onto something about the weight, but right now for me it feels like such a huge hurtle. Thanks for the inspiration and the hope!!!

amylsp

You look beautiful Seachain! Thanks for sharing the pictures.

AbigailS. Your problem is probably less to do with lubrication and more to do with the elasticity of the vaginal opening. Practicing with a dildo or vaginal dilator might help to get the opening loosened up and more accommodating to penetration. Try starting smaller and gradually working up towards a girth that is similar to your partner. This method has worked great for me. I had a lot of pain and tearing when I first tried to have sex after chemo. But after a few months of 'practice', penetration became much less painful, though I still frequently use a small dab of Lidoocaine cream at the entrance right before penetration.

PinkWarriorPrincess

Use the coconut oil internally! It's all natural and has healed me likebefore treatment caused menopause!

Frill

Hi!

First off, coconut oil is great!!!! i am so glad I started with it. Every day use is important. I like that it's sort of semi solid. i can put some in before bed and Im still good to go the next day.

One thing the nurse at the "sex clinic" said -- which just to interrupt, I dont think I was sent to thjs elusive clinic, I was in psychiatric oncology. Anyway, she said L-Arginine might help because it increases blood flow down there, supposedly. She also suggested....um, a clit pump, essentially. Has anyone tried that? I got some weights, lol. i havent started using them, just trying to allow some healing.

im holding on to practice makes perfect.

i did message my oncologist that if he didnt want to treat this as a real issue, Id treat myself. prescribe estring. now we have to have a big conference about it

Smurfette26

I swear by coconut oil. Have used it twice a day from the get go.

It's not an issue Dr's seem to take very seriously.

Makes me so mad as it has such an impact on our relationships and our quality of life.

Frill

My body image therapist just explained that the doctor in charge of that clinic went to a different hospital at the end of August and they're still trying to get a replacement. Luckily, they're friends and she gave me her name so I could go see her. I told my therapist that the advice I've gotten here is better than anything they've been able to give.

leftduetostupidmods

Frill, try a "Venus butterfly" or a "Happy Hummer Wanachi". I'll send you a link to know what to look for.

Trvler

Astroglide for sex. I can't imagine trying to have sex without using something. THAT would be painful.

Frill

Thank you, Seachain!!!!!!

Oh, I have to tell y'all the final kicker about that "sex clinic" bs. I just got a bill for almost $500 for it. a) Isn't the hospital supposed to check on coverage for this stuff? She has a choice on how to code things and she labeled "sexual dysfunction." If I came out of there feeling like I received information, it would be one thing, but otherwise. No. Just, no.

Smurfette26

Oh wow Frill. A $500 bill for nothing. How rude.

gardengypsy

Frill. That is total bullshit. Don't believe it

Imkopy2

Frill that really sucks I'm sorry...here's what I say to that bill & the advice they gave you

Frill

Imkopy2: I'm right with you. I talk to the MO tomorrow who referred me to her because he doesn't like to talk about sex. Then I'm going to the business office. There's only been two things I haven't agreed to pay for $950 dollars for the PS being on standby - and didn't wind up doing anything because I almost died, and this.

If all she could offer was a clit pump ---- and seriously.....then I didn't need to see her at all.

The MO and I will be going round because I want Estring, or Estrace or whatever. FIx my snatch. No one told me AT ALL in the disclosures that permanent sexual dysfunction could be a lasting effect of chemo. If he can't talk to women about these issues, or me about these issues, I want a woman MO. I wanted one all along anyway.

Seachain: Thank you so much! I had something like that a long time ago, but not quite. I will definitely be ordering it. I thought you were referring to something else. When it worked - or when I worked more like it, it was a-mah-zing. Now - not so much.

Gardengypsy: I agree. I have the most perfect partner and I'm going to get my mojo back. Truly, I think the best therapy has been Seachain's recommendation, and I didn't have to pay $500 ^&*((-ing dollars for it.

Love to you all. I've been teetering on the edge of meltdown. Some days it's not good to come on here, I start OCD-ing and crap. But this thread has completely been a lifesaver.

ShetlandPony

Frill, you know you have a right to get the clinic notes from that appointment as they are part of your medical record. Just be cool when you request them. They might be useful for you in resolving the issue of the bill.

Momine

Seachain, wow! That is a huge change. I would like to say though that even if exercise doesn't result in weight loss, it still improves how you feel about your body, gets some blood and air running around etc.

Frill

I just left the oncologist. He said that the Mirena didn't have any effect on my periods, it was menopause. I said that my gynecologist said the opposite. The Mirena website says that it stops or lightens periods.

Then he said - no ovary function, no orgasm. I said no one explained that to me. He said that's what happens when there's no ovarian function.

I said I wanted estring, estrace and he said it wouldn't help. Then he said the only thing I could do was be on the pill. I'm a little out there, but I know better than to do that.

Then he was ready to be done with me, like period the end. I'm like.....no.

Then DBF asked if it wasn't all in my head.

So now I have to go back to my gynecologist (regular) and talk to her about this.

Oh! He summed it all up with - have your ovaries taken out.

ShetlandPony: that's a good idea. I think they used to be available online, but I'm not sure anymore. Ill figure that out.

*sigh

Janett2014

Frill,

What?! "Then he said - no ovary function, no orgasm."

That's not right, is it?

Frill

That's what he told me. I think it's a load of horse crap. Then no woman would get a hysterectomy and it should have been disclosed as a side effect of FAC.

I'm changing MOs. My bf thinks I'm making too big of a deal about it. I shouldn't focus on the "small things" and just be grateful to be alive.

Janett2014

Orgasms are NOT "small things."

leftduetostupidmods

Frill,

Fire him. The guy is complete idiot, and probably doesn't get laid much, so doesn't have enough experience to know how women orgasm.

Wildflower2015

Frill, l had a complete hysterectomy 8 years ago. Including removal of both ovaries. I can assure you that did not affect my ability to orgasm. Your doctor is an idiot.

karen1956

Frill....my onc let me use estring....So ask your gyn for an Rx. And I agree with the others about your MO!!

Janett2014

Frill,

Have you checked this out?

Topic: Everything No One Tells You About Cancer And Your Sex Life (in forum Sex & Relationship Matters)

It has some good info.

Frill

Thanks, everyone. I did ask the MO for Estring, or Estrace, or anyTHING. He said it wouldn't help. Lol, he didn't say I couldn't/shouldn't use it, just that it wouldn't help this issue. I'm thinking, I know I'm not a doctor, but I've pretty thoroughly researched this and it CAN help, not in every single case, but it can help. He told me the only thing that would work is a low dose birth control pill. I was on one about 4 months before my DX, but it didn't cause the cancer. My tumor was so big, it was there wayyyyyyy before I started taking the pill again. I hadn't been on it in 16 years. WOW, THE SEX WAS SO AMAZING. It's tempting, but I want to try some safer options first.

I petitioned Tuesday for a new MO. I should hear back within a week as to his decision. The MO I had while I was in the hospital said what KB870 said - that she wished more women would talk as plainly and openly about what was going on with them as I did, because most didn't. She also said that the problems could be addressed if women would discuss what's going on.

I also have an appointment with a real sex doctor - the one that was at my hospital, but left Aug. 31. I should have been more proactive about this sooner, so that I didn't have to pay out of pocket $500 because she's out of network. My therapist said that it would be money well spent -- certainly, but the nurse I saw who charged me that much certainly wasn't.

Janett2014: Oh yes, I've definitely read through that section of the forum. This one just seems to point more to the specific issue and how to fix it. It's been awhile and I never know where I'll learn something new!!

Karen1956: I see my gyn tomorrow - not the onc gyn, just my regular old gyn. I really like her. I am going to ask for Estring, Estrace something. I worry she's going to balk and say it's the MO's decision. I'm just going to say what he said, "I'm not a gynecologist, talk to your gynecologist." And yes, I agree, orgasms aren't small things. It's a huge part of my life. I went from a "meh" sex life for 7+ years (which wasn't really his fault, or entirely his fault) to a guy who could be a gynecologist. I've never had such fabulous sex. I'm just not ready to let that go.

Wildflower2014: My best friend is a nurse and has had an ablation, she called bullshit, too.

Seachain: I completely agree. I didn't want to see him from the get go because before him my treatment team consisted of all women. My BS said I had to go, he's great. Once again, not listening to my instincts got me in trouble. Just using your method has helped more than his stupid - give up, that's it mentality.

So, for those of y'all using Estring or Estrace, which do you think is better? Experiences? Comparisons? Thoughts on putting additional estrogen in?

FWIW, I'm not completely sure it's the body's production of estrogen that's the issue....I think it's all the hormones shot up into the meat, dairy, etc. and things like parabens that cause the problem. I could totally be wrong.

I'll update once I see the gynecologist tomorrow afternoon.

leftduetostupidmods

Frill

No, I don't think you're wrong. You made me think, and I realized that in the past 4-5 years I made a financial effort to buy "clean" (or as clean as possible) products. I also cook pretty much everything from scratch. I don't drink milk (I have a weird type of allergy to it) and all my dairy is actually processed cheeses. I get eggs from a friend who has a ranch on the outskirts of the city. So I think you might be right on point there too. Now I'm wondering if the Atkins diet had anything to do with it too.

Mominator

Hello Frill,

Sorry, I'm a bit late here, but I wanted to chime in that your oncologist line "no ovary function, no orgasm" is total bs.

Before my oophorectomy, I was already most of the way through menopause, but I was still having orgasms. My problems were dwindling libido, increased dryness, and taking longer to achieve orgasm.

After my oophorectomy, my symptoms increased dramatically. The dryness was so bad that sex started to hurt.

{{Edited to make clearer: yes, I could still have orgasms, but the other symptoms were getting in the way. So no ovaries but still very capable of orgasms.}}

My GYN suggested using Replens 2-3 times weekly to moisturize the vagina, using more lubricant before starting sex, and making sure "your husband's penis is also lubed just before penetration."

All of this has helped some, but I would like more improvement. Next I need to start Seachain's suggestion of practice.

The libido is still way behind, but at least we're moving back to enjoying sex again.

Anyway, your MO is wrong!!!

We were November 2015surgery buddies.

Best wishes, Mominator

Mominator

Could we talk some more about Replens, especially those who have tried it (back a page, sorry)...

Tangandchris: maybe it doesn't seem to be working yet because your vagina is so dry. I agree on increasing may help. Have you increased yet? Let me know your results, as I am increasing as well. Also the timing may be an issue. The directions state, "We recommend using the product at least 2 hours prior to intercourse to allow proper moisturization."

Trvler/Allison: you said you just didn't like it. Why is that? How often and how many times did you use it?

AbigailS: you got a white gunky discharge. According to the instruction sheet, "Some women notice a residue or discharge after initial use of Replens Vaginal Moisturizer. This is caused by the elimination of dead vaginal lining cells." It later notes that the discharge should dissipate, and if not, wait an extra day or two between applications. Also you said that it felt like you vagina had closed up. That may be lack of elasticity. Replens is designed to help with vaginal moisture and elasticity.

I've used Replens twice now since my recent GYN appointment. The first time I used it, I felt an good sensation down there, and almost a longing (hello, libido, are you waking up?). The second time I used it, it was just before we had intercourse. Things weren't as dry during intercourse, but I was hoping for more enjoyment.

I since read the instructions more closely and noticed the "at least 2 hours prior" instruction. So today, I'm going to use Replens at least 2 hours before bed time and surprise my husband. Maybe I'll get a pleasant surprise as well.

Plus, lots of lube.

Maybe we'll talk lubes next time.

By the way, I'm really not trying to sell Replens here. I'm trying to learn as much as I can to help it work. It's basically Replens and lube are the only things my GYN recommended that are safe for me to use (BRCA+) and I am desperate to make it work.

Mominator

Lisey

(editted: Ha ha... I have no idea where Peggy's post went... but she was asking about foreplay and what to do now that she can't feel her chest at all. I'll leave this up because it's still great advice.)

Peggy... the best foreplay for women is ORAL Sex... have you husband so south and it'll get you all revved up and even done before he even gets his turn. Now that my breasts are gone that is the new 2nd base for us. I'm grateful my husband is an eager participant.

Logang

My GYN just recommended Luvena for vaginal dryness. Anyone try it? It sounds similar to Replens. She said it is to be used 3 times a week.

Nothing like being told that your cervix looks post menopausal....oh and the word atrophy! Grrrr...Damn Cancer!

ang7894

My OBGYN did proscribe the creams estring etc at my own risk I'm a triple positive but HE also feels quality of life and a marriage. BUT good luck on insurance covering a small tube, mine was 150.00 for a very small tube. And I can not afford it so I get to suffer. I still have all my female parts and will never let them take them. Not going to add to my already problems...