Page 2 of 3

Re: Radiation induced menopause

Posted: Sun Jun 18, 2017 6:08 pm
by [Ana & Alex]
Dear fellow ladies post radiation therapy,
I too have hit menopause with 29. What bothers me the most is the colateral damage in my lady parts...

I'm bumping this topic because I can't seem to find an answer to a relatively simple question regarding vaginal rehabilitation after treatment.
I will tell you my story and I would be really grateful for some insight you may have regarding my situation.

It has been really difficult to find information about this topic, none of my doctors has expertise in the area, my radiooncologist and gyn are ignorant regarding this thematic and I'm lost.

Weren't for the advice from our dear weisssoccermom I would still be waiting until this day.

So.. here it goes...
I had radiation in February/ March and have begun during this period with premarin creme and dilation.
Then until surgery I kept up with it 2-3x a week. I was able to have sex (patiently) and a pap smear in that time...

My surgery has followed on 10th May. And since then I have tried to have sex once but it was too painful. The simple aplication of tampon or an ovula is also painful.

It will be six weeks this week after my surgery and I'm already on chemo until November. I don't want to wait any longer, because I'm afraid it will get much worse.

How did you proceed after surgery?

How long did you wait until starting the premarin I.e. starting dilation I.e. having sex?

Were you able to keep up the rehabilitation during chemo?

I'm starting today with premarin ovula everyday for two weeks, then afterwards I'm planning to start 2 - 3 x a week premarin plus dilation.

Good plan?
Thank you so much for your insight!

Love,
Ana

Re: Radiation induced menopause

Posted: Sun Jun 18, 2017 9:22 pm
by Aqx99
Lucky me, my surgeon poked a hole in my vagina during surgery. He discharged me with the instructions of nothing in the vagina for 3 months, to let it heal. I go in September to see my radiation oncologist and she is going to do a pelvic to assess my vagina. I wish I could be more help.

Re: Radiation induced menopause

Posted: Sun Jun 18, 2017 9:50 pm
by weisssoccermom
The Premarin will help bring some 'elasticity' to the vaginal canal BUT....scar tissue has already formed and after that happens, Premarin won't work the same as it would have if it had been used DURING and AFTER radiation.

Once the scar tissue forms in the vaginal canal, it is difficult, if not impossible to break/stretch those adhesions, but don't give up. Things may not be what they were beforehand BUT......with a lot of work, they can get a little better.

For ladies reading this.....IF you are just starting chemoradiation PLEASE PLEASE....DO NOT WAIT until after treatment to begin dilation and a treatment with a cream like Premarin. Most rad oncs/oncologists, etc. don't really pay much attention to this issue.....their reason....it's not a part of their treatment and is 'inconsequential'. However, to the female patient, regardless of age.....the adhesions and scar tissue is anything but 'inconsequential'. It's more than just dealing with our sex life.....it's dealing with the pain, with our sexuality, being able to get pelvic exams, etc. DON'T allow the scar tissue/adhesions to form.....DO SOMETHING PROACTIVELY....PLEASE DON'T WAIT.

Re: Radiation induced menopause

Posted: Mon Jun 19, 2017 11:18 pm
by Cj51
I second Weisscoccermom's advice. Don't wait! I didn't find this forum and her advice till it was too late for me. My gyno opened my vagina during surgery but it still healed closed again. No more Pap tests for me, and sex is painful and rare. I really wish I'd have known then what I know now.

Regarding hot flashes, I'd been taking Fluoxetine (generic Prozac) 10 mg once a day for years, for PMDD. After the radiation did my ovaries in, I figured I could stop. That's when the hot flashes started, so I started it up again. Hot flashes became rare, and much less severe when they did happen. They're inexpensive, too.

Good luck!

Re: Radiation induced menopause

Posted: Wed Aug 02, 2017 2:29 pm
by kal74
Wow I'm starting radiation next week and didn't even think to ask about these issues. What should I be asking my oncologist or doing proactive to avoid female issues? Thanks

Re: Radiation induced menopause

Posted: Wed Aug 02, 2017 5:39 pm
by weisssoccermom
kal74...just sent you a PM.

Re: Radiation induced menopause

Posted: Thu Aug 03, 2017 10:22 pm
by lilmiss82
I had pelvic radiation back in 2009 and was never told about dilation until it was to late. Now years later, I have so much scarring and shortening, no access to my cervix that it makes me so upset that not only did i lose my ability to have children but also have the added benefit that the parts that also contribute to my womanhood were destroyed. Does anybody know of any type of surgeon or surgery that would help this issue? Like a reconstructive surgery or anything?? This happened when I was 27 I'm now 35 and can live like this. I'm on creams and replacement therapy but that doesn't help with scar tissue.

Re: Radiation induced menopause

Posted: Thu Aug 03, 2017 10:35 pm
by MaryannW
I'm following this with interest. I was not told about this by radiologist and now have stenosis and scarring. Sex is impossible and it makes me so sad to lose this in my life along with everything else cancer takes away. I have tried pessaries but not that much difference and dilators but damage is already done.

Re: Radiation induced menopause

Posted: Mon Jul 30, 2018 6:07 pm
by fdcfromkcmo
Topping this thread after an unhelpful meeting with a gynecologist today, who said I'd stumped her and had to go ask someone else.

My radiation oncologist didn't mention anything about stenosis and I've been avoiding reading much online until now (2 months after chemo, 1 day before reversal surgery). I have not been dilating, sexually active, etc.

My gynecologist today asked a doctor who recommended dilators and premarin. Cool, expert advice that I knew going on from googling it! Problem is that the Premarin is $300+/month with no generic and my insurance won't cover it?? She said maybe my sexual function was fine, and I'd find out for sure when I had a partner again.... thanks..?

I've lost so much due to cancer and to lose my sexual function would make me just wanna die. :(
Any advice?

Also i just bought a small vibrator instead of a dilator set because it was about $100 cheaper and that too would have been out of pocket.

Re: Radiation induced menopause

Posted: Tue Jul 31, 2018 8:42 am
by susie0915
I just saw my gynecologist as I was having periodic blood when I would wipe after urinating. I was sure it must of been some type of irritation as it would stop as quick as it started. I tried to look myself and really couldn't tell. My gynecologist had told me that the tissue in my vagina was pretty thin from radiation coupled with normal vaginal atrophy from aging. He examined me and noticed a small lesion and said that is where the blood is coming from. He did prescribe Premarin to just use on the outside of the vagina. (Yes it is expensive). He said because of radiation I am not a candidate for laser therapy that is used to treat the thinning of vaginal tissue. He was going to call a colleague in Cincinnati and see if it was possible to do just on the outside of the vagina. Radiation sure does do a number on us. I have had no problems with pain during Pap smears or sex, so I don't think I have alot of adhesions, but the vaginal atrophy is definitely a problem.

Re: Radiation induced menopause

Posted: Wed Aug 01, 2018 12:45 am
by jedimomof3
You ladies are amazing! I was diagnosed in June of 2018 with Stage 2 rectal cancer at 39. I'm so glad that I read this forum as I was starting treatment. I meet with the rad onc and asked about vaginal problems, he dismissed my concerns with little regard. He told me that I absolutely would go through menopause, and that I would have vaginal stenosis. I started Chemo and Rad, and in the mean time made an appointment with my Gyn. On my seventh day of treatment, I meet with the Gyn and had my IUD removed. After speaking with him, I decided that radiation was no longer going to be in my treatment plan and I stopped that day. The radiation onc was not happy with me, and had my chemo stopped immediately as well. I got a second opinion, and my new team decided that I won't need radiation and a much shorter course of chemo if any at all! I'm scheduled for a LAR in 3 weeks. I'm so grateful to have run across this, thank you so very much! I wish you all the best.

Re: Radiation induced menopause

Posted: Wed Aug 01, 2018 9:28 am
by Eleda
Wow, I can't believe Ur radiation oncologist didn't go through all this with u,, esp at a young age,,, Lee ita only now I realized Ur female lol
My oncologist offered to pin my overies out of the way but it would delay treatment,,,
Anyway I was done having babies and figured I was heading for menopause anyway soon so politely declined his kind offer,,,, :wink:

They were adamant on the dilation tho which I have done but not conciderably TBH ( not sexualy active either) but had my own vibrator so prefer that than the hard plastic poles they give u.

I also had my surgery May 10th and I think my vagagay is ok but might be shortened,,, I'll have to actually have sex to figure that one out, and the last thing u want to do after surgery,,, in my care in pictullar as it was a TATME

As for menopause,,, I've had no period since Jan but apart from night sweats which I had already,,, I've nothing else

Maybe I'm lucky or not who knows??

I do have slight urethra stenosis and the urologists put a larger than normal cathather in during my surgery which helped hugly

But appart from my allergic reaction to oxaliplatin I've been pretty lucky

I've had my report. Back saying MMR intact, so means no lynch,,, but is that a preclusion to no kras or BRAF or braf too or no??? If anyone can help on this ?? Didn't want to start a thread for one question???

ADELE X

Re: Radiation induced menopause

Posted: Wed Aug 01, 2018 5:08 pm
by Caat55
I just started Prempro, hormone replacement to help with radiation/ menopause. The thing that really convinced me with a story I heard on NPR about Alzheimer and hot flashes. According to the story, the brain doesn't like hot flashes, actually can cause some damage so hormone replacement briefly in early stages is beneficial. It has also seemed to help with sex, tissues, and pain. My gynecologist said she had seen worse damage and thought with hormone and practice :oops: it would get better.
s

Re: Radiation induced menopause

Posted: Wed Aug 01, 2018 7:35 pm
by etaylor22
My onc did not go over this either. The little video glassed over it like it was nothing. When I asked outright, he said "These things rarely happen." Bull shit! Here I am in menopause, almost in osteoporosis, and a little stenosis - but we had sex lite rabbits despite pain, tightness and discomfort. Call it therapeutic. I am pissed though. About everything. I'm 40, no signs, and now here I am. I did refuse more chemo. Scans in 3 months. We will see. I feel lied to and duped. I wish I refused everything but surgery. I'm mad all the time now, about everything. I even almost jumped out of my car the other day because someone cut me off in the drive thru, and then again when another mother rode my ass on the road with her young son in the front seat. I obeyed the rules of driving, and she set a bad example. I'm not usually like this, but I am now. I've gone, what we call, Full Baltimore! And I feel satisfied in the fact that I did get in my Rad Onco's face about dismissing my concerns. He's an ass. His penis should appreciate the fact that I appreciate my husbands penis, and asked the direct questions he was not willing to discuss. He's an ass. I never went back for a follow up with him - even though he is a good rad and shrunk my tumor to an unmeasurable entity. He's an ass. Menopause - still sweating my ass of here, tits have shrunk, and sagged, skin has spots, skin is just weird saggy, and I'm just pissed. Did I mention I was pissed?!

Re: Radiation induced menopause

Posted: Sun Aug 05, 2018 1:12 pm
by Aqx99
I am a little more than a year past my surgery and the menopause is still going strong. I had hoped that having my ovaries removed would have meant it would go quickly, but I do not have that kind of luck. My next medical adventure is a bilateral prophylactic mastectomy. My lifetime risk is too high, I want to cut that down by 90%. I'm kind of looking forward to not having to wear a bra anymore.