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Female issues

Marynb
Posts: 1134
Joined: Aug 2012

I am reading posts here and I realize that I know nothing about what I am supposed to be doing in regards to my gynecological health. The nurse gave me a diallator, but did not tell me what to do with it. I have not seen an ob/gyn since diagnosis. Is there something I can read about what I am supposed to be doing. I am divorced, so I have kind of ignored that area of my body(blush), if you know what I mean. OK, I will say it- sixty and sexless is what I mean.....lol. What am I supposed to be doing?

mary

Cheyenne's picture
Cheyenne
Posts: 72
Joined: Apr 2012

I had no one help me except the wonderful posters on this board. I ordered my own set of dilators. The instructions suggest inserting for 15 minutes a day and gradually working up to the next size. Lubricant and vaginal moisturizers are also very helpful.

Even if you never plan on having sex again it is important to keep that area open, if for no other reason than the regularly scheduled pelvic exams.

Best wishes to you!

Marynb
Posts: 1134
Joined: Aug 2012

Were there instructions, etc.?

mp327's picture
mp327
Posts: 3072
Joined: Jan 2010

It is very important to use the dilators, even if you are not sexually active. Keeping the vaginal canal open is important so that pelvic exams and pap smears can be done in the future. I use a dilator every day in the shower. Plenty of lubricant is required, then I just insert, take most of my shower, then remove and finish showering. That is the best way for me to remember to use it every day. I ordered a set of 4 dilators from a company called Vaginismus and have pasted their website address here for you.

http://www.vaginismus.com

Using a good lubricant is necessary. I use Astroglide.

Cheyenne's picture
Cheyenne
Posts: 72
Joined: Apr 2012

I ordered from Amazon.com after researching the subject. They had the brand that was recommended called vaginismus. They have a complete kit which is not necessary. The regular kit is around $60 and it does have instructions.

horsepad's picture
horsepad
Posts: 87
Joined: Apr 2012

my radiation oncologist mentioned a diallator to me many months after treatment. I am a widow and hand't even thought about it. Onc. said even with no sex it should used so pap test aren't painful. I went to my GYN for a pap test because I was curious if radiation had done anything to me and he said diallator wasn't necessary, at least for me.

Marynb
Posts: 1134
Joined: Aug 2012

I will order that and also make an appointment with obgyn.

sandysp's picture
sandysp
Posts: 852
Joined: May 2011

We are lucky we had doctors tell us about using a dilator. What I am finding out is that the vagina needs attention. I now use a moisturizer called replens. Then I soak in the bath tub, put lots of lubricant on the dilator and insert it for 20 minutes, turning a quarter turn every five minutes. I have a fabulous Pelvic PT who is also stretching and massaging it during treatment. The right side is inflamed, the left side is spasming, causing other issues for me. Inflammation and spasms in the vaginal area needs to be addressed like inflammation and spasms in any other part of the body. I am very sore after she works on me, but am much more appreciative of women's health issues and the need for self care. She says I will see improvement.

All the best.
Sandy

Marynb
Posts: 1134
Joined: Aug 2012

Hi Sandy,

I never heard of a pelvic pt. How did you ever find out about that?

torrance
Posts: 118
Joined: Jan 2012

I am so glad you have come here for guidance. As you can see, you no longer need to blush! When I finished treatment my rad onc sent me home with a dilator and a prescription for premarin with instructions, sorta. I got my prescription for the premarin, which is a hormone cream that is only superficially absorbed and helps with the elasticity of the tissue as well as moisture. First I tried applying the cream with the applicator and was stunned that I couldn't even insert it. It is about the size of your pinkie finger. So next time I went to the rad onc he sent me home with a smaller dilator. I knew it wouldn't work, it was still much larger than the applicator. The nurses didn't have anything smaller or have any suggestions. I emailed my ob/gyn and asked for advice and she gave me a referral to a pelvic physical therapist. It took several months to get an appointment. I had never even heard of one, nor did I have a clue what they did. Lucky for me, mine is wonderful. I was her first patient she had "treated" due to radiation issues like this. She stated with a catheter to apply lidocaine. I was seven months post treatment and still was not healed and the skin was EXTREMELY sensitive and bleed when touched. With much patience and perseverence things are almost back to normal. I had a minor set back when one of the "tears" became infected, but back on track now. We have had to be rather inventive to get things done. I also ordered my dilators from Vaginismus.com. Depending on your own status will determine where you start and for how long. You will probably need to continue to use them the rest of your life to maintain adequate access to your pelvic vault. I still go to my PT once a week and she stretches and massages and monitors the tissue. You can ask your ob/gyn if she knows of one to refer you to. Or wait until you receive your dilators and see if it is an issue or not. With age and hormone shifts it is normal for there to be dryness and shrinkage. Be sure to use plenty of lubricant and don't force things. Everything will depend on your amount of stenosis and if you have any strictures. All of this can be overcome with therapy. Please do not hesitate to ask, or contact me privately if you want more information.

Blessings,
Joanne

Angela_K
Posts: 374
Joined: Jan 2011

My doctors were very forthcoming with information on how to use the dilator. And since I am among friends, I can tell you one of the first things I did when I returned home from treatment was to order me a medium size vibrator. If I am going to have to insert something in my yahoo for 20 minutes every day, I am going to enjoy it. :)

Peace

(Another note, for those who weren't very well educated by your doctors, I would encourage you can find your voice, speak up and tell them (or write a letter) so that others that follow you can be better informed.)

Blessings to all,
Angela

mp327's picture
mp327
Posts: 3072
Joined: Jan 2010

Angela, that made me laugh and I totally agree!

Good advice to our fellow female AC warriors too!

sandysp's picture
sandysp
Posts: 852
Joined: May 2011

Unfortunately, I do mine in the tub. I fix a nice bubble bath. A vibrator in the tub would cause a little too much vibration!

As you can see, it was Joanne who clued me in on the Pelvic Physical Therapist.
I am so glad this is a field. I felt in the last treatment the massage of that vaginal tissue caused a release of some stored toxins. It was like I took a step backward in treatment time. It reminded me of how a good massage could make me feel worse the day after and then fabulous after that. Same thing. They always tell you to take plenty of water after a massage to wash out the toxins.

I learn so much on this site! Thank you!

Sincerely,
Sandy

loriwolf
Posts: 2
Joined: Oct 2012

Hi All-
I spent time this morning reading many of your posts - as a ditch effort to figure out why, after being 3 weeks out from treatment, I'm still not "myself". How should I know how long this takes, the doctors shake your hand, pat you on the back and tell you that you did great. Out the door you go....
Then in these three weeks i felt like if I just healed and took it slow I would wake up and one day be my old happy, high-energy person. Nope. And now I have no doctors to run my questions by...who do I ask? who will know?
1 - I thought that my vagina was injured with scar-tissue, and that this is why I couldn,t even insert a finger without a shock, and resuming sex with my husand is just way out of the question, despite trying.
2 - never heard of a dilator - why didnt anyone tell me?
3- I am having severe abdominal pain every day recently - so much so that I can not hold down food.
4 - with the weight loss from the treatments and now not being able to eat, i feel that it is adding my lethargy and low energy and fragile frame of mind.
5 - is this all connected to why I feel so blue?

I feel like a puzzle with all its pieces in wrong spots. Who do I pose these questions to?? the oncologist? the radiologist? do I call my ob/gyn?

Thanks for your input.
Lori

mp327's picture
mp327
Posts: 3072
Joined: Jan 2010

I think many of us know exactly how you feel. You perfectly describe what I felt like once I finished treatment. It's a feeling of abandonment. Don't get me wrong, I had and still have fantastic doctors, but their main focus is always treating the disease and not treating the patient as a whole. Post-treatment presents its own host of issues, the most common, in my opinion, being depression or PTSD if you will. I would recommend that you ask one (or all) of your docs if they can refer you to someone who counsils cancer survivors. Perhaps having someone to talk to and pour your feelings out to without being judged will help you. Also, we are all here for you and you can come here any time to vent or cry or whatever you need. As for not being told about the dilator, it probably happens a lot. I think some docs are just not educated about those issues and perhaps some don't want to be concerned with it. We've had plenty of discussions on this site, recently in fact, about this subject, so I hope you've gotten some good information on the importance of using a dilator and how to do so. As for the abdominal pain, I had some of that post-treatment. Sometimes I think it was related to grumpy bowels and them not liking my food choices. Other times, it was almost like menstrual cramps. I talked to my rad onc about it and he told me he thought some of my pain was due to adhesions (scar tissue) which had formed due to the radiation. It didn't seem to last too long, so perhaps yours won't either. Getting dietary issues worked out after treatment can be tricky. Some people have major problems with certain foods. If you think yours might be food-related, keep a food journal of what you eat and tract the results afterwards. This can help you pinpoint problematic foods to avoid.

I would say all in all, what you are experiencing right now is normal for post-treatment. However, I know that doesn't make it any better. Seek help if you need it and be willing to give yourself some time. Things do get better! I wish you all the best.

sephie's picture
sephie
Posts: 543
Joined: Apr 2009

order the dialtors that are recommended on this site. be gentle and use lots of lube... call your gyno and see if they have any dilators first. it takes time to open up the vagina. tell all docs about the throwing up issues. take care sephie

law522
Posts: 37
Joined: Oct 2012

I am just diagnosed 6 days ago AND going out of my mind with the unknown factors . (dont even know what stage I am)

After searching the internet, I was making myself sick with the things I was reading .
I was lucky enough to find this board and all the wonderful sweet helpful people.
(BOOKMARKED it so as to never lose it)

spent a few hours since finding survivors scrolling the site reading and reading and
asking ? after ?.
The search box on top is also a great tool.

I am waiting for appointments but I will tell you, I think anything at all that you have a question about can be answered right here--
WHO better to ask than someone that has survived it, been there and done it?
Remember though that it is important to seek medial attention when needed--
Wishing you a speedy recovery
XO Linds

loriwolf
Posts: 2
Joined: Oct 2012

wow - and you so newly in this could take the time to respond to my post experience whining!
I am so fresh from the experience I know that I can talk to you about this if you would like. It's a whirl-wind experience - pushed from one appointment to the next, just doing what you are told, not hardly thinking of you or your body, just like an automated response to what the medical personal have you doing. It seems to be this way - and you just have to do it, get thru. It really is a solitary journey. You are lucky to have found this site early - you will have lots of truly experienced and empathetic advise.
Thinking of you -
L-

law522
Posts: 37
Joined: Oct 2012

I am so grateful to have found this board.
I have my pad full of ?'s that I obtainined from posts on here
ready to go with me tomorrow afternoon--colon rectal sugeon tomorrow
I am not sure I really want to see this guy or if I should head to a
BIG city?

and Lori--PLEASE keep whining, I am gettting a lot of info on here!!!!

XO
Linda

mp327's picture
mp327
Posts: 3072
Joined: Jan 2010

In your list of questions, I hope you include one asking this doctor how many cases of anal cancer he has seen and treated. You do not want to be his first. Experience with this disease among physicians, even specialists, seems to be lacking in some parts of the country. I would agree that seeing a physician who is in a big city and associated with a large practice/hospital/facility might be a good idea if you get some bad vibes from your appt. tomorrow. Just keep in mind that the treatment for anal cancer is pretty straightforward, as outlined in the NCCN guidelines. If you haven't already done so, please register on their site, print out the guidelines, review them, then take them with you to your appt. I would want to make sure that your doctor is already familiar with them.

I wish you the best tomorrow.

law522
Posts: 37
Joined: Oct 2012

for taking the time to help me with all my questions--your advice/experience along with everyone on this board has truly been helpful beyond belief!

unfortunatly my good pc is getting fixed and i have no way to print off this netbook==
wont be fixed and hooked back up until AFTER my appt. and there is no way I am taking a chance of that coming off the printer at work when my office is 1/2 a office away from the printer--my luck lately the boss will be standing there waitng for something he printed and out comes info on anal cancer OH MY!!! the thought is chilling!

My surgeon that did my hemmy told me that if he was diagnosed as me, this would be his Dr of choice soooo I will see what I FEEL about the dude tomorrow.

and good point about how many cases he has treated I have learned that this cancer is way different than any other--I will ask that for sure! TY

The NCCN guidelines are giving me a problem--I cannot find "anal cancer" anyplace,

Thank you again
XO

mp327's picture
mp327
Posts: 3072
Joined: Jan 2010

If you completed the registration process, all you need to do is click on "NCCN Guidelines" in the bar at the top of the homepage. A drop down will appear--click on "Treatment of Cancer by Site." All diseases will appear to the right. Just go down and click on Anal Cancer. I hope this helps.

7243
Posts: 223
Joined: Feb 2011

Hello my Dear! your insurance should cover decent dilators. See your GYN and you could also possibly benefit from Physical Therapy. My response it late ...I hope all is going well! I'm 20 months post treatment and struggle with vaginal stenosis ... hang in there and see if your insurance will cover dilators!

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