Sex with IC and Endometriosis

[HillaryD]

I have had Endometriosis for a little over 5 years now, and just recently was diagnosed with IC. I had a laparoscopy(my 2nd) in Oct of 2003, which didn't help much because my same pain continued after the procedure. About 2 months after that I started feeling like I was having UTI's all of the time but my urine was always normal. I was sent to a Urologist and after 3 months of testing I found out that I have IC, which I am now on 3 medicines for. Needless to say, my sex life with my husband is non-existant, and had been that way for months. I couldn't have a more wonderful, understanding husband, but I feel so bad that we can't be intimate, because that is a big part of a marriage. I have felt so bad for so long now that I don't even want to just have foreplay, because I don't want to get him all worked up and not be able to do anything. I know that there are other things I can be doing, but it isn't the same, and I just feel so hopeless. I just want my usual life back! I know everyone here probably feels the same way I do, it just helps to vent and get it out!

[ICNJess]

Hi Hillary,

I am sorry, I think we all know what you are going through. :( Maybe when you are able to get your IC under control you can incorporate sex back into your life (slowly). Good luck, and know that you are not alone. (For many months my husband and I could not, and we are newlyweds)

Hugs and love,
Jess

[HillaryD]

Thanks Jess for your support! I too started having problems when I was a newlywed (5 years ago) with Endometriosis, so I know how difficult it is to not have sex when you are a newlywed. :mad: I know that I will eventually be back to my old self, but it's hard waiting for that to happen. I am just so thankful that my husband is so supportive and that I have this place to vent my frustrations and concerns!
grouphug

[ICNJess]

Hillary,

I have mild Endo and PCOS, and it is awful pain! :mad: Are you on birth control for it? I take Ortho Evra and that seems to be working well, helps keep periods, well, less painful and shorter. I used to bleed for 2 weeks at a time with maybe only a day or two for light bleeding, and that was near the end of the period! It was so painful, I'd end up, when the cramps would be at it's worst, rocking myself back and forth and almost being physically ill. I'd have to take a bunch of Motrin and knock myself out, which wreaked havoc on the 'ol bladder but back then I figured it was just my period.

The fun stuff us women get to go through, huh? :rolleyes:

Hugs and love,
Jess grouphug

[HillaryD]

Jess,
Throughout my battle with Endometriosis I have had 2 lap's done and have tried BC pills, but my body can't handle them. I have never been able to take them because of the side effects that I get; none of the women in my family handles Estrogen too well. I have tried the BC pills that only have Progesterone, but wasn't too successful with them either. I have always had VERY painful periods that sometimes keep me out of work. Of course, now that I have IC on top of the Endo, my periods are even worse. I have awful pain with ovulation as well now. I sometimes take Percocet for the pain, but I can't take that any longer now that I am on Elmiron, there's not any pain pills or OTC pills you can take with it! :mad: About the only thing I get some relief from is the Playtex heat patches that you attach to your underwear that heat up for up to like 12 hours. I prefer using those to a heating pad because I can't take a heating pad with me everywhere I go. It sure isn't easy being a woman, but then again, I don't think I would want to be a man! lmao Best of luck to you!
Hugs!
Hillary
grouphug

[ICNJess]

Hillary,

Why can't you take Elmiron and pain medication? I haven't heard that one. While I was on Elmiron I was on Percocet for awhile. :confused: LOL and you are right, I'd rather be a woman than a man!

[HillaryD]

I think I was getting confused...You can take percoet with elmiron, I think you can't take it with either Paxil or Atarax, which I am also on. I do know that you can't use Tylenol or anything else that thins out your blood though. Sorry for the confusion!
:confused:

[susie]

Hi Hillary, my name is Susie, I don't post very often, but I do read the boards on a regular basis.
I'm wondering also as to why you can't take percocet while you are on elmiron? When I was giving elmiron a try I still took my percocets for my pain.
Sorry if I'm being to nosey, I just hate to think that your suffering in pain if it could be helped.

Hug's
Susie

[HillaryD]

This is where I read about the Elmiron, but I was mistaken about the Percocet:
http://my.webmd.com/hw/drug_data/d04052a1?lastselectedguid={5fe84e90-bc77-4056-a91c-9531713ca348}

[HillaryD]

I want to thank everybody for all of their help! I don't know how I got so mixed up about the Percocet and the Elmiron, I have been so overwhlemed with all of these new meds I am on that I can hardly keep my head on straight. I will definately use those websites in the future, especially before I start saying that you can't take certain drugs together-I am so embarrased!
:(
I am glad to know that I can take some Percocet if I need it, I have a lot of it left over from 2 surgeries in the past 6 months, and I haven't taken it out of fear of the drugs mixing. Again, thanks to everyone!
grouphug

[ICNJess]

Hillary,

Don't be embarrassed, we were just making sure, and so that you don't have to suffer!!! Take care, and start your pain meds up!

grouphug grouphug

[Katrina]

It is ok I understand how you feel. I have endometriosis, IC, and PFS. I have gone through times in my marriage where sex was impossible. Now we are at a stage where attempting is possible but little success.....but I believe things can improve. Have hope....a big load doesn't mean there is no way at all.

hugs,

[lotsofgirls]

Hi,

don't lose hope. There are ways to get around the pain. I know it doesn't sound good, but you can always take pain meds ahead of time....

Good grief.....just a second honey while I take my narcotic pain med to get in the mood (just kidding) (sorry, I couldn't help seeing the humor in it!!!).

Thank goodness for cuddles....


Take care,
Cath

[holles]

hillary, i know how you feel. literally. :) i sometimes take painkillers before sex. it doesn't always hurt though. lately i haven't needed them much at all.

one thing my uro and my gyn both recommended is sex with me on top. i am in control of where things go and how deep they go. it helps take a lot of the pressure off the urethra. also, :eek: doggie style :eek: saves the urethra from a lot of pain.

oh, and the only thing that's worked for me with the endometriosis has been excision surgery. it's different from lasering the endo because the surgeon actually cuts the lesions out and the tissues that surround it. i had it done in june, and i've felt pretty darn good ever since. it's hard to find a surgeon skilled enough to do it (it's a very risky and difficult surgery), but it's worth it to have it done. i have no regrets. when i had the conventional lap, my pain returned w/in 6 weeks. the excision has been much more successful. it was also a huge help in the bedroom relations too.

good luck.

[momw/ic]

Hey fellow Texan! I, too highly recommend the excisions surgery for endo. I had many laps with the laser and got only temporary relief until the excision surgery. It was a year and a half ago and I have had no endo problems. I lived in Arkansas at the time and flew to San Jose, CA to have the surgery with a doc who specializes in excision. It was definately worth it!

Pam

[ljl765]

This is so sad, and my heart goes out to you. I have been walking in your shoes, as have a lot of us. Try NOT doing anything for a while..I found being.."courted" for a while took off the pressure to have sex and I felt better. Also, never do anything you don't completely want to medicated or otherwise, for anyone, at any time for guily or to "make them feel better'..(sexually) This isn't healthy for you emotionally. If it hurts honor your bodys ouch..be nice to yourself first. Put you first..If they love you they will wait, and if they wait they'll be happier too, it won't be pity sex..and they do know the difference. Good luck to you, please put yourself first..:-)

[HillaryD]

Thanks to all of you who replied! I have been feeling better the past week, but haven't been in the mood to try sex yet. I am so excited that I haven't been feeling bad thay I sort of don't want to ruin it, you know? :rolleyes: If I continue to feel better for a while I will give it a try. Thanks again to everyone, you are all angels!
:kiss:
:pray:
Oh yeah, Happy Easter to everyone!
:bunny: