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Posted 3/29/2011 2:08 AM (GMT 0)
Hi Everyone,

I'm not sure if this topic has already been discussed, but I was wondering if sex is painful for you guys? For me, sex is incredibly painful and I've read that it is one of the symptoms of fibro. So I guess I was wondering if this is a problem for many of you too? Just want to know whether or not I'm all alone in this one...
Posted 3/29/2011 3:08 AM (GMT 0)
Yup, you're not alone, it ain't like it used to be, that's for sure!

Debbie
Posted 3/29/2011 5:15 AM (GMT 0)
Hi Leora,

You assuredly have lots of company on this one. Just getting the arms and/or legs to cooperate can be painful let alone *anything else*. We've talked around this topic off and on but it always good to bring it up again if it's something that's bothering you. It's hard to talk about because it's something many of us are shy about and it's generally a sensitive topic when things aren't going right.

When intimacy is a problem it can lead to other problems, mostly emotional. It's difficult to feel good about yourself when we feel like you can't even function sexually. Many people end up with depression and it can center around this topic.

In my opinion I think it's best to talk about it with your partner as well as other people with fibro. Feeling like you're 'alone' or 'the only one' is something we've all felt. I know I sure have. That's hard on your self esteem and we have enough to deal with already.

You might try talking to your doctor or gynecologist to see if there's something they can do or suggest to help the situation. Can't hurt to try and the rewards could be wonderful.

Warm hugs,
Chutz smilewinkgrin
Posted 3/29/2011 12:49 PM (GMT 0)
If your pain isn't caused by something that can be treated by your gynecologist and is more muscular in nature, there are pillows and cushions out there specifically designed for that purpose for people who have back pain or chronic illnesses. A "Google" search will yield several options.
Posted 3/29/2011 1:19 PM (GMT 0)
In what ways is it painful?  For me it is painful in a gyn way.  But I have been going to the gyno for this for years, treated for all sorts of weird things, and nothing works.  The part I HATE is when the doctor asks you if you are dry-as if we didn't think of that and of using anything!!!!!!!!!!

Very frustrating and upsetting.  I don't really have a problem of other areas being painful during sex, just the most important area feels like it's on fire with pain.  Not fun. shocked Sue

Posted 3/29/2011 1:44 PM (GMT 0)
I had an area on the left side of my vaginal wall that was very painful during intercourse. I was examined by OB/GYN several times with no lesions, lumps, etc. He then sent me to physical therapy and that actually helped a lot. They taught me stretching exercises that helped. Seems my tight inner thigh muscles were causing all sorts of problems in my pubic and back areas. Now, when I can feel that something is starting up, I do my stretches and within a few days, it's much better.

Hope this helps.
Posted 3/29/2011 1:47 PM (GMT 0)
Snue - has anyone discussed interstitial cystitis? Your GYN may not be educated in this. Might be worthwhile to see a specialist, Uro/GYN...
Posted 3/29/2011 2:10 PM (GMT 0)
Snue I know exactly what you mean when the gyn goes into their ky jelly talk, OMG please just stop. This is such a touchy topic because how much info is TMI, lol. I am blessed with one of the best hubbys in this world.

Post Edited (grandmaroses) : 4/4/2011 10:15:07 PM (GMT-6)

Posted 3/29/2011 2:23 PM (GMT 0)
My pain is from thinning of the vaginal wall and dryness. Lack of estrogen is the culprit. There bis a new little pill that goes up there with a dispenser that slowly releases estrogen (I think that is how it works) I have the script but not the money to buy it.
Posted 3/29/2011 8:10 PM (GMT 0)
I was also wondering if I was the only one suffering with this. Sex is excruciating painful for me every single time. I usually end up crying. My husband has tried to be understanding but I know he is very frustrated with the whole thing. The last time we tried, I ended up tearing and bleeding. It's embarrassing to say, but I usually end up "self-medicating" with ambien and sleep thru the whole ordeal...I just don't know what else to do...I hate hate hate hate hate this!!! All the KY in the world won't help.
Posted 3/30/2011 1:24 PM (GMT 0)
So sorry to hear everyone's frustration with this. It is just another kick in the pants with the fibro. It causes more distance in our relationships which are already strained. I tried a medication my doc told me about to kind of numb the area, but it didn't work. But that would be perfect for me, numb me out and we can be intimate and I wouldn't be in excruciating pain!!!!! "not just lazy" I like your idea of the ambien. Hey, what ever works!!!!!

Have others gone to the gyn with this and found after many tries of different things it just didn't do anything and didn't help? She kind of now has written it off as being because of "fibro".

My new doc said he believed it was yeast overgrowth, but all the treatment he put me on for that did nothing either. So he's written me off with that issue as well.

And it is such an important part of life and a relationship.
Posted 3/30/2011 3:33 PM (GMT 0)
Leora, sex is very important. I am with yall all the way. I don't have the gy problems. But the physical part is embrassing. I tell my husband, can't do it that way. LOL I feel like an 80 year old.
Very embrassing.!!!
Posted 4/5/2011 1:57 AM (GMT 0)

Hi all - I'm an occassional lurker but I am so grateful to hear this discussed. I started having intense pain with sex about 2 years ago. I've been to the women's clinic, my internest, an ob-gyn. There is nothing visibly wrong, and I don't have yeast or vaginitis or anything 'usual'. If someone suggests lubricant again I really will scream. I don't think there's a kind I haven't tried. And not only is intercourse painful, but I am so sore and raw for 2-3 days that sitting, urinating, walking, are all a misery. My last doc suggested an estrogen cream, but I can't seem to remember to use it twice a week. I'm lucky to remember my daily meds.

Anyway, I'm sorry to hear that so many of us have this problem, but as always it is nice to know I'm not alone. I've spent the last two years barely sexual with my loving husband, who is too gentle to initiate sex when he knows how painful it is for me, and feeling terrible. Just ANOTHER complaint that no one can diagnose.  However, I hadn't come across this one in my fibro reading.

Thanks to all for sharing on this sensitive subject. I'll continue to welcome any suggestions for addressing this problem. I feel like it is another symptom without a clear solution or cause, and so it gets written off, thought it is critically important to me and the health of my relationship!

Best wishes for good days,

Nicole

RA, Fibro, CFS, DDD (degenerative disc disease), IBS, and misc. related conditions

Posted 4/5/2011 4:44 AM (GMT 0)
Hey all, new here too. My ob-gyn had me on the estrogen cream for 6 or 7 years. Did nothing at all to help with the pain. I've even tried a morphine pill beforehand and it didn't work. Maybe if it came in cream form? (just kidding). I too am so grateful to all for this discussion. I thought I was all alone. I'm also blessed to have a very patient husband, but that doesn't keep me from feeling guilty. Lucky he works out of town but when he comes home after being gone for 4-5 months I do feel obligated but I pay for it for a few days. Does anyone else get bladder infections after sex?

Casey (from Vegas)
Posted 4/5/2011 2:02 PM (GMT 0)
This is a very important subject to address and I am glad that we have the forum to do so.

I also have had the same pain that others have described. It is worse at times, and tolerable at other times. Never thought about it being related to fibro. But yeah, why not. Everything else hurts, so why would that area be different (i say sarcastically) . I guess I am just weary of hurting everywhere!

I do have to deal with the guilt of not being the same "in the bedroom" as I used to be. It's hard to feel romantic when you hurt so bad. My husband tries to be patient but he is not the most patient man in general and I feel he is having difficulty dealing with this. It is soooo frustrating for me and feeling guilty on top of it makes it even worse.

Well, thanks for listening! Blessing to all of you!

It is comforting to know that I am not alone. Thanks everyone for sharing!
Posted 4/5/2011 4:07 PM (GMT 0)
I am SO happy also that someone started this conversation.  Some sounds like they have pain in their back and limbs that make sex difficult, but many of us sound like we have unexplainable vaginal pain.  Which is where I fall into this.  And been tested for everything under the sun, given estrogen cream with no help, lidocaine cream with no help, treated for weird yeast infections with boric acid, with no help, suggested by millions of doctors about the lubricants- and yes I TOO want to wring there necks when they say that.

Well, if anyone finds anything that works for them, besides just cringing in pain and waiting till it's over- let us know!!!! shocked

Posted 4/5/2011 5:33 PM (GMT 0)
I have been married since 1982 and for most of those years I have hated sex. I think some of it is because of the way I was raised. No sex talk.  it was a taboo subject. My dh on the other hand had a family where everything was talked about. After being told the pain during sex was in my head (by a women dr no less), it was diagnosed that I had a cyst on my urethea (sp). After it was removed, things got better, but in my head i was always waiting for the pain to start and I would tense up. Finally after a hysterectomy, and taking estrogen for several years, it is better. I enjoy sex now. Thank Heaven for a patient hubby. I still have trouble discussing sex to my husband's amusement and frustration, but I am a little better at it. I have muscle cramps at the worse times but hubby does also. Kinda kills the mood. The really frustrating and irony part of it is, now that I enjoy and iniate it more, dh has the "male" problem sometimes. I will deny posting this if he sees it. LOL. Just another example of  life is not fair when you are 47.
Posted 4/6/2011 3:47 AM (GMT 0)
Hi Everyone,
I'm so glad that you were so positive in your responses to my question - like you all said, it's so nice to know that I'm not alone in this.

For years, I would get UTI's that were extremely bad (I would be peeing straight blood with no urine at all) every time I would have sex. That has since stopped, but it's always a concern in the back of my head when I sleep with someone.

For me, the part of sex that's painful isn't my body, it's vaginal. I hope this isn't TMI, but unless the sex is really slow and soft, I feel like I'm being punched repeatedly in my vagina like on a bruise or something....does that make sense? And the only thing that I've found to help make sex more enjoyable is to sleep with guys with VERY small penises (lol)! Sex is just so painful for me that I often avoid it - I'm sure the face I make during sex isn't very sexy and I probably look like I'm about to cry or scream in pain (sometimes I do cry).

I'm only 28 and I'm still single, so it's very hard for me to have a sexual relationship with someone because I'm not close with them or comfortable enough to talk to them about the pain, so I usually just take it and wait for it to be over. As far back as I can remember, sex has always been painful. I used to have endometriosis (sp?), which is something like when your uterine lining grows in places where it's not supposed to. I originally thought that this was the reason that sex was so painful, but since I had surgery to remove the endo., sex is still crazy painful for me.

I always worry that I'm never gonna find someone who wants to be in a relationship with me because of the sex problems. Actually, one of my biggest fears/worries about the fibro is that I'll never find someone who wants to be with me because of my illness. I can't really drink so it's hard to meet people, plus I spend a lot of time at home because of my symptoms. Basically, I'm so scared that I'll be alone the rest of my life because of fibro. Sometimes I wish that I already had a husband when I was diagnosed and when all this started. That's one of the things that depresses me the most - that I might never find someone who wants to be with me because of all the problems that come with fibro. I think about how hard it would be to have kids with fibro, have a healthy sexual relationship, how much of a home-body I am now because of the fibro. I have a lot of worries related to being so young and still single and having fibro.

Thanks to everyone who responded to my post. It's so amazing to have other people who have the same problems and to not feel so alone. Your support on this forum really makes a difference in my life and I'm so thankful to all of you.

Sincerely,
Leora
Posted 4/6/2011 6:30 AM (GMT 0)
Dear Leora,

Your post touched me deeply. I never considered how hard it might be for someone with fibro to date and to find someone who is patient enough to deal with this illness. I wish you the best during your journey. From your post you sound very kind and intelligent so I'm sure there is someone out there for you. It may happen when you least expect it and aren't even considering a relationship. That's how I met my husband 26 years ago.

I also had endometriosis. I had a complete hysterectomy and was told this would help with pain during sex. Wrong. No change at all. But hooray, no more periods.

I forgot to mention during my other post that I did finally find an Ob-gyn who wrote me a RX for Vagifem 10 mcg. They are small tablets that are inserted vaginally at bedtime every day for 14 days, then twice weekly. I start using them everyday, a few weeks before my husband comes back and then everyday while he's here. It's not a magic pill but it makes it tolerable. I also tried Add-lib which came with a lubricant called sensual massage that I got online. The add-lib are pills are supposed to be a natural mood elevator. You take the pills every day. I tried all of this at the same time and all I can say is it still hurt but not as bad. Like I said it was tolerable. I hope this helps someone.

Best wishes and Warm hugs

Casey, Las Vegas
Posted 4/6/2011 6:25 PM (GMT 0)
Leora,
I am sorry you feel so much dispair. Hang in there. I know what you mean about all these life decisions with the fibro. I am 44 and decided about 7 years ago not to have children because of the fibro. I was so exhausted all the time, I could barely remember to feed the dog, how would I have taken care of a child. And I got no support from my husband about wanting a child. He didn't want one. Honestly, I was never that into kids anyway, so I thought it would be ok. But it is something that I still feel as a loss. I still question my decision. This is tough stuff.
But let's all try to find something positive to look at about our situations. Fibro has made me much better at taking care of myself, about putting my needs first before I completely spread myself too thin helping everyone else out. It has made me good at setting boundaries, and really deciding if something is worth my time and energy to participate in before I do it. It has made me slow down, try to obtain peace and serenity, and appreciate the little things. I am doing more meditating and praying and more relaxation techniques. And I am trying to let go of things more that are bothering me (and not obsess over them). So those are all good things. I believe we have to focus on something positive, or we'll lose our minds.
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