How Do Any Of You Have Sex?

[Lovebug]

I feel so bad for my husband b/c I'm never interested in sex. I have such diffuse abdominal pain. And if I'm not hurting in my abdomen then I have pains in my chest or back. Most of my other symptoms are under control but the pain is present every day. I assume the pain is part of my dysautonomia, especially sense it migrates so much BUT I can't help but think that something else is there. I may make a trip to my GI but have put that off b/c my cardiologist doesn't want any other doctors to "mess me up" since most of them don't understand dysautonomia.

But back to topic, how can I even think about sex when my insides hurt all the time? Does anyone have any advice? Do you feel the same way?

[janiedelite]

I have a lot of abdominal pain, in addition to back/neck pain and burning pain in my extremities. Gabapentin has been the best treatment for my abdominal pain. I didn't realize how much it was helping until I tried to wean off of it a few months ago. I managed to stay off for a couple of months, got over most of the withdrawal symptoms, and realized that I really did need this med in order to control my pain.

I do relate to your dilemma. Other than the pain, I have a level of fatigue that makes the exertion of sex just seem too difficult. My hubby has had to adjust his expectations regarding our sex life, but prior to starting on gabapentin I would take a small amount of pain medication a couple of times a week just to get the pain under control enough to have a bit of a sex life. POTS has taken so much from my life, I didn't want it to rob my hubby and I of our intimacy.

[stacdliw]

Honestly, between menopause, gastroparesis that makes me frequently nauseous, dysautonomia that causes debilitating fatique, and POTS that causes a rise in a heart rate with any exercise, I have no sex life-- NADA! The sad part is I can't say that I miss it. I'm just too sick to even think about it! Luckily, the husband is understanding. On the few occasions that I do feel well, then sex may initiated; otherwise, forget about it! I use to feel guilty about it. However, now I don't. Maybe I'm being selfish, but it's hard to get romantic when you feel so badly.

[icesktr189]

Can you please tell me what that pain is called? Every time I try to have sex now, (sorry tmi) i feel like he is poking an organ or something. Its almost like I have a swollen stomach and it hurts so bad. I am also very bloated with IBS-D.

[potsgirl]

You may have vulvodynia, which causes a lot of pain in and around the vagina. There's a lot of information on the Internet about it. I suffer from it, and will be coming to Phoenix soon to have a specialist do some tests for me. There are very few OB/GYN's who deal with it. Even the thought of using a tampon is excruciating! PM me if you want me info.

Cheers,

Jana

[sue1234]

If sex feels like "poking around organs", I would definetly let your ob/gyn know. Could be a number of gyn issues, such as adhesions, etc. I would start with a gyn talk.

Now, I can totally agree with the no desire! After having some hormones doing battle all day to try and level my cardiovascular system when I'm upright, then other hormones battling all day to try and keep my blood sugars in a normal range, there just isn't any way my "desire" hormones are going to make a showing.

[rach73]

Hi,

The answer is we don't. Never feel like it, and if I ever do feel like it I feel so ill afterwards its never worth the hassel. Luckily I have a very understanding husband who has a low libido himself. Its not an issue for us, we know we love each other and there are a million other ways of expressing how you feel about each other.

Hubs tells me at least 10 times a day how much he loves me. We hold hands, kiss, cuddle on the sofa.

It doesn't stop me feeling guilty though, probably due to the way the media bombards you with messages that if you aren't engaging in sexual activity you are weird / not normal!

You aren't the only one.

Rach

[lieze]

I'm having a problem with this too.

Lately I'm having panic attacks after sex.

[Sarah4444]

In the Vanderbilt article, they mention that sexual activity triggers increased symptoms in those with hyperPOTS and MCAD.

When you really think about everything we have to deal with, it's amazing that any of us ever feel like having sex.

I can't help but feel that this is another area where we are hurt by the fact that so many more women than men get POTS. Male sexual troubles seem to be taken so much more seriously by the medical establishment, and I feel like if I even brought this up with doctors I'd be risking that I would just be brushed off or stereotyped.

[Lovebug]

Thanks to everyone for your responses. It's nice knowing I'm not alone.

To Dani...I completely relate b/c I have IBS also with bloating and alternating b/w constipation/diarrhea. I also have a history of endometriosis (which causes painful sex). The term you are looking for (I think) is dyspareunia. Here is a link that explains it: http://www.mayoclinic.com/health/painful-intercourse/DS01044

[Guest letitbe]

If I could recall what it is, I could answer!

But I think if I was blessed for someone to walk in to my life that actually impressed me on any level, I would be very interested. Not on any meds or anything that could hinder it?

[akavella]

I dont seem to have this problem of pain while intercourse. I know there may be a lack of interest at times, but for the most part it is okay. I attribute the lack of interest to no energy and being tired. I must say though, since I started wellbutrin XL I have had much more desire. I joke with my friends that it is my viagra pill.

[Birdlady]

A few years ago I had no sex life too. Having sex was soo incredibly painful. The poster who said it feels like they are poking an organ, yes exactly. I think that is how I described the pain too. It would almost be so bad that I'd nearly vomit and dry heave. When something hurts that bad, you don't want to do it. DUH! It's especially difficult because society expects you to be having sex like 5-6 times a week in your early 20's. Once or twice a month was a good month at that point. The intense guilt I had during this time still haunts me. I still feel bad for all of that and probably won't be able to forgive myself.

Eventually I got so angry about the problems, that I started looking for alternative solutions. After a lot of research I realized that I probably had fibroids causing the painful intercourse and some other symptoms too. Testing came back clear, but I was not satisfied with that answer. I began taking an enzyme supplement which is supposed to dissolve fibroids. Within 3-4 months there was noticeable improvement and I can gladly say that I can have sex with no pain now. Getting the sex drive back was more complicated, but knowing it is not going to hurt helps a lot. It's only natural to want to avoid something that hurts!

My sex drive returned when I added in DHEA and it has been good ever since. I'm not saying this is what will work for you or what you need. Just relaying what worked for me.

[lmt033167]

Def talk to your GYN if you're having pain during intercourse, it may be something very small or very serious.

I waited for years to tell my dr out of embarrassment until I started passing out (talk about embarrassing); at first my hubby was hesitant because he thought he hurt me and didn't want to see me in pain, but after awhile he didn't let it bother him any more.

I've had Endometriosis all my adult life, and it was pain enough but in 2005 I had surgery to find that I have Adenomyosis also along with hundreds of polyps and fibroids.

Last Friday I was at my GYN and explained that the pain was a bit different and some other symptoms and was shocked to find out that the symptoms I'm having can also be caused by Endometrial Cancer so he's sending me to have tests this week.

Those of you having pain, please get this checked out asap =)

Lisa

[sandymbme]

I am recovering from a hysterectomy in January, and have had sex once since my surgery. From someone who used to have a very healthy appetite, the slowing of my drive since I have been sick if hard to cope with! Add abdominal pain and recovering from surgery, and it's amazing it happened once! I am going to find a way to improve this issue though, darn it! I gave up booze, I gave up work, I gave up going out dancing, and now I have to give up gluten (which means no more cake, bagels, pasta, even gravy!) I will NOT give up sex too!

Sandy

[Sophia3]

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[Birdlady]

Sophia I think some may be offended by your post. Finding a solution is not always as easy as you've made it seem.

I think for the most, admitting there is an issue is the hardest part. It is necessary though. Going to your spouse and telling them there is a problem can be quite embarrassing especially if it wasn't always a problem or if you are young. I was 20 years old and was not feeling it at all.

For years, I tried to figure out what was up. I read books, took herbs, tried those romantic novels etc. If a person is having pain, then none of that is going to help. You start to become scared of having sex! My gyne had no solutions for me and basically told me to get used to it. (I'm not kidding!)

Anyway, I just wanted to reply to your post because even though you meant well, I think some may take it the wrong way.

[Sophia3]

Yes..

[Sophia3]

 

[Birdlady]

This is the sentence that I think was sort of offensive. "To expect a man or others to just "go without forever" is imo, selfish." There is nothing selfish about not wanting to have sex when it hurts, yet I felt guilty all the time. Every time I had to turn my husband down I felt like a failure of a wife. I have immense amounts of guilt from that dark time that I do not need a stranger to tell me it was selfish. See where I am coming from?

In my mind I never thought it would be forever, but I knew it was going to be for the foreseeable future. Yes it frustrated the heck out of my husband, but it wasn't like I was sitting around on my butt doing nothing to fix my issues.

I wasn't trying to be rude either! You are feel to speak your mind. Just don't be surprised if someone disagrees.

[Sophia3]

. .

[Lovebug]

If I could recall what it is, I could answer!

But I think if I was blessed for someone to walk in to my life that actually impressed me on any level, I would be very interested. Not on any meds or anything that could hinder it?

LOL...thanks for the witty response. It's not my meds. I mean, when I feel good enough, I can do it but it usually wears me out and I often just don't feel like doing it.

[Lovebug]

I am recovering from a hysterectomy in January, and have had sex once since my surgery. From someone who used to have a very healthy appetite, the slowing of my drive since I have been sick if hard to cope with! Add abdominal pain and recovering from surgery, and it's amazing it happened once! I am going to find a way to improve this issue though, darn it! I gave up booze, I gave up work, I gave up going out dancing, and now I have to give up gluten (which means no more cake, bagels, pasta, even gravy!) I will NOT give up sex too!

Sandy

AMEN...GF!! I feel like you...why should I have to give up sex? I want to be somewhat of a normal wife. I've contemplated having a hysterectomy due to a past history of endometriosis and unable to take the pill to treat it but...worried how it will affect me. Thanks for your input!

[Sallysblooms]

Sandyshell, just wanted to tell you there are a lot of GREAT pastas that are gfree. Just try and find your fav.

[Sophia3]

Sandy shell. this is the best GF Pasta (was on the diet for awhile & folks that are GF really love this brand)

http://www.tinkyada.com/

Also there are good Pamela's cookies that are great though pricy and all sorts of GF mixes easily found. I made a great GF chocolate cake recipe, too. That said GF products go stale quickly so wrap & freeze accordingly.

http://www.food.com/recipe/one-bowl-gluten-free-chocolate-cake-209764

(*I got gas & pains from xanthum gum, which is hard to find info on online for this. In store bought versions, no issues. Something about the kind I bought & used to heads up to sensitivity on that)

For bad pain & bloating after meals that nobody can figure out, try GF diet for a couple of months. If you are Celiac or have Gut issues, you can see results right away. My neices beau did after only THREE DAYS when his siblings tested positive & he thought he had gall bladder issues..he was very skinny always. Is able to be normal weight now! For pain, neurological or other things, GF diet takes longer.

But bloating gets in the way of sex for many reasons.

So now, to bring the topic back to sex..sorry for the temporary digression but nobody should have to give up fave foods GF.p.s. Do yourself a favor though & wait a few weeks before trying GF desserts to give yourself space from reg flour deal!

p.s.s. If your doctor can not determine what your pain is during sex, look for another doctor. I even sent out letters to many local docs to find my ANS Dr 15 yrs ago. It's ok to Fire your Drs! Just don't burn bridges. If we get emotional, they tend to say painful sex or sexual areas are mental !@#$%? but I digressed, again. sorry

*Focus, Soph. Focus*