This is a topic often ignored when discussing Fibromyalgia. It's hard to talk about, even with our partners but definitely so with our physicians. Because of this I think there are a lot of things people don't know about or are too afraid to ask about. I'll do my best to cover them now, someday maybe I'll talk about this in group, if I think everyone is ready to.
PAIN
Pain can make sex and intimacy very complicated and it can sometimes be hard to communicate properly with our partners what we are feeling without making them feel responsible. It takes some practice and an open mind to find the right combinations for you and your partner.
Remember that fibromyalgia can affect everything -your bits aren't excluded from that unfortunately.
How exactly you might be wondering and what is normal?
Besides the fact that sex is a full-contact sport having tender spots and burning skin can make any contact tough, it can also limit intimacy by making cuddling or physical affections like butt-grabbing or slapping impossible. Because the thighs tend to be exceptionally tender skin grabbing and pressures can be too much. Even kissing can cause pain for people suffering from jaw-pain or sensitivity of skin from a partners facial hair. Moderation can help with some of these pains.
Many women with fibromyalgia suffer from a condition known as Volvydynia “pain in the vulva,” or the soft tissues that surround the opening to the vagina, including the labia, clitoris, and the vaginal opening. Women will feel different types of discomfort ranging from a stinging pain, to burning, stabbing or itching.
Men and women both can suffer from bundles of overactive nerves in their tailbone region and pelvis, many times these nerve bundles affect other nerve bundles and they can amplify other body-pains as well. Often women describe pain during or after sex to feel similar to severe abdominal cramping associated with their periods. Both men and women complain of deep gnawing aches in their low backs after sex. There are some nerve-blocking treatments and medications that can help with these problems. Here is a more in-depth link: http://fibromyalgia.com/index.php/article/item/20-sexual-dysfunction/20-sexual-dysfunction
Keep in mind that sex can also relieve pain because it releases endorphins which are your natural pain-killers. For some sex can be distracting from their pain and on occasion some people with pain like additional painful stimuli because it overrides their current pain. It is important to have these kind of conversations with your partner so you know how to handle them.
FATIGUE
Fatigue is major killer of libido and trying to schedule your sex can be embarrassing and un-motivating, at least until you understand how to get each other going. Having clear rules for initiation might help prevent some unwanted attention or misunderstandings. It is very easy for one partner to make another feel rejected if they are often turning down sex. This can lead to resentment and sometimes even return rejection. Making it clear to your partner what signs indicate the green light and which are a no-go might save you some time, and don't forget intimacy doesn't always have to be physical. Express your love verbally (I don't mean strictly dirty-talk either.)
LIBIDO
Your desire to have sex can be dowsed many ways with fibromyalgia. Your course of medication could be dropping your libido. A little note to those taking pain-killers they can stop you from climaxing or even prevent you from performing. Almost all of the traditional medications for fibromyalgia, anti-depressants, pain-killers, and anti-convulsants come with potentially nasty sexual side effects. Even birth-control can effect your sex-drive.
You may also experience a drop in libido if your hormone levels are deregulated. Low-testosterone can have a serious affect on your libido. If you are suffering from depression which most of us do at least at some point that can affect your desire. Don't forget body-image, guilt and self-talk.
DRYNESS
you know how you suffer from dry eyes and dry mouth, well it doesn't stop there. Vaginal dryness is a serious issue with those of us affected by fibromyalgia and can cause many other complications. Pain and inflammation, urinary tract infections, and bacterial or yeast infections as well. It is very very important to urinate directly after intercourse because that is when you are most susceptible to infection. I would also recommend becoming very familiar with lubricants. Mucous membranes are fragile and tear easily, lubricant also helps with pleasure and reduces nerve pain. Please note that if you have sensitivities to chemicals you should find hypo-allergenic products, please stay away from scents and flavors because they often cause infections or change your PH balance.
ADRENALIN
A lot of us who have fibromyalgia suffer from adrenal fatigue, PoTs and adrenal-dumping. Essentially we are flooded with incorrect signals and overreactions. We go from too-hot to too-cold, we sweat and shake and our skin flushes. We get dizzy and nauseated. None of those things sound very sexy and can cause your other symptoms to flare up. We can become over-whelmed by sensations. Things that would normally be pleasurable can become painful or irritating. It helps if you have a comfortable temperatures and reduce the amount of external stimulus like fans, or vibrations, textures or noise. All those things sound like good things to most people but for some of us can make things too intense. Also it might help if you aren't rapidly changing positions.
SUSCEPTIBILITY
Here is a hard-truth about those affected with fibromyalgia, it's a hard-pill topic and understandably under-discussed. Most people healthy or otherwise would be reluctant to discuss this with anyone as well. However, I think it's important to know so I'll discuss it despite the stigma. Because we often have compromised immune systems we are also more prone to infection and recurrent infection. If you are sexually active (which is the whole point of this post) and you have a compromised immune system you are more likely to contract an STD but even more distressing, because our immune systems can't fight disease effectively you are also more likely to suffer chronically from those infections. Keep in mind that most people will in their lifetimes contact an STD or STI it is simply fact. They can be as simple as a urinary infection or a more complicated viral infection like herpes or HPV. For those who contract viral infections like HPV or Herpes, you may have a harder time clearing the symptoms of such a disease, once you have contracted herpes or HPV you have it forever, a healthy immune systems will often suppress the virus. Even more complicated is that if you are taking an immune-suppressant or if you have a blood transfusion or transplant you are also more susceptible to infections. There is still a lot of stigma surrounding STD. Having an STD does not make you dirty or disgraceful. Think of it this way, have you ever known someone who had the flu? a cold? Cold-sores? Did you think the person who had that was dirty or disgraceful? Did you think they deserved it? Viruses and bacterial infections are a normal part of life and even the most strict protection still has risk. Condoms don't fully protect you against HPV and men rarely show any symptoms of many STD's and aren't tested for HPV. That being said please please please always practice safe and responsible sex and if you do have an STD it is your responsibility to inform your partner before you put them at risk, don't make that choice for someone. Here is a website dedicated to living with an STD: http://www.thestdproject.com/std_blog/
SHAME
There is a lot of shame/guilt surrounding sex in relationships. There are a lot of preconceived ideas or expectations for both men and women. Women are expected to give it up whenever and men are expected to perform on command, but none of these expectations line up with the messy and complicated interactions of actual-sex and relationships. Even in healthy partners libido can differ and desire can wax and wane. With chronic illness you have to throw those expectations out the window and start from the beginning with a firm base of communication. Also keep in mind what you want or need is just as important as your partners wants and needs, you don't owe any "concessions" to make up for anything, sex is not a payment it is a connection.
WHAT TO DO??
If you are still reading your are awesome and definitely ready to have the complicated talks with your partner about sex and intimacy, wants, needs and desires.
The first step is to directly confront your self and understand what things cause a problem in your sexual life. Lists are helpful. These conversations require you to be vulnerable but then I think sex does too and if you can talk openly and honestly about sex you will have a better relationship all-around, be ready to hear things that you might not want to. That may be easier said than done though. Some partners aren't ready for that kind of communication and it may take a lot of patience and resilience on your part to get it right, you may even need a third party to help you communicate effectively. All those things are ok.
Physically there are some things you can do to make things less painful. Take a warm bath before or after sex, start your libido with a body massage, heat-packs and ice help as well. Discuss positions with your partner and experiment with pillows for support. Eat small meals and have sex when you feel good, don't try forcing it, you maybe feel better after you start but if you are always feeling awful and trying to have sex and feeling worse then your desire will diminish too. Don't forget to encourage your partner emotionally and ask for things that might make the experience easier for you. Stay hydrated, drinking a lot of water will help you flush your body of toxins and keep your skin and gut from rebelling. You might consider lidocaine ointments or patches for your back and maybe a dose of ibuprofen before sex. Some supplements may help with symptoms that cause discomfort or even with libido. It really sucks sometimes that we have to put in so much thought to such a basic part of life but if you can think about it now you can worry about it less and enjoy the sex you do have more. You may even feel more satisfied with what you are having if you can get rid of your guilt and shame surrounding this issue.
I know this is one of those topics that makes a lot of people uncomfortable and I want you all to know I'm not afraid to tackle the hard topics so if you ever have questions and want information, if you want to know if something you are experiencing is "normal" I will do my best to help you answer that question and I promise to keep your questions confidential.