Painful Conditions and Sexual Activity

Isadorabelle Isadorabelle
This question is for people who live in pain regularly, though if anyone else has any input, please feel free to voice it.

For people with painful conditions, like MS and Fibromyalgia, how do you deal with that and still have the energy (pain on a daily basis is SO exhausting!) to pursue being sexually active?

What kind of tips do you have for people and couples that live with this situation? Are there exercises you'd suggest?
08/27/2010
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~LaUr3n~ ~LaUr3n~
Quote:
Originally posted by Isadorabelle
This question is for people who live in pain regularly, though if anyone else has any input, please feel free to voice it.

For people with painful conditions, like MS and Fibromyalgia, how do you deal with that and still have the energy (pain ... More
They thought I had fibromyalgia, because of all the pain and bleeding spotting I was having months ago. Turns out birth control fixed it and the doc attributed it to stress and out of wak hormones due to lack of sleep.
08/27/2010
gabee gabee
Swimming and medical marijuana are what I do for chronic pain.

Medical marijuana . . .
I had been given a lot of medications for pain and the side effects were as debilitating as the disease. They made me fat, sick, unhappy, angry and depressed. That is a great combination for a dismal sex life, well a dismal life overall. The narcotics were so disruptive and so broad spectrum that they disrupted my ability to feel sensations, not just sexual sensations, but everything. To add insult to injury they were marginally effective at best for pain. I was having sex once a month at best and even then it hurt too much. Sex exacerbated the pain.

Med MJ worked but is very limited in how I can use it. Mostly at night when I know I can let my cognitive facilities down somewhat. My partner is gracious about my use prior to sex, she knows that it had gotten painful and that med mj provides relief.

CAVEAT – I could not stand anything else. My sister and my partner both cannot stand marijuana. They both tried and hated it. My sister said it was like painting herself into a corner and having to breath turpentine for hours. It may not work for you. You may not want it for other reasons or it may not be effective for you. Honestly I am not trying to sell you on mj, only to say that it worked for me.

And there are other alternatives, but talk to your doctor.

Swimming . . .
I used to walk and as the pain progressed my walking decreased and that caused the pain to worsen. Swimming restored my ability to move and to feel pleasure in my body. Over the course of time it helped immeasurably.

Here a big CAVEAT – I swam distance for years, almost 20, so it was still second nature for me. But with that said it still took 18 months for my stroke to come back (swimming stroke, you perves) and it was hard hard hard to keep going when the results were so slow in coming. But I had a faith that the only equivalents are what Russians have for Vodka or Rastafari for ganja. And I swim distance now several days a week. A friend called it brutal, but he cannot swim.

And I need them both. With out one or the other there is a slow erosion and a steady ramping up of pain.

I’m sorry your are in pain that is affecting your life, I hope you find the tools you need to manage it well. If this thought is any consolation my life in general and sex life were non functional. It is much better now and I enjoy life and sex again.

Good luck,
09/25/2010
usmcwife99 usmcwife99
Ahh, I honestly have no idea. My husabnd has recent lost a leg arm and a few broken legs, needless to say hes in pain. He is on painkiller but it still hurts. A while back when I orginially left the military with honorable discharge from 3rd degree burns and a few bad cuts scrapes and well it was a tad painfull. So ime gona speak from expiernce what worked/worked for us.

At the time I came back he was still oversees, alot of time along at home. I would be home with my silicone freinds and well.......it was hard at first. Once I got horny I was liking it. I didnt squirm as much as I would of use to but it wasnt bad. I found having a few pillos on both sides so I dont move alot helps. Once I had pillows on my sides so I didnt move to much It took a few mintutes to start likeing it. I would initianny insert a toy and it just be like watever ime horny but it doesnt really feel good. After a few minutes it made it all worth it. The hardest part for me was the initial orgasm. I love to squirm in an orgasm. I however had to try not to move around alot.

So now when it comes to my husabnd having sex, right now were not having much vaginal sex more boob sex and handjobs along with toys. It isnt as good as it use to be but its better then nothing. I sort of move around him and well fromg there you can picture the rest. Ive also found that if you can "face sit" for him to give you oral its great.

I also have saw several products such as a sex swing or a stool that you can use.
09/25/2010
PiNkPrUdE PiNkPrUdE
Quote:
Originally posted by Isadorabelle
This question is for people who live in pain regularly, though if anyone else has any input, please feel free to voice it.

For people with painful conditions, like MS and Fibromyalgia, how do you deal with that and still have the energy (pain ... More
I'd have to say that it is no different than any other aspect of your life. When living with chronic pain, you have to make changes in your day to day life. That includes your sex life too. Sex is a natural stress reliever, not to mention a good distraction, which you can use to your benefit. It doesn't have to be a negative thing that you might not be able to "perform" in the ways you use to, but rather you find different ways to make it pleasurable. I can honestly say that my sex life is better now (not a day goes by that I am not hurting), than it was before my pain issues started. I think the biggest factors in that for us were open communication and understanding, along with a willingness to try new or different things. We went with what worked, and ditched what didn't! Thankfully, I am blessed with a husband that was willing to work through it with me.... and boy is he glad he did!
09/27/2010
P'Gell P'Gell
Quote:
Originally posted by Isadorabelle
This question is for people who live in pain regularly, though if anyone else has any input, please feel free to voice it.

For people with painful conditions, like MS and Fibromyalgia, how do you deal with that and still have the energy (pain ... More
Good topic, I have Fibromyalgia and Intractable Chronic Migraine. I live with quite a bit of pain. On a daily basis.

The pain is draining, no doubt. However, we have found that the endorphin rush and the long lasting after effects of good sex is good for my pain conditions. As long as the migraine is not in the "dry heaving, ice pack and near death stage" I can and will have sex. I find if we have sex when the pain is beginning on an upswing (I always have a background level of pain, but it varies from hour to hour etc) having a good round of sex, including orgasm is VERY healing for me. Once in a while, I get a headache from I guess holding my breath, while trying to reach orgasm, but these don't last long, and are not as severe as a breakthrough migraine.

In the fall and spring my Fibro really acts up, but as long as I let him know if he's putting too much pressure on a certain part of me, we're OK. And, of course, as with the migraines, the endorphin rush from orgasm helps the pain a lot.

I used to belong to a "support group" for chronic pain sufferers and so many of the women had actually stopped having sex, even though they admitted that orgasm helped. I don't quite understand that. I think a lot of these women were not letting their needs be known and some of their lovers seemed to think they didn't "need to" orgasm as much as possible. (Still can't wrap my head around that, but I know it happens.)

I know the exhaustion of Fibromyalgia, but I still will sacrifice some energy for sex, usually daily sex, if we can manage it. I find it energizing as well as healing, both emotionally and physically.

We also find if I can orgasm my first time early in the experience, I am almost anesthetized to any pain during the rest of the session. Any further orgasms only help more. We often have sex for several hours, and this usually is after an "as early as possible orgasm" and then we just keep going. (Although, at times, I can't get there, and we just keep trying.)

Yeah, I am sometimes stiff and sore (my body) after a good round of sex, but the relaxing benefits of sex outweigh any consequences.

At one point, we thought one of my pain meds was causing an orgasm problem, (I have had this happen while on Prozac and when I changed to Zoloft it got much better) but it turned out to be more perimenopause and hormones issues than the meds (one fricking thing after an other) But, to be OK, I try to not take this particular pain med for at least 3 hours before we may have sex. I have found I can take a quarter of a dose, and be OK, but I am still scared to take more before sex, because I am just (fingers crossed) getting my once easy orgasm ability back, after 2 years of uncertainty, inconsistent orgasm activity and fear.

That being said, My Man and I have a pretty amazing sexual life. We enjoy each other and enjoy sex, even after several decades together. We are both people who are very intense and tend to relate to each other physically (as well as intellectually, but the physical is necessary) we also are both pretty high strung and if we don't have sex a LOT, we tend to bicker, fight and not get along. Sex is Curative, in our relationship.

I hope you can find a similar way to continue to enjoy your partner and a good sex life.
09/27/2010
gabee gabee
This is Gabee again and I thought a lot about what I had said to you. That was bad advice because I do not know anything about you or your condition. Chronic pain can disrupt most of parts of a life and desperation lead me to take cannabis to treat pain. BUT I am not a doctor and nothing I say should be construed as medical advice. But with that said rather then retract the statement I explain the steps that went into making this decision. You can make a decision, hopefully in concert with your doctor.

To start:

I have tried all other treatments offered to me and they failed. The pain I was in had was appearing to be untreatable and was becoming unbearable. You might not be in this group and I imagine it is a pretty small group. Good for you if you are not.

Research
1. I did a litterateur search at PUBMED and when the articles were not available online I got them from a medical school library.
2. Marijuana and medicine : Assessing the science base (Joy, Weston and Benson editors, 1999.) Probably superseded by later research. It may have come out in a new edition.
3. (Sorry I will have to provide the book later, the SFPL search site is down and I can not check the reference title, publication date and authors. will give it later) Best general work that synthesizes the research into intelligent articles by other researchers and experts in the field.
4. Lastly I also talked to a pharmacist about cannabis and was told that it had excellent anti-inflammatory and analgesic properties.

For you to consider:

Marijuana has been implicated in causing brain diseases (IE: schizophrenia) in some young populations. Varying interpretations suggested that marijuana use was either co-morbid with or causative of serious brain diseases. You are young and I am not. That cannabis may cause schizophrenia should be of concern to you. It was to me and from what I read I am out of the age range where this occurs. You may not be.

I considered Marinol, synthesized THC. But have since decided that while the pain reductions caused by Marinol was roughly equivalent to narcotics and tolerability studies suggested a lower drop out rate, suggesting a higher likelihood of compliance with a course of treatment, almost every post I read subsequent to reading these studies had everyday patients complaining that they could not titrate their medications appropriately. Patient posts complained about long onset times, much too high a dose for what was required essentially leaving the patient entirely wrecked for hours. Me like Brain. So it was not worth pursuing as it was delivering a much higher dose than appeared to be necessary for management of pain.

There is a drug called Savitx that is supposedly formulated to be non-intoxicating. But I do not believe that it is approved in the USA yet. The last time I looked it said that they were going to take applications for compassionate use cases. What you should probably read is that they are going to look at cases like mine with a lot of medical documentation for failed treatments and make it available for use on off label uses in very select cases. My understanding is that it is in FDA testing for cancer and cancer related pain.

But be forewarned, since it is a new drug being introduced into the American market it will probably be expensive and both controls from the insurance companies and from the federal government will probably place a very high bar to its availability. Also developing a narcotic without intoxicating properties has apparently been a goal of the pharmaceutical industry for 50 years (sorry, I can not provide the reference at this time, I will later). It has not happened and probably will not happen. So don’t expect a completely non-intoxicating drug derived from cannabis. Which will leave cannabis medications suspect for many medical providers. This is my first, but currently unavailable choice.

Your profile said northern California. If you have insurance there should be some sort of clinic in the bay area, big teaching hospital or large spin off practices from that institution, which should have some expertise and can help you more.

There are no exercises that I am aware of which will help with chronic pain during sex, other then as fundamentals, which are good for everyday living. BUT I do not know your condition. The only real suggestions I have are around management and chronic pain can be effectively managed. Talk to your doctor for alternatives.

For a 19 year old this advice probably blows. When I was 19 I would have hated it if someone told me that the only way to have good sex was to plan ahead and limit the things that were counter productive to it. Yea right.

What has helped are the everyday kinds of things that any therapist or sex therapist will tell you to do: more time in foreplay, relax, communicate and if something does not work out do something else. I know, pretty unfair when everybody else gets friction, heat, sparks and combustion. But really: tired, frustrated and in pain, take some time and try a softer direction. You might find that the roundabout will get you to the same place.

Bottom line:

My sex and intimate lives are good now, again, thankfully. But for about five or six years it was really painful and only getting worse. I was hating sex and my partner when we were intimate. One night I gave her head and I resented it the whole time. That was when I knew something was wrong, very wrong. I have always loved getting my partners off and I love giving head, everything about it. Pain made sex hard to do. The medications made intimacy even harder if not impossible. Marijuana gave me those parts of my life back.

Soooo . . .

Try what your doctor offers first. If the protocol creates problems, be honest with your doctor. If you do not tell them they will assume that everything is good for you. YOU must bring up sexual issues or they may be not be considered. From my experience it appears medical providers treating pain may well consider a degraded sex life or even a nonexistent one to be the course of a disease and a reasonable trade off for controlled pain. That may be a trade off you are unwilling to make. That sort of mindset is not unreasonable, particularly at your age.

Good luck,

Gabee

PS: I did not give you the research I did, not only because it was not on point for your condition, but because it is not a simple decision. I am deeply thankful for medical marijuana. But it is, at least for me only part of the puzzle, a necessary one, but a small one in the long run. And it is a lifetime of being on this medication to manage pain. Given all the problems I had taking standard pharmaceutical medications and how sick they made me even when taken as directed it is impossible for me to tell you or anyone to blithely go forth and light up. I tried to make an informed decision and seem to have succeeded. But it might not be right for you. Informing yourself and struggling with the information may be the single most important thing you can do. I wish you well.

PPS (I do not smoke.)
09/28/2010
evanovca evanovca
i have a bad back, spine injury in the neck area, torn rotator cuff, and lower back injury. sex for me always represents a certain amount of pain. we have done a lot to utilize different positions, furniture, pillows, etc...to make sex more comfortable for me.

it's not very sex but i'm also religious about icing affected areas afterwards to save myself some pain and cut down on any swelling.
10/01/2010
Redboxbaby Redboxbaby
Quote:
Originally posted by Isadorabelle
This question is for people who live in pain regularly, though if anyone else has any input, please feel free to voice it.

For people with painful conditions, like MS and Fibromyalgia, how do you deal with that and still have the energy (pain ... More
I have MS (but it doesn't have me) and in the past year have been having fatigue and muscle weakness which made having sex exhausting. For the most part, it is extremely important for me to conserve energy throughout the day and relax whenever I have the chance. A small nap in the afternoon or before dinner helps me also.

TALK TALK TALK -- I talked to my occupational therapist about issues I was having in the bedroom, due to MS. At first it was difficult to talk about, but after the first 5 mins I bet she was wishing she never asked me anything about it and hoping she could find a way to shut me up. Anyway, she told me that there were several things on the market and that if I could think of products that might aid me in certain positions, then they most likely had already been thought of. Low and behold, if I didn't know better I would have thought Eden Fantasy's and the Liberator furniture was invented just for me! The ramp/wedge combo is my new favorite addition to our bedroom and I hope to have the Esse or the chaise in the near future! Before the Ramp we were sexually active a few times a week and for the past month, we are having sex daily and multiple times some days. Mmmm.

The main thing though is having a partner who listens and who is patient. I also had to learn to speak my mind and tell the truth when it comes to how I really feel in and out of the bedroom. I would have never guessed that talking and saying exactly what I want/need could be such a turn on, but it is and we are talking about sex more now than we have in the past 20 years combined. I love it.
11/09/2010
CPTInsanity CPTInsanity
I was injured in the army and I had to have most of my guts removed, so I had a colostemy bag for a little while. I thought that it was the nastiest thing in the world, but my wife didn't mind it. We would clip the bottom part of the bag so that it would stay out of the way, and I would where a t-shirt or something so that you couldn't see that nasty thing. My wife continued to have sex with me during that painful and nasty part of my life. She was amazing in how she took care of me. A couple of years later and you really don't notice much. I can go without a shirt and you can only really notice one of the scars (only because it looks like I got stabbed by a really big knife or a sword) and the others are hidden in my stomach hair. Long story short, if you have the right partner you can get past anything and still have great sex.
03/11/2011
Gunsmoke Gunsmoke
Quote:
Originally posted by CPTInsanity
I was injured in the army and I had to have most of my guts removed, so I had a colostemy bag for a little while. I thought that it was the nastiest thing in the world, but my wife didn't mind it. We would clip the bottom part of the bag so ... More
CPT - Thank you for service and sacrifice. Your wife sounds like a great person.

Good luck to both of you and thanks again
03/11/2011
Wondermom Wondermom
I would love to be in a state where I could get medical MJ, right now I take a lot of OTC pain pills (because my dr is evil and only gives me 20 narcotic pain pills with no refills!). I also swim to help keep my joints and muscles moving without causing extra pain on them.

I agree with previous posters, communication is key with that you can get through a lot. My husband is extremely supportive of me and my limitations, and we have worked out ways that work for us (and are still discovering more).
04/29/2011
SexyLilPixi SexyLilPixi
Quote:
Originally posted by gabee
Swimming and medical marijuana are what I do for chronic pain.

Medical marijuana . . .
I had been given a lot of medications for pain and the side effects were as debilitating as the disease. They made me fat, sick, unhappy, angry and ... More
I am such a medical marijuana advocate. So glad it has helped you.

I have endometriosis with chronic pain from it, so talk about pain that could really interfere with sex. surprisingly, it really doesn't interfere, though. As long as I have the pain under control, and luckily, low dose pain medicine patches daily have helped me with that.

I went through an acute attack of Fibromyalgia years ago, and god was that awful.
04/29/2011
MistressDandelion MistressDandelion
I suffer from Fibromyalgia since.. a very long time, in fact. I recall having symptoms at the age of 5. I'm an untreatable case (in fact, even synthetic THC was a failure on my case), who rely on opiates to go thru the most awful phases of my life. Oddly enough, or maybe not, I've always been a very horny person ever since childhood and I think the endorphins and every "feel good" hormone I can feel kills the pain, at least for a few minutes, or a few seconds. Yes, there are days where I'm so tired I'm atrociously passive, but it doesn't mean I don't enjoy myself (and my husband enjoys it anyway). It's almost an addiction...
03/26/2012
Total posts: 14
Unique posters: 13