I like to think I have a good grasp on things as they are. I appreciate the little things, and change my expectations of life as things change. I try hard not to wallow, or whine, or really miss things I can no longer do. (most things I simply do a different way, or I find something else) Point being I try very hard NOT to dwell on the past. Not to say I don’t have my pity parties, but they don’t usually last long, and I can usually pick myself up pretty quickly.
There is one thing that I miss so very much, and no matter how creative I get, or how much my husband tries, it’sjust not the same.
I miss SEX! That wild, abandon…a night of Passion, sweat, hormones, and sweet, sweet afterglow. The night before last I had a dream…oh what a dream! And when I woke up, I was so sad, and heartbroken that this may never happen again, except in those fleeting dreams. (there is always hope though)
Caution, this is the part where I’ll probably tell way too much information.
There is a series of complications behind our lack…or rather, creative, sex life.
For a while there, I couldn’t have sex without having vertigo. The Meniere’s was just taking over every aspect of my life. But it’s not this illness that causes most of the trouble.
I have chronic pelvic pain, and hip pain. And so far the doctors I’ve seen don’t really know why, or how to fix it. They can’t figure out if the pelvic issues caused the hip (and tailbone) pain, or visa versa.
Caution again: Explicit description of my pelvic pain issues coming.
All of the major causes of pelvic pain have been ruled out…. vulvodynia, endometriosis, fibroids….ect.
I have muscular issues. Vague I know. Within a woman without this problem when she gets excited the muscles in her vagina contract a bit, it’s pleasant, it starts all the juices flowing and you are getting ready…they continue to spasm a bit…in a nice way, until it builds to an orgasm, the muscles spasm, and it feels oh so good. This is what naturally happens to most women.
For me, when I start to get excited, the muscles spasm way too much, and it’s painful. At first just a bit of stinging and uncomofortableness, but even a very passionate kiss, the kind you can suddenly feel in your loins. (I hope you know the kind.) Could cause me to have horrible spasms. Foreplay, oral sex…oh the pain. During actual intercourse, the muscles are stretched, and it hurts less…actually it’s much more enjoyable than any the rest. Most of the time, when I have an orgasm it is intensely painful. I’m talking, want to throw my husband off of me, scream in pain and curl up in the fetal position. Needless to say, I got to the point where I was simply too afraid of this pain, and the emotional turmoil afterward to have any desire to try to have sex.
If this wasn’t enough, now I also have hip pain, so the part that I could enjoy is extremely painful, just in a different area. When having sex, in the missionary position, the pressure from the man on my hip is excruciating. Yes, we’ve gotten creative, I can keep one leg straight sometimes, or we he can enter from behind. (but you know, that position, every single time simply gets old.)
For the vaginal issues, I’ve been to a number of specialist. I’ve had biofeedback (yes they insert a probe inside and read the muscle contractions and you try to learn to release them, I even had one to take home an practice with. But when the extreme spasms only happen when I’m excited, this didn’t work very well.). I’ve had numbing shots in my vagina…that was horrific! I’ve had special internal physical therapy. Muscle relaxers…numbing creams…ect…ect…
Some of these worked, to a point, but only for a while, for some reason they would stop working. None of them took all the pain away.
For the hip issues, I’ve had 2 Arthroscopic surgeries, correcting a torn labrum. It didn’t help. I was seeing one of the top hip specialist in the country, and after the second surgery, and I was still in pain, he did an MRI to make sure nothing was left inside me during surgery…yes this made me feel very confident in my surgeon. Then he called me and told me that he didn’t see anything and he saw no reason for me to come back. “Yes, he CALLED to tell me this!” I was so stunned. He gave me no hope at all, I’d have to live with it.
I asked around to people who had orthopedic troubles to see what doctor they could recommend. A friend had a very torn up ankle, she is an athlete, and saw a Dr. Jones who made her better than before! (her words) So I called his office. He wanted to see my records and scans, before I came in to see him. He called and told me that hips weren’t his specialty, and after viewing my information he felt another doctor would be able to help me more. A different Dr. Jones. I admired this doctor I’d never met more than I ever did my first surgeon. He looked over my records and films and knew to recommend me to someone with more expertise in this area, and he never charged me a cent.
My new Dr. Jones, sent me to aqua-therapy, and medical massage. I did wonderfully, I started to feel so much better (it didn’t help the pelvic pain, but my hip felt much better)….then I had to move to the gym and harder exercises, all the pain came back in a flood. Dr. Jones was at a loss. All my films showed a little of this and a little of that, but nothing that he could just go in and fix and make it better. I have a little bit of hip displaysia…my IT band is too tight, my Psoas is too tight….but he said I can’t stay in PT and massage for ever. (I thought…why not if it keeps me off out of surgery…but alas insurance wouldn’t pay for it.) By this time, the Meniere’s was demanding all my attention. Dr. Jones thought he could go in and really look to see what was going on, and possibly “release” some of the tension from my IT band and Psoas. But we decided to put this off until I could get the Meniere’s under control. He did prescribe me a ‘drug’ called Limbrel, for the inflammation, I put the word drug in quotes because it’s actually a pharmaceutical food supplement, not a drug per se. I can’t take anti-inflamatories because of stomach issues, and I’m very allergic to Celebrex! It has helped, he also has me on pain killers for the exceptionally rough days. Bad News….my other hip has started giving me the same issues. I haven’t had this looked at yet.
I decided to start seeing a massage therapist on a regular basis and she has really helped my hip. I can walk without a cane! And the day to day pain is much better. But it still hurts to have sex.
When I was younger, I was … how shall I say this …frankly…very sexually active. Much more than I actually should have been, but untreated bipolar can lead to not the best decisions, and I was dealing with a lot of other issues surrounding sex. But we won’t get in to all that.
Let’s just say, with the right partner, sex was very passionate, experimental, and one of the most pleasurable things I’ve ever experienced.
When I first started seeing Stuart we had a very active sex life….Whew, when I think of that, my mind spins. (in a good way!) The pelvic pain had started, but it was mild and I could deal with it. It didn’t really bother me, it was actually kind of pleasurable. Not to say, I love pain, but it was mainly just noticing extra muscle spasms. Then it got worse, and worse, and I started avoiding sex. I was afraid. It was very traumatic, I actually told Stuart to go find it somewhere else. I’d still be here, and still love him, but it wasn’t fair that he was being forced to be celibate because of me. He didn’t like that idea at all, and needless to say, we worked through it. He admits he never thought he’d feel this way about someone, but sex is not that important. It’d be nice if it could be the way it was, but it’s secondary.
I agree, but …. Dang it all I want it like it was, I miss it, and I need it!! I remember in the dream the other night, I whispered in his ear, “Sometimes I want you so bad it hurts.” It’s that ironic or what?
During the special PT, we found that stretching the muscles helps. But I could not get into it, when we had to stretch those muscles right before we could have sex. Talk about no spontaneity. And I felt like it was too medical. We tried to make it more, fun, but I felt inadequate that we had to go through this, and hope it worked.
Then we found a vibrator could really help. Not only could we stretch with it, and it was pleasurable to me, the vibrations calmed the muscles down and I could have an orgasm with minimal and sometimes no pain. But that’s not sex. (If anyone out there has pelvic pain and thinks this may help, please email me and I’ll tell you one of the best tools you can buy…it has saved me.) Sometimes, we can play with it for a while, then have intercourse…but the hip pain is still there. (Damn, can’t I get a break?)
Playing with just the vibrator and having mutual masterbation was fun at first, but I really, really miss just wild sex. Getting all hot and heavy, and throwing one another down and getting to it! (even if I didn’t have this problem, I think I’d have to get in better shape before I could have sex like I really want…but it’d be so much fun trying.)
In my dream, we had just met, and were so sexually attracted, we played “the game”, you know that flirting that you know is going to lead to more…and it was HOT. Then I woke up in pain. Yes, it even hurts to have a sexy dream.
I know my husband loves me, and still finds me very sexually attractive. He makes me feel desirable. But it’s so hard. I want the build-up…the game…romance. But that hurts. Often, when Stuart does little things to show he still thinks I’m hot, like giving me one of those kisses, or “accidentally” brushing my breast, or grabbing my butt in the grocery store…it hurts me. Literally, hurts me. It causes physical pain, and breaks my heart. (but mentally, I need this from him, so it’s worth it, I need to know he doesn’t see me as just a patient, that he sees me as a sex pot, like he used to.)
So even when we want to fool around with the help from the vibrator, it has to be sudden. Jump right to it. No build up…or PAIN.
I hope when the Meniere’s stops controlling my life…notice I say when and not if! I do believe it will get more manageable. Any way, when Mr. Meniere’s lets go of his grip on me, I plan to go to the UNC Pelvic Pain Center. They are supposed to be able to perform miracles. Not that I expect any, but I’m very willing to give it a try.
All I know is…I want SEX!! Really, good wild monkey love kind of sex!!
Picnic with Ants 
Dear Wendy,
I had to read this in the bathroom with the door shut for fear Max would start asking me questions.
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Guess I really should get that TMI award huh? This is something I have really wanted to talk about for a while. It’s a major obstacle in my life, but I don’t talk about it. You know, some things you just don’t talk about.
Well, I do, evidently!
Did Max think you were ill? After all, it’s a long post, you were probably in there for a while. : )
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I’ve been celibate for so long (1993-by choice-I have very poor judgment) that I can’t even remember last time I even dreamt about wild monkey love. And if I met Mr. Right now…well, my body went to hell over a decade ago with the fibro, weight gain, and OA (my knees, hips and back are bad) so it’s probably best I don’t ever meet him, anyways–LOL!
That has to be soooo frustrating for you both. I really hope that your surgery helps more than you ever expected and then you can go to the pelvic pain center and they work a miracle! You both deserve it!
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thank’s Rita.
I may never get back to the wile monkey love state…ummm, age is starting to play a part in that…but I’d love to have fun trying. : ) w
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oh, and like Stuart said, in a real relationship…sex is just the icing, it’s not the substance that holds the marriage together. You can have intimacy without sex, and the right man might prefer that. : )
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I admire you so much for being willing to post about issues that most people feel they couldn’t talk about.
I hope the Pain Center is able to help you so that you find a wild monkey or two.
Maureen
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Maureen, Oh I want to keep the same Monkey…I just want to be wild with him…over and over and …..
Thank you for the compliment. I don’t know why I can talk about this stuff so openly. I want people to know, our illnesses are not taboo. We should be able to talk about any aspect of them and get help and understanding.
thanks again my friend. wendy
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what a great and honest post ! i get the vertigo thing during sex as well and it is horrible, so i have zero sex life too, we could start a club LOL
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Fiona, I never would have thought you were in the club.
Do they know what may be causing the vertigo during sex? I have found if I take a Valium a bit before, it helps with the vertigo, and it helps me relax so loosening up those muscles is easier. But the vibrator we found is great. If I didn’t have the hip troubles too, I think it would help us get more of a normal sex life back. (It’s the Hitachi Magic Wand…just in case…it’s great for just muscle relaxation any where, but you can get attachments for special places.)
I sure hope you can get some of your sex life back….and soon! You are so young, and getting married soon! You do not need this to add to everything.
good luck! can’t wait to hear more of the wedding plans. I really am so very proud of all you have accomplished. w
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Terrific post! I think it’s SO important to talk about this. I used to always be very open about sex, sexuality, and my sexual practices. However, since I blog under my real name and have a partner who is very shy and private, she is not comfortable with me posting about this. Let’s put it this way: I’ve published a fair bit of erotica about wild sex, and although it’s fiction, one does need to write what one knows.
However, I haven’t had sex in years. I completely lost my libido to Lyme, and now that it’s starting to come back, I’m still just too sick even to masturbate. So, there you have it. In my book, there is never TMI. And your description of the anatomy and physiology of the issues is really informative. I bet there are plenty of other women with this kind of thing going on who don’t have as clear an idea as you do what the problem/cause is, and this probably prevents them from being able to understand and communicate the situation to their health care providers or sexual partners. So, I think this is a very valuable post.
I do hope so much for you (and for me!) that wild monkey sex (ideally, bonobo) is in the future for us again! ;-b
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thank you Sharon. I hope we both have some wild passionate times in our futures.
This comment made me feel like, I was accomplishing what I wanted to say in this post. Most people who read my blog don’t have pelvic pain issues, but I know other Chronic Illnesses can also rob us of our sex lives. this was a post a long time in the making. I didn’t think it would be so long, or tell in such detail about my hip issues and the medical problems themselves.
I want people to know about that, especially those who may have some of these problems and feel so alone.
But mainly, I wanted to talk about my feeling. How much I miss that part of me. I’ve talked to some who have some issues with sex and a lot of people are not as lucky as I am. They don’t have an understanding partner.
I’m going to do more research, and perhaps to a follow up post sometime in the future. I just think this is too important to leave alone.
thank you again, wendy
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Oh, forgot to mention. Do you already know about those cushions they sell just for making sex in various positions easier and more comfortable? A lot of sex toy stores online sell them. The Good Vibrations sexual education/helpline could probably tell you more about options for products for positioning. Good Vibes was the first company or anything/anyone to provide information, articles, resources on sex and disability, so they are awesome.
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Sharon, Thank you so much! I’ve seen some items, but most are so expensive not to know if it works. I remember so many vibrators we went through. My GYN and vaginal PT, recommended it, but what kind. We bought a very expensive one, that had great reviews, and it died…fast. Finally, I found the Hitachi Magic Wand, I was skeptical of it because it’s not advertised as a sex toy…it’s just a massager, but you can by attachments. It was strong enough to help release the muscles, and it is very sturdy! I would highly recommend it.
I’ll check out Good Vibrations right now. thank you! and thank you for your candor! wendy
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LOL. Wendy, we run in different circles. Everyone I know knows the Hitachi is the Cadillac of vibes. The problem is it is so damn heavy! I started a long thread on an alternative sexuality site looking for vibes or other sex toys I could use that wouldn’t be heavy, that I wouldn’t have to hold onto, etc., etc., and I was surprised that this diverse group of pervs didn’t know of anything. Lots of people with disabilities chimed in about what works for them, but nobody with my particular array and variety of disabilities. Someone is interested in trying to make something for me because we both think this is an untapped market that really needs (no pun intended) to be tapped!
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Aha! I was going to ask if it was the Hitachi. As Sharon said, it’s the Cadillac of vibes! I’m glad that you can at least find some relief.
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FYI, I have never tried the cushions because they are made of materials I can’t tolerate, due to my MCS. However, the reviews I’ve read have definitely been thumbs up, and I had a friend who bought some because she and her partner were both heavy, and that can get in the way of some positions. They really liked them. Yes, some positioning devices are super expensive, but there are some simple ones that are just foam blocks w/removable covers that are not as pricey.
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I think you’re so brave for writing about this so openly here. Many people choose not to think about what disability can do to your sexual life. I’m lucky in that I’m still able to have sex relatively pain free, though when it’s really spontaneous I know that I will pay for it later (I usually choose the sex anyway though!). Sorry to read that you’re having so many problems and I will be thinking of you (not in the dodgy way that it comes across) and keeping my fingers crossed for you.
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Thanks Wendy for sharing and for being so honest about your problems with sex. I believe there are many with chronic illnesses who share this. Being ill can take away much of the pleasures or even the wanting to have sex. Some medication also can destroy your lovelife, but sometimes you have to choose the medications, I know. One part I like about what you write is that you and Stuart can talk about this and that you both try to find solutions. As long as you can talk about it there is hope…
To me you seem as a very strong person who can handle a lot of issues and is brave enough to write aboute it. Thank you!
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Thank you Susana. I think the fact that Stuart and I can really talk about it, and express our feelings to one another without fear, really does gives us hope. We may never get back to the wild crazy sex life, but we will continue to try to broaden out horizons. : ) The more we can talk, the more we can help each other.
I should have mentioned meds and such. For example. Stuart is on an antidepressant that made him really not want anything for a while. When I had such fear about everything, I had no desire. A lot of things can get in the way of a healthy sex life, but keeping communication open is the most important thing a couple can do.
I’ve gotten a lot braver about writing about things. And each time I find it helps me a bit more. To get it out, and to possibly find one person who can relate and know they aren’t alone, that makes it worth the risk of talking about things openly.
I hope you are having a wonderful holiday season! love wendy
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Well, darling girl, this post, especially this paragraph:
I know my husband loves me, and still finds me very sexually attractive. He makes me feel desirable. But it’s so hard. I want the build-up…the game…romance. But that hurts. Often, when Stuart does little things to show he still thinks I’m hot, like giving me one of those kisses, or “accidentally” brushing my breast, or grabbing my butt in the grocery store…it hurts me. Literally, hurts me. It causes physical pain, and breaks my heart.
just made me cry. I’m so sorry your health is, well, shit, and you can’t enjoy making love. My heart goes out to you.
That being said, I find it very brave of you to put this out there as I am certain many, many others have the same issues.
And this paragraph made me laugh as I feel the same way but my husband tells me to lose my inhibitions and stop sucking in my tummy or moving my arm to a certain place so my breasts are perkier.
I’d have to get in better shape before I could have sex like I really want…but it’d be so much fun trying.)
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Robin,
Thank you for coming by my blog.
My husband says the same things to me about my tummy and such…but after being in the bed for about 5 months..well, the body needs all the illusions of betterment it can get.
But…and this should hopefully also make you laugh…Stuart says…when you don’t have your shirt on I don’t see your tummmy…all I see is boobs!!! Funny think, I think he actually means it!
This post probably should have been more than on post. One about the physical things hampering our love making, and one about the emotional feelings being caused by it. I feel like it was a bit long…some people who may need to read it may get bored before the end, and yet I feel I should have said more.
I tell you, I’m so glad my husband doesn’t mind that I put all of this out there for the world to see. He’s such a wonderful man. I’d never want to embarrass him.
I do hope this reaches some people who need to know, they aren’t alone….and I will never give up trying. After all, that’s the fun part!
thank you so much for commenting.
This was a hard post to write, I’m glad people are touched by it.
wendy
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This wasn’t TMI. I just ended a long term relationship and am now contemplating if starting another relationship will ever be possible with pelvic pain and many other areas of pain and stiffness. I can’t have penetrating sex. I too long to make love with abandon, but mainly I want to connect to a supportive, creative, and loving individual and find ways to redefine what “sex” can be. For now I will explore on my own. I want to write about it, too and I don’t plan to censor. 🙂
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AMM,
I’m glad you didn’t think it was TMI. It is very hard to even think about a relationship if you are having the kind of pain that I do. I too have very hard time now with penetration. that started after that post. But I can use lidocaine for that and it helps. It is hard though because sex starts to become this science experiment. You want the thrilling parts but before you can even attempt it, you have to do these stretching exercises and put on this creame and …. well umm can you say medical? there goes that moment.
I am extremely lucky that I am married to the most amazing man in the world. And luckily we can talk about this, communicate about it, and work on it as best we can.
unfortunately, I have had so much other stuff going on that I haven’t been able to go try to find another specialist about this.
I will probably write more about my issues with this, but it will always be a more medical type of post because I think I’d have to make this an Adult Content Blog if I didn’t, and then it wouldn’t reach the audience I want. This is more about all of my chronic illnesses not just my sexual dysfunction issues.
I checked out your blog. I hope you can keep it up! I look forward to reading more. And yes…you do have to redefine what sex can be. we have. I just sometimes really miss the old…Wild Monkey Love! haha
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Whew! After reading all the comments, I don’t believe I can add anything new. I just want to ring in with some encouragement from someone whose challenges are brain-based and not so much physically disruptive. YOU GO GIRL!
I am so impressed by your candor — and willingness to go where most people fear to tread. SUCH a resource!
In ADD/EFD-land, most of the sex posts are about sexual impulsiveness or porn [supposed] addiction – or mental issues like depression, anxiety, PTSD, TBI after-effects, etc. that complicate intimate relationships – and, of course, medications that alter sexual response. I doubt that many (if any) have thought much about what it would be like if they had to work around purely physical issues too.
As always, you epitomize grace under pressure. Sending hugs and kisses your way — and I’ll bet neither is exciting enough to cause the slightest twinge of pain!
xx,
mgh
(Madelyn Griffith-Haynie – ADDandSoMuchMore dot com)
– ADD Coach Training Field founder; ADD Coaching co-founder –
“It takes a village to transform a world!”
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I’m actually thinking about writing another post about this issue because I can’t even have this much sex now, with my hip issue. Talk about pain! Yet I still feel the desire. We still talk about it, still know we want each other, still love each other….we are very loving and open…and my husband is the most understanding and wonderful man in the world. He says he never thought he’d ever be so fulfilled in a relationship without sex. But he’d much rather be with me, just being with me, than with anyone else. (and he thinks he isn’t romantic!)
When I get this hip fixed, I don’t know what it will be like….I’m sure I’ll be scared.
Now it is very hard.
He kisses me and I start to get the first stings, that make me clench up, that hurt my hip more.
Dang. And he wasn’t even trying!! LOL
I miss him….you know.
thank you for the compliment on how I handled the issue.
I’ll take those hugs and kisses!! and back at ya!
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You probably already know about sex therapists. It might be worth a consultation after you get your hip “fixed” – during the period that you’re healing and have to be too careful for sex. I’ve never been to one myself, so no advice on what to look for or how to find a good one, but I have read that they DO work with the automatic tensing of vaginal muscles following experience of pain with intercourse with success.
Maybe one who works with post-menopausal woman? That’s a community that experiences that problem more often than the general population. It would be good to eliminate any source of pain you can, in any case. Or so it seems to one without the problem (and currently, no interest in taking a chance on a relationship that will further complicate my life while I am struggling to put it back together after the events of the past few years).
From the comments generated, I’ll bet there would be interest in another post. I’d be interested, in any case.
xx,
mgh
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Madelyn,
Our old therapist who we saw together was wonderful at helping with things like this. I don’t know if a special sex therapist would be necessary. I have such an understanding husband. He is so willing to work on things and take things slow for me. We’ve been through this fear before. I’m lucky to have a partner who is really great at caring and wanting to help me feel my best in this situation, instead of just rushing into it. Or thinking all about himself. I’m a very lucky woman.
speaking of being post menopausal….that is a new thing with me. So maybe that is something I will have to think about too.
I will be looking for a new GYN soon…asking my new general doctor for a referral tomorrow, I will ask her to consider these things when considering the referral.
If things don’t work out, I will be sure to go and talk to a professional. I’m not afraid, or embarrassed.
Thank you for your recommendation and caring.
xoxo
w
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