After reading many articles and blogs, I am wondering just how many woman are affected with painful intercourse do to fibro? I have had painful intercourse for at least 15 years and no doctor has been able to find anything wrong. One or two have thrown it up to dryness, problem being there is no dryness. I have given their estrogen creams a try but the pain is still there. After finding a site that talked about painful sexual contact, I was tickled to death that I wasn't going nuts. Several doctors have looked at me like I had two heads just because they couldn't find the problem. I would love to hear from women that have experienced this problem.
There's a name for it vulyva-something or another (I can't spell). It does occur more commonly in FM and CFS folks than in regular population. That must be the site you found. I've known one person with it for a short time (and not otherwise ill) who had surgery and is fine. I know another person who's had it since adolescense who has hesitated to have the surgery. (Based on my experience of her i think there are other underlying emotional concerns about making this big change in her marriage.) The surgery is relatively new, maybe 10 years old. I don't think it's 100% successful ( but is anything). ...And pray tell, how are people supposed to find out about it when they can't even get a diagnosis? There's an official association for it, and if you can find their website, there's probably good data! I know you titled your last comment "new to this", but I bet you're getting the feeling you aren't -new-, at all : )!
On a different note, what kinds of things have you used over the years that have helped you?
OMG!!! Finally... someone that will admit a problem with their va-j-j (as Oprah calls it) LOL - Mine has been so inflamed now for about the last 5 years. It cracks and bleeds - like paper cuts. It is miserable. My GYN says I have some scar tissue from a diff. vag. delivery that I experienced (tears)
He gave me Lidocaine gel to apply. I want to get it better - not numb it!!! I have been married 13yrs. - STDs ruled out!!!
I have had painful intercourse ever since starting to have sex and age 16. I am now 24 and have been to GYNs and even a 'sex doctor' (a specialist in all things sex and relationship related) and she said that it's not necessarily a physical problem. Pfff yeah ok. Even in a loving relationship it was still uncomfortable at best and horrifically painful at worst. It was said that dryness could be a problem but even with lube I was still sore.
The name of the condition I was trying to remember is Vulvodynia. The National Vulvodynia Association is at http://www.nva.org. A straight google for vulvodynia produced several treatment sites at the top, but the wikipedia entry appears to have some good references at the bottom including Dr. Amand on FM and vulvodynia who's well known in general on FM. It's a condition of vaginal pain that can happen with intercourse or even without it, isn't STD related, and for which there often aren't obvious/testable indicators. I hope you can find better treatments for it than you have now - hope this helps.
Unfortunately I have not found anything that stops the pain. We tried condoms with a great deal of lubicating ointments but after a bit, the pain was back. And I do bleed after sex which just freaks my husband out. We thought at first it was because of the blood thinners that I am on for my heart, but the bleeding started long before I had that problem. I can go as far back as Feb. of 1992 with this pain, and the "paper cut" description is absolutely just how it feels. I could never really get it across to any of the doctors just how it felt other than "a cut on the left side" , but the entire area was always clean so I was stumped. The bleeding started several years ago. Abstinance does not make the heart grow fonder even though I have a very understanding husband. This ordeal has not been pleasant for him either, but he does fully understand the underlying problem now. Just wish some of the doctors did.
I don't have the problem. Now that you have two names for it, maybe between them, there'll be something that helps! I saw the paper cut description on one of the vulvodynia sites too. I have no idea what the difference is between those two diagnoses.
I recently saw an episode of "Private Practice" the spin-off of "Grey's Anatomy" and there was a patient on there who was a virgin and could not give her husband a wedding night because of the associated pain. They mentioned that she had an "autoimmune" illness that caused chronic inflammation , even to the vaginal area. They injected it with something and then magically, she was all better. I know this is TV, but I thought maybe there is something to this inflamation (inflammation) thing since I have Fibromyalgia, Ankylosing Spondylitis and Hashimotos Thyroiditis. SO SO SO glad to know I am not alone. The symptoms seem to worsen when I am having a flare and pre-menstrual. There are literally splits in the skin that bleed. There is also dryness that is not asociated with hormonal changes, as I have had all hormones checked. It is very frustrating. Thank God for a great husband who sees my chronic suffering with this illness.
A frustrating topic, i get internal cramps deep inside my vagina and i get them having sex (not always) and without sex in a bad flare when i get cramps i get these then and walking i have not had the nerve to tell any doctor or consultant i just put it down to another sx, im not sure if that is what jc 5 is talking about or if anybody else has had that happen.
I have had this happen. Ithas been almost impossible to sit down because of the pain in the vaginal region. Get the nerve up to talk to a doctor. In the last several months I've had so many things to talk about that nothing bothers me now. My husband sits right there with me and if I forget something he chimes in. I haven't had relations with my husband since February because of the pain of the act itself. alaw37, if you ever find out what the magical injections was let me know. The shot would be a welcomed relief just to get the "paper cut" pain and bleeding to stop and have a semi-normal sex life with my husband.
One other thing I would like to ask of all of you that suffer with the painful intercourse, vaginal pain and bleeding after intercourse, what changes have you made or what do you do to continue to have relations with your partner? Maybe some of your suggestions or treatments can help me. My husband and I would like to know what other couples do to maintain a healthy relationship when it's so painful. Thanks to all.
Hi! Lots of patience and LOTS of lube!! Vagisisil personal lubricant is better for me than KY. It feels more like the real stuff. We laugh(to keep from crying) and call it Vag-UN - seal!!LOL. It SUX to have paper cuts feeings on your monkey all the time!!(Ha!)
I only get these cramps now and again so im not sure its the same as you, but when im in pain in my body which i get alot with fibro if that is what this is still undx yet me my husband and i just gently lay and play with each other if you get what i mean, and use lots of lube like alaw37 says, we very rarly have full sex as its too painfull all over for me but we have had moments when im ok so we have done massage and gently things to stay close to one another, and it always helps to make fun of things. i hope you get things sorted.
Do you know what I am tired of? Pain in my *** - literally! If it's not the bleeding va-j-j (external bleeding from dry, cracked, irritated skin) or the bleeding hemorrhoids that I've had since age 18 - then it's the FM and pain in my hips and butt cheeks. The trigger points in my cheeks and hips are what keep us from having sex. If we do, it has to be quick and then we feel cheated. Or maybe more so me than the hubby. I get trigger point release massages weekly (for the gluts - not the va-j-j-- I haven't gone there, yet!) sometimes 2x a week so I can sit during the day - at home, at work, at dinner, you name it. This helps some. There are good days and bad days. So we try to have sex on the good ones. Or I soak in the tub beforehand to loosen up the muscles. Spontaneous sex? Not ever. But nonetheless, at least we still have physical intimacy of sorts.
What's strikes me is that the descriptions you all give sound so much like a fungal infection, with the cuts and bleeding, dryness and irritation. Wonder if this will turn out to be like the ulcer mystery, an unidentified pathogen?
Has anyone on the websites talked about trying anti-fungals? Or taken the stuff for yellow nails and suddenly had this improve? It'd be hard to find meds for that sensitive area, or even one that targets the right fungus (if it is one). Does Nyastat (from the candida overgrowth theories) work on funguses as well as yeasts?
Exploring with that hypothosus, potential evidence would be:
1. CFS folks are more prone to opportunistic funguses and yeast infections than regular population.
2. Does it have ups and downs? I've got a fungus outside my mouth that seems to flare with immune exposure such as a virus or post-surgery. (Actually they aren't sure if it's a fungus or yeast infection, nor do they differentiate in treatments.)
3. Does steriods make it feel better (without fixing it)? For fugus usually one's intially given steroids with the anti-fungal to do an initial quick hit to the symptoms.
I have no idea whether this is relevant, but I thought I'd mention it in case it gave someone an idea. How does it sound?
I have wondered all of these exact things myself. Being in the medical field, I always try to rationalize and link everything together. And everything you theorize makes perfect sense. I, too have this mouth "thing". My corners of my mouth crack all the time. And I do seem to get a little better down there after a yeast cream treatment. But is is only temporary. It also affects my anal area. EXTREME vaginal dryness so that there is almost adhesion of labia. Anytime I am fortunate enough to have intercourse, it is always worse afterwards. I have actually tried topical hydrocortisone and have seen temp. relief for a few days. I am starting to think it will never get better. This has been going on now for about 4 years. It is always worse right before my period as well. ~Amy~
"It is always worse right before my period as well." There's a dip in immune function right before period where things can flare (such as susceptiblity to viruses). Very interesting... Maybe the approach to try is talking with different types of doctors about fungal/yeast perscriptions to try out. Or a pharmacist... Obviously the medical field doesn't have the answers right now, so creativity and trial is the only way to go. The book "the yeast connection" by Dr. Cook started a whole alternative theory. It wasn't "proven" in the end, but some of it or people's experiences with it afterward, might have ideas.
It sounds sooooo unpleasant. I hope you find something.
It IS SO UNPLEASANT!!! It is so bad before my period, by the time my period starts, I am so sore, it hurts to wear tampons or pads. My OB/GYN says I have a lot of scar tissue from childbirth, but surely that is not causing all my pain and discomfort. Looks like it is gonna be part of my life!
Hopefully with the idea of it being a pathogen fungus/yeast/infectious, one of the doctors you come in touch with will come up with an idea. They're more likedly to have ideas with this vision of it, than with the scar tissue, thinning from estrogen thing in mind. Good luck : )
Yes, I can! But, that's OK - so am I- usually! I've just learned to always put myself on the back burner. Young children can make you do that! I just have learned to live with so many things that this is just one on the very long list. :) Have a good day!
Wow I am sorry to hear of this condition. I do not have these symptoms but i must agree about the possibility of a fungal infection. You can take probiotics and apply plain yogart topically as a possible treatment relief. Vitamin A (retinol) is used to provide proper tissue fnction on all mucus membranes including the sexual organs. This can be taken internally (suggested amount-check with a phamacist -10mg-25mg daily) Maybe there is a topical ointment containing vitamin A & E (e repairs damaged tissue) Possibly using a A & or E jell cap, stick a pin in it and apply the vitamin contents directly to the irritated tissue people do this all the time for burn treatment, dry skin etc.
Hi there. I was diagnosed with Vulvodynia, now called Vulvar Vestibulitis over 13 years ago. When it started out, I was told it was lack of lubrication, in my head...etc. Finally once my bf/then husband and I became married, it was at an all time high. The day I finally realized I couldn't just try to block it out - we were both in tears. He couldn't believe I was in THAT much pain. It felt like paper cuts (great analogy) all over inside - wearing a condom did not help!! He told me then that I needed to find a doctor that would LISTEN and he would stand by me no matter what. I then found a nurse practitioner that finally referred me to a specialist at the UofM, Michigan. They were great! The treatment is completely trial and error which is somewhat frustrating - but at least I knew what I had. That was half the battle! I tried Elavil which helped tremendously - as long as I wasn't trying to get pg. At that point, we weren't having sex! So I didn't mind! :) When we did want to try for kids, my meds were switched, I used the numbing agents, and we had sex only when it counted. Meaning....I took care of him...almost to completion and then we just finished together. To be honest, I didn't want him near that part of me - it was too painful. It sounds like you have a very understandable husband who will work with you on this. Be creative - take care of him and if you can stand it, have him do the same. In my experience...it wasn't possible for a long time.
After kids, amazingly enough my condition improved greatly. There are things that trigger it and I now know what most of those are - amazing enough - I can NOT take BC Pills. I also can NOT drink Orange Juice OR take vitamin C. Within 24 hours of having it, I feel the condition flare up!
As mentioned above, I have Vulvar Vestibulitis. One of the first signs was immense pain when inserting or using a tampon. Taking it out was equally painful. During my period was horrible - there were days I couldn't walk from the pain....
At the time, I was also on BC pills. As a way to lessen the sypmtoms and pain, my doctor had me skip my periods. She/He can tell you the safe way to do it, but it did help. I didn't have to look forward to a week of sheer pain followed by another 2-3 days of just recovering from it. It may be something you want to look into.
Hi.........sorry it took so long for me to write but the fibro flare-ups hit me this past weekend. Holiday stress, the first holiday that my brother-in-law has been gone and just all around pain. The words "paper cut" fit my pain to a tee. The last time that my husband and I were intimate was about a month ago. The pain was unbelievable and bloody. It takes several days to start feeling human again. This has been going on since 1992 (that I know of or can remember). I went to my GP the next day and low and behold for the first time a cut was found. About 2" long. He thinks it is because of low estrogen, so he puts me on a low dose of that and also premarin. So far this mixture hasn't bothered my heart, but he gave me no clues as to what to do in the meantime (for pain). Where do I get this numbing agent you use? He wanted me to use the estrogen creme, too, but that has not prevented the tearing so far and I'm just totally at a loss. I didn't go through the change until two years ago so I don't completely feel that the problem is the low estrogen but my OB/GYN hasn't been any help. All he could say that he was sorry I had fibro and that there was nothing he could do. Just exactly where is a woman to go to get the kind of help that I need. Does anyone think that the rheumtologist that I have an appointment with the 12th will really help? I'm just so discouraged right now I just want to give up. Why do doctors have to be so difficult??
This is to you and to all. I'm not sure what to say first. I am so moved by this blog. I've been educated, I've shed a few tears and thought of a few things. I have some experience in both the health profession and as a patient with way more chronic illness than a "healthy" woman should have.
I had intercourse and menses at vaginal entry and feeling of the "paper cut". I have learned two things that have stopped the pain and "paper cut" pain at the opening of my vagina. Make that 3 things.
First, a specialist at OHSU using a special light/scope blah blah found that I had what amounted to a mild but chronic "eczema" of my right Vulva. It was not evident to any ordinary assessment and I was too sensitive to the creams, but one did help when it would get severe during max times of stress. I was told to "watch" the area because it would always be at higher risk for cancer in that area because of the constant cellular reproduction.
Second, I found that I'm allergic to several things that are uncommonly reported as allergies. I have the common ones-latex, blah blah blah. But I found that I'm allergic to propyl glycol (spelling?) which is THE most common preservative I've ever seen. It is in every lotion and lubricant I have seen marketed. The only lubricant I eventually was able to use was Extra Virgin Olive Oil, some people use Hemp oil. Remember that oil will change the effectiveness of some condoms. I had vaginal dryness because of low thyroid and always will. So, By not using anything, ***including prescription cremes**** with propyl glycol, and only using natural kitchen products for lubrication I stopped a large number of the external vaginal pain events with the paper cut feelings. Sometimes I also described it as getting intimate with a turned on curling iron! Sometimes.
Then it all got worse again. I couldn't understand why I was having such pain with and lasting after intercourse. And then I found something very significant. I knew I was allergic to soaps and had been using nothing but tearless baby bodywash for years. But now I it all started again. I never would have guessed what it turned out to be. I'm allergic or sensitive to nicotine. Well, I guess that makes sense, since I had to stop smoking because my lungs react so badly to nicotine, and then the alternatives were also making me sick. But now, the nicotine that absorbs into a smoker's skin communicated with whatever moisture we have in my vaginal mucousal area and I had a reaction to it. The same, sensitive, paper cut feeling reaction and sometimes I developed a yeast infection because of the new irritation. So that was a double whammy!
So for all of you who have external pain, look carefully at everything that comes in contact with your V-JJ and start replacing anything with chemicals with as natural and sensitive stuff as you can. It stopped my external or opening vaginal pain and painful intercourse at the opening.
NOW THIS. I became celibate for the first time in my adult life for about 6 months. Even through painful intercourse I had remained torturously sexually active. I went back a sexual partner last month and had, by far, the worst, 9 out of 10 pain I've ever had without a fight or surgery upon full penetration. I'm not deep, I had a hysterectomy when I was 24 and so I'm really not deep, but it has never ever ever been a problem. I had to stop and then tried again weeks later and had the same results. Unusual for me, I sought medical attention and "everything appears to be normal". I thought, "of course it does". I had a Pelvic Ultra Sound today. The pain during the "wand" portion of that test was enough to cause me to want to be violent. The left side of my vagina has joined the fun. So now my left vaginal wall and full penetration area have severe pain with any pressure applied. I had tears running down my cheeks as I tried to stay calm. I could tell she was looking for something, looking for an answer. I was in the health profession for 23 years and I've been sick for longer. I know this drill. Her last remarks to me, in a forlorn voice, were, "Yeah, and I hope they figure out what is wrong for you." I know that the US is normal and have no desire to debate that.
I remembered on the table, the Rheumatologist told me I have Fibromyalgia. It has been episodic so I've been lucky. But it hit me, what if this is fibro? NO! Fibro in my vagina? NO? ..... yes.
That surgery at 24 was 24 years ago and there may be some scar tissue, but I've dealt with that before. That may be a tiny trigger to the big big gun of the Fibromyalgia pain. I looked at the article linked above and I cried. I was a tough sell before this, disabled, nearing 50, kids live at home, pain syndrome, and now... I can't have sex? OMG. I'm not sure I can handle this one folks.
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