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Vaginal Pain
41 Replies
cyllk - December 5

O.K., ladies! I'm not trying to be nosy or invasive; I'm looking for answers. I have fibro and have had chronic vaginal pain for years. I have tried and am tired of doctors, well meaning friends, and my husband telling me to relax more, reduce stress, use vaginal lubricants, increase foreplay and intimacy, and by gosh, just kick back, relax and have fun. Hello! Read my lips, both sets! I hurt! It seems the very tissue of my labia (sorry if to graphic, but I need to state specifics) is raw without any outside physical irratation. Raw burning and irritation is the "natural" state of my vagina's existence. This is not a urinary tract infection, been there, done that, had treatment. This is not a yeast infection, again, been there, done that, had treatment. I have had this problem for years, it is not just situational, it occurs without any outside influence. For no reason, I just burn and am raw. Of course intercourse and peeing makes it worse. My point is it burns before these things take place. And after these acts are performed the rawness and burning are a tad bit worse. Worse, like, I need to bite on a stick to keep from screaming when I pee or try to have sex with my husband. So that's my question. Any other women out there experiencing this and willing to admit it and talk about it? Just looking for a little validation, empathy, and understanding so I can vent with those who understand what I'm talking about. Thanks for your time, In Joy, cyllk


Amyloo - December 6

Ok, me too. It doesn't sound as bad as you though. My labia feels sore, almost bruised. Vaginally I don't have pain except during sex, which is just unpleasant, not unbearable. (Sad, huh.) I cannot believe how understanding my husband is; I usually tell him "ok you have five minutes, go."


barbar - December 6

Cyllk, I do not have the difficulties you have but I have seen many other references to it on other fibro forums. It appears to be somewhat well spread among the women sufferers. But don't be worried if you find that not many women have the same affliction; we all have our "signature pains." I, for one, have never encountered anyone who has the same paralyzing pain in the legs and an artist friend of mine, tragically, can no longer work with her hands. Another woman on another forum cannot bear to have her husband hug her. And to be candid, my problem in the vaginal area is that I feel little at all. Sadly, the one place where I have lost sensation. We all have something special. When you speak with your doctors, have they offered anything to address the symptoms? What kind of pain medication are you on? (Yes, other readers, I'm back. I couldn't stay away; couldn't have some 'zapper' destroy our special place.) Barbar


carrie lee - December 6

Barbar, ufortunately like you of all places to lose sensation, my breasts and vaginal area are the ones my body has chosen. It is difficult and thank God for understanding husbands, and too bad for us, I dont know how old you are but I'm 38 and not ready for the honeymoon to end so to speak.


CarrieLee - December 13



barbar - December 13

CarrieLee: What does 'Bump' mean? Does that mean you are trying to 'bump' these posts closer to the top so we can re-focus on our newbies? I think that's a great idea and I have been trying to 'bump' them up too!


CarrieLee - December 13

Yup! That exactly right Barbar!


JJ1 - December 13

I think the intentions are good, but it is also one person taking over the site which is not good. If you have a legitmate response to something that you missed cuz it was buried then respond, but don't just arbitrarily bump what you personally think is important to the top of the list. You may have very well buried something that was important to someone else.


abc97203 - July 6

This is long, and for that I'm sorry, but it could really help. I have stupid fibromyalgia and don't like it one bit. But I've found that some fibro events are like migraines. If you get the initial event before the cascade event of migraine pain; then you can greatly decrease your events.

I found some of my "triggers" for my vaginal opening pain. Everyone is different, but I bet you will find that there are things besides intercourse that are upsetting your delicate tissue and that fibro is making those messages torture the bejeezuz out of you.

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.

PS: I mentioned the whole hatred of platitudes thing to a doc once. He said, "Ah yes, the whole pick yourself up by your boot straps when your barefoot thing." That said it perfectly. They have no idea what it's like to be barefoot and need to learn more and postulate less.


Jocelyn - July 7


I too have suffered for years with virginal pain. It started in my early 30's with some burning after intercourse, then when having intercourse it felt like sandpaper was in there. It would come and go and I used several lubricates to help. Many times I had to wear a skirt because it was too painful to wear pants. I went to the doctors many times and because things were extremely red and inflamed they thought it was an infection. That was not the case. It was a mystery. As the years progressed, the painful intercourse became worse. The skin would feel like it just wouldn't stretch causing paper cuts, burning and extreme pain, I would run to the bathtub and put hot water on it to stop the pain. I know that sounds odd, but it is the only thing that would put and immediate stop to the pain. These paper cuts would last for about 3 days and I would want to scream every time I needed to urinate. If I were at home, I would run warm water down my front while urinating and that would help with the pain. The symptoms would finally calm down and then it would be time to do it all over again. This was a viscous circle for many many years.

Then I went through menopause, well that put the frosting on the cake. It became so painful that I was not able to have intercourse at all. The doctors wanted to put me on estrogen, but my husband and I discussed the side effects and decided against it. In the end, the doctor told me that it most likely wouldn't have worked because the excessive dryness is so bad.

About two years ago I was diagnosed with Fibro and Sjogrens. I feel the Sjogrens is what has been playing a huge part in my virginal dryness and the lack of elasticity within the area causing severe pain while have intercourse. Although I am only 56, I can no longer have intercourse. At this point, the pain is so bad that I cannot even sit at work to do my job.

I have never tried the extra virgin oil, that sounds like something I ought to try, I am also allergic to latex and products with preservatives. Latex condoms made me miserable when I was young. Maybe it will put enough oils back into the skin so that it will stretch. Even having my yearly gyno and pap smear exam is extremely painful.

Not sure this post helped, but it at least lets you know someone else has your problem.
Symptoms: Paper cuts, severe burning, sandpaper feeling, outer tissue pain for no reason at all. Wiping myself can cause pain on any given day and on others, no problem.

Take care


January - July 7

Well. Here I go being a broken record again about gluten. Some people who are sensitive to gluten have all sorts of skin issues. Anyplace where the skin is thin can tear easily. I've even heard celiac disease discussed as two separate entities, celiac disease of the intestines and celiac disease of the skin. If you have allergies, you might also have gluten allergies. Try the diet for 6 months and see if the symptoms resolve.

As for the lubrication, there is an interesting product out there called squalene - it is shark liver oil. (It has been in the news because some people feel its presence in vaccines is controversial). However, it has anti-bacterial, anti-fungal and anti-viral properties from what I've read. I've used it on my very dry and sensitive skin with no problems.


abc97203 - July 8

Hi January, Don't ever stop speaking your truth, especially when it is so much more than the platitudes we've been handed too often. While reading your post I remembered that my "vaginal eczema" like condition that mimics what you all describe so perfectly also flared up when I ate almonds. Of course, shorts, jeans, and now even underpants with soft "yoga" pants can start the irritation. Anything that creates friction, yes, even wiping. I became such a great little detective that I know most of what causes that external peri-vaginal redness, pain, inflammation. It would go away and then come back and that was a game changer in a few relationships. The elasticity was a good point, I lost some of mine to scar tissue. I have Behcets, but I also think this repeated inflammation left scant scar tissue each event and that has contributed to the decrease in elesticity. On the other side, if not aroused or fully aroused, especially if the male is not *fully* erect, this causes increased drag and friction on the fragile skin and I feel torn up after wards, sometimes even during, and no lubricant changes that. Local production of (Prostaglandin E-1 ) PGE-1 and the degree of your sexual arousal play a role in how "erect" or firm we become before intercourse. I think that, because of the pain, it is difficult for us to reach a complete arousal state. Sex can become like laundry, it's just gotta be done. Arousal increases PGE-1's production... now ladies, how do we get aroused?

Now that I have this deep vaginal pain, and vaginal wall pain that feels like I have a wound but there are no visible signs that I have any problem on examination, I am much more willing to work with dairy and gluten. Both will be serious for me. I'm a pretty liberal vegetarian for the most part and to loose one or both of those is going to really upset my apple cart. But it can be done. The article I read was about our fibro, in particular the fatigue. You know the feeling? The one where someone snatched your Everready batteries and left you with expired RiteAid batteries...that feeling. It suggested to start by eliminating one for 6 weeks and evaluate how your doing. Apparently, 6 weeks was the marker to *begin* to see changes. I have no doubt that 6 months is superior to 6 weeks. So, I'm starting with dairy. I have had a few clues that I may have become sensitive to dairy products and if my colon is irritated, as I suspect on palpation and it being in proximity and the scar tissue from my hysterectomy so many years ago... I am hoping it will quiet it down. I hope you guys are doing a better job with sleep. I had two separate 3.5 hour sessions last night interrupted by about 5 hours. Yeah, no good. And I'm in a full fibro event. The pain is unreasonable.

So, my most loved cheeses, treats of an ice cream, latte using milk, and even yogurts... gone. I can't believe it. Just gone. No grilled cheese, or cheese and popcorn for dinner. It is amazing to think about how much just taking away one thing changes a person's behavior. I'm eating dry frosted flakes out of a baggy and thinking... Ugh, I bet dairy is used to make that frosting....I bet these are all gluten and I'll have to give up my frosted flakes... What A Whiner!


January - July 8

abc97203 - thank you so much for your kind words! They came on a day when I needed to hear something nice! I appreciate it. I once worked with a doctor who was smart about food allergies, and put his patients on a diet of brown rice and lamb. Then he slowly introduced foods to see what groups of food they were allergic to. He worked miracles! You can probably research allergen elimination diets online, or maybe find a nutritionist to work with you. I don't know if you want to try gluten free, but here are some thoughts..

A lot of your symptoms sound like things related to celiac disease. Fatigue, pain (that can't be diagnosed), skin problems, insomnia… I read the book Dangerous Grains (which you can get online as an e-book). They have 4 or 5 pages in the back of diseases and conditions that are linked to gluten. Doctors are simply NOT educated about delayed food allergies or gluten problems - which can make you seriously ill and even kill you! You can go into a coma from acidosis if you are gluten-sensitive. Before you go on a strict diet, you might want to think about getting a blood test for delayed food allergies. I know LabCorp has one available that tests for over 90 food allergies. Take the test before you eliminate suspect foods from your diet.

I didn't REALLY feel better until I had been gluten free for a year. Then I realized! No more muscle pain, no knots! No depression! No constant colds and flu viruses. I lost weight, got a flat stomach and felt much better. After a few years, I realized it was oatmeal that was giving me skin rashes so I avoid that too.

The gluten free (celiac) diet is pretty healthy, you can have all your fruits and veggies, rice, corn, potatoes, tapioca -- all you cut out is the protein found in rye, barley, and wheat (gliadin). So no more "normal" bread, cookies, pasta, etc. (But you can have these foods if they are made with gluten free flour, like rice flour.) No wheat-based soy sauce, no beer. Nothing with "starch" or "flavorings" that aren't specifically named. You have to read labels and make sure OTC drugs don't have "starch" and other gluten ingredients - call the company and ask. Tell your pharmacist you must have gluten free. Crest toothpaste is gluten free. There are sites online for celiacs where people trade information about what is safe to eat and put in or on your body. You would be amazed at how much packaged food has "wheat" in it, and you can't have wheat any more.

Oatmeal has avenin, and 15% of celiacs are allergic to that too. Also, a lot of celiacs are lactose intolerant!! And a lot of celiacs wind up with diabetes. (My suspicion is it's not really sugar that's causing the huge increase in diabetes, it's the fact that everything is full of cheap wheat products and we are "used to" the glue-like taste of it - it "fills us up" so we think we're full when really we are not getting good nutrition.) When I am completely gluten free, I don't feel "hungry" unless I really am. Your body has to adjust to not having that "glue" in it, but once you do, you feel better.

Well, all this is only my opinion, based on what I researched and what I did to keep myself from dying at the hands of the medical profession that was slamming me with treatments and drugs and making me sicker. I finally realized they were not going to help me, I had to do it myself. The internet is great for research, but you have to keep careful notes about what you're doing, don't overdose on supplements, etc - and get some good medical advice.

If you think you are lactose intolerant, you might try a supplement to help you digest lactose -- that would be the enzyme lactase. If you're not really allergic to it, then you might still be able to eat it. The enzyme will help you digest it.

Don't want to make this already long post too long. You can always plug in "gluten" to the search box at the right. And the internet has more information than it used to. The Celiac Sprue Association is a good place. Also, be aware that companies are jumping on the bandwagon to sell Gluten Free because suddenly it's popular - just because something SAYS gluten-free, doesn't mean it really is. You have to keep a notebook and keep track of how you tolerate the various foods you try. I've had trouble with several types of "gluten free" food.

Good luck on your journey - if you have allergies and can pin them down, you really will notice an improvement in many different areas, as your whole body will start to function better.

PS. If you give up frosted flakes, amaranth cereal flakes might work for you!


abc97203 - July 9

To all who have vaginal pain, you're not alone. I think we've seen that we are all ...delicate to our surroundings, to what touches us, and what we consume. I haven't been able to have almonds, beer, and many more things that make direct vaginal contact for years in order to avoid vaginal pain, the paper cut, raw, OUCH pain. When the peri-vaginal area is effected, I put a small amount of betadine in water in a tumbler to rinse my vagina when it was irritated. It helped me avoid a yeast infection when it is inflamed and it has a subtle settling quality to the tissue. Works very well after urination or a few times during the day. Everyone knows what cup by the toilet is mine. : (

Hang in there, because the correlation I am trying to make does relate to our vaginal pain, all our complications. An article on an association between fibromyalgia and PTSD is on the home page. They did not allow my response to the article. That is discouraging. I will not repeat it here and risk not being able to communicate with you all. But the article had really valuable information. "This study found a strong correlation between fibromyalgia and PTSD in Israeli soldiers. Fibromyalgia was found in 49% of those men with long-diagnosed PTSD as compared with only 5% of those who suffered from depression as a result of their wartime service." None of the men complained of vaginal pain. : ) Time for a little levity. This was a study of men, Israeli soldiers,(see article) and I'm grateful because I am weary of this being some "lazy housewife" syndrome.

For those of us who are reluctant to examine anything that's been called mental health with fibromyalgia I want to encourage us to think scientifically. We know many of the changes in brain chemistry and even brain structures for many "mental illness". The article even acknowledges brain structure changes for the PTSD patients. If the brain with Alzheimer's shows changes on a CT scan and the brain with other "mental health" conditions show brain structure changes, then it seems that a mental health diagnosis is as valid and serious as a medical diagnosis. I have PTSD and, when triggered, I am living the event again. This was a "loop" created. It seems reasonable that I am at risk for other loops, like a pain syndrome loop, to develop. HOWEVER, something in my environment caused the PTSD and I'm fairly convinced that something in my environment has triggered the fibromyalgia. Advanced complications, such as our vagina's becoming sensitive and fragile, have a good potential as being triggered by environmental factors. This could be topical's, things we drink or eat, or something in the air. We just don't know. But enough people have had positive results by removing gluten that I can't ignore it anymore just because my american heart hates to be inconvenienced. I want relief, I want my V-JJ to work again. I'm a touch sell as it is, and a broken V-JJ is just pushing it too far.

Science has been unable to show a correlation for mental illness, except for PTSD. If you have PTSD and have this vaginal pain, I wonder what the studies would show? Would there be as high as 49%. That is an amazing rate.

Thank you January, now that I'm willing to look at ANYTHING that will make life better, why not just accept that food sensitivities play a role in over all health. "You are what you eat" isn't a new concept and our food sources have been changed.

As people with fibromyalgia, we tend to have multiple health problems. Some people expect pharmaceutical companies have our best interests at heart and will make a pill to fix everything; probably unrealistic. How often have we seen it be too expensive for said companies for orphan conditions, and all of the life threatening crippling diseases we can't stop, and barely treat? I again refer to Alzeimer's. I know how awful I have felt when I get lanolin in a lotion, examined with latex gloves, eat a handful of almonds, exposure to nicotine on my lover's, et al, and pharmaceuticals too. I will miss gluten less than cheese, but the idea of waiting a year for full benefit is harsh for this instant gratification american. boo hoo. Removing triggers to vaginal pain took a few months to have good results.

Now that my vagina opening, vaginal walls, and deep penetration, and possibly my colon are involved WHILE I'm having fibromyalgia too... ENOUGH. If I could start to have intercourse without cringing... screw the bread!!!!


Jocelyn - July 9

Good Luck and let us know how you are feeling. I have not had PTSD, but my mother had Lupus. There is a corrolation between the two. It just isn't fun!


January - July 14

Hi abc - I tried to answer this before, but couldn't finish it all, so just erased it. Things have been busy, and I'll try and keep it shorter! LOL!

The main thing I wanted to address was the link between PTSD and fibro -- very credible, IMO. PTSD is an anxiety condition, i.e., certain things trigger fear (including all the body chemistry involved, the sleep disorders, the nightmares, the hypervigilance, etc.) Your muscles are always tense. When you go through years of tensed up muscles (and PTSD tends to get worse over time, especially if the situation is long term), you might expect that the muscles would knot up with pools of lactic acid - or somehow be damaged and very painful.

I have PTSD related to several different situations - they were long-term and involved physical and emotional pain. I had a very abusive parent that set me up for this, but other things happened over time also. I never slept well, and was often sick and exhausted even as a young adult, but pushed myself to achieve. Coffee, more coffee! By my early 30's I was experiencing occasional episodes, during high stress, - of extreme back and muscle pain when I would be in bed for a few days. Probably "flares." If anyone sneezed, I got sick because my immune system was so run down. I got the official diagnosis in my mid-40's after going on vacation with some very energetic people. After a few days, I collapsed and slept for 36 hours straight. Came home sick as a dog with a virus that lasted 3 months. You cannot push yourself and burn the candle at both ends forever!

There has been a lot of research that ties chronic stress to the development of fibro, and it makes sense. Stress depresses your immune system and makes you susceptible to infections. It upsets the balance of your body systems and your body chemistry. It tires you out. Add in pain, and the depression that comes with chronic stress, pain and exhaustion, and here we are…

My plan for living a decent life now includes making sure I get the nutrition and sleep I need, and avoiding stressful situations and people (even if they are family).

Let us know how you are doing with your journey to heal yourself. It's really more in your hands than in a doctor's hands -- at least that's how it worked for me. I did a lot of my own research and tried different things. I started with Dr. Jacob Teitelbaum's book, "From Fatigued to Fantastic," which was very helpful.


Jocelyn - July 15

Thank you again for sharing such details of your life. I agree that any type of trauma during your childhood or adulthood, can cause what one has developed now. I too had trauma in my early years, My father was an alcoholic and every Saturday night he would drink until he was so drunk and then pick a fight with my mother. My nerves were so bad my entire body would shake. I would not sleep that whole night because I wanted to make sure he wouldn't hurt my mother. My father died at the age of 60 and it was a blessing for my mother. I had, earlier in my life, wished that she would leave him, but like many other women of her times, my father was the bread winner and she only had a high school degree. She later in life worked part time for a little over minimum wage, but while we were young she stayed home to take care of us kids. We went to the best schools and lived in an upscale neighborhood. She wanted us to not have to live like she did, she wanted us to have options, that she felt she didn't have. I stopped blaming her when I understood her reasoning, there were no support groups for divorced women or help for that matter, child support was still in the works, but wasn't enforced. She did later understand what it did to me mentally and also physically. In the end, all her children ended up with a great education and good jobs. She ended up having a peaceful life without my father for 30 years. Was it worth it? I really can't say, I don't know if I would have been better if she left because that didn't happen. He drank one night a week and was a very quiet man the rest of the week. I may have become emotionally upset moving to a different school and may have had other problems associated with the changes in my life. I was very sensitive and things would bother me regardless of what was going on. I believe some of that was inherited and the added stress of my life, just toppled me over. When I was young, divorce was really not something that happened much at all. So...I have had a happy life with my husband and children. But, I am left with these problems. My mother who was never sick a day in her life came down with Lupus at the age of 60. That was nine years after my father died. She was working two jobs in order to keep the house etc. Did stress active a Lupus gene? Had her life been easier would she have not developed Lupus? I do believe so. She is the baby of her family and her three older sisters are 82, 85, 89 and are in good health. All had different lives but have different personalities which may have helped them deal with the stress in their lives, giving them a longer life. Stress does kill! My mother died at 78, she is the only one who developed several rare diseases, included gallbladder cancer, that did not kill her. She died of an unrelated event. However, the stress of going through Chemo and waiting for the cancer to spread put so much stress on me that I really was very sick for a while. I am hoping things will continue to get better for me now.



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