Secret Suffering - A resource community for women who experience pelvic and sexual pain

The other day, I was at the doctor’s office. Across from me was this really pretty young woman, about 26, maybe. Skin glowing, dimples, the picture of health. She was a representative from one of the big pharmaceutical companies. We started talking and I told her about the work I’m doing. I expected a polite, uh-huh. But instead, in a rush of words, she told me, “I have sexual pain. I’ve been to the doctor over and over and he says there’s nothing wrong.” She went on, but I know you already know what else she said. It amazed me that even within the “ranks,” women are still just patients. I gave her my card and took hers as well. I hope she screams loud enough for someone on the Penthouse floor to hear.

I really believe in the power of diet to affect my pelvic pain. I live on a weighed and measured food plan as I have for the past ten+ years. I’m a food addict and lost about 50 pounds in a self-help program. I don’t eat flour/wheat, sugar, or artificial sweeteners. My chemical sensitivities preclude dairy, vinegar, and a host of other foods. Plus, I do my best to stay away from foods that flare up my symptoms. For instance, strangely, carrots and green beans, brown rice, the healthiest food on the planet, I think. Though I have to say that rice cakes seem, oddly, ok. I really want to be a vegetarian, but soy gives me headaches and beans, well, need I say more?

Sometimes, I’m in a hurry and want to be able to make a quick, simple meal. Nuts. That’s a great idea. But having tried a wide variety, I can tell that I flare. But right now, I’m unwilling to give up almonds. My diet is so bland, so every day the same, that I just need a bit of variety in order to maintain the willingness to do what has worked for me for the past ten years.

But almonds, I love them. Though food is no longer entertainment, I must admit to enjoying the texture and crunch. I weigh 1.5 oz at a meal and that is enough for me.

However, the burn and sometimes, urgency to pee, is often increased within hours and certainly by the next day. In the evening after eating them, when I use my lidocaine, I want to jump through the roof. Sometimes the burning gets so bad I cannot cross my legs. And sometimes, I don’t notice it at all … especially on nights I don’t use the lidocaine. I can ignore the burn until I eat them for a number of meals (because I think I’m “getting away with it” since, for some reason and sometimes, there is no palpable pain). But then, when I remember my lidocaine or we try to have sex (not me and the almond, but my husband and I), oh boy does the pain rear its ugly head. But a nagging doubt persists that maybe there was something else going on too.

So, why can’t I stop eating almonds? No, the question is more, “why WON’T I stop eating almonds?” I do sometimes for a month or so, and often the pain subsides. I think it comes down to that gray area about which I often speak. How much pain am I willing to tolerate? My mind playing tricks too - oh, maybe it isn’t the almonds - because sometimes, it doesn’t burn. And with my sensitivities, there could be so many factors contributing.

But I know that without almonds, or any other nuts, it would be one less factor.

There is no answer to this problem. Living life with these conditions requires compromise and acceptance for me. My actions lead to certain results. That’s just how it is. So I cannot bewail my fate if I can take an action to change a consequence … but I choose not to do so.

Therefore, it all comes down to an almond. And what choices I will make just for today.

I am nineteen years old and have been suffering from Vulvular Vestibulitas since I was twelve. I have seen a variety of specialists and I am currently on an antideprresant which has helped to ease the pain.  Recently, I went to my naturopath to see if she had any suggestions for treatment. She worked out a treatment plan for me which included splitting a vitamin E tablet and applying it topically ( she also informed me that vitamin E can break condoms ). The vitamin E seems to be working as I am less sensitive to touch and have fewer flare ups.  I have yet to discuss this treatment with my gynocologist so i dont know what her thoughts are on it but it seems to be helpling. I just thought I should share my experience with this treatment as it may be able to help someone else.

Secret Suffering is about sex. But it’s not a “sex site.” However, I need to talk about something I’ve never heard anyone mention, including doctors and my own PT. So here goes.

First, let me say that I feel so lucky to have found a PT in Florida who performs pelvic floor physical therapy and has treated IC and sexual pain patients for years. She also treats any kind of chronic and acute pain as all PTs do. She works in a podiatrist’s office, in the back room. Kind of funny to me. All these seniors getting their calluses shaved and their ingrown toenails clipped while my most personal of body parts receive treatment. Though I must admit that my feet have always embarrassed me, due to my extended second toe. But I digress.

It seemed an uncomfortable idea to begin with. Someone, a stranger, touching me “down there.” Actually using her fingers to press on painful trigger points to release them, just like in my shoulder … only in, well, ok, I’ll just say it, in my vagina. Not to mention, I’ve heard that these specialized PTs sometimes use a dilator, which is, to me, just another name for a dildo, raising my anxiety level even higher.

But I’ve been interviewing these specialists for the book and they are all dedicated women passionate about helping other women find long-lasting relief from their pain, and very serious when discussing their work.

And just about every doctor I’ve interviewed, including some of the top experts in the field of pelvic pain, have insisted that pelvic floor physical therapy is an integral part of any successful sexual pain treatment plan.

So, I went to see the PT. The first session lasted two hours. I ended up feeling very comfortable. Plus, the loud whirring of the callous remover in the next room was somehow soothing and reassuring. Of course, I was still fully clothed and all of the treatment still theoretical.

Continue reading Pelvic Floor Physical Therapy (PT) – a close to X-rated and long post »

My mom died of breast cancer in 1981. She was 56 and post-menopausal. When they found it, it had already metastasized to her bones. She fought for six years, but finally lost the battle.

I’m nearly 53 and haven’t had a period for a year and a half, so I’m officially in menopause, myself. My aunt has begged me never, ever to use hormones because of the link with breast cancer. So I have gone through all of this cold turkey. My hot flashes were not so hot. Mood swings and my sexual pain were, and continue to be, the worst part.

Recently, my gynecologist, who I really trust, strongly suggested my using a vaginal estradial insert called Vagifem®. She mentioned the Estring®, which feels something like a diaphragm. I did try that once, but it was very uncomfortable. She explained that the risks involved are far less than other methods. Of course, I realize that no hormones are risk-free. However, she said that my vaginal walls will become thinner and thinner over time, as my estrogen level continues to reduce, which will cause painful friction and increased dryness. So this situation will only add an additional layer of pain to my already overflowing list of conditions (e.g., vestibulitis, IC, vulvodynia).

My dosage is one tablet inserted twice a week and I’m on my third week. OK, I haven’t had sex yet, but I’m amazed that the daily burning has really subsided. I am using Lidocaine® as well, so maybe it’s the combination. But there seems to be a real difference. And, I’m highly allergic to so many things that I thought I’d need a compounded dosage made from some unusual hypoallergenic material. But I’ve had no bad reaction at all.

The thing is, if this were just to have sex, no way would I consider it. But it has reduced the chronic pain I live with, which makes my quality of life better.

DISCLAIMER: I’m absolutely not advocating hormone therapy for anyone else. That is strictly between a patient and a doctor.

However, I feel strongly that I need to share my own experiences in this forum if I am asking you to share as well. In that spirit, I’ll be updating you after I have sex. ☺

I’ve been thinking about how many women (and men) have talked about how only intercourse is “real” sex and “real” intimacy. But I, personally, don’t believe that. Tonight, it ocurred to me that this is somewhat like my experience having a baby.

I wanted “natural” childbirth. I had a midwife and was determined to experience every single moment of the delightful labor pains that I would joyously embrace. No medication, no epidural, no nothin’ but me and my baby working it out together.

Then, about six weeks from birth day, I find out that Sam is breech. Well, no, this is not acceptable. They do a “version” (try to turn him using an ultrasound machine to watch). Three doctors and one stubborn kid. You can imagine who won. Just as an aside, they managed to push him half way there. They stood back with a smug smile on their faces. I swear I’ll never forget it. And then, just like that, he popped right back up. With a disgusted wave of the hand, they just said that was that … and walked out. Seventeen years have passed and I remember it like it just happened.

So, we had to schedule a c-section. I was devastated. The only “right” way to give birth was natural. That’s the message I had received. That’s what I wanted.

We picked a Friday. We went in, they gave me a very painful shot. And out Sam came. Now, don’t get me wrong, there were other problems associated with the c-section. But I never felt a labor pain.

Afterwards, when speaking with other mothers, when the subject came up, the moms who had given birth naturally seemed to feel that it was more “right.” I truly believe it was not just in my head. And truth be told, I felt that way too.

But then, someone finally said - “Who cares how you have the baby, as long as it is healthy?”

I still feel there is a judgement around about those who have children naturally vs. those who don’t. Subtle, but there. Just my opinion.

Anyway, that is how I feel about intercourse. For heterosexual women, it’s not the only real way to have sex as far as I’m concerned. There are vibrators, fingers, tongues, and whatever else two people can figure out to have fun and make them closer.

Does my husband feel deprived sometimes because we can’t have intercourse. Yes. But that sure as hell doesn’t mean I have to be in pain to keep him happy. And when we experiment and make each other have an orgasm in other ways, we feel very intimate. And he’s over it. Certainly a lot faster than the time it would take me to recover if I am flaring up and we have intercourse!

Sometimes, I’m well enough to have intercourse, and I’ll wait until he is close to finishing and then it’s ok for a short time. But even if not, we are still able to have a full sexual experience.

The orgasm, the closeness, the intimacy, the bonding … making each other feel good - After all, isn’t that the point?

However, I think this is like having a baby. Some people thinkg

Sam laughed. In fact, he giggled. And I wanted to cry. I was sad because I haven’t heard Sam laugh in so long. And sad because it was with his father, with whom I’m not laughing and to whom I’m no longer married. Don’t get me wrong, Sam’s dad and I get along … I just wanted my share of that bonding laughter with my son.

There’s a point to this that has to do with chronic pelvic pain and relationships. But bear with me a moment.

Sam was at his dad’s house. I called and his dad handed him the phone. I heard muffled laughter. And whatever they were doing, the phone had loud difficulty traveling from father to son. When Sam finally received it, the giggling continued … briefly. And then, a somber “hi.” With an implied, “what?” Followed by a silent (but I could hear it in my mind) sigh.

Sam is nearly 17. Perhaps that explains the lack of laughter overall. And I’m his mother, which probably explains it even more.

I asked what was so funny. “Nuthin.” Clearly sullen. I wanted to laugh along with him. It just didn’t feel fair. I raised him. He owes me (ok, ok, I’m a Jewish mother, forgive me). And, while hearing his big-little kid giggle was music to my ears, still my throat tightened.

After I got off the phone, I realized how little I laugh now. I just haven’t felt well probably most of my nearly 53 years for one or another reason, depending on the decade. But, still, my attitude was always that laughter was the only way to get through the dark times, to get through life at all with any measure of sanity.

In fact, I raised Sam with that philosophy since he was about, oh, two years old. Integrity and humor were two of the biggest watchwords in my home. As for humor, Groucho, Abbott and Costello, and Borscht Belt comedians. Too early with Sam, maybe, we moved on to political satirists and those who find humor in the mundane.

My combined symptoms and conditions that lead to sexual pain, which have led to this site and the book I am writing with Dr. E., are so serious. And I didn’t realize how they have robbed me of more than sexual satisfaction. They are robbing me of what I consider my life force … that ability to laugh, to find humor in the dark corners.

I have fibromyalgia, irritable bowel, interstitial cystitis, vulvodynia, vestibulitis, probably a larger list if I think hard enough. Oh yes, and migraines. I’ve learned more and more about how all of these conditions contribute to one big mess called chronic pelvic pain, which in turn contributes to and exacerbates sexual pain. Which is not funny at all.

And this has translated into a very unfunny, complaining, critical attitude that certainly doesn’t invite my son to feel gleeful around me (nor my husband, I suppose). It seems all my interactions with the people I love, not just my husband, seem to be colored by my symptoms.

So I was trying to remember the last time I laughed so hard that, if you’ll excuse the expression, I nearly “pee’d my pants,” There have been a few in the past year, but I believe, not enough. Study after study show the healing power of laughter. In fact, there is actually a foundation called, “Laughter Heals” that is all about this very subject.

My husband is a very funny man, in a wry, dry sort of witty way. We’ve had some rocky times over the past seven years since we met. Lots. And my sexual problems and indescribable pain at times certainly haven’t helped. But I cannot tell you how much his humor as we walk along the path together have helped our marriage.

After 9/11, I was a basket case for about six months, as were many of us, walking around feeling hollow and scared. I live in Florida, a far cry from the center of the horror, but emotionally decimated nonetheless. One day, much later, a comic shared his own pain with humor … and I laughed out loud with relief. And I remembered thinking, “Thank God for the comedians. Where would we be without them in the world of today?”

Tonight, I bought tickets for Sam and I to see a comedian we love. For a few hours, my pain will take a back seat. I’ll spend two hours hearing Sam’s laughter. And while I’m sure I’ll have tears streaming down my face, I know it will be with joy.

**************

What are your thoughts?

Note: I’ve posted this both in the Editor’s Corner and Random Thoughts.

My Interstitial Cystitis has now interfered with my relationship with my son. It’s funny, when I started on this path to writing our book, I thought the only relationships affected by pelvic pain were sexual. Then I interviewed women who described issues with their children. Horrible, I thought. So sad. But I couldn’t relate. Now, I feel the pain of that.

One of my symptoms is a chronic need to, well, pee. I’d like to be more politically correct, but I’m just not going to write urinate two hundred times in this post. And now that I drink a lot more water, which, by the way, has made an improvement in my condition, I need to pee just as much, but thankfully, it rarely burns and stings like it used to. (I’ve written about drinking water in my post, Water - The Healing Elixer.)

My son, who is nearly 17, is in the school’s marching band. Sam and I have been going through a rough patch, which is very painful. He’s moved up the street with his dad. As the parent who has done most of the raising, I am pretty devastated by the situation. My son and I have always been so close. It’s not only humiliating that he’s not here all the time (”what kind of mother must she be for her son to move to his father’s house?”), but hits at the core of my being because he’s my baby (hmmmm, you don’t suppose that might be part of the problem?). “For goodness sakes,” says my husband, “he’s not dead, not a runaway, just up the street with his father. It’s normal for a teen to want to get close to his dad.”

So, in an effort to be close to Sam, instead of driving, I decided to go with the band last weekend to their competition in Inverness, FL, about a four hour drive on the bus. The bus left at 6 a.m. and we were scheduled to get back about 3:30 a.m. the next day. His dad was also going on the bus. He and I are sometimes good friends (it’s complicated), but of late, I am completely jealous of the fact that he has my son and has immersed himself in the band, where all the kids and the instructors find him cool, making him oh, so popular. I needed to do something to compete with his “Band-ing” with Sam. Thus, I had the additional thrill of spending the next 24 hours interacting with my ex-husband.

Sam had informed me numerous times that going to the bathroom on the bus was “not allowed.” But his dad said that was not true. And certainly, I thought it wasn’t possible that no one went on the bus. Still, when I showed up at 6, I had a kernal of anxiety balling up in my stomach. I needed to confirm the bathroom edict. So I asked two of the parents who are “regulars.” And indeed, my worst fear was realized. “Oh no,” they both blurted out in unison, looking horrified. The fatherly one went on, “you can’t go to the bathroom. Once that toilet is flushed, even if it’s ‘#1,’ it’s too awful. The stench. Oh no, you just can’t.”

Now, I was stuck. My anxiety grew from a kernel to a watermelon. I know this isn’t good, but I forced myself to pee three times before boarding, and was on the verge of a panic attack the whole trip up. They did stop twice, once for lunch (over an hour, thank goodness). But with IC, you just never know when the urge will strike again.

I was afraid to drink water.

At the competition, during the waiting times, the bathroom was five minutes away. Three stalls, 10 bands, hundreds of girls and female chaparones.

I think the very worst part was when we boarded the bus to go home. One of the mothers in charge announced that the driver would not be stopping on the trip back. I freaked out. It was embarrassing. They looked at me like I was from Mars. I just couldn’t bring myself to explain that I had IC, so I simply said … menopause. Luckily, they changed their minds and we stopped halfway.

But the trip wasn’t a complete disaster because my son was actually glad that I was there. He didn’t say it, but his demeanor showed it. He joked with me right in front of his friends. Let me take pictures and, once in a while, I even detected a smile when he glanced my way.

So was it worth the anxiety? Absolutely. Anything that brings me closer to Sam is worth the effort. And the fact is, all that worrying was for naught because it worked out fine. Still, I cherish my freedom to choose. So the next road trip … I’ll be taking my car and stopping at every rest stop I can find.

I suddenly started getting pelvic pain in the year 2005.  It started with a simple urinary tract infection.  I took the antibiotics and the infection went away.  The pain never went away.  Over the past 2 years, I have had (I think) every test I could have to find the origin of this pain and correct it.  I have had:  Ultra Sounds, Urodynamic testing, Cyscotopy, Laparoscopy, Pelvic MRIs and of course urethra dilation.  All to no avail.  The Dr.s can’t find anything physically wrong with me that would be causing this pain. 

I am currently going to a Pain Management Clinic through Kaiser, and to be honest all they are doing is giving me narcotic drugs for my condition.  I am taking Darvocet and Vicodin.  I hate it!!!  With the pain and the pills I have become a different woman in the past 2 years.  I am depressed, I sleep a lot and I cannot hold a full-time job.  I have tried to get disability but I was denied 2x.  I am not getting any satisfaction from Kaiser and I don’t know what to do anymore.  Does anybody please have some advice for me?

Sometimes I am at my wits-end as to what to make of my life.

In May of 2007 I was finally diagnosed with IC, Vulvodynia, and pelvic floor dysfunction. I suffered with endometriosis for many years and that was diagnosed in August 2006. After being diagnosed with IC I gave the drugs prescribed by Dr. Echenburg 2 months. After frustrating bad days I went a different way.

I first detoxified my body with the help of a colon hydrotherapist (colonics). This brought out all of the toxins and after going for 2 months straight, I am down to every other week. I also founs out thw Lupron Depot depleted the electrolytes in your body and the calcium depletes the magnesium. I started building my immune system back up and the pain and frequency went away!

Once a month I go for a massage and acupuncture. I have so much energy now, and I hike a good 5-6 miles a day in the parks and woods. I also started seeing a holistic nurse practitioner and sje ran loads of bloodwork including the food allergy panels. I cut out gluten, wheat, and processed foods. I can have some wheat and I make sure it is organic. Many products I use are organic and my meat comes from a local meat market. Changing my ways helped me to go from 140 pounds to 126 pounds. I was a size 0 and would like to fit into my old jeans before Xmas.

This past year with my health has prompted me to go back to school for a career in the holistic field and help others like me. I need the flexibility as a 9-5 job is in the past and part time is the future. Thank goodness for Dr. Echenburg and his staff. They are wonderful and care. I liked the fact that they are open to holistic and feel that both can work together.