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

We now have nearly 650 women and over 80 men who have taken our online survey about painful sex and relationships. I wanted to share a sampling of the stories women and partners have shared in the comments section of the survey. (Only two of the partners have been women.)

I also want to mention that it’s not just sexual/intimate relationships that suffer. Many of the women with whom I’ve spoken have talked about their mothers, fathers, brothers/sisters and children having to know what is going on.

WOMEN:

1. Because I’ve never experienced pain-free sex, it is sometimes difficult for me to recognize at what point we should stop. I learned as a child to endure pain and not complain. That makes sex more difficult and confused for me. I don’t really have a model of what sex is “supposed” to feel like. It took me about 10 years of painful intercourse before I said anything. My spouse tries his best not to hurt me, but it’s something that hasn’t been easy for either of us.
2. He is a very supported husband. He does not want me to hurt. It hurts me tonot have a relationship sex with him. i want it and can’t do it. it makes me mad. He is better than I am with the whole thing. i told him to get somedbody else. he said NO!!! He loves me no mater what. To death do us part. Sickness and health. See i have had brian surgery in 1999. Seziure free!!! Then this !!!
3. Husband will not substitute other activities for intercourse. He won’t stop unless he loses erection. He’s glad I can “do it” again (thanks to horemone creams) but wants me to enjoy it (which I can’t because it still hurts some).
4. I have been married for 26 years. I am lucky that my husband hardly ever asks for sex any longer. I do however, always feel angry and guilty when he does ask, because I think he should be able to see how much pain I am in, and understand.
5. I only tell my fiance about the pain during intercourse after intercourse. I often position myself during intercourse so he cannot see my face when I wince or cry. He’s always very supportive of me, and would stop intercourse if I asked him to, but I guess I don’t think it’s fair for him to have to suffer, too.

PARTNERS

1. After she was diagnosed, I would stop. But she said she wanted me to finish, so she didn’t have to hear me ask (asking includes trying to talk about her condition or trying to create a romantic mood).
2. Because of her condition and the related pain. I have pulled away form her and am afraid to attempt to get physical as I know that it will cause her pain. This is very hard on me and I know that it must be as bad or worse for her. But God brought us together and will keep us together. I love her too much to let this to control us Sex is very important to me and our relationship but is not the most important. If it comes down to it I will be blessed to be the one who gets to take care of her.
3. My wife has been worn down by the many doctors that have failed her. She has basically given up trying to correct this situation. Our once heavy “chemical attraction” has be completley ruined. I am still interested … but she’s not!!! I have taken on every suggestion given to us … to no avail. I’m lost as to what to do. We may break up shortly after 15 years of sexual problems with painful intercourse.
4. JUST WISH THERE WAS A CURE.

The Times Online website has a sex advice column by Dr. Thomas Stuttaford and Suzi Godson. While not specifically about chronic sexual pain, this article on first-time sex and the fear of pain is an interesting, entertaining and thoughtful discussion about the most comfortable positions for women starting out as well as other methods to minimize pain and increase pleasure.

From the article, “The discomfort of early penetrative sex, if there is any, is usually related to tension in the pelvic or thigh muscles and/or anxiety that has prevented the usual vaginal lubrication.” For me, as a chronic sufferer, I do know that tensing up (which is instinctive at this point because of the pain) makes it all worse. (I’ll be writing more about this in our next newsletter.)

As always, we’d love to hear your comments on this article.

This NVA tutorial is targeted toward healthcare practitioners, but it’s a fascinating and helpful learning tool for those of us who suffer with vaginal and vulvar pain. The tutorial describes some other causes of the pain and ways to manage symptoms.

What’s so wonderful is that this excellent organization developed the tutorial because, “healthcare providers need educational programs to assist them in acquiring the knowledge and skills to evaluate and manage patients with vulvodynia.”

Also from the NVA site, “According to an NIH-funded study conducted at Harvard Medical School, approximately 16% of American women between 18 and 64 years of age report suffering from chronic vulvar pain at some point in their lives, with more than 90% reporting many years of pain. It is estimated that six million women may currently be suffering from the condition. According to this study, the incidence of symptom onset is highest between the ages of 18 and 25, and lowest after age 35. (Harlow BL, Stewart EG, JAMWA, 2003 and Jantos M, Burns NR, J Reprod Med, 2007). Once considered to be a condition that affects primarily Caucasian women, recent studies have shown that African American and Hispanic women are just as likely to develop vulvodynia.”

Please give us feedback after you’ve looked through the tutorial.

Recently, Dr. E was the keynote speaker at a pain conference in Panama City. He was extremely well received. Here are comments from a few of the participants:

Finally I had the time to write. First of all, my personal thanks for your excellent lectures. I enjoyed each one very much and be aasured that your words of wisdom won’t be forgotten.

Dr. Osvaldo Reyes

Ernesto Alvarez Durnov MD

Roxana

After all these years, researchers are finally admitting that there are numerous symptoms that intertwine with Interstitial Cystitis, and now, a five year study is being funding by several of the National Institutes of Health (NIH) and the National Institutes of Diabetes and Digestive and Kidney Diseases (NIDDK). The full-scale, multi-year study will begin in 2008 and will receive a total of $7.5 million.

The name of the program is the Multidisciplinary Approach to the Study of Chronic Pelvic Pain (MAPP) Research Network. Some of the conditions covered are chronic pelvic pain syndromes associated with the bladder and prostate gland, fibromyalgia, irritable bowel syndrome and chronic fatigue syndrome.

It is possible (and I sure hope so) that vulvodynia and migraine may be included. To read more about this study, click here to read the ICA newsletter.

As a footnote, Dr. Echenberg plans to apply to participate in this study. These are the very issues suffered by his patients. Dr. E has also worked with male patients who experience pelvic pain.

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 just want to thank all of you who have had the willingness to be the first to get our site started. I know how much courage it takes to reveal such personal stories. Please encourage anyone who has suffered to share their thoughts. In addition, if you know any experts, please ask them to write me so we can have them post in our Expert’s Corner. And always feel free to call (888) 241-1461 or use our contact form to get in touch with me.

Secret Suffering Newsletter
Issue #1 - September 23, 2007
Publisher: Susan Bilheimer
susan@secretsuffering.com
http://www.secretsuffering.com
Copyright 2007 Very Peri, Inc.

Circulation: 175

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“Helping women cope with sexual pain and it’s impact on
their relationships”
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Please forward this ezine to anyone you know who would
benefit from the information contained in this newsletter.

================================
In This Issue:
================================

1. We’re up and running

2. Update on our book

3. On our blog

4. News for you

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1. We’re up and running
==================================

I’m happy (and relieved) that our website/blog is
finally up and running. I’ve got a long way to
go to get all the information we’ve accumulated
into the site, but it’s a start. I’ve been
in touch with lots of other sites who have great
information on all the conditions that cause
sexual pain and we’re getting a very positive response.

If you haven’t been on the site yet, please be
sure to check out the Resources page.
We have included many excellent books and website that
contain a great deal of helpful information.

We’d love for you to send us any information or news that
you think would be interesting to other women (or their
partners).

Plus, we encourage you to share your story in
our Healing room. We just ask that your story focus on
your condition as it affects all of your relationships.

If you want to comment on any other issue about your condition, feel
free to post in the Random
Thoughts page.

==================================
2. Update on our book
==================================

You may know that in conjunction with the site,
Dr. Echenberg (Dr. E) and I are writing a book, also called
“Secret Suffering,” about women’s sexual pain and
relationships. Now that the site is up, I’ve got
to get moving on the book. We actually have a publisher
interested, which is very exciting.

==================================
3. On our blog
==================================

Dr. E responded to a woman who has been through much
of what many of us have experienced.

You can read her post in Random Thoughts.

Dr. E responded:

Your suffering with pelvic pain is exactly why we started this
project. Our chronic pelvic pain center has drawn many hundreds of
women like yourself with relentless pain in the pelvic region often
associated with bladder or bowel issues as major triggers. Your
history and symptoms seem to indicate a strong possibility of your
bladder as a primary trigger for your pain.

I cannot make a specific diagnosis, but you need to use as many
resources as you can to look into what is so commonly mis-diagnosed
or not diagnosed at all - “Painful Bladder Syndrome” or otherwise
known as Interstitial Cystitis (IC).

About 60% of otherwise undiagnosed chronic pelvic pain is triggered
by this condition. IC effects possibly up to 20% of all reproductive
age women in the USA. A combination of symptoms of urinary urgency,
frequency, and pain in the pelvic region can be made fairly readily
especially if all other anatomic pathologies have been ruled out as
in your case.

On average IC is not diagnosed for up to 5 or 6 years after symptoms
get significant and women usually see multiple specialists and get
multiple invasive procedures before diagnosis…
Read more here.

==================================
4. News for you
==================================

A medical website in the UK, Menopause Matters, conducted a study of
over 1,000 women and found that 53 per cent of menopausal women
experience painful sex.

It’s a sad fact, but one that may give you comfort that you aren’t
alone, even if you are not in menopause.

By the way, Dr. Echenberg is on his way to Panama today to
give the keynote address at a pain conference. To check out
other events, go to our Events page.

***********

There’s a new set of procedures called “vaginal rejuvenation” that
are billed as improving sexual response and enhancing vaginal
appearance. OK, I, for one, cannot fathom why I’d need to
enhance the appearance of my vagina, but maybe it’s because
I don’t look at my own too often.

On a more serious note, however, the American College of
Obstetricans and Gynecologists are urging women to be wary of
these procedures. They can lead to a host of problems, including
increased pain during sex. To read more, here is an article from The
Ledger.

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

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Reprinted from “The Secret Suffering Newsletter,” a free ezine to
help women cope with sexual pain. Subscribe at
http://www.secretsuffering.com/ and download the free ebook “How to
Find Relief from Vaginal/Vulvar Pain.”
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=======================================================
Copyright 2007 Very Peri, Inc.

Susan Bilheimer
Very Peri, Inc.
Loggers Run
Boca Raton, FL 33428
(954) 778-9160
(888) 241-1461
susan@secretsuffering.com

I’ve been thinking about water. No, not necessarily drinking it, but thinking seriously about it. My best friend insists most of the world’s ills come from dehydration and that some of my myriad symptoms would subside if I would just listen to her, like my brain fog (you know, that frantic thought, “Where did I leave my glasses” and an hour later, “Oh, they’re on my head”). I, personally, get nauseous from drinking water. But I can’t drink soda, coffee, most tea, and even club soda causes me to have an IC flare-up, which I find completely puzzling.

My best friend, by the way, is not a doctor, nurse, or healthcare practitioner. Just practical. She solves most of my problems by starting off with, “Hmmm, well my grandma and grandpa would say..” And usually ends with a solution so simple that I just roll my eyes. And then I try it, whatever it happens to be, and find that she was right.

So, she didn’t care that water made me nauseous and insisted that I just needed to drink it, but slow … a sip every two minutes or so. According to the Mayo Clinic, in an article about the subject, she’s totally right.

The average urine output for adults is 1.5 liters a day. You lose close to an additional liter of water a day through breathing, sweating and bowel movements. Food usually accounts for 20 percent of your total fluid intake, so if you consume 2 liters of water or other beverages a day (a little more than 8 cups) along with your normal diet, you will typically replace the lost fluids.

I bought one of those jug thingies that everyone carries around. Actually, I’ve bought three (four?) because it took until last night to find one that didn’t leak all over.

I’ve been amazed to discover how little water I drink. But I’m really trying to drink the whole 64 oz. Turns out that you can’t really judge whether you’re drinking enough water by thirst. Just today, I found a great article from the Interstitial Cystitis Network that mentioned this fact. Though it’s from 2001, it still rings true. According to the author, Constance Burtnett:

Doctors and nutritionists are starting to suspect that dehydration plays a major role in many physical complaints. Many people don’t realize they’re not drinking enough water because they don’t feel thirsty. But lack of thirst is actually a signal that you’re dehydrated. Dry mouth is an SOS signal that your body is in the late stages of severe dehydration. When the body is properly hydrated, your normal thirst mechanism kicks in and you start to feel thirsty again when you need more water.

And again, from the Mayo Clinic’s article:

It’s generally not a good idea to use thirst alone as a guide for when to drink. By the time one becomes thirsty, it is possible to already be slightly dehydrated. Further, be aware that as you get older your body is less able to sense dehydration and send your brain signals of thirst.
My gynecologist told me as well that drinking water will really help my IC by diluting the concentrated urine. He insists that it’s a vital component in my treatment.

I was afraid that I’d triple the amount of time I spent in the bathroom, but since I go so many times throughout the day anyway, what’s the difference. But when I drink my water, at least, well, I feel like I accomplished something when I feel the urge … and it doesn’t burn nearly as much.

It even seems to help my migraines, so I’m beginning to think they may, in part, come on because I’m not hydrated. Even my fibromyalgia achiness seems to subside a bit on the days when I get the whole jug’s worth down. The jury’s not in on my brain fog though. I still forget what I’m saying as I say it.

Oh, and be careful not to “over-drink” (too much and/or too fast) as you can actually die from “water intoxication.” Man, nothing, absolutely nothing, is without its challenges. So, stick with guidelines from respected sources, such as the Mayo Clinic. You should also talk to your doctor about your particular needs. But even drinking an extra glass a day can make a big difference.

And coffee or caffeinated tea certainly isn’t one of the liquids to drink in place of water. Most patients with IC flare up when they get caffeine. Water, plain or maybe with lemon or lime (if you can handle it).

I’m not saying that water will cure all that ails you, but it certainly has been helpful to me.

So, find the best quality water you can, get one of those plastic bottles so you can see how much you drink in a day, start slow and sip, sip, sip!

Recently, we came across Lisa Martin’s blog post “I Heart Dr. Brookoff.” Dr. Brookoff is an Oncologist and a dedicated and passionate advocate for patients suffering with Interstitial Cystitis. You can read a PDF article from the IC-Network about a talk Dr. Brookoff gave in 1997. His dead-on analysis and understanding of pelvic pain will hopefully finally be heard by the medical community today. Lisa also provided this link to a PDF file of an interview with Dr. Brookoff in 2006.