Well, I have to say I am not thrilled with the website, selling viagra and such. But AccessRx did a fabulous interview with Dr. E, which really explains so much that those of us with pelvic & sexual pain need to understand.

I found what may be a truly cool item for those of us with IC. It’s called GoGirl. It’s, well, a portable potty. So if you are going somewhere and there just isn’t a place to stop, well, you don’t have to. I guess it’s the female version of peeing in a bottle. It’s really quite interesting. It’s a flexible silicone funner in pink or tan. You can pee standing up (like behind a tree?). But the thing is, if I’m somewhere that I can do that, why would I need this? Hmmmm. It’s advertised as a hygiene product if you are somewhere that there are not clean toilets. But definitely worth taking a look at, I think. www.Go-Girl.com.

I really liked this article. It brings a sensitive subject out in the open in a refreshing way. It was geared toward menopausal women and explained why more stimulation is needed as we get older. But for women of all ages who experience painful sex, a vibrator can be a Godsend and it can be used as a very integral part of intimacy when you have a partner! Yes, it is not just a solitary replacement, but, if you let your partner use it on you, it can really enhance the experience together. Please check out this article: Vibrant Nation article “Her First Vibrator”

I’m seeing  another doctor on Thursday, to get another opinion about the next step (if there is a next step). I contacted my local obgyn who has always been helpful in giving me my medical records but this time, they want $30 for surgical reports & pathologies.   I didn’t mean anything by it, I just want to be prepared.

In the past, when meetings new doctors,   It just seems, when I’m asked a question, I know where in my records to look, some doctors see the big file & act like it’s a hassle to try to find the right report.  (It might just be my impression).   After 4 years I want to be extremely accurate, to move forward.

They asked me why I want them,  I thought they’d know my routine by now.  Oh well!   They don’t have a problem faxing them to the new physician, but just me having them.   I just think there is something to be said about being my own advocate.   I know Dr. M  did a surgery & said I was fine when he closed me, then at my painful follow up told me he seen adhesions from my ovary to the bowel & went back in to remove that.   It’s not mentioned in the surgical report about adhesions it is mentioned in the follow up doctors notes.

I just want to know about my health & condition.  I guess doctors need to be worried about lawsuits. but I just care about getting rid of pain.

This doctor who I felt extremely comfortable with, I’m now worried about their change in policy about giving me my records.

Maybe at the new doctors office, I’ll put my name & address down to get records, to avoid this hassel.

Am I wrong here?

thanks

Diane

Di’s post about doing Kegel exercises as a routine for many years is very interesting.  The pelvic floor or “core” muscles as the Yoga folks call them, are virtually always involved with any type of chronic pelvic and/or sexual pain.  Any pain anywhere in the body will routinely cause spasm and “splinting” of the muscles around the area of pain.  This is an automatic response of the body to protect itself from further damage or increased pain.  After any injury of an extremity, for instance, our body wants to immobilize the area.

With chronic pelvic pain, there is the same type of spasming or splinting of many of the deep pelvic muscles as well.  One of the big problems is, however, is that so many healthcare professionals, including myself for many years, forget that the pelvis is loaded with these muscles and ligaments and nerves.  One would have to be in a total body cast to immobilize the pelvis completely, so pelvic pain tends to perpetuate itself in part because all of this increased tone and squeezing of the “core”.

Di’s statement that she had 4 laparoscopies sounds like she has been suffering from pain issues for a very long time.  It would be very surprising if she did not have chronic significant pelvic floor “dysfunction” (PFD), also called pelvic floor myalgia.   Pelvic clenching that she has been consciously practicing for years has more than likely contributed to increased pain as well.  Her pelvic pain has possibly also resulted in a dysfunctional bladder sensitivity.  Her bladder no longer sends the appropriate signals to her brain when she would normally need to void.

All of these issues end up often in various vicious  circles, causing further spasm, pain, and anxiety.  Specialized pelvic floor physical therapy, as well as treatment of her bladder, nerve generated pain, and any other triggers in the pelvic region could be very helpful.

More about PFD soon.  I should  be able to post video clip answers to general questions in the near future as well.

Dr. Echenberg

I belong to an e-group called happy pelvis & some are talking about kegels.   I had gone to PT & she had me do kegels. the probe registered that I’m tight all the time & she suggested doing kegels so I’d learn to relax my muscles.

We’re discussing kegels some thing it creates pelvic floor issues & some don’t.   Since this discussion came up, I’m now curious if the pelvic pain I have is because growing up I read an article about stopping the flow of urine to stengthen muscles so that in my older years I won’t have trouble with incontinence.

Out of habit  I just do it.   If my current pelvic pain has developed from me doing this.    At one point in the last few years, I had to see a urologist because I’ve lost the ability to feel the need to urinate & he taught me to cath myself.  I’m to cath on an as needed basis.  Haven’t needed to cath lately, except, It got me out of the hospital early because after my 4 laparoscopies I needed to cath till I recovered more fully.

anyone have any thougths on this???

Thanks

Di

http://www.reliefinsite.com

I use this site daily.  It allows me to post where the pain is, the intesity of the pain & then will allow reports.  I should have used it more at the beginning, to see if pain was cyclic or not.   each category has a place for notes, so you can comment on the meds you took & how they helped, or if it was a physical activity that increased pain.

Some of my doctors had asked me questions about if the pain was different from one week to the next.  This just allows me to go back  & review.

I just thought I’d post it & hope it helps someone.

thanks

Diane

In brief response to the 2 most recent posts regarding pain following orgasm, I would like to comment that both of you are on the right track with your thinking.  Chronic pelvic and sexual pain in general is commonly related to other chronic pain processing disorders such as fibromyalgia, migraine, and other nervous system generated pain syndromes.  “Chronic” pain of all sorts is a different physiology than “acute” pain.  Once pain continues long beyond any acute tissue injury it can become a self generating syndrome in various parts of the body.

So yes, we see many sufferers of pelvic and sexual pain with associated other generalized pain issues.  “Oversensitive nerve endings” are part of the issue but also what is known as “central sensitization” in which the spinal cord “volume” is turned up and less and less stimulus causes more and more pain sent to the brain.  Unfortunately, most health care providers dealing with pelvic and sexual issues have not been trained in these relatively recent findings in the pain research world.

The other issue you are both flirting with is the incredible importance of the entire pelvic floor or “core” muscles regarding all aspects of pelvic pain.  “Pelvic floor dysfunction” or pelvic myalgia plays a major role in one of the many vicious cycles of pelvic pain.  I remind my patients that I literally won the anatomy prize in medical school and then spent the next 35 years practicing Ob/Gyn forgetting that there are muscles, nerves and ligaments in the pelvis.

So consider what is involved in orgasmic response in both genders.  First there is a need for pleasurable stimulation of whatever source which obviously is mediated through the peripheral nerves in and around the lower genital tract.  Vascular engorgement occurs causing erection and lubrication and finally with orgasm itself there is a series of muscular contractions.  If one has chronic pelvic pain issues, invariably the pelvic core muscles have already been bracing and spasming for significant lengths of time.  When muscles are clenched like that they hurt, especially if stimulated to contract over and over.   Many of our patients say they are able to reach orgasm, but they then “pay for it” for minutes, hours, and even occasionally for a day or two.

Pelvic floor spasm or dysfunction is best treated by a skilled specialized pelvic floor physical therapist, along with treating other “triggers” of the pain and toning down the “central sensitization” as well.   Physical therapists can be found by going to the website www.apta.org and finding the women’s health part of the site.  (American Physical Therapy Assoc).

In summary, orgasmic pain is mediated through both nerves and muscles,  and is sometimes one of the most distressing aspects of chronic pelvic pain.  In the near future, I hope to add short essays on various aspects of these issues and possibly even short videos will be posted.  I am currently seeking another physician to help me so I can take more time with education.   My largest goal is to raise the consciousness of all of these issues and also to see more education in the medical residency programs about chronic pain itself.

Sincerely,    Dr. Echenberg

Hi I was very pleased to find this blog. I have a condition called Fibromyalgia, which I have had for 14 years.  In the past 3 years whenever I have an orgasm I get a shooting pain from my pelvic all the way to my tailbone. This pain has nothing to do with penetration, as orgasm reached through other forms of stimulation cause the same extreme pain.  I have had many test, ultrasounds and internal examinations to assess if I have any other condition that might be causing this extreme pain. My Gynecologist said it is due to my Fibromyalgia and over sensitive nerve endings. He said nothing can be done and my only hope for this pain going is once I reach menopause. I am 43 and am in peri – menopause so I can be given hormone replacement.  I have researched everything I can and am yet to find any site to assist. Also, I could not find any research or any other Fibromyalgia suffer who has this problem. So I am seeking any help, ideas or thoughts from you who are on this blog.

My pain was very bad tonight so I wanted to see if the fullness & pressure & pain diminish if I had an orgasm.  (I can’t believe I’m typing this).   All I discovered is the pain greatly increases, pressure increases, abdominal fullness increases. 

Would this be a sign that my real problem is pelvic floor dysfunction??   or doesn’t that mean anything??

thanks