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7/22/2008

Endometriosis Patient Survives Yet Another Annual Exam Without Perishing On The Table :) :)

This morning's post at 11:01 AM read as follows ---

Hope to post more later. On way to GYN...

This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.


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EVENING UPDATE:

This morning's post had this depressing title --- "Endo blog: VERY ILL!! Hope to post later today. Check GREAT new widgets in sidebar, please!! :) :)"

What a difference a few hours can make! I am still in incredible pain but I'm feeling much better emotionally than I was earlier today! (See my comment to Alicia on this post for some insights as to factors that turned a horrible day into a great one in many ways). Alicia could cheer ANYONE up!

This morning was one of those days with a very rough start. First, I woke up feeling like I had been hit by a truck. Then, I ran around trying to get ready for my gynecologist's appointment but was spinning my wheels because I was just too stressed out to get very far. So I stole a few minutes to go online and post the sadly titled: "Endo blog: VERY ILL!! Hope to post later today. Check GREAT new widgets in sidebar, please!! :) :)" I figured the widgets might have to keep you busy since I didn't know when I'd be able to post again. (Besides, they are really good widgets. Check them out)!

Within a short span of time after I posted this pathetic sounding post (except the positive part about the widgets), supportive comments flooded in from Mckay k and from yaya (Alicia). This positive enerygy was the boost I needed to simply get out of the house for my dreaded pelvic exam and pap smear!!

At this juncture I should explain that I have two doctors who treat my endometriosis symptoms: my gynecologist who I see annually and who does my regular pap smears... and my pelvic pain specialist who does pelvic exams too but does not do my pap smears.

Anyway, today was my visit with my gynecolgist. I just love this man! He is so compassionate and kind!!! He is passionate about helping women with a whole host of issues. He listens and cares!!! I was looking forward to seeing him as a person!!!

The part I was dreading this morning when I had such trouble functioning well enough to get out of the house & was in such physical pain... was the always-scary-to-me pap smear that always hurts like "h-e-double hockey sticks"... if you know what I mean! NO doctor has ever performed a pap smear on me without me experiencing indescribable, intense, excruciating pain.

Years ago when I lived in two other cities and I had pap smears by other doctors. No one has ever done it without me wincing, jumping off the table, accidentally holding my breath (which is not good because holding your breath just tenses up muscles & things), and simply not knowing how I'll get through it!

PLEASE NOTE:

If you aren't aware of it already... speculums come in different sizes. If you, like me, have very severe pain with pap smears, I highly (!) recommend asking your doctor if he or she has a smaller-sized speculum. It matters!

So, YES, all of this pain I had during today's pap smear was with a SMALL speculum. (Can you imagine how I would manage the regular sized one)? Anyway, I knew how much it would hurt. We're talking pain beyond that with non-pap smear pelvic exams... which also are excruciating and also cause me to reflexively jump off of the exam table.

The jumping, of course, only worsens the pain but I cannot help it. It is a reflex. If anyone out there reading this has had this happen (and I know some of you "get it" because I've talked w/women in my local group who are also like this), you are not alone! I looked like a Mexican jumping bean jumping up and down off of that exam table. My poor doctor... I wouldn't want to be my doctor! I've never had a pelvic exam that was not this painful. (I've certainly had worse, with docs in my former city).

I should stop here to mention that part of why my pelvic exams with either my GYN or my pelvic pain specialist are so VERY painful is that I have numerous illnesses that affect pelvic pain/vulvar pain/abdominal pain:

+++ vulvodynia or vulvar vestibulitis I'll have to do another completely seperate post someday on the difference between the two conditions --- but one pelvic pain specialist thinks I have vestibulitis and the other one (a 3rd opinion doc) thinks I have vulvodynia... In the meantime, consult the National Vulvodynia Association for info on these --- http://www.nva.org/. Also, please note that vulvodynia is being rsearched by an organization called CureTogether. See my July 15th post on their new medical research organization for more info on them. Also refer to their website: www.curetogether.com.

+++ interstitial cystitis

+++ pelvic congestion syndrome

+++ irritable bowel syndrome

+++ ... and, of course, endo!

Since any one of the above can cause painful gynecological exams, it's no wonder that I fly off the table when the doctor does any part of the exam.

Anyway, it ALWAYS is the case for me when I have to see either of these docs for an exam (but especially if it's a pap smear day)...

I of course have my period. There is no scheduling around this. First of all my periods aren't regular enough to schedule for them. Second, even if I'm nowhere near due for my period I almost always get it on or right before my pap smear appt. It never fails! There is no sense trying to reschedule when it happens a couple of days before a pap because the rescheduled appointment would fall into the same "Murphy's Law" category and I'd get my period on whatever day I rescheduled it for.

Anyway, I finally made it out of the house (quite an accomplishment with the fibromyalgia pain that greeted me first thing this morning)! Then I drove 45 minutes to where my doc is. Then the waiting game. At I sat in the waiting room, I distracted myself by filling out the HMO update/patient info form and scribbling additional notes for the doctor on my typed-up-at-home-in-advance medical history/update.

I learned long ago with a great doctor like this who is so thorough that his form for each annual exam is detailed (about 6 pages long!) that I need to write SEE ATTACHED on the whole doctor form and bring my updated version of events with me. (I need to actually do this for all doc appointments since my meds change frequently and I keep getting new diagnoses to pass along to all my other docs so they are all on the same page).

Sooooo, I turned my things in to the receptionist: the HMO/patient form, the doc form marked SEE ATTACHED, my newest HMO card, and the typed up stuff I brought with me.

Then I read things to get distracted until they called my name. The distraction is key for me when the anticipation of a painful exam creates overwhelming anxiety and fear in me.

They called my name and took me back. I did all the "nurse stuff". (Yay... my blood pressure medication is working as my BP was MUCH lower today than it has been)!

Then the doc comes in. Now this has to be one of the nicest people I have ever had the pleasure to meet. His bedside manner is impeccable. He REALLY cares about each and every patient. He knows me very well after many years on this journey together and tries extremely hard to be gentle with the exams. He listens! He is knowledgeable about alternative medicine. He is just awesome any way you slice it. All of this does not alleviate my fear of the imminent pelvic exam... especially the pap smear part!

I fill him in on some major changes in my health (for the worse) since I last saw him. Then it was exam time. I swear to you I tried with every fiber of my being not to jump off the table. However it is an unstoppable reflex. How else to explain that I'm telling my body "stay still and it will hurt less!!" but yet I jump?!

So the exam hurt like "h-e-double hockeysticks" as always with any gynecological appt. That was a given.

Then (!!) the huge relief that it was done hit me!!! I was so happy that my annual exam (pap smear and all) was done for another year.

Oh, sure, I may see my pelvic specialist 3 times a year on top of the GYN appt I had today (give or take)! Yes, that will hurt like "hockeysticks" too! However, for me, it's that pap smear that is the hardest part, pain-wise. So once I was done with today's exam, a HUGE weight was lifted off of me!

Anyway, my annual exam (including the necessary but very painful pap smear) is history for 2008. Yay!

In addition to having that doc appointment behind me, I had the extreme pleasure of visting with my friend and fellow (local) endometriosis support group member: Alicia. Yes, I mean THE Alicia... You may also know her as "yaya" and she frequently posts comments on my blog. She has endometriosis and infertility. (Her personal blog is: http://www.yayastuff.blogspot.com/ and she occasionally posts about those topics, among others).

Anyway, seeing Alicia in person was just what I needed today. After waking up to fibro pain, after realizing that the severe Charlie horses in my left foot from yesterday were planning to stick around (!!!) and hadn't left overnight, after trouble simply getting OUT OF THE HOUSE, after a problem with my van when it was time to leave that necessitated another stop en route to the doctor, after driving 45 minutes to the city, & after enduring the exam... her smiling face cheered me right up and distracted me from my troubles. Alicia is one special lady! Today I got to meet her husband for the first time. Someday, I'm hoping to have an "open" endo meeting where spouses and significant others can attend. My group is overdue for that. In the meantime, I only get to hear about local endo support group members' loved ones in meetings, online, & by phone. So it was a treat to meet her husband after hearing so much about him from Alicia and reading Alicia's blog!

Anyway, Alicia helped me out today and basically alleviated some worries I had about the appointment. It's hard to have a pity party when Alicia's around because she is so bubbly and fun and wonderful! So seeing her while in the city was great. (By the way, I live in the sticks so all of my specialists are 45 minutes each way. That's a lot of gas money but I have to "hunt down" the docs who can handle a "complicated" patient like me). COMPLICATED. That is what my primary wrote on my chart the other day... that my case is "complicated". She meant no offense by this, of course. I AM complicated)!

Anyway, THANK YOU to Alicia (A/K/A "yaya") for brightening my day!! :) Alicia defines TRUE FRIEND!

Sooooooo, for anyone who read my depressing post headline this morning (see earlier in this post), I have updated my post's title (see above) to reflect my improved mood, relief at having exam over, and gratitude at having such a lifelong friend as Alicia who is only 45 minutes away (45 minutes which really isn't all that bad, all things considered, since I do live in the sticks).

I'm glad the appt is over!

P.S. My Tori Amos CD for 90 minutes round trip helped my mood too! Never underestimate the power of music!!

8 comments:

Mckay K said...

Jeanne, Praying that you will get better soon.

Jeanne said...

mckay k,

Same to you, honey! Rest your wrists w/the carpal tunnel! Talk to you soon! Gotta go to doc now. Pushing it on time!

Jeanne

Yaya said...

I'm so sorry you aren't feeling well today :(
You are way too nice of a person to feel "sicky".
Alicia

Jeanne said...

Alicia,

You are so sweet!

As you know by now when you are reading this, I ended up connecting with you in person today (after you had posted this here) and that was a BIG help to me!

Thank you so much for your help. You have no idea how much your support means to me! Today got off to a very bad, very painful, problem-filled start.

I may still be in incredible pain BUT my day improved immensely thanks to your generosity and thoughtfulness.

I don't know how to thank you enough for everything you did. You are amazing and I'm very fortunate indeed to call you my friend!!

You are way too nice of a person to go through the pain that you endure. I don't think anyone deserves the kind of pain endo can bring.

You just keep looking at the positive no matter what! Your outlook and whole attitude make you a role model to others on how to handle this difficult illness with grace and humor and compassion for others.

I admire you for all of your strengths. You are a strong woman and you handle adversity remarkably well.

You don't sugarcoat things or bury your feelings in an unhealthy way to be so amazingly and famously smiling & happy.

You just somehow find a way to process your feelings and channel your energy to truly be happy despite the illness.

You let your feelings show when you're upset but in a healthy way. Then you move on to the positive as quickly as possible.

You don't dwell on negative experiences of the past. You're always looking forward (in the best possible way)... You have hope. Hope is an awesome thing to have on your side.

By looking forward, I don't mean worrying excessively about what's to come in the future.

What I mean is you are good at "being in the moment" or "being present", as my acupuncturist might put it.

Being "in the present moment" is huge. Many people go though life without really being able to get the concept of being "present" but you handle it better than most.

I didn't get the idea of being "present" at all before I met my acupuncturist.

Since then I've been exposed to mindfulness meditation and others practices that facilitate being truly "in the present moment".

I'M STILL LEARNING to be sure (!) but I TRY to focus on the present.

Mornings like today are examples of where I could have handled it better! I got myself pretty worked up earlier today with everything on my plate and just how the day started off.

Sometimes I feel like the pain "takes me over". I don't like that feeling.

It's hard to feel so crummy ALL THE TIME and then have ALMOST UNBEARABLE pain kick in on top of it way too often!

Thank you again for your assistance today. Your thoughtfulness knows no bounds!! :)

Jeanne

Yaya said...

Jeanne,
It was awesome to see you yesterday! I'm glad the dreaded pap is over for you for this year! Yay!

Don't get me wrong...I have my bad days...but for the most part, I just try to remind myself that we only have one chance to live this life, so make the most of it!
Alicia

Jeanne said...

Alicia,

Yes, I was so happy to see you! I'm glad to have the pap done too!

Again, your positive attitude is awesome!

Jeanne

endochick said...

Hi Jeanne! This is endochick. Sure we can tweet together -or whatever they call it. lol That sounds so silly lol. I'm Endochick on Twitter, but you know that since you read the post. I'm an idiot. duh. :-)

I feel your pain, endo sister. I stinks. Know we are all on this trip together. And I wonder why it is we Endo Gals seems to suffer from multiple chronic illnesses? I read a study that was trying to claim that endo is an autoimmune disease - make since. If you have one autoimmune disease your chances for another increase and your chances for another after that increase even more, and so on and so one. Hmmmmm... food for though?
Take care.

Jeanne said...

Hi endochick!

Welcome!!

Yes, "tweet" sounds funny and I'm still learning twitter... I'm sure we'll figure out how to get connected on that. :) You're not an idiot! :) twitter is kind of goofy but I'm getting used to it...

Yes, we endo patients have an instant connection with other endo patients who "get it". To meet someone who UNDERSTANDS (in person, online, wherever) is HUGE!

Yes. It stinks alright! Like you said, though, we are all in the same boat. I try to look at it like if I didn't have endo I wouldn't have met some of the nicest, coolest, most compassionate women I've ever met.

I think the tough-sounding saying, "if it doesn't kill you, it makes you stronger" has some truth to it. We endo women are tough cookies! We have to be for sheer survival. So you are strong and you will get through the "jaws of life". (I had it yesterday and it has calmed down today). I'm just sore everywhere else! :)

I try to stay as positive as I can. I can be in agony and be really negative/bitter about it OR I can be in agony and try to find something to look forward to, some ray of hope, something positive to get through the rough times!

Now, as far as the multiple chronic illnesses, I have lots of feedback on that topic! You have brought up an EXCELLENT and IMPORTANT topic that affects MANY!!! My blog is covered with this topic!

First, I'll quote from The Endometriosis Association's main brochure: "Many women with endo also experience a range of immune disorders, inluding allergies, asthma, eczema, and certain autoimmune diseases. Infertility affects about 30-40% of women with endo and is a common result with progression iof the disease".

I've had endo for 26 years (from age 13). I have done LOTS of research, seen many docs speak on endo, researched on the Internet, and read medical journals.

I'm no doctor (!) but from what I understand endo is considered by most "endo experts" in the field to be the following:

++ an autoimmune/immunological illness (though the reasons are poorly understood)...

++ a reproductive disease

++ a hormonal (endocrine disease)

So, it's very complicated! If you read through my blog, you'll see all sorts of mentions of co-existing illnesses to endo.

For example: fibromyalgia and interstitial cystitis... irritable bowel syndrome... multiple chemical sensitivity syndrome... I have ALL of the above, by the way!

I haven't yet had time to devote full-blown posts to each of these but I insert 'plugs' for these ilnesses on my blog because I see SO MANY women in my local support group who have many of them! So I think it's important to talk about more than just endo on my blog simply because I know many readers here are coping with way more than just endo!

You are right that having one autoimmune illness increases your chances of having another. For example, I now have Reynaud's disease to add to my list. (Trust me, my list of diagnoses is long and downright scary but I try to laugh it off the best I can)!

I think it's like a domino efect or cascade effect from everything I've heard/read/experienced. One illness spawns another or something...

I have so many illnesses that I'm convinced are related to each other! For example, I have (again, like many of my endo group members) vulvodynia/vestibulitis. Do I think it's a coincidence that several members of my endo group happen to have this too? NO!

That is why I was SOOOOOO psyched about CureTogether's launch (see my July 15TH post). They are focusing medical research on 3 conditions for starters: endometriosis, migraines, and vulvodynia.

Please see my 7/15 post for the EXCITING news about them: www.curetogeher.com. They are AWESOME!!!

Anyway, my personal prediction is that someday with all of the genome studies various companies are doing... they will find the genes for endo, fibro, and IC all together somehow! I'm no scientist (!!!) but that is my prediction.

There are just too many people with these overlapping diagnoses. It's NOT a concidence!

I go for regular acupuncture (AWESOME!!!!!!!!!) and my acupuncturist said that in Traditional Chinese Medicine endometriosis is actually 6 different illnesses!

That resonated with me because some local endo support group members have no pain at all but have infertility. Some have pain but no infertility. Some have pain AND infertility. Some have disbling/debilitating pain that impairs daily functioning. Others have minimal pain or intermittent pain that doesn't slow them down TOO much...

Endo is a complex illness! There is a large spectrum of symptoms. Each patient is different.

Yes, we "endo sisters" have much in common!!!

However there are also differences between endo patients. If docs treat all endo patients the same, I believe they are missing the boat! I believe treatment must be tailored and customized to each patient!

You have introduced some important issues!! If you read through my blog, you'll see that I've tried to devote ample time to co-existing illnesses as well as endo. They affect so many endo patients!

THANKS for your input! I enjoyed looking at your blog today.

http://endochick.wordpress.com/

I hope you feel better soon. If you've never tried homeopathics and want me to share my experience w/them, let me know. Hope to see you back soon. :)

Take care,

Jeanne
www.endendoat.blogspot.com

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