Saturday, July 19, 2008

How It All Started (Part 1)

My journey with Endometriosis began long before I ever knew what it was. Technically it began before I even got my first period, although I had no idea what was happening at the time. I was a young pre-teen who was just always in a lot of pain and frequently took trips to the ER because of appendicitis scares that never turned out to be anything but just that... a "scare."

My mother would often tell me about how much pain she endured every month, especially when young... as did her mom, and probably her mom's mom too. It "ran in the family" and so was surely nothing to worry about. After all, isn't pain just a "normal" part of every woman's life once they start menstruating? This rationale, along with my pediatrician's assurance that I was perfectly fine, lulled me (as well as my parents) into acceptance. The pain just became a part of my life, of who I was, and we just dealt with it as best we could. As I grew older, the pain grew worse. Eventually it became bad enough that I would miss school on occasion because of it. My legs would go numb from the pain, and my mother would sit with me and rub them for hours.

By the time I was 16 it was bad enough that my mom took me kicking and screaming to my first OB/GYN. After taking my history and asking a few questions (not even as much as an exam was done!) the doctor quickly wrote me an Rx for birth control pills and told me that this would fix everything. These problems were "common" in teens and that eventually my body would adjust, but that probably I just had a "low pain tolerance" and would need to be on the pill forever to keep me content. I took the pills and hoped for the best. After all, she was a doctor... she MUST know what she's doing.. .right?

Fast forward a few years. Now a college student, I was off on my own trying to cope as best I could without the aid of my mom during those rough days each month. The pills didn't seem to be doing much for me anymore, the pain was getting worse. I went to new doctors... they all said the same thing. "Oh you just have a low pain tolerance, maybe we'll try a higher dose... and here, why don't you just take these pain killers!" More pills to pop, great. So the hormones got stronger and my tolerance began to wane. Not only was I still in pain but now I constantly felt sick to my stomach, my moods were all over the place, and each month certainly did not get any easier. Finally, when I was about 22 I found a doctor (while I was living in California for a short while) who mentioned Endometriosis to me. I had never heard of it, but everything she described was dead on to what I had been struggling with for years. I took that information and ran with it, doing as much research as I could.

I moved back home again shortly thereafter and went to a new doctor. I mentioned my previous doctor's tentative diagnosis and this new doctor all but laughed in my face. She said I was "too young" to have something that serious. "This is a disease of the 30-40 somethings, there is no way you could have that" she kept saying. Upon my insitance, she reluctantly agreed to give me a referral to have an ultrasound done to check things out. Nevermind that Endo cannot be diagnosed that way, but what did I know? (And apparently she didn't know very much either!) Of course the ultrasound showed nothing amis, and triumphantly she talked us out of having the Laparoscopic surgery that would be the only way to really know for sure.

Not much later I got married and moved again. Once again, I went to new doctors, all of which told me the same things and stuck me on yet higher dosages of birth control pills. This went on for years until I finally found the one doctor who listened to me. At the age of 26, I was FINALLY diagnosed with Endometriosis, after a Lap. I sadly fall into the all too common group of women that on average go 10 years or more undiagnosed due to the ignorance and unwillingness of doctors to listen and take their patients seriously. Most unfortunate still is the fact that pain was not the only battle-wound left behind from my untreated Endo... we would soon find out that it was the cause of something far worse than any physical pain... infertility.

8 comments:

Jeanne said...

Alex,

Hooray! I think if I hurry maybe I can be the first one to respond to your very first endo blog post! I am truly pleased and honored to post a response to your fantastic opening post on your new endo blog!

Like you, my diagnosis at 23 took place after 10 years of suffering. Experts in the field estimate that the average diagnosis of endometriosis takes place 9.9 years after the onset of symptoms! So, sadly, we are actually average in that it took 10 years apiece of suffering to get a diagnosis!

It’s astonishing that myths like “only women in their 30s and 40s get it” still abound. There are so many “endo myths” out there. It’s disappointing that medical schools are STILL churning out some students who cling to such myths.

Most endometriosis patients spend many years of forced “doctor hopping” before finding a doctor who is right for them. Women who don’t know what their diagnosis is can’t seek the help they need very well. Even women like you who finally get a “tentative diagnosis” of endometriosis (from a doctor who is going on symptoms but hasn’t performed a laparoscopy to verify the suspicion) can later be dismissed by another doctor and told that it is not endo.

Obviously in your case it WAS endo and that doctor who didn’t listen to you (and what your previous doctor suspected) was WRONG not to listen and properly investigate. Besides, you had significant family history that should have been a huge clue for all the docs you saw!

Even women with a firm diagnosis of endo often have trouble finding a doctor who can help them. Some cities simply don’t have many/any doctors who are truly experienced in properly treating endometriosis and in performing laparoscopic surgery properly. (Also, some doctors dangerously believe their skill level to be higher than it is. The doctor who did my first laparoscopy said he had “cleaned me out” and that my continuing symptoms couldn’t POSSIBLY be endo. He proposed wild notions of what else might be happening to me like “toxic shock syndrome” and “early menopause” for the symptoms I was having at the age of 24)!

Ten months after my first laparoscopy (age 23) a 2nd surgeon (a much more skilled and knowledgeable one) performed laparoscopy # 2 on me at age 24. Let’s just say that I wasn’t very “cleaned out” despite what the previous doctor adamantly insisted! My second surgeon gave me the video stills of my endometrial lesions to keep for my medical records. I had photographic proof I had not been “imagining”, “exaggerating”, or “just seeking attention”… as almost all endo patients get accused of at some point by some doctor(s), nurse(s), or even family member(s). Believe me… there was still endo showing on those pictures of what was biopsied during lap # 2 --- AFTER the first surgeon supposedly “cleaned me out”. Many gynecologists can be looking right at endo and not see it because they weren’t trained on all the colors lesions can come in!

Also, I never got ANY relief at all from that first surgery… unless you count the relief of finally having a name for what was happening to me as an emotional relief!

Trust me… it WAS an emotional relief to have an actual diagnosis… to have a name for what had tortured me from the age of 13 (actually it probably started creeping in with symptoms even before my first period at 13).

Physically, however, the first surgery gave me no relief. That same first surgeon then put me on more hormones that made me much sicker. (He apparently didn’t understand, as I have since been informed by other docs and by pharmacists, that some classes of birth control pills can WORSEN symptoms of endometriosis)! The Rx he gave me was making my endo WORSE and he was the one who had made the endo diagnosis!!! Yet he refused to believe he hadn’t “cleaned me out” or that my continuing endo symptoms were really endo!

When I was diagnosed in 1992, I immediately went to my local library. This was a well-stocked library that had always met my needs before then. I couldn’t find anything on endometriosis. I asked the librarian for help. SHE couldn’t find anything on endometriosis either!

That was in 1992. Things are getting better. In some aspects, the progress is slow but sure. In other ways, progress is excitingly fast!

In my experience, the progress in the medical community, as a whole, is slow but sure. Many doctors are STILL uninformed and ignorant about endometriosis and even its most classic of symptoms. Pediatricians surely aren’t trained to screen girls for endometriosis symptoms.

In my opinion, the excitingly fast progress is something you and I are now a part of with our endometriosis blogs!!

The amount of Internet information available on endometriosis now is astonishing! It’s hard to believe that I couldn’t find anything at the library in 1992 (in my pre-Internet days)… and now simply typing the word “endometriosis” in a search engine yields endo blogs, support groups, message boards, national and international associations, research organizations that work on endometriosis, etc.

Blogs like ours may be a tiny speck of the big picture. However, in less than TWO months of endo blogging my site has been visited by people in such far-flung places as Malaysia, the UK, Australia, Istanbul, Norway, Mexico, Canada, the Philippines, the U.S, etc. So people like you and me CAN make a positive difference in getting the word out to people about this devastating illness!

Women (and girls) seem to be getting diagnosed younger now than in years past, from what I’ve observed within my local support group anyway. For example, I was stunned when a high school student (and avid Harry Potter fan, you may be interested to know) joined my local group a couple of years back.

It just blew my mind (in a sad way) that I could have been diagnosed much younger and wasn’t. It also blew my mind (in a good way) that she was able to find a doctor who listened to her, believed her, and took her symptoms seriously… resulting in a proper diagnosis at an earlier age.

Her quicker diagnosis by a skilled and experienced pelvic pain specialist who performed laparoscopic surgery on her may well have prevented her from being infertile when she becomes ready to have children someday.

Sadly, I have heard far too many stories like yours. That is why I am compelled to do my part in educating people about endometriosis. The under-diagnosing and delayed diagnosing of endo is tragic. Progress can be made through education of the public, the undiagnosed patients, AND better education of medical professionals about endo too! (That includes pediatricians)!

I am so sorry you are experiencing infertility. I have met and spoken to many dozens of endo patients over the years who have had their fertility impaired (short-term or long-term) by endo. The infertility support group in my nearest city has approximately 20% of its membership from couples where endometriosis is at least one factor in the infertility. That’s a staggering number.

The GOOD news is I also know of many women who HAVE been able to get pregnant following a time of “endo infertility”.

Some endo patients do not experience infertility as a symptom of endo at all.

Those who do are all over the spectrum.

Some women are infertile long enough to be classified as such but eventually get pregnant. Some get pregnant only to miscarry.

Some are infertile for many years. Of those, some eventually decide to discontinue efforts to conceive. For some, their bodies/minds have just had enough. This is especially true for women who have gone through extensive rounds of ART (assisted reproductive technology). The hormones given to try to induce pregnancy can make some women’s endo symptoms worse while trying to conceive.

Some women are able to conceive after surgical removal of endometrial implants OR acupuncture OR prescription treatment of some kind. Some try ALL of the above.

Some women follow special diets to manage their endo. Some women investigate alternative medicine options like homeopathy or Chi Nei Tsang.

Some women decide to discontinue efforts to conceive and decide not to have children. Others look into adoption as a possible option. Others actually do adopt.

I have met women on just about every portion of the endo and infertility spectrum. I’ve had endo 26 years now. I have been a group leader of an endo support group for 7 years as of next month. In 1992 I joined my first endo support group, near where my parents lived.

I have had people sob/cry to me on the phone, email me until their fingers got sore, and attend our monthly meetings where sometimes a simple hug goes a LONG way!

In less than 2 months of writing an endo blog and listening to the responses it is getting, I HAVE LEARNED SO MUCH!!!

I am excited and happy for you because I know how powerful the experience of blogging on endo has been for me. I just started my blog on June 1, 2008! Already it has lots of content and covers illnesses commonly co-existing in endo patients (i.e. fibromyalgia & interstitial cystitis are just a couple of examples). It doesn’t hurt that I have personal/firsthand experience with fibro and IC too when I’m blogging away about co-existing illnesses…

You’ll be amazed at how much you can accomplish with your endo blog! Your world will most likely never be the same. Now I have “email endo friends”, “blogger endo friends”, “fellow blogger friends”, “MyBlogLog friends”, and many others coming at me from every direction. It’s AMAZING and WONDERFUL!

Alex, if you have not tried acupuncture I HIGHLY recommend it! It’s amazing!!! It has helped me more than ALL of my specialists put together (no offense to my specialists)! Read about acupuncture on my blog... somewhere in my alternative medicine post (and elsewhere, as I never stop raving about acupuncture for long)!!

My acupuncturist uses very thin, Japanese-style needles and it DOESN’T hurt. Research has shown acupuncture to help some women with their infertility! It definitely has helped many women in my local support group with a whole host of symptoms. Also, I know of women in the local infertility support group who get acupuncture too. Just a thought…

Please keep in touch. As I just started an endo blog recently myself, I may be able to give you some helpful tips for getting started. Just post a message on my blog if you have a question and I’ll try my best to help if I can:

My blog is ---

www.endendoat.blogspot.com

Go get ‘em, Alex!!!

Jeanne

P.S. I just LOVE my FEEDjit traffic tools. They tell me where my blog traffic comes from and goes too! I wish I had installed it earlier than I did! You may want to try it. It’s very easy to install. If you go to my blog and locate which FEEDjit tool(s) you want, you can obtain it from mine. (That’s how I got your “Foundation For A Better Life” widget/tool today… I got it from your Harry Potter blog’s “Foundation For A Better Life” widget)! Best of luck!

Jeanne said...

Alex,

I just added your new endo blog to my favorite links (see bottom of my homepage).

So I think we're all cross-referenced for the moment, anyway!

Jeanne

Jeanne said...

Alex,

I wrote a post plugging your new endo site and clarifying the dfference between "Alex" and "Alexandra".. We had an "Alexandra" in a post about endo research just a few days ago.

Check it out (on exciting endo research):

"Tuesday, July 15, 2008 Endo News Flash!! An ENDOMETRIOSIS RESEARCH ORGANIZATION called CureTogether Launches On JULY 15, 2008!!!"

Jeanne
www.endendoat.blogspot.com

Yaya said...

Alex,
Congrats on your new blog! Great first post!!! I too wasn't diagnosed until I was 26. I wish more doctors were educated on endometriosis so that we didn't have to skip around to doctors trying to find out what is wrong with us.
I highly recommend acupuncture (like Jeanne said). It works wonders!!!!!!!
I'm going to put you in my fav blogs list!
Congrats again!
Alicia

My Endo Journey said...

Hey Alex! I noticed you have a new site. Love it! :)

I suffered for years with bad periods, but, took the pill and did "okay" with it. When I got married and we decided to have children, I came off the pill and my nightmare began. I was sick from Oct-Feb with lots of bouts of antibiotics and this and that before they knew what was going on. I guess my diagnosis didn't take as long because I had a very large endometrioma on my right ovary-the reason for my lap. That's when I found out my body was riddled with this disease, and, my journey began.

Very excited about your new site. I'll add it to mine and visit often.

Charisda said...

Alex,
I found your blog through some searching for endo blogs/info, etc.
My story is very similar to yours.
Your journey of pain (literally) through teenage years and college sounds so familiar.
In grad school I was diagnosed (age 27) when my gen prac doc thought my ovary felt a little too large. Ordered an o/s and sure enough it was huge. Had lap surgery to remove my left ovary and discovered it was endo that had destroyed it. My Ob/Gyn said it had probably been growing/destroying my ovary for about 10 years or so.
(if only drs had listened long before...maybe I'd still have my left ovary). I am now 30 and TTC. Praying that it is still possible.
Thanks for blogging about your journey! You are not alone.
~c.l.

Alex said...

Charisda,
Thanks for sharing your story. I am sorry for the loss of your ovary... I have a feeling that my right ovary will some day reach that stage, but so far it has been spared. Good luck with your TTC journey, I know it can be frustrating and hard. Are you trying wth any assistance from fertility meds or procedures? Do you have a blog? I tried to click on your name but it took me to a profile page that wasn't yet set up?

Lacey Bryce said...

Hi, you dont know me but i stumbled upon your blog and was curious. This is the first post ive read so im sure i'll comment more. I was diagnosed at the age of 14. Had my first laproscopy at 15. My first colonoscopy at 16, and my second lap. at 18. I am the only one in my family that has it, none of my 3 sisters have had any problems and look at me like im crazy when i get off the couch too fast and burst cysts. Thats when we knew something was really wrong, i got to the point i could hardly walk normally. Couldnt even stand to wear jeans that buttoned tight across my tummy. My doc actually specializes in endo. He diagnosed me on my first visit, even though i was only 14 and its more commonly found in older women. I'm 21 now, and actually pregnant with my first child. We did have to do fertility, and we were very lucky that it was successful. My husband and i were barely married for a year when i went back for a routine visit and my "lady parts" dr flat out told me its either now or never! None of my sisters understand, they think im crazy for having a baby so young, and so newly married. But unless you've been through what endo puts you through i dont think you really can quite understand. Even now ive been warned that this most likely could be my only biological child. The pregnancy has been anything but easy, thanks to endo and all the damage its left in its wake. Thanks for being brave enough to share your story. It honestly makes me want to create a blog and share mine.