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An Endometriosis Perspective

Behind every piece of health data is a person. And every person has a powerful story to tell. We recently invited CureTogether members to anonymously submit their stories, to share their experiences with their conditions. One member wrote in with her story:
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“I’m 39 years old and my endometriosis symptoms began at 13. I was finally diagnosed at 23. In addition to endometriosis, I have multiple other chronic illnesses. My doctors believe many of these conditions are related to my endometriosis. I have participated in endometriosis support groups for 16 years. I have had 6 laparoscopies. I have found alternative medicine very helpful (especially acupuncture)! I have heard many women’s stories: of not being believed by their medical professionals; women who have had their symptoms marginalized or dismissed; women who go from doctor to doctor searching for someone who will truly understand, take them seriously, and help them get relief/manage their symptoms. Many women are not even believed by their own families just how severe and debilitating their symptoms are. There are many wonderful health care professionals out there who treat endometriosis patients. Unfortunately, finding them can be challenging.”
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By sharing stories we realize we are not alone – there are others out there like us, and we can all join forces and help each other. If you would like to share your story, please write to Alexandra. All stories will be posted anonymously.


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12 Responses to “An Endometriosis Perspective”

  1. Alexandra,

    I hope my story (above) can help other endometriosis patients feel less alone. Endometriosis can have a profound effect on the lives of patients and their loved ones.

    To be clear for readers here, I don’t mind revealing my identity in conjunction with this story but it is important to note that CureTogether does provide the opportunity to post such stories anonymously.

    So please don’t think that you need to provide your name to share your story here. That anonymous option can make some people more comfortable sharing their information.

    The vast majority of women I know who have endometriosis also have other illnesses (as in multiple other illnesses).

    Patients are often frustrated hearing phrases like, “such & such is a poorly understood condition” over and over again.

    What I mean is this: let’s say a patient gets diagnosed with endometriosis first. Then some time later this same patient gets diagnosed with fibromyalgia. A short time later, this patient may be diagnosed with interstitial cystitis. The list goes on…

    Each of the many illnesses that are believed to be somehow “related” to endo are conditions that are “poorly understood” by the medical community.

    This “poorly understood” phrase may be uttered by the pelvic pain specialist or urologist or rheumatologist…

    In the meantime, a patient who was REALLY struggling with just the endometriosis now has a handful (or far more) of serious conditions!

    The connections between illnesses such as those I just mentioned really need to be explored.

    Hopefully this will lead to clues to explain why one person can be affected by such a constellation of illnesses.

    Hopefully finding the cause of this assortment of symptoms will generate better treatment options… or even a cure! (Wouldn’t that be nice?)

    Anyway, I have met dozens of women in person in local endo support groups since 1992 and I started an endo support group locally in 2001. Plus, since last summer, I now write a blog with many readers around the world who have endo and/or other chronic illnesses.

    So I have met (in person) or “met” (online) & communicated with many women who have endo… and they have shared extensively their sometimes quite intense “endo stories” with me.

    Each patient is different and not all endo patients experience the same symptoms.

    Between the pelvic pain and/or the bladder pain and/or the cramps and/or the ovary pain and/or the adhesion pain, endometriosis patients with JUST ENDO as a diagnosis have enough on their plates.

    Can you imagine adding in multiple other chronic illnesses with symptoms like significant urinary urgency/frequency and very severe muscle pain throughout the body? Things can get really challenging!

    Going back to the topic of endo specifically, many patients with endometriosis have infertility as a symptom.

    These patients struggle with the harsh emotions associated with the infertility itself, making decisions about whether to undergo ART (Assisted Reproductive Technology), whether to pursue adoption, and even whether to stop trying to conceive.

    Endo patients are also more likely to miscarry than women in the general population.

    The heartbreaking roller coaster ride that so many endo patients endure every day is mind-boggling.

    To throw many other diagnoses on top of the endo can be unbearable at times.

    There is help!!!! There ARE healthcare practitioners who are highly skilled/experienced at treating endo. There are healthcare providers who truly care!

    There is also immensely powerful help available by connecting with fellow patients!!!

    Women who are not receiving the level of care they need & deserve should really consider “shopping around” for a 2nd opinion.

    Alternative medicine has many helpful modalities available that can be useful. Traditional Western Medicine tends to be fairly fixated on “drugs & surgery”.

    Pursuing treatment from both traditional AND alternative methods can be used in tandem: “integrative medicine” (aka complimentary therapy) is much more effective than either one alone.

    Taking the best each has to offer can improve quality of life and reduce pain.

    Women with endo deserve respect from their doctors! Any patient who does not feel her needs are being met should consider seeking another opinion.

    Often it takes some “trial & error” to find the “right doctor”. Some doctors simply don’t take endo seriously and do not provide appropriate treatment.

    Women need to advocate for themselves with this illness.

    Jeanne

  2. Thank you for your comment, Jeanne! You have a wealth of experience to share, especially when it comes to multiple conditions and individual patient empowerment. I appreciate you posting your thoughts to help so many others like you out there.
    Alexandra

  3. Thank you for sharing your experience & I wish you the best in fighting this! I have a question: how does a woman know for sure if she has endometriosis? A doctor I saw for a few years felt that I had it, but my MRI and transabdominal ultrasound showed no signs of it. I was told it could develop on a microscopic level, though, and a friend told me she’d shared my symptoms and had it. So, there is a big question in my mind. (I did not know whether to check yes or no on the related conditions list, so left it blank.) I don’t want to have one more thing wrong with me, but I wish I knew why I have such strange troubles with my entire monthly cycle.

  4. Here’s Jeanne’s reply to Magenta’s comment – I’m posting it for Jeanne due to a technical error on the blog which we’re working on fixing.

    Hi Magenta!

    This is Jeanne and I wrote the “endometriosis perspective” above. The short answer to your question on how endometriosis is diagnosed is to have an outpatient surgical procedure called a laparoscopy.

    Now… for the long answer:

    By definition, endometriosis occurs when endometrial tissue is found outside the lining of the uterus (the only place where it should be found).

    Laparoscopy is THE method for definitively diagnosing endo.

    MRIs and ultrasounds may very well look perfectly normal even in cases of severe endometriosis. While very large endometriomas (large endometrial cysts of the ovaries) can sometimes show up on ultrasounds, ultrasound is NOT considered a definitive diagnostic method for endo. To diagnose endo, the surgeon removes the tissue that is suspected to be misplaced endometrial tissue and a biopsy of the tissue is performed. (To clarify, biopsy is done to pinpoint what type of tissue it is. This is not always apparent just by the doctor looking at it. Endometriosis is not cancer but biopsy is done to “prove” the tissue is endometrial and confirm that endometriosis is, in fact, what’s happening).

    If it tests as endometrial tissue and is found anywhere outside of the lining of the uterus where it belongs, the patient is diagnosed with endo. (Sometimes women already diagnosed with endo, who have a history of large endometriomas, may get ultrasounds to track the size of these large growths — but ultrasound is not a means for definitive diagnosis). MRI is not considered such a means either.

    Laparoscopy is the method for determining whether someone does or does not have endo. Getting a correct diagnosis is key since many other conditions have symptoms that mimic endo symptoms. Without a proper diagnosis, it is challenging if not impossible to get proper treatment for the condition. In fact, some of the medications used to treat endo could worsen other conditions that mimic it. While no one wishes to have surgery, laparoscopy is the definitive means for diagnosing endo at this time. Selecting a surgeon who is highly skilled in recognizing, removing and treating endo is crucial.

    There are some great doctors out there. Sadly, however, there are many gynecologists who are not sufficiently trained about endo. Picking a doctor who treats many endo patients and performs many laparoscopies is important! Less experienced physicians sometimes perform laparoscopies without having the appropriate skill levels needed to properly find/remove the endo present… This winds up putting the patient in the position of having another surgery to remove endo (that could have been removed in the initial laparoscopy). Some surgeons even perform “diagnostic laparoscopies” where they open the woman up, find endo, close her back up, and tell her she has endo… without removing it. Finding the right doctor to perform a laparoscopy can reduce the number of surgeries, reduce the number of times general anesthesia is administered, and avoid duplicate recovery periods associated with having more surgery than necessary.

    Many doctors know just enough about endo to suspect it (as it sounds like your doctor did) but not enough about it to feel comfortable diagnosing/removing it laparoscopically. I firmly believe that this is when patients should be referred to specialists who know more about endo! It can be tricky finding the right doctor because one gynecologist could be an “endometriosis specialist” while another could know very little about it. (Clarification: there is no such specialty as “endometriosis specialist”. Any GYN can call him or herself that term… as there is no standardized licensing process to be called an “endometriosis specialist”. This isn’t like seeing a cardiologist for heart issues or neurologist for nervous system issues. Not all gynecologists are created equal by any stretch of the imagination).

    I’ve had endo for 27 of my 40 years. I’ve been in endo support groups at the local level since 1992. I started writing my endometriosis and chronic illness blog in June 2008. I have heard stories from hundreds of women with endometriosis and related illnesses. I myself have numerous other conditions correlated to endo in studies or believed to be related to endo somehow: interstitial cystitis, fibromyalgia, IBS, vulvodynia/vestibulitis, Reynaud’s Disease… the list goes on.

    Your doctor was very right about one thing: endometriosis can microscopic. The only definitive way to get peace of mind about whether your symptoms are or are not associated with endometriosis is to have a laparoscopy. I can’t stress highly enough the importance of selecting a qualified physician if you do decide to have a laparoscopy.

    Whether you have a proper diagnosis and name for whatever’s causing your symptoms or not, the symptoms sound like they are already present. While I absolutely understand the stress associated with getting hit with an additional diagnosis, the fact remains that getting a name for what’s happening (whether it’s endometriosis or not) gives you the power to take action… to pursue appropriate treatment aimed at managing your symptoms and getting some relief.

    I cannot emphasize enough the importance of seeking medical attention from the healthcare professionals best qualified to provide it. I do not mean to sound alarmist in any way but some of the classic endo symptoms could just as easily be confused with ovarian cancer or any number of other conditions. Diagnosis enables patients to seek proper treatment.

    While I’m not familiar with your specific symptoms, some possible options for appropriate doctors for you might be: pelvic pain specialist, gynecologist, urogynecologist, or reproductive endocrinologist… to name a few.

    Given some more details about what symptoms you are experiencing, I could probably help you narrow down a bit where to turn. (Feel free to post questions on my blog). In the last few months of writing my blog on endometriosis and chronic illnesses, I have met some AMAZING endo patients and/or endo bloggers who have wonderful suggestions for how to get the help you need when you suspect you may have endo but do not yet have a definitive diagnosis.

    While I don’t normally make it a habit of including links in blog comments, I hope/believe Alexandra will be comfortable with me listing a few specific links here that came to mind when I was writing this. I list them here not to be “spammy” but to save you some time & energy by highlighting some blog posts you may find helpful!

    (1)
    Endochick’s blog “Endometriosis: The Silent Life Sentence” (with a post about the importance of proper diagnosis and about many conditions that can mimic endo):

    http://endochick.wordpress.com/2008/11/13/dancing-with-the-stars-endometriosis/

    (2)
    Melissa Ralston’s blog “Endometriosis: Facing the Battle Head-On” (with a post about finding an “endometriosis specialist”):

    http://endobattle.blogspot.com/2009/02/finding-endometriosis-specialist.html

    (3) My blog (“Jeanne’s Endo Blog”)…

    Here are a couple of posts that may help you. (Be sure to read the blog comments & not just the blog post itself as one of them contains a recent exchange between Melissa and me regarding laparoscopies to diagnose endo & how the “known” is actually easier to deal with than the “unknown”… even when it’s scary to find out that the “known” might be endo).

    http://endendoat.blogspot.com/2009/01/warning-to-endometriosis-community.html

    (On this particular blog post, see the blog comments section where Menchita posted some comments and then Melissa & I responded. (Menchita has “suspected endo” but has not yet had a laparoscopy; she’s scheduled to have one soon).

    I’ve included a couple of other posts you may find helpful too.

    http://endendoat.blogspot.com/2008/11/endometriosis-blog-letters-and-petition.html (This is a post about confusion regarding how to diagnose endo).

    http://endendoat.blogspot.com/2008/08/endometriosis-blog-my-personal-history.html (My personal history as an endo patient).

    Magenta, I have only scratched the surface. Endo is a very complicated illness that’s impossible to “capture” in a single blog comment field. Hopefully by directing you to links pertaining to your questions, you’ll be better able to make informed health care decisions. While it may sound very overwhelming now, there are tons of resources available now to help patients wade through it all. (When I was diagnosed in 1992, my local library had ZERO info on endo… I asked the librarian for help finding endo info and we both came up empty). So much information is available online now!

    I welcome and encourage you to check out my blog. It sounds like your health situation is more complicated than the gynecological issues that have prompted you to wonder if you have endo. Many illnesses tend to “travel together”. This is especially true with autoimmune conditions. This is not only physically challenging for the patient — but any overlapping symptoms between conditions that may co-exist can be misconstrued… causing confusion to patients and doctors alike on what’s causing the symptoms.

    Proper diagnosis is very important for patients to know what they are dealing with. Finding the right doctor is so important.

    Please stop by my blog and see if there’s anything on it that helps you sort out your situation.

    [Obviously my blog is not a substitute for medical advice. Please consult your own physician(s) to discuss your treatment options].

    From what you’ve described, I believe you may find my blog helpful at starting to solve the mystery of what’s causing your various symptoms.

    Best of luck to you and take care!

    Jeanne

  5. Alexandra,

    Thanks for your assistance in getting my comment to Magenta posted. I hope she sees it because I think the links in that comment may help her find the resources she needs to get the relief and answers she deserves!

    Thank you,

    Jeanne

  6. Thank you so much! I will check out the blog & websites. Yes, I also have a bunch of linked troubles, including vulvodynia, fibromyalgia, IBS…sometimes doctors just throw their hands up & don’t want to bother, or they just want to give more hormones, which make matters worse. (I was on/off BCPs & other types of hormones for years to treat my periods and have only had some relief of the vulvodynia in the year I have been off.)

    I have terrible cramping, with the period in solid form instead of a flow, and the pain goes into my rib cage, sides, and back. The nausea is horrible. I currently am unable to work as there isn’t any job where one can take off a couple of days each month on short notice, and Days 1 & 2 are incapacitating. I also have severe pain during ovulation. Next week I am seeing a new gyn. and hope something good will come of it. You are right about it being crucial to find the right doctor, and it can be so hard, especially w/ vulvodynia being a factor.

  7. Magenta,

    I’m glad you got the message! :)

    I have vulvodynia/vestibulitis, fibro, and IBS too (among others)… so I “get it”.

    I have had doc s give up on me too. That’s when it’s time to go doctor-shopping! I *REFUSE* to see docs who can’t help me.

    I’m simply too sick to waste time with them. I hear you re: the hormones. Haven’t used any hormones in a very long time myself. I took 10-11 different BCPs when I was younger in an effort to treat my endo symptoms but I haven’t done hormones in years now.

    My pelvic pain specialist dx me with vulvar vestibulitis and then his partner (a vulvodynia expert) saw me and thinks it’s actually vulvodynia. They can call it what they want. All I know it hurts. I wish I could ride bikes with my daughter but that is out of the question. :(

    Cramping is something I can relate to! The symptoms you are describing are clearly affecting your ability to do your job and to function at a minimal level.

    I think finding a great doctor is going to be key for you right now. Easier said than done, I know. But it’ll be worth the effort if you can find a good one!

    Ovulation pain can certainly happen with endo.

    Glad you’re seeing a new gyn. Hopefully he/she can help you manage your symptoms & improve your quality of life! You deserve proper medical attention and answers!!

    I know it can be very hard finding the right doctor! In addition to the tips in Melissa Ralston’s post about finding “endo specialists” (previous post), let me share some ideas that might help you…

    Try contacting the International Pelvic Pain Society and/or the National Vulvodynia Association for clues on finding a doctor used to treating vulvodynia and your other illnesses.

    Not sure if either organization does true “Dr referrals” in this era of liability concerns but I’ll bet they could at least point you in the right direction for finding a doc near you!

    If you reach a point of getting a laparoscopy, I have TONS of tips for you on selecting a surgeon for the job! Crucial to pick a highly skilled endo surgeon!!

    Also, look for local support groups for your conditions! This can be a major goldmine!!! Meeting other patients near you can help you find the best docs in your area AND provide you with social support in the process!

    You may have support groups in your area and not even know it!

    I started an endo support group locally in 2001. Despite being featured on 2 local TV news stories, having a website ranked #1 on Google for searchers in our area, hanging signs everywhere (libraries, pharmacies, doctor’s offices, even restaurants!), and listing our support grp in newspapers’ health calendars… women still had trouble finding us!

    It broke my heart when women would finally find us and say, “gee, I didn’t know this group existed or I’d have been here sooner”! This was after I was killing myself promoting the group.

    So try finding local support. That may help you find resources!!

    Is your friend with endo located near you and happy with her doc?

    Also, ask ALL of your Dr offices if they know of any support grps. The PCP, the GYN, the rheumatologist, etc. The more people you ask “is there a support group?”, the better your odds of finding support!

    Please do take a look at those links from the previous blog comment!

    The one from Melissa is about finding a doctor (an “endo specialist”).

    The one from Endochick is about illnesses that can mimic endo symptoms.

    My links cover a variety of topics that may help you!

    Magenta, I cannot urge you enough to advocate for yourself and hunt down a doctor who will take you seriously, treat you with respect, and help you obtain the relief you deserve!!!

    I’ve heard too many sad stories over the years of women being blown off by their docs, having had had symptoms trivialized, etc.

    You DESERVE answers and you DESERVE docs who will do their best to HELP you!!

    I hope you’ll visit my blog. There you’ll find 8 months of info on the topics we just touched on. I really think it will help you! I look forward to seeing you on my blog. leave me a comment. :) Magenta is a unique name so if you comment w/that name, I’ll know it’s you! :)

    Take care and feel better!! :)

    Jeanne

  8. Alexandra,

    I just got your tweet message that this post is coming up #1 under “most popular posts”. That’s great. Thank you!

    Jeanne

  9. Hello!

    My blog name was “Jeanne’s Endo Blog” but has changed. You can now find me at “Chronic Healing”:

    http://chronichealing.com/

    Jeanne

  10. My wife was diagnosed with endometriosis several years ago. Her condition went from minor pain to severe pain within weeks. By the time we got an accurate diagnosis she was all but bed ridden. She had a full hysterectomy which obviously caused her to go into premature menopause. Her life changed from the shock to her body an menopause. She was 35 when she underwent the operation. I’m happy she no longer has the problem, but would have rather kept her organs in place.

  11. Regarding Everett’s comment above, I am very sorry to hear about what his wife has been through and wish her well.

    It is important to note that there is no cure for endometriosis.

    I hope Everett’s wife is recovering smoothly.

    Jeanne

  12. Yes, thanks Jeanne for clarifying that. Hopefully one day soon the situation will change and there will be a cure.

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