Same stuff, different year, still NO ENDO! 7 YEARS Endo free after expert excision!

I am 7 YEARS ENDO SYMPTOM FREE TODAY!!!
As I sit here, contemplating what to write, wondering what I can add to my novels of posts from years past, I’ve decided to sum it up in the most elegant sentence possible-

Same stuff, different year, still NO ENDO!

For the first few years after my expert excision, I kept “looking over my shoulder” waiting on my endo to “come back”. After all, I had gotten a very poor prognosis from multiple physicians – a lifetime full of nearly yearly “burn off” surgery, hormonal suppression, pain and infertility. I had chosen a different route with a significantly higher chance of success (specialist excision) but would I really beat the odds given to me by regular OBs/REs?

I have indeed.

My backstory-
My life in 2009-2010 was suddenly very bleak. I had – seemingly overnight – changed from the athletic martial artist to the girl who needed her husband’s help to get out of bed. We had gone so far as to re-arrange our bedroom so that I could basically live there, as my 24/7 pain quickly “canceled” my life. I spent the next year desperately trying almost every natural remedy, diet, option you could think of – to absolutely no avail. I eventually came to terms with needing surgery, and, by sheer chance, met women who told me of “excision”. But wouldn’t my regular OB/GYN do the same surgery? I learned that the answer was “no“.

On June 24, 2010, I went into excision surgery with Dr. Ken Sinervo in Atlanta, GA.
I woke up feeling better than when I had gone in and I continued to improve.
I lost only my appendix (and a bunch of pathology confirmed endo and some adhesions).

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Reproductive organs lost to endo: ZERO.

Excision got me OFF of the hormonal suppressants that I was supposed to be stuck on indefinitely.

3 months after my excision surgery, I competed in – and WON – a redneck pig chasing contest. Yes, that’s right. The previously bedridden me jumped in a mud pit, outran other people, chased down a pig and football tackled it. I even took a picture with the poor piggy after the event.

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A year after my excision surgery (and only 3 months after we “quit preventing”), I found myself naturally pregnant with the baby that local doctors didn’t think I could ever have.
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1 year and 10 months post surgery, I gave birth to my daughter.
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4.5 pain free years after the excision, I developed symptoms of a different condition (adenomyosis) and needed a hysterectomy (I kept both ovaries). The silver lining? THERE WAS NO ENDOMETRIOSIS FOUND ANYWHERE. There had been NO RECURRENCE after my excision years before.
Since then, I’ve also gone to pelvic floor physical therapy (highly recommend).
endo stage 0
It’s now been 7 YEARS since the excision, and I’m thrilled to say that I’m still completely free from endometriosis and its symptoms. My ovaries cycle every month – totally
un-suppressed. My husband I can tell from *cough* my PMS attitude *cough* when my cycle is every single month – but I have no pelvic pain or cramps.

In addition, I recently began using an ESTROGEN cream.
Not only has my estrogen fixed me right up but #StillNoEndo.

To date – despite having BOTH OVARIES CYCLING RIGHT ALONG EVERY MONTH AND TAKING PRESCRIPTION ESTROGEN, I have not had a recurrence of the endometriosis symptoms that sent me to the OR on June 24, 2010.
If I had to describe expert excision in a phrase, it would be “life changing”.

2 weeks ago, I got home from a pain free, multi-thousand mile road-tripping vacation with my family.
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The next time your regular OB/GYN tells you that they need to castrate you by removing your *healthy* uterus/ovaries so that endo will “die off” (it won’t), call out their misinformation and inform them that endo can be removed AND you can keep your healthy parts. #RemoveDiseaseNotHealthyOrgans

RIP MY ENDO 6/24/2010! Haven’t missed you!
#EndometriosisFreeSince2010
#ExpertExcisionSurgeryForTheWin

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Natural Cure For Adenomyosis? 

As a women’s health advocate, I promise to always tell you the truth. I can’t, however, promise to always tell you what you want to hear. 

I was raised very ‘crunchy’ and ‘natural’. My mother birthed her children naturally with midwives at home, my daughter (while born in a hospital) was birthed naturally as well. At one time, I wholeheartedly, strongly, stubbornly believed in ‘natural healing’. I believed my body, with the aid of natural remedies, could heal itself of any condition. If I had an issue, I didn’t see an MD, I went to my trusted natural provider and also my chiropractor. I refused multiple medical doctors opinions and attempts to help me until I had spent over a year bedridden – all while heavily ‘treating’ my reproductive issues naturally. Devoid of being able to function, I lost a year of my life- in my prime. I had a gynecologist quote me on my records as saying that ‘doctors don’t help, I’ll fix it myself’. That is still documented in my medical history to this day. But here’s the cold hard facts, ladies. When it comes to *adenomyosis*, unfortunately, the best one can realistically hope for with such methods is a reduction in symptoms – the disease will still be there. My adenomyosis was asymptomatic for almost 5 years after initially being incidentally discovered – I still ultimately ended up with a #hysterectomy. THERE IS NO NATURAL OR NON SURGICAL WAY TO REMOVE THE ENDOMETRIUM (not to be confused with endometriosis!!) FROM THE MYOMETRIUM. As long as you have endometrium in the myometrium, you have adenomyosis. Not ‘had’, HAVE. Present tense. *The myometrium is the muscular layer of the uterus. Once it has been damaged, there is no cream/oil/diet/prayer/remedy that will undo that damage.* While I support anyone hoping to restore their quality of life with this condition, it is absolutely critical that we remain realistic and fact based. As part of healing, and being overcomers and not victims of this disease, we must first accept reality. And you know what? That reality sucks. It’s horrible. Awful. Frankly, it’s bullshit. Especially when you are young as I was when I had to make hard choices. I had a very unplanned hysterectomy for adenomyosis at the ripe old age of 25. But it’s still reality. Anything else is living in denial. Symptom reduction is not the same as being “healed”. In addition, adenomyosis is a progressive condition – even if one *temporarily* reduces symptoms – which is fantastic, don’t get me wrong – they are highly, highly likely to eventually go back the other way. There is only one, and I repeat, ONE cure for adenomyosis. ONE. Sadly, it’s a hysterectomy. That’s the truth. 

(Disclaimer-not advocating rushing off for a hysterectomy if that is not where you are in your journey, merely keeping it real after seeing several claims of being able to ‘heal’ adenomyosis naturally. This is also not to say that there are no options to help with symptoms or to hopefully get you to be able to have children (if that’s what you want). There are temporary options. We just have to be sure to remember that they are almost always merely temporary. ❤️) 
~ Rebecca Gibson
#RealTalk

#TheHardTruth

#WomensHealth

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Life After Adenomyosis – 2nd Hysterversary!

Wow how time flies! It’s been 2 years since I said goodbye to evicted my uterus. Sometimes it feels kinda weird that I’m only 27 and am already 2 years post hysterectomy + prophylactic salpingectomy (uterus/cervix+tubes, I kept both ovaries), but I’m happy to say that I have no regrets. If I knew then what I know right now, I would make the same decision. It’s a life changing surgery – and definitely not one I’d have done unless my uterus itself had something wrong with it – but life sans angry, dysfunctional adeno uterus is pretty great.
So, how did I get here? Well ….

THE SYMPTOMS:
Labor-like Uterine Contractions
Blood Clots
Burning Bowling Ball Mid-line Centered Pelvic Pain
Back Pain
Pain with Sex
Pain with Orgasm
Full Bladder Set off Uterine Contractions
Pain Radiating Down Inner Thighs
Bowel Pressure

NUMBER OF PHYSICIAN OPINIONS OBTAINED PRIOR TO SURGERY:
3

UNANIMOUS PROFESSIONAL OPINION / INDICATION FOR SURGERY:
Adenomyosis

DATE OF SURGERY:
December 30, 2014

AGE AT TIME OF SURGERY:
25

THE SURGERY:
*Total Laparoscopic Hysterectomy (uterus/cervix removed)
*Prophylactic Bilateral Salpingectomy (tubes removed as cancer prevention)
*Lysis of Adhesions (minor scar tissue removed)
*Cystoscopy (bladder checked out – normal yay!)
*Right Ovarian Cystectomy (ovarian cyst removed from right ovary – pathology confirmed it to be a normal, cyclical functional cyst – nothing to be concerned about – woo hoo!)

POST OP DIAGNOSES:
Adenomyosis
Adhesions
Right Functional Ovarian Cyst

The best part? Absolutely NO endometriosis found anywhere which means that the specialist excision for my endo back in 2010 – which enabled me to conceive my daughter – had been overwhelmingly successful in getting rid of my endo while preserving my organs. Today, my ovaries continue to chug right along and I remain endo symptom free. I’ll mark 7 years free of the stabbing/throbbing/knife in pelvis “endo life” in June 2017.

THE RECOVERY:
Ughhhhhhhhhhhhhhhhhhhhh. No, really, it was pretty rough but I survived. From a physical standpoint, I felt like death warmed over for around 12 days before rounding a corner and declaring that I was “probably going to make it”. After that, each day was slightly better than the previous day. By 6 weeks, I was back to nearly all daily activities and, at 8 weeks, my surgeon removed the last of my recovery restrictions. I was hit (by what felt like a freight train) with a lot of emotional recovery stuff that I wasn’t expecting. We have one child who was 2 at the time and we were done in the reproduction department. 11 months earlier, we had permanently closed the door on more children when my husband had a vasectomy. I was terrified of becoming pregnant again – because of the complications I had with my one and only pregnancy – and also because we realllllllllllllyyyyyyyyyyyyyyyyyyy just didn’t want more kids. Imagine my shock to find myself squalling over loss of fertility. Hormonal roller coaster from hell that thankfully smoothed itself out when my ovaries shook off the shock and went back to work. Hysterectomy recovery in a word? Survival.

THE FIRST YEAR:
My first year saw me adjusting to life with no periods. For me, that meant getting rid of an impressive collection of “supplies” and developing an obnoxious snicker that comes out every time I see the tampon aisle in the grocery store. I eventually quit expecting my period with bathroom trips and I’ve concluded it’s not coming – even if my period tracker app thinks I’ve been “missing” it. I haven’t. I bought new panties and new pants, and I no longer worry about waking up covered in blood or bleeding through in public. My first year also saw me making 13 weekly treks for pelvic physical therapy (highly recommend) for a mild case of pelvic floor muscle dysfunction (diagnosed pre-operatively). My nearest in-network pelvic floor physical therapist is hours away in another state so that made for some fun adventures with the hubs. The strength of my pelvis improved with the PT and my marriage got stronger from the “kid free” hours the hubs and I spent driving back and forth.

YEAR 2:
Year 2 has seen me have some bittersweet moments as my now 4 year old has noticed that she doesn’t have a brother or sister like her friends do. This has resulted in her routinely asking for a sister which tugs at my heart strings (although, logically speaking, I know she wouldn’t have gotten a sister anyway – hyster or no – because we had no plans for more children). I think it’s because before I was making a choice not to have more kids, and now it’s not up to me – and that’s taken some time for my type A personality to get used to.
It occasionally sinks in that, unless the hubs had his vasectomy reversed, we did egg retrieval and got a surrogate (all things that are not only not desired, but that are also financially out of reach), there’s absolutely no chance of ever having another child. 99.999999999% of the time, that’s perfectly completely wonderfully fine.  Honestly, I find my feelings on surgical sterility rather ironic really for someone who used to worry about getting pregnant and took great steps to avoid it.

I’ve also checked off another annual exam + a smear (yes, you read that correctly – hysterectomy doesn’t automatically mean the end of smears – discuss with your doctor about your case). My gynecology care plan as it stands is for a pelvic + breast exam yearly, and a smear every 3 years. At the recommendation of my gynecologist, I’m also starting some vitamin E capsules daily in an effort to reduce the discomfort from fibrocystic breasts. My primary care doc discovered the breast issue awhile back (but had no suggestions), so I’m glad that I discussed it with my gyn. The breast soreness comes and goes throughout my “cycle” (still have both ovaries) and I’m just about tired of it. I’m hoping for some relief from these super sore boobs! My well woman exam this year was on 12/20, and my doctor noted that I was likely about to have what would have been my period. I was not at all distressed to realize for the 171524th time that, were it not for boob changes, crankiness, and an increased consumption of chocolate, I’d have no idea where I am in my cycle. With my endo long since expertly excised/gone and my “soft, boggy, angry, obvious source of pain” adenomyosis uterus kicked to the curb, my “cycles” remain completely free of pelvic pain! Carry on, ovaries, carry on. I’m still dealing with some vaginal dryness that started a little over a year ago (side effect of surgery in my case blah) which is annoying but I’ll take the trade off.

Overall, 2 years out, I’ve very well adjusted to life post hysterectomy and I’m thrilled to say that I don’t miss my not-so-dearly-departed uterus at all – I’ve found that I am a much healthier and happier woman without it.
Adenomyosis – 0
Me – 1
Year 3 here I come!

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Understanding Hysterectomy

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First, some basic facts about hysterectomy:


*A hysterectomy is the surgical removal of the uterus (hyster = uterus, ectomy = surgical removal).

*A hysterectomy is a fertility-ending procedure.

*A hysterectomy is not a cure for endometriosis (even if you also have bilateral salpingo-oophorectomy  which is removal of tubes/ovaries), and, in a lot of cases, is not necessary to effectively treat the condition. If you have endometriosis, consider consulting with a specialist expert surgeon who can excise or “cut out” the endo lesions (completely different from the burn off methods used by average OB/GYNs). Often times, this can be effective in removing the DISEASE while leaving you with your organs intact. You can watch my story of overcoming endometriosis almost 7 years ago – without the loss of ANY reproductive organs – and conceiving a child naturally with fertility sparing excision surgery here.

*A hysterectomy is considered the definite treatment for adenomyosis (not to be confused with endometriosis).

*It’s a common MISCONCEPTION that a “partial” hysterectomy means ovaries left, “full” or “complete” or “radical” means “all reproductive organs removed”. THIS IS MEDICALLY INACCURATE.

*A hysterectomy, whether partial or total, refers ONLY to the uterus and cervix – no other organs. There is nothing in the term “hysterectomy” that refers to ovaries and/or tubes. Removal of ANY organ that isn’t the uterus, even if it is done during the same surgery, is a separate/additional procedure – it is not part of a hysterectomy itself.*The cervix is the neck or lower part of the uterus – as such, a “partial” “sub-total” or “supracervical” hysterectomy means that the uterus was removed, but part of it – the cervix – (hence “partial”) was left behind.*A “total” hysterectomy means the entire uterus – including cervix – was removed.

*A “radical” hysterectomy involves the removal of the uterus/cervix, upper vagina, parametrium (the fibrous band of tissue that separates the supravaginal portion of the cervix from the bladder); often involves salpingo-oophorectomy (tubes/ovaries removed), as well as staging of cancer using lymph nodes. This is typically only performed in cancer patients.

*A hysterectomy is a surgery you can only have once. If you have your uterus removed, and later have your ovaries and/or tubes removed, that is not “two hysterectomies”.

*Removal of ovary(ies) is an oophorectomy, not a hysterectomy. Removal of Fallopian tubes is a salpingectomy. Removal of both tubes and ovaries together is called a bilateral salpingo-oophorectomy.

Abbreviations/Helpful Terms/Commonly Related Procedures:

T = Total (in this case, entire uterus including cervix)
S = Supracervical or Subtotal (uterus leaving cervix behind)
A = Abdominal (can also stand for “assisted” when used in term LAVH)
V = Vaginal
H = Hysterectomy
TLH = Total Laparosopic Hysterectomy
LSH = Laparoscopic Supracervical Hysterectomy
TVH = Total Vaginal Hysterectomy
LAVH = Laparoscopic Assisted Vaginal Hysterectomy
dvTH = Total Hysterectomy using daVinci
dvSH = Supracervical Hysterectomy using daVinci
TAH = Total Abdominal Hysterectomy
SAH = Supracervical Abdominal Hysterectomy
Oophorectomy = removal of ovary(ies)
Salpingectomy = removal of tube(s)
Unilateral = one
Bilateral = both
BS = Bilateral Salpingectomy (removal of both fallopian tubes, ovaries left remaining)
BSO = Bilateral Salpingo-Oophorectomy (removal of both tubes/ovaries)
RSO = Right Salpingo-Oophorectomy (removal of right tube/ovary)
LSO = Left Salpingo-Oophorectomy (removal of left tube/ovary)To successfully abbreviate your surgery, simply find the term for your specific type of hyster and then add any additional procedures using a + sign.
Example: Total Laparoscopic Hysterectomy + Bilateral Salpingectomy = TLH+BS
(removal of uterus/cervix + fallopian tubes using the laparoscopic approach).

Explanations of the Various Types of Hysterectomy:

Total Laparoscopic Hysterectomy or “TLH” –
In this surgery, 2-5 small incisions are made on the abdomen, however, no vaginal incision is made (although the vagina is used for organ removal). Surgery is performed entirely using the laparoscope. Uterus/cervix removed through the vagina intact and then the vaginal cuff is created. https://www.youtube.com/watch?v=gMMJIvwjOD4

Laparoscopic Supracervical Hysterectomy or “LSH” –
Surgery performed entirely using laparoscope. Using a tool called a morcellator, the uterus is cut into pieces and then removed through the abdomen. Cervix remains.
https://www.youtube.com/watch?v=CrDxBxfznmE

Laparoscopic Assisted Vaginal Hysterectomy or “LAVH” –
In this surgery, 2-5 small incisions are made on the abdomen, as well as an incision made vaginally. The surgery combines the vaginal and laparoscopic approach. The uterus is removed vaginally.

Total Vaginal Hysterectomy or “TVH” –
In this surgery, a cut is made vaginally. No incisions are made on the abdomen.
The surgery is performed entirely through the vagina. Uterus/cervix are removed vaginally.

DaVinci Total Hysterectomy or “dvTH” –
Removal of uterus and cervix using robotic-assisted technology. http://www.methodisthealthsystem.org/daVinciHysterectomyAnimation

DaVinci Supracervical Hysterectomy or “dvSH” –
Similar to a daVinci total hyster, the variation here is that the cervix is left behind. https://www.youtube.com/watch?v=btOqKqtxsG0

Total Abdominal Hysterectomy or “TAH” –
This surgery removes the uterus/cervix using a c-section style incision. https://www.youtube.com/watch?v=050kjJpsNLg

Supracervical Abdominal Hysterectomy or “SAH”-
Similar to a TAH, the variation here is that the cervix is left behind. https://www.youtube.com/watch?v=050kjJpsNLg

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EndoWhat? Review

I’ve received multiple Facebook messages as to my opinion of this film, so I’ve decided to pen my thoughts. If my inbox is any indication, I’m apparently far from alone in my feelings.

I’m fairly certain my review will ruffle some feathers, but um, quite frankly, I don’t care.
I pride myself on being incredibly truthful and forthcoming and well, as a woman with a history of surgically confirmed endometriosis, this is my honest opinion of the film.
Take it or leave it.

About the movie:
EndoWhat? is a film that touts itself as an up-to-date, fact filled, science backed documentary that will educate the viewer on the epidemic that is endometriosis.

And it is.

Or rather, the first half of it is anyway.

The film gets off to a great start. Symptoms of endometriosis are discussed, the average diagnostic delay is brought to light and the need for early detection is highlighted. Personal stories give the viewer an emotional connection to endometriosis. The viewer is told that it is important to have expert excision surgery with a specialist as opposed to repeated, superficial and incomplete surgeries with an everyday OB.
The first half of the documentary is all round excellent – and then …

We are thrown into a lengthy portion in which autism pseudoscience, shampoo, and bath towels become the focus. A helping of why you should be sure to exercise really drives home the point: surgery is good, do sorta kinda try to see a specialist, but the REAL problem is your shampoo and your amount of physical activity. If you would just get out of the fetal position and go for a run…. (As a former martial artist (Black Belt) who was forced to quit martial arts because, at one time, I was PHYSICALLY UNABLE TO GET OUT OF BED UNASSISTED, let me tell you how feasible it can be to continue to exercise)….

To quote my husband who attended the screening with me “did we take a left turn somewhere?”

Now, don’t get me wrong. I’m all for any woman doing whatever she has to do to find relief from the hell on earth that is endometriosis. The issue, however, is that this film is supposedly SCIENCE based, and THERE IS NO LITERATURE (to my knowledge) that shows that swapping out your shampoo and taking fewer showers will keep you from getting nor get rid of your endometriosis. None. Endometriosis has been found in the autopsy of female fetuses at the same rate as it is found in the general population. I’m a sleep deprived mom, but I don’t recall the film discussing the very high likelihood that we are born with it. The actual fact is that women in third world countries also have endometriosis. This is a WORLDWIDE epidemic, it is not limited to those with higher environmental exposure to evil toxins.  The movie glosses over this with a selected sampling of commentary – including one physician who states that in his country, you “didn’t see” women with higher stage endo back decades ago. Goodness at the data cherry picking here. Endometriosis is a SURGICAL DIAGNOSIS. Prior to the invent of using laparoscopy for endometriosis, pelvic surgeries were performed via laparotomy. This means that, to spare you from a hip to hip incision, you simply didn’t get surgery. So absolutely. Yes. You didn’t see women with higher stage endo. Heck you rarely saw women with endo at all. BECAUSE YOU WEREN’T BOTHERING TO LOOK. Not because women weren’t doubled over in pain. Not because it wasn’t there to find.
Somewhere around here in the film, we are shown a graph on autism with the same premise. Gawddddddd. Just stahp. For the love of all things science, can someone please call it a wrap already??

This is where the film gets personal for me. And not in a good way.
You see, I was raised very “natural”. “Crunchy”. In fact, when my symptoms first presented, I didn’t start with a visit to a doctor. Nope. I went to my trusted herbalist. Then to, nope, still not a MD, but instead to a chiropractor. Only when it became clear that I, at a minimum, needed to know what was wrong with me did I visit a MD. Even then, when the OB/GYN suggested endometriosis as a strong possibility, I did not pursue Western treatment. I thanked her for her time and informed her I would be “curing it naturally” as “doctors don’t help”. True story.
I would spend the next 10 months getting worse every month. Within a few weeks, I was dependent on my husband for his assistance in normal daily routines. You know, things like walking from our bedroom to a basically adjacent bathroom. Despite this, I spent the last half of 2009 and the first half of 2010 forking over hundreds (if not thousands) of dollars for an impressive arsenal of herbal remedies, dietary changes, chiropractic visits, massage visits, you name it, I can almost guarantee I tried it. When I finally broke down and had surgery, the surgeon informed my husband that, as a direct result of endometriosis which was found in multiple locations in my pelvis, my appendix was grossly abnormal and would have resulted in emergency surgery by that weekend. My surgery was on a Thursday. 48 hours away from emergency surgery. That’s how effective the “natural” raising and a year’s worth of natural remedies and the “endo diet” were for my pelvis. And yet, I still went through a period of “self blaming” complete with a sense of “failure” and “if I had only tried harder”, before growing as an individual and realizing that I DID do everything I could. Including seeking out actual treatment for my medical condition. Expert excision on June 24, 2010 completely, totally, wonderfully forever changed my life. Imagine my disdain when, years later, I watch the film that is the “best thing yet” and, instead of having my experiences validated, I am given a message that I should have swapped out my shampoo and exercised more. Shut. the. front. door.

I truly wish the filmmaker could have seen the look on my husband’s face.
Because it wasn’t only my experience, but also his that were invalidated by this film.
My amazing, supportive husband was my caregiver for a year during what was the beginning of our marriage, and he saw things no husband should have see his wife go through. Years later, he attended this screening that is marketed as bringing awareness to endo, and well, let’s just say he was pretty pissed off when we left.

Honestly, the biggest issue for me with EndoWhat? is really simple:
The first half CRAMS a basic description of the condition, a few personal stories,  the need for earlier diagnosis/intervention, the suggestion to see a specialist … and then an amount of time equal (possibly greater than? it certainly felt that way) to ALLLLLLLLLL of those topics COMBINED is given to what could arguably be called “woo”. (And that’s coming from a former wooer). The ratio of time spent on each topic is what leaves the viewer with the overall takeaway of how important that individual aspect is, and in this case, the ratio is horribly unbalanced. This is the reason that the parting message is so disappointing. The film could have been easily improved by spending more time on awareness, key facts about the disease, and more on what SCIENCE has shown us is effective, with a shorter block of time allowed to include dietary, herbal, and alternative *complimentary* therapies.
It all comes back to the fact that this documentary claims to show us the most up to date, science backed information on the disease and it spends more time on (admittedly understudied) aspects than focusing on what we do actually know as FACT. Plain and simple. Do those alternative aspects deserve more research? Certainly. Until that research is done, however, if we are going to have a movie that purports to show us what science knows, then that film need to focus on ya know, science.

Now, surgery is not a cure all. To be fair, natural remedies do help lower symptoms and inflammation for some, so they are worth a mention in the conversation. I am a huge yoga fan. I’ve also been through pelvic floor physical therapy which I recommend for every woman in existence – pelvic conditions or no. Alternative methods are excellent “add ons”. But that’s what they are. Add ons. I’ve never seen literature that would suggest that any “diet” or herbal remedy has the ability to eradicate the disease itself. The absolute best possible scenario with dietary or herbal measures is a reduction in *symptoms*. This means that while you may feel better, the disease is still inside ruining your pelvis/organs. And, if you’re like me, you might not even get symptom and inflammation reduction.

I’m not convinced that this documentary really does that much good for awareness given the (fairly heavy?) implications that women not only somehow caused themselves to have the condition, but that they can magically fix it themselves. Certainly seems like for each step forward, we possibly took a step backwards. I’ve already met quite a few women who have spoken of family members watching the film, running with the “woo” and using it to justify their lack of support for the endo warrior in their life. I can easily see this repeating itself globally. Anyone who knows me knows that I am a HUGE proponent of patient involvement, in being an educated and informed patient, in patient responsibility, but this takes it too far. The term “below the belt” comes to mind. Pun acknowledged.

Final Thoughts:
EndoWhat? left me feeling sad. Overall, my husband and I left the screening with an immense feeling of overwhelming disappointment that it’s 2016 and this is the best that we can do. I’ve heard that there is a follow-up film in the works. Fingers crossed. As a community, we deserve better.

About the author:
Rebecca Gibson is a surgically diagnosed endometriosis warrior who calls it like she sees it. She’s a wife and a mommy to a post excision miracle baby. She previously spent nearly a year curled up in the fetal position – all while steadfastly insisting that there must be a natural “cure” – before finally having her life restored with expert excision surgery in 2010. Nearly 5 years after her excision, she developed symptoms of another condition and had pelvic surgery – there was no endo to be found. She remains 6 years endo free today – despite living in the USA, dying her hair and occasionally using bath towels.

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Successful Excision From A Patient’s POV

I want to talk about the definition of successful expert excision from a patient perspective.
If you’re like me, you’ve read the literature from the MD/CRNP angle but what does that translate to for the average woman who is in severe pain and ya know, wants to be able to get off the heating pad and get back to her life?

Let’s quickly review the facts-

*As of 2016, EXPERT COMPLETE EXCISION has the highest success rate of any other treatment option for endometriosis currently available. It’s goal is to remove LESIONS while retaining organs whenever possible.

*Complete excision is NOT the same as ablation/cauterization/vaporization/fulguration. It’s also not the same thing as “excising some lesions” while “burning off other lesions”. It’s not a surgery the average street corner gyn has the training or surgical skill to perform. This is not personal against the typical OB – it’s simply a matter of fact statement. If a doctor is busy delivering babies, doing paps, prenatal care, that’s time that is NOT being spent in an OR developing/retaining sharp endometriosis surgical excision skills. Surgical skill matters. Surgical experience matters. This doesn’t mean your OB is not a good doctor for other things, it means that your OB is not your best chance of overcoming endometriosis.

*Success of surgery is dependent on how advanced your case is (all more the reason to have it diagnosed/excised early), surgical technique, and the surgeon’s skill. The surgeon must have enough experience to recognize and subsequently excise ALL disease. Again, not an attack on the average doctor. The flat truth is that different doctors have differing levels of skill. My husband is the primary vehicle operator in my family. Why? Because I’m a terrible driver. Squirrel anyone?? Seriously, if you ever encounter me on a highway, I’d recommend running for your life. Doesn’t mean I’m not good at other things (rambling about women’s health to anyone who will listen?), but we all have varying strong suits, and well, driving is not mine. My husband, on the other hand, is an excellent driver. The same principal applies to pelvic surgery. The surgery can only be as good as the surgeon performing it. The run of the mill OB is far better at delivering your babies than they are at delivering you from the hell on earth that is endometriosis.

*The success rate of expert excision is SIGNIFICANTLY better than superficial burn off techniques. Superficial “burn off” surgery with street corner Dr ABC means that you are looking at surgery after surgery, indefinite hormonal suppression, and ultimately castration (which is not a cure and many will continue to suffer even after TH+BSO).
By contrast, expert complete excision means the odds are in your favor to be able to keep your parts and move on from endometriosis. However, it doesn’t mean that everyone who has quality excision will be forever fixed up. Some women (thankfully, a small minority) will have true recurrence. As such, it’s important to realize that while most will do well, some will fall into that minority statistic.

*Endometriosis is not the cause of all pelvic pain. If you’ve been fortunate enough to battle endometriosis, I’d wager you’ll also likely be lucky enough to have at least one other pelvic condition over the course of your lifetime. Adenomyosis, Interstitial Cystitis, Pelvic Floor Muscle Dysfunction, adhesions, fibroids, ovarian cysts, etc LOVE to join in on the pelvic pain party.

So what does “endo free” or “successful excision” mean?

It means that, after a complete expert excision of your endo lesions, you have a very LOW chance of needing/having further surgery in which endometriosis will be found/confirmed on a pathology report as a culprit of your pain. It means that, barring those other conditions I mentioned, you have a good chance of keeping your uterus/other parts and *not* requiring hormonal suppression measures. It means that (barring other conditions), your chances of fertility should increase. It means that your quality of life should improve dramatically and ideally, you’ll be able to return to the land of the living.

What does it NOT mean?

Due to the fact that expert excision only treats endo – excision of endometriosis does not treat any other pelvic condition – it does not mean that you will never have pelvic pain again. If you have other conditions, you will need to address those conditions individually in order to achieve optimal results. For those with adenomyosis, that can mean presacral neurectomy or hysterectomy (preferably without BSO). For those with IC, it can mean following up with a urologist or urogynecologist and finding a treatment that works for your IC. For those with PFD, it can mean you will need pelvic floor physical therapy. For those with fibroids, it can mean hysterectomy or myomectomy. In a perfect world, it might mean seeking out a highly trained surgeon who can excise your endometriosis while also treating adenomyosis/fibroids/cysts/other abnormal pathology during the same surgery.

My story

I personally was “lucky” enough to have endometriosis, adenomyosis, and pelvic floor dysfunction. I had my endo expertly excised in 2010 (no recurrence to date).
4.5 years after my expert excision, I developed severe pelvic pain again. I noticed though that the pain was not the same as my endo pain had been years before. My endo symptoms in 2009/2010 were largely lower left sided “stabbing” and “throbbing” pelvic pain. This time, my symptoms were midline and centered in the pelvis and felt like uterine labor contractions. I also felt as if I was carrying around a burning bowling ball. Surgery in December 2014 (an ovarian sparing TLH) would confirm that there was no endo to be found and the issue was with my uterus itself (adenomyosis). I was also diagnosed with PFD and would ultimately spend 3 months attending pelvic floor physical therapy in 2015.
I’m glad that I didn’t assume the problem was endo because I would have been mistaken.
All of my conditions each required their own treatment for me to be well.
You can watch my video montage here, read more of my story here, and read more about excision for endometriosis from an expert surgeon’s perspective here.

#Endometriosis
#SuccessfulExpertExcision

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Interview with Women’s Health Mag.com!

I was 25 years old when I had my hysterectomy for adenomyosis in December 2014.
The average woman who undergoes a hysterectomy here in the U.S. will be between 40-45 years old. Even in support forums and Facebook groups, I felt really young compared to the women who spoke of being in their mid 40s when they parted ways with their uterus.
It was difficult for me to cope with being nearly 2 decades younger than most women who have had a hysterectomy. My mom still has her uterus, as does my mother-in-law so, while they were supportive, they couldn’t exactly relate to what I was going through.
It’s an odd experience when your mom still has a period and you don’t.

Now don’t get me wrong – my (not so dearly departed) boggy, dysfunctional uterus was wreaking havoc on my life – all kinds of fun things like blood clots, labor equivalent contractions, feeling like I was carrying around a burning bowling ball in my pelvis – so I’ll be honest and say I don’t miss the thing and have no regrets about having it evicted.
I happily snicker right down the pad and tampon aisle and am not at all dismayed by the fact that I won’t ever be needing those again.

That said though, it’s a serious adjustment to come to terms with the surgery itself, the recovery from said surgery, the hormonal insanity that comes with “ovarian shock” (thankfully temporary for me – my ovaries resumed regular function within a short time after the surgery), and the loss of fertility just to name a few.

Over time, I’ve connected with a few women who have also had hysters for adenomyosis in their mid 20s and it’s been quite nice to have those in my life who “get it”. Those who have “been there, done that”. As such (and also largely because I have a big mouth and am not afraid to use it), I’ve been very open about my experiences in the hopes that it helps the next woman who is faced with the same decision. I was recently given the opportunity to speak with WomensHealthMag.com and was thrilled when they decided to write an article about what it’s like to have a hysterectomy at 25. My hope is that it will reach women out there who are dealing with or have dealt with early hysterectomy and let them know that they are not alone.

#BreakTheSilence
#YouAreNotAlone
#WomenMustHelpOtherWomen

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