An article was published on October 30, 2016 in the International Journal of Clinical and Experimental Medicine, which caught my interest. We know that Endometriosis can grow in a lot of places other than the reproductive organs and pelvis. This study found Endometriosis growing within a muscle: the psoas major muscle.
The pso-what-is muscle? Well, that’s what I said.
It’s a pair of muscles that run from the lumbar spine, along the back of the abdomen, and end inside the hip area. It helps flex our hips, aids our walking and running, and can improve posture. In some places, it’s as thick as a wrist! As a side-note, weak psoas muscles can cause back pain, hip pain, limited movement in the hips, tight/deep pelvic pain, belly aches, constipation, and a twisted pelvis. Dr. Axe offers some tips, tricks, and stretches to help strengthen your psoas muscles.
Okay, now back to the study!
A 49-year-old Chinese woman was admitted to the hospital because she had increased CA-125 levels. If you’ve followed my previous blogs, you’ll remember this could be an indication of the presence of Endometriosis. Seven years prior, she had a hysterectomy and oopherectomy (removal of her right ovary) – she had a uterine myoma and ovarian Endometriosis.
After screening and testing, the doctors found a mass in the left side of her psoas muscle and thought she had a tumor. She didn’t have any of the usual signs and symptoms of Endometriosis. She was discharged from the hospital (at her insistance).
Three months later she returned for an MRI. The mass had grown by 3cm and was also involved with her iliac vessels. Her CA-125 levels were still increased. And her physicians needed answers. An exploratory laparotomy was performed and the mass was visualized in her psoas major muscle. It was 10x10x8 cm and was inside the muscle tissue. They continue to fear it was a tumor.
Rather than remove the mass in its entirety, a portion was removed and biopsied: confirmed as Endometriosis. She received more than 3 months of Lupron Depot and the remaining mass decreased in size and her CA-125 levels stabilized. The authors surmise the lesion may have transplanted during prior surgeries and hope this case report sheds further light on the illness.
Yet another example of extra-pelvic Endometriosis, as well as post-hysterectomy Endometriosis. Here’s to hoping this case study continues to push the medical and scientific community into further research and greater funding toward better understanding Endometriosis – and one day finding that much-needed cure.
~ Again, I am a layman. I do not hold any college degrees, nor mastery of knowledge. Please take what I say with a grain of salt. If curious, do your own research 🙂 Validate my writings. Or challenge them. And ALWAYS feel free to consult with your physician. Always. Yours ~ Lisa
Well, here I am, alive and doing well! Surgery was on September 21, 2016, and today is my 3-week surgiversary.
In a nutshell : my Endometriosis had returned, bringing with it a leaking cyst and a bunch of adhesions. Endo had also decided to now grow on my bowel (the outer layer of my sigmoid colon) and my ureter (the tube that carries stuff from kidneys to bladder – he had to detach my ureter, clean it up, and reattach it). AND it disappeared from my liver (doc couldn’t find any there this time). He was able to cut out all of my Endometriosis, except for a lesion that is on my diaphragm. He cut away all of my adhesions and put my organs back where they belong. I’ve still got both my ovaries and fallopian tubes. My uterus was stuck to my bowel, my ovaries and tubes were a rat’s nest, and my uterus was also stuck to the right side of my pelvic wall. It just sounds like such a mess…But, he did confirm that my bladder’s exterior AND interior were completely healthy and Endo-free.
For those who enjoy reading medical mumbo jumbo, an excerpt from my Op Report:
Here’s a little comparison chart of what was found (and done) in 2014 and 2016…as well as the difference in COSTS from the two surgeries. Don’t get me started on the inflated costs of medical care in the U.S…
This recovery was SO much easier than my 2014 surgery. I was far less bloated, hardly had any residual pain from the CO2 gas, and felt a lot better both physically and mentally. Don’t get me wrong; it was still hard (I’ll save that for another blog entry), but it truly was night and day, comparatively. And it’s still rough…I can only sit, stand, or walk for a small amount of time before having to switch it up a bit because of the pain that creeps in around my incisions and abdominal muscles. And I’m still severely restricted until early November on what I can do…and I’m sure I’ll be building up my strength and endurance for a while after that.
BUT : I haven’t had any recurrent Endo pain since my surgery (other than those associated with surgery). Wonderful news.
Below is a little .gif I put together so you could see the difference between 2014 & 2016 for the first nine days after surgery. When I asked my surgeon what he did differently from 2014, he let me know that he let out as much of the CO2 gas as he possibly could.
And here I am now (well, October 4, 2016):
If you’d like to see photographs of my insides and the teeny surgical tools, click here 🙂
So, now that I’m all freed-up of 99.9% of my visible Endometriosis, the adhesions have been cut away, and my “anatomy has been restored,” as Dr. Kurtulus so eloquently wrote, what’s the plan? I’m giving up birth control pills since they didn’t do anything to keep my Endometriosis from returning (I hate the side effects so much). I’ve already had one period since surgery – it lasted a whopping 3 days and the pain was so minimal on Day One that it was handled with two Ibuprofen. I’m also monitoring my pain levels and diet daily (made easier via Google Slides). I’ll go back to see Dr. Kurtulus in April for my annual exam and pap. BUT if I notice any horrible return of pain before then, I’ll make an earlier appointment. And, at the advice of my physician, I’ll continue my efforts to “eat healthy, drink healthy, and exercise.”
I am so grateful to my gyno/surgeon, his staff, the hospital, the surgical team, my wonderful Man, my Mum, and my Rosie. And to all of you who sent me care packages, you’re awesome – they were used well. ❤
Here’s to hoping recurrence is a thing of the past…
And, if you made it all the way down to the bottom, yes…that is a poop with a corn in it. What better way to illustrate those are my guts? 😉
So, Wednesday is the big day. I was talking to my Mum last night and she asked me what exactly my upcoming surgery entailed. Figured I’d share it in case you didn’t know.
Endometriosis lesions (also called implants) grow wherever they damn well please inside the body. My brain interprets them much like mushroom spores that *poof* and attach to wherever they land and grow. However, much like an iceberg, more than just the visible tip exists beneath the surface. Some people liken it to an invasive cancer, although not fatal.
There are a few different ways different surgeons handle removing Endometriosis:
Burning it away. The surgeon destroys the lesion/implant by burning them, much like you would freeze or burn a wart. Often times, this does not destroy the entire implant and may lead to the development of more scar tissue and regrowth of Endo.
Shaving it away. The surgeon again destroys the lesion/implant by cutting off the top surface of the implant, similar to the removal of a mole or skin tag. This, again, may lead to the regrowth of Endo.
Cutting it away. The surgeon removes the lesion/implant by not only removing the visible surface of the implant, but by removing some of the healthy tissue around and beneath the surface; in the hopes of removing the entire implant and slowing the rate of regrowth. This is considered by most experts as the way to do it correctly.
My surgeon may also run into adhesions, scar tissue which forms spider webs or rubber bands around the pelvic cavity, pulling organs out of place or sticking them to one another. These adhesions will need to be removed and treated with a barrier medication to prevent immediate reformation.
It is not an easy surgery, sometimes taking between 1-7 hours to complete. My 2014 surgery took four hours. It’s not as simple as removing tonsils or repairing a broken bone, although I’m certain those are not easy either. It is extensive, requiring great focus and skill on behalf of the surgeon. And due to the complexity of the damage and repair done, recovery can take several weeks.
During my first surgery, Endometriosis lesions/implants were found on my Pouch of Douglas (a void between your uterus and your rectum), my ovaries, my liver, my diaphragm, the lining of my pelvic cavity, my left fallopian tube, and on the scar tissue throughout my pelvic cavity. My surgeon was not able to remove the Endometriosis from my liver due to the risks involved.
My uterus was also stuck to my bladder and my bowels, my bowels also stuck to the left side of my pelvic wall, and my left ovary was completely lost within the knotted mess of Endometriosis and scar tissue.
Once my doctor excised (cut out) all of my Endometriosis that he could and freed up my organs and removed the scar tissue, he treated certain areas with a barrier medication called Seprafilm, in the hopes to prevent the adhesions from immediately redeveloping. I know he will do the same this time around, too.
There. If you were curious what surgery I was going in for, now you know. Everything will be okay. *deep breaths*
All the things I’ve read since my diagnosis and conversations with my doctor.
~ Again, I am a layman. I do not hold any college degrees, nor mastery of knowledge. Please take what I say with a grain of salt. If curious, do your own research 🙂 Validate my writings. Or challenge them. And ALWAYS feel free to consult with your physician. Always. Yours ~ Lisa
So, with surgery a week away, I met with my gyno/surgeon yesterday for my pre-op (you may have already read the details). But as I was driving to work today, I realized I forgot to mention one important fact. One that he mentioned to me the second I sat down in his office, before we got to the nitty-gritty.
He asked for my full attention and stated plainly that this surgery may take away my pain, it may not make a difference, or it may even make my pain worse. He will do everything that he can to make me feel better, but he cannot promise it will. And he asked if I understood what he just said.
I did. And it’s true. And I value him all the more for his blatant honesty (although I know he probably has to tell everyone that to cover his own butt).
I will repeat it:
It may take away my pain;
It may not make one lick of difference; and
It may make my pain worse.
It’s a fact of life. There is no guarantee this procedure will help. And there’s a chance that it may increase my pain. Abdominal surgeries are notorious for causing adhesions to form, which may increase pain and discomfort. And there’s no guarantee that the removed Endo lesions won’t return. There is no cure.
Going into this with my head high and full of positive mojo.
This morning I found out Surgery No. 2 is imminent, thanks to my Endometriosis. The date will be sometime in September; I’ll know more in a few days. I met with my doctor today to discuss my ongoing symptoms and worsening pain. After a long talk and history, an a transvaginal ultrasound (OUCH), and another looooong talk in his office: he felt it’s time to peek under the hood. I knew going in today that the surgical option was likely it. I wish we could tell if it was present in other ways. But nope. My CT was normal. My US was normal. But, as you and I both know, it may not always show up on imaging studies. My symptom history is what convinced him:
Painful sex with deep penetration
Cramping after sex (sometimes for days)
Bleeding after sex
Right upper quadrant pain in my abdomen
Pain in the middle of my lower abs
Pain to the right of my belly button
Pain above my belly button
Pain when he pushed on those areas of my torso
Waking up at night screaming because of the pain in my torso
Examining my prior surgery photographs and seeing they line up with my present complaints of pain (diaphragm, liver).
Extreme bloating after exertion
Flare-ups after exertion
A change in the quality of my life, once more.
My surgeon is also my gynecologist, so he is intimately familiar with my bits. And even better? I like him. And I trust him. And he believes in removing the disease, not just burning or scraping it away…but cutting it out. And he frequents many conferences about the disease (he just returned from an Endo conference in Russia). And he TEACHES robotic laparoscopic surgeries, so he really, really, really knows what he’s doing.
He will look in all the usual spots one finds Endo (pelvic region, uterus, ovaries, fallopian tubes, pouch of douglas), but he’s also going to check my bowels, bladder, liver, and diaphragm. AND he’ll keep his eyes peeled everywhere else while he’s in there. If the lesions are back, I’ve no doubt he’ll find them. And if there’s no Endo present, he’ll still remove the adhesions/scar tissue.
And I cried like a baby in his office. A new nurse practitioner was also present, and she scrambled in search of a tissue box. It was kind of cute watching her through my tears as she tried to non-nonchalantly reach around his desk and bookshelves, only to come up empty handed. We talked about my fears:
What if it’s all in my head?
It’s not in your head. We’ve already confirmed you suffer from Endometriosis. Pain is not normal. And Endo can come back. You know this.
What if you get in there and there’s no Endo?
Then we’ll clean up your scar tissue. It’s the best case scenario, Lisa. It’d be good.
I feel so stupid. Like a hypochondriac. Like a wussy.
You’re not stupid. You’ve already been dealing with the pain for at least six months. You’ve suffered long enough already. It’s time to clean you up.
And, of course, his incredible support just made me cry harder. He knows about our support group and our blog. So he was wonderful when he said, “I know you know all of what I’m about to tell you, but I’m going to tell you anyway.” And proceeded to explain about Endometriosis’ return, how excision surgery is the “Golden Standard,” and how robotic surgery is usually the best choice. I absolutely love my doctor.
The DaVinci robotic surgery system is nifty. The surgeon sits at a console with controls (yes, a grown up gamer system!) and controls teeny-weeny-itty-bitty robotic hands to surgically cut out my Endometriosis lesions and free up scar tissue. He can also suture with the bitty arms. Wanna see something amazing? Watch this video of the robotic system skinning a grape….
Now watch this grape getting stitched back together by robotic-assisted surgery system…
So bear with me over the next few weeks as my emotions go up and down. I may clam up and turn hermit for a while. Or I may suffer from verbal diarrhea and you won’t be able to shut me up. I may sniffle at the slightest thing. Or may just stare out in space. I don’t have any fear of the surgery; it’s the recovery I dread. It’s incredibly painful. And after my surgery, don’t mind me if I cancel things on ya. It’s not that I don’t want to go, it’s that I can’t.
I know many of you reading this suffer from Endometriosis. And many of you know people who do. Continue to spread the word about it…I was 35 years old before I’d even heard of it, yet suffered from it most of my life. If you’ve never heard of it, 1 in 10 women suffer. And it’s incurable: they cut it out, it grows back, they cut it out again, it can grow back again. I made it two years since my first surgery before popping daily pain pills…here’s to hoping for a much longer remission this time around.
All in all, I’m doing okay. What started out as a tearful morning has turned into a kind of “get it over with already” resolve. I’m ready. And will let you know when my date is, once I receive word…
I found it very interesting. Of course, it doesn’t yield any answers, but it does discuss ideas and the need for further research and testing. AND it gives me something to discuss with my surgeon should I ever need to go back under the knife.
When I was getting ready to get wheeled into the Operating Room back in 2014 for my cystectomy, my Doc tells me that if he gets in there and there’s extensive damage, he may need to perform an oophorectomy (pronounced oh-uh-fuh–rek-tuh-mee). I signed the permission slip/waiver without blinking and off we went. Luckily, he didn’t have to perform one. And this turned out to be my Endo diagnostic surgery. Quite the day.
One of our readers & fellow blogger, SnowDroplets, asked the other day if I could look into the pros & cons of oophorectomies, when to have them, and hormone replacement therapy after the ovary(ies) is removed (especially how it may affect with with Endo). You know how I love to learn about new things, so here goes! And thank you, SnowDroplets, for asking this question. I learned A LOT today.
An oophorectomy is a surgery to remove an ovary. When one ovary is removed it’s a unilateral oophorectomy; if both ovaries are removed, it’s a bilateral oophorectomy. And if the Fallopian tubes are removed with the ovaries, it’s called a salpingo-oophorectomy.
“But, Lisa,” you ask, “why would you need one or both ovaries removed?” Good question! Lots of reasons! And we’ll delve into those reasons today.
Ovaries may be removed due to the presence of ovarian cancer…or even just because a woman may have a high risk of developing ovarian or even breast cancer. If the removal of the ovaries is simply as a precaution, the Fallopian tubes will likely be removed, too, as recent studies have shown that the tubes may also develop Ovarian cancer.
Angelina Jolie underwent a salpingo-oophorectomy because of her already-increased risk of ovarian and breast cancers. Preventative medicine.
Ovarian torsion is when the ovary is twisted so badly that it may obstruct blood flow, causing the ovary to swell, which may cause irreversible damage, abdominal swelling, and pain (it can also twist the Fallopian tube). Torsion is considered among the Top Five gynecological emergency surgeries. Conservative surgery can unravel and save the twisted ovary; however, many women who suffer from ovarian or tubal torsion opt for oophorectomies instead.
Tumors or Cysts
Benign tumors or cysts on the ovary can simply be cut away (cystectomy); however, sometimes the damage to the tissue may be too extensive or the tumor or cyst may be considered cancerous, and the ovary is removed.
An abscess can grow on the ovary or Fallopian tube and it can be very painful. Imagine a nasty like a nasty little puss-filled zit. It usually is the result of some vaginal or cervical infection and may go hand-in-hand with Pelvic Inflammatory Disease. Most ovarian or tubo-ovarian abscesses can be treated with intravenous antibiotics and a hospital stay; however, surgery may need to take place to either 1) drain the abscess, or 2) remove the damaged ovary or tube.
Pelvic Inflammatory Disease
Pelvic Inflammatory Disease is a disease of the pelvis, which can affect the uterus, Fallopian tubes, or ovaries, mostly transmitted through sexual intercourse. Long-term, untreated Pelvic Inflammatory Disease can cause adhesions to develop, or the infection may cause sepsis, which can be fatal. PID can also cause abscesses, which may need to be treated with antibiotics, drained, or the infected ovaries removed (as we just learned).
Some studies indicate that women who suffer with chronic PID share an increased risk of developing ovarian cancer. And, as we learned, some women have oophorectomies to combat their increased risk of cancer.
Some women with PID are advised to get hysterectomies because of the damage the infection has caused to their uterus. The ovaries may be removed, as well.
A hysterectomy is the removal of the uterus, with out without removing the cervix, the Fallopian tubes, and/or the ovaries. Depending on a woman’s age and medical condition, she may opt to keep her ovaries, or have one, or both, removed during a hysterectomy. That is a decision that she and her doctor must make together, weighing many factors.
Some women with severe Endometriosis symptoms may ask for a bilateral oophorectomy, thus ending their periods. Many also opt to have a hysterectomy. When I asked my doctor his thoughts on the matter, he said that it will not cure Endometriosis, but it would help with the painful periods…since I wouldn’t have my period anymore. We’ll cross that hysterectomy bridge if we ever truly have to…but for now I have all my LadyBits.
Studies have indicated that Endometriosis sufferers who undergo a hysterectomy and bilateral oophorectomy have a decreased risk of recurrence. One study had 29 women undergo a hysterectomy, but left their ovaries – 18 of those women had recurrence of Endo. That same study had 109 women who had hysterectomies with bilateral oophorectomies, but only 11 of them had recurrence. A second study showed similar findings with a different bunch of ladies. And yet another study found that it didn’t make a difference if you kept your ovaries or not with a hysterectomy; that the rate of recurrence was the same.
My personal belief is that a hysterectomy isn’t a cure for Endometriosis. I know it has helped a lot of women with their symptoms, but I also know a lot of women who continue to suffer years after their hysterectomy. Excision is the key. And even then it may recur.
That being said, Endometriosis is believed to be an estrogen-fed disease. Ovaries produce estrogen, but so do a lot of other functions in our body (adrenal glands, fatty tissue, and certain foods & supplements mimic estrogen) – cut out the ovaries and our bodies are able to still produce estrogen. Just know that fact…
If you’ve had surgery for Endometriosis, you’ll be familiar with these choices of surgical techniques for removing the ovaries:
Laparotomy: manual surgical procedure using a large incision across the abdomen; usually a longer recovery time with more risks of complications. May require a hospital stay.
Laparoscopy: manual surgical procedure using smaller incisions, tiny camera, tiny surgical instruments; usually a faster/easier recovery. May be outpatient (in and out the same day).
Robotic laparoscopy: same as a laparoscopy, but this time it’s robot-assisted! Queue the Terminator!
Pros & Cons
The biggest pro to an oophorectomy : hopefully you’ll be solving whatever issue caused you to have the procedure done in the first place!
If you have only one ovary removed (and still have your uterus), you’ll continue to have your period and are still able to conceive naturally (well, if your body will allow you to). Even if you have both ovaries removed and still have your uterus, you can still make babies, but with help from SCIENCE!! Consider freezing your eggs for future IVF treatments before the bilateral oophorectomy, although some doctors just won’t do it under the theory that freezing eggs isn’t a viable option.
Women who undergo a bilateral oophorectomy are plunged into immediate menopause. The severe lack of hormones that may also cause depression, mood swings, and sex drive, or even lead to heart disease, osteoporosis, or dementia.
Studies indicate that women under the age of 40 who undergo a bilateral oophorectomy are 7 times more likely to develop heart disease. They’re also at a higher risk of stroke, Parkinson’s Disease, anxiety, or depression. The younger the age of the woman at the time of surgery, the greater the risks of developing these conditions.
Another study indicated that a woman’s risk of developing dementia or cognitive impairment is increased by 50% if they undergo an oophorectomy. Further research is needed, and quickly.
As with all science and studies, though, the data is ever-changing. Reanalysis of past studies are always being conducted and contradicting prior findings. These pros & cons may seem dark and scary…but know that not all women suffer from these side effects or increased risks. Our bodies are our own. Individual. Don’t let these scare you from treatment you may need. Please talk to your doctor.
Hormone Replacement Therapy
To combat some of those cons, some physicians recommend hormone replacement therapy (also called HRT).
Some studies have indicated that women with Endometriosis (and no ovaries) may benefit from a continuous combined HRT (estrogen + progestogen) or the use of Tibolone. Rather than just straight estrogen, these therapies may not stimulate the recurrence of Endometriosis.
Not only can hormone replacement therapy be detrimental to those with Endometriosis, but it once more increases the chance of cancer in women who take HRT. Research shows that women over the age of 45 who had undergone a hysterectomy with bilateral oophorectomy and are taking HRT have an increased chance of developing breast cancer.
Some side effects to hormone replacement therapy can be irregular bleeding, nausea, breast tenderness, leg cramps, depression, and irritability.
When do you know if you should consider an oophorectomy?
Well, you’ll likely not know until your physician says something. He or she may bring it up in a consultation after reviewing your symptoms and imaging studies. Or it may be, like me, a possibility during a surgical procedure.
If the oo-word does enter into your realm of possibilities, please have long discussions with your doctor about your individual medical history, the risks, and the benefits. See if only one ovary needs to be removed, or if they must take them both. If you’re getting a hysterectomy, please know that they don’t always have to remove your ovaries; again, talk to your doctor.
Write down your questions before your appointment. Bring them with you and ask them all…and write down the answers. Sometimes it helps to have a friend or loved one accompany you; they may remember some information you didn’t.
~ Again, I am a layman. I do not hold any college degrees, nor mastery of knowledge. Please take what I say with a grain of salt. If curious, do your own research Validate my writings. Or challenge them. And ALWAYS feel free to consult with your physician. Always. Yours ~ Lisa
A video released on April 19, 2016, discusses three surgical options for removing diaphragmatic Endometriosis. As you may know, I have Endometriosis on my diaphragm (and I’m not talking about the birth control), as do several other women that I know. What does that mean? Read all about Endo and the lungs here or diaphragmatic Endo here. If you’d like to know what Endometriosis looks like inside some women, fast forward to the 4:01 mark of the video…
This video was particularly interesting to me because I may, one day, require the thoracoscopic surgery to remove the lesions/implants from my diaphragm. My surgeon let me know that he wasn’t able to get it all in 2014 because you simply cannot see all of the diaphragm via laparoscopic surgery. This video confirms it.
Warning : the video is graphic and is not safe for work.
I’m grateful to Gary for helping me access this video, and for his interest in helping others. Thanks, Gary. ❤
One of my readers recently contacted me asking if I could do some research for her. Her physicians suspect she may have hyperplasia. What is that, you may ask? It’s the changing or enlarging of cells or organs which may develop into cancer. Specifically, she is undergoing tests to see if she has endometrial hyperplasia. Now what’s that? It’s when the uterine lining (the endometrium) is too thick. Her question? Is there a link between Endo and hyperplasia?
I found this to be very interesting as I had an MRI before my diagnostic surgery which found I had abnormally thick uterine lining. The first part of my surgery last year was to go in and perform a D&C (dilation & curettage) to remove some of the thick lining. So now I’m not only researching for my reader, but for myself (although my D&C biopsy came back normal).
How does endometrial hyperplasia develop?
It appears to be estrogen-dominant (sound familiar…Endometriosis may very well be an estogen-driven disease). Many women who have high levels of estrogen, but lower levels of progesterone, may develop endometrial hyperplasia. It has to do with hormones, ovulation, and the lack of progesterone, which may mean the lining of the uterus does not shed (at all, or as well as it should). The over-dominant estrogen may encourage the lining to grow and thicken, and these over-crowded cells may develop into hyperplasia.
Mostly, endometrial hyperplasia occurs after menopause, once ovulation stops and progesterone is no longer produced. It may also most likely occur during “the change of life” when ovulation is irregular (oh the things we have to look forward to).
Other reasons it may occur: an over-abundance of estrogen in your system (many foods or medications may heighten estrogen levels), taking medications that mimic estrogen, hormone replacement therapy, irregular periods, or if you are taking Tamoxifen (a breast cancer drug). As as side note, Tamoxifen has been shown to increase Endometriosis activity and it’s use may need to be re-evaluated if you are treating for breast cancer and have Endometriosis.
You may also be at a higher risk of developing endometrial hyperplasia if you’re: older than 35; are white; haven’t ever been pregnant; were an older age at menopause; had your first period at a younger age; have diabetes mellulits, PCOS, gallbladder disease, or a thyroid disease; are obese; smoke cigarettes; or have a family history of ovarian, color, or uterine cancer.
Symptoms of endometrial hyperplasia
Abnormal/lengthy/heavy bleeding or cycles shorter than every 21 days appear to be the most common symptoms of endometrial hyperplasia. Bleeding between periods or post-menopausal bleeding may also be a sign. An additional red flags may be pain during sex.
There are different stages of endometrial hyperplasia : simple, complex, simplex atypical, and complex atypical. The atypical categories mean that abnormal cells are now present, which may (or may not) develop into cancerous cells.
Simple (aka mild) hyperplasia carries the smallest risk of developing into cancer. Atypical hyperplasia carries the largest risk of cancer (8% if left untreated for simple atypical; 29% if left untreated for complex atypical).
Diagnosing endometrial hyperplasia
It’s the usual tests any EndoSister has undergone : transvaginal ultrasounds, biopsies, possibly a D&C, and possibly a hysterscope (a tiny lit-up tube going up your vagina to look inside your uterus).
There have been studies that discuss an increased rate of misdiagnoses for endometrial hyperplasia, though. It may be a common occurrence called disordered proliferative endometrium, which is normal for perimenopausal women (going through “the Change”). It may also be a multitude of other conditions, many of which I cannot pronounce nor care to type up. But you can read them in The Perimenopausal Blog entry here.
Treating endometrial hyperplasia
Many times, the additional of progestin to a medical regimen may successfully treat non-atypical endometrial hyperplasia. Having a D&C to scrape out the excess lining is also an accepted treatment for the non-atypical hyperplasia. A 2009 study showed that women with atypical hyperplasia who underwent a D&C had a lowered risk of cancer; however, 18% of those women still had invasive cancer cells at the time they had hysterectomies. A D&C isn’t a guaranteed fix for atypical endometrial hyperplasia.
Some physicians will recommend ablation (where the lining of the uterus is destroyed by heat or laser), but it may not be successful. And the scarring of the ablation procedure to the inside of the uterus may make it next to impossible to detect any remaining hyperplasia growth in the uterus.
If the diagnosis is for atypical hyperplasia (which again may develop into cancerous cells), a hysterectomy may be recommended to lessen the chances of developing uterine cancer. If this is a decision you choose, please tell your doctor NOT to use a morcellator, as it may spread cancerous cells within your abdominal cavity (more info here).
How to avoid endometrial hyperplasia
If you are post-menopausal and taking estrogen, talk to your doctor about also taking progestin or progesterone. If you’re still menstruating, talk to your doctor about a birth control pill that also contains progestin or progesterone; or taking them separately (as a pill, cream, or injection). Keep within your healthy body weight, eat a healthy diet, and exercise; being obese may raise the risk of endometrial cancer. Estrogen is stored in fatty tissues; the more fatty tissues you have, the more room you have to store excess estrogen.
Finally, go in for your regular examinations with your gynecologist, including a pelvic exam. They don’t call it preventative medicine for nothing!
Is there a link between Endo and endometrial hyperplasia?
Depends on your school of thought. If you’re one that believes Endometriosis is an estrogen-driven disease, then I would feel confident in theorizing that YES, there is a link. I believe it is an estrogen-driven illness. And endometrial hyperplasia is also an estrogen-dominant driven disease (too much estrogen; not enough progesterone). So I, in my laymen wisdom, would call that a link.
But do I think you’re at a higher risk of developing endometrial hyperplasia if you have Endometriosis? I truly don’t know. Any higher than women without Endometriosis? I have no idea. Dr. M. Agarwal summed it up best in his 2/4/2012 response to an inquiry on Healthcaremagic, “Whether a given patient with endometriosis will have hyperplasia cannot be told before hand. It is best to keep a visit a gynecologist who will keep track of endometrial thickness by USG and guide you accordingly.”
What I did find for certain is that there are women with Endometriosis and endometrial hyperplasia all over the place. Again, you are not alone in this:
LisaM posted in 4/2001 on Hystersisters. She has adenomyosis, Endometriosis, fibroids, and endometrial hyperplasia.
Gee posted in 2/2002 on Hystersisters. She had a hysterectomy due to atypical endometrial hyperplasia, adenomyosis, fibroids, ovarian cysts, and Endometriosis.
NYC_Grrl posted in 11/2006 on Hystersisters. She decided to have a hysterectomy because of her complex endometrial hyperplasia (not atypical), and was glad she did. While in surgery, the physician also found that she had severe Endometriosis and a cyst “the size of a tennis ball” on her ovary.
Spoonerbear posted in 9/2007 on MedHelp. She had a D&C and ablation due to her endometrial hyperplasia. She also has Stage IV Endometriosis.
Disneyheartlove posted in 2008 on MDJunction. Not only does she have Endometriosis and uterine polyps, but she also suffers from atypical endometrial hyperplasia.
Catwoman posted in 4/2010 on Valvereplacement. She received a hysterectomy at 34 due to her endometrial hyperplasia and also Endometriosis.
Bam1011 posted in 8/2010 on hystersisters. Not only does she have atypical endometrial hyperplasia, but also Endoemtriosis and ovarian cysts.
Tinkerbell_0609 posted in 1/2011 on IVF-Fertility. She has PCOS, endometrial hyperplasia, and Endometriosis.
MollyWiggles posted in 7/2012 in Hystersisters. She had her hysterectomy a month earlier due to atypical endometrial hyperplasia. She also has Endometriosis.
DJLadybug posted in 3/2013 in Hystersisters. Her physicians were pressing her for a hysterectomy due to her fibroids, Endometriosis, and possible endometrial hyperplasia.
Angiestaff posted in 9/2013 on Hystersisters. She has Endometriosis and endometrial hyperplasia.
Skaduce posted in 3/2014 on Hystersisters. She suffered from fibroids, infertility, complex endometrial hyperplasia, and Endometriosis.
Little Volcano posted in 8/2014 on Hystersisters. She has endometrial hyperplasia, polyps, cysts, and Endometriosis. She was waiting for further diagnostic tests to be done regarding her hyperplasia to make sure it’s not cancerous.
Jennn19 posted in 9/2014 on Hystersisters. She has Endometriosis, but many women in her family have uterine cancer, endometrial hyperplasia, enlarged uterus, fibroids, ovarian cysts, and Endometriosis.
Anabus48 posted in 11/2014 on Hystersisters. She has Endometriosis, Adenomyosis, and endometrial hyperplasia.
Pblonde posted in 1/2015 on Hystersisters. She had complex atypical endometrial hyperplasia and Endometriosis. Her physician recommended a hysterectomy, which she did, and is glad she did. The biopsy results came back with Stage 1 uterine cancer.
Guest posted in 2/2015 on SteadyHealth. She has endometrial hyperplasia, fibroids, PMS, PMDD, amenorehea, and Endometriosis.
Adamsmt posted in 9/2015 on Hystersisters. She was going in for a hysterectomy because of her endometrial hyperplasia, polyps, and possible Endometriosis.
Do you have Endometriosis and hyperplasia? Let us know! Don’t have Endometriosis, but have hyperplasia? Please, drop a comment below. Trying to greater understand both conditions.
Cancer Network – (1997; Article) Benign and Hyperplastic Endometrial Changes Associated with Tamoxifen Use
Cancer Network – (1995; Article) The Effect of Tamoxifen on the Endometrium
~ Again, I am a layman. I do not hold any college degrees, nor mastery of knowledge. Please take what I say with a grain of salt. If curious, do your own research 😉 Validate my writings. Or challenge them. And ALWAYS feel free to consult with your physician. Always. Yours ~ Lisa