It’s not that my Mirena is failing, according to the doctor. But, I am exhibiting symptoms that suggest the endometriosis has decided to party in my pelvis, once again.
Endometriosis is that spaz you didn’t invite to the party, of course, but who shows up anyway; the “friend” who always drinks too much and ends up dancing on the table, whilst stripping down to their knickers. It’s Naproxen and a heating pad to the rescue. And maybe, just maybe this time, endometriosis will take the hint, climb down off the table that is my uterus (just stay with me, people), and scram.
A girl can hope.
I’m scheduled for a pelvic scan Wednesday. Doctor suspects an ovarian cyst. It sure feels like crazed friend brought a date to the party. And he’s a wild type.
I’m not a partner, especially when it’s going down in my pelvis. That stuff needs to stop. Now.
I’m way behind on these, so please be patient as I catch up on “Ask Endochick” posts. As always, if you have something to contribute, leave a comment! You never know who you may help.
Brooke writes:
Does the CA-125 test check for endo? My friend said I can do that and not the surgery. I searched and see it also tests for cancer and endo?!? Will my doctor know which I have?
You are not the only one confused. While popular, the belief that the CA-125 blood test is a one-stop shop diagnostic tool (or a way to tell if you have a particular disease) for endometriosis is false. Although, women think a blood draw will give them a definitive “yes” or “no.”
Above all, CA-125 measures an inflammatory protein called glycoprotein. Cancer causes inflammation, so does endometriosis. Because the blood test measures all available tumor marker in your blood, it can’t tell endometriosis from cancer cells. Unless the marker counter is really high, in which case you’ll most likely be sent to a gynecological oncologist, you’ll be faced with treating symptoms or confirming with surgery.
A high CA-125 value can indicate you have endometriosis, assuming you’re having symptoms that suggest the disease, like pelvic pain, dysmenorrhea (painful periods) and/or menorrhaghia (heavy bleeding). And know a low result doesn’t put you in the clear, especially if you’re symptomatic. In the end, you and your doctor may decide a laparoscopy is the appropriate , plan of care.
Going through with the blood test is a personal decision. However, your insurance company may require it as part of the “exhaust all non-surgical intervention” phases before they will approve a diagnostic laparoscopy.
Back on March 3, 2009, to celebrate Endometriosis Awareness Month (#MarchBloggingMadnessForEndometriosisAwareness), I wrote a highly visited post – The Stages of Endometriosis. This post was the introduction to my 2009 Endometriosis Blogging campaign. Somehow, though, it became so much more to my readers.
Over the past 4 years that post has been seen by 59, 780 people (as of press time) and received 190 comments. (I will take this opportunity to note that I do not confirm all comments submitted to this blog. Hateful comments directed at another poster, a group of people, or religion, or myself are not posted.) One of these posters asked if I would be writing more on the topic of endometriosis staging in the near future. Seeing as March was around the corner, I couldn’t pass up the opportunity to expand the Stages of Endometriosis topic with a second post.
Enjoy, and thank you for your continued visits, e-mails and comments! (And for trudging through my non-endometriosis related health posts lately.) Happy Endometriosis Awareness Month! Together we are stronger!
Disclaimer:Please keep in mind, each person’s personal pain threshold and response to symptoms are different, regardless the disease staging. How you may feel with Stage I or Stage II may be the same as how someone else feel with Stage III or Stage IV. The “mild” implants and adhesions of Stage I and II may send you to countless doctor appointments, or your surgeon may coincidentally discover Stage IV severe — and symptom free — endometriosis while performing an exploratory laparoscopy for infertility. Each symptom section is meant for general knowledge, and is no way a reflection for how you may feel or how you should feel while in that particular stage of the disease. If you have questions regarding which stage you are in, or how you should fee, please consult your personal physician.
Stage I
Severity: Stage I is classified by a “dusting” of endometriosis that’s only on the pelvic organ surfaces. Endometrial implants may be found — in small amounts — on the outside of the uterus, the ovaries and fallopian tubes or the walls of the pelvic cavity (or cul-de-sac). Implants will be few in number, are small in size and are present on one ovary. Those on the pelvic walls or peritoneum will be less than 3 centimeters, and any on the ovary will always be under 1 centimeter in size. If adhesions are present, they are thin, transparent and few in quantity.
Diagnosing & Treatment: Unless you are experiencing unusually heavy menstruation (menorrhagia), unusually painful periods (dysmenorrhea) or pain during intercourse (dyspareunia), your doctor may take the 1) wait and see approach or 2) prescribe hormonal birth control.
Hormonal birth control is now available in varying doses and delivery methods, and has become a useful non-surgical tool if your doctor suspects endometriosis. Although, it is not fool-proof and in no way replaces a diagnostic laparoscopy.
Whether you’re on “the pill,” “the ring,” “the patch,” or “the shot,” hormonal birth controls are designed to produce the same biological result: to stop your menstrual cycle. This does not always equate to stopping your period. Some pills taken non-stop, meaning you skip the weekly dose of sugar pills and continue taking the hormonal pills for four months — like Seasonique — can stop your menstrual cycle.
The Mirena is a hormonal releasing intrauterine birth control device doctors use to halt the progression of endometriosis, as well. Unlike the pill, patch or ring, a trained doctor, midwife or nurse practitioner must insert Mirena. Because the cervix is dilated, Mirena is best used in women who have already had children, or at least been pregnant. Some women’s menstrual cycles are stopped with the Mirena, but without the menopausal side effects that come with medications like Lupron (which will be discussed later). It’s important to note, though, that not all women get this response. Others report heavy bleeding and cramping with Mirena. This can be so bad that the device is removed way before its 5 year expiration. Some women experience side effects that are worse than their endometriosis complaints.
According to the Cleveland Clinic, some 30 to 40% of the estimated 5.5 million women in North America who have endometriosis experience infertility. In the past, women with suspected endometriosis — especially in an early stage — were advised to have children. Women with the disease were encouraged to have children as early in the disease progression as possible. It was and still unknown exactly why infertility is so common among women with endometriosis. Current research is exploring possible endometriosis related causes that effect infertility, but science has yet to prove the myth that pregnant cures endometriosis. In fact, there is ample evidence — from the millions of women who still have endometriosis after delivering children — that pregnancy doesn’t cure the disease.
Remember, regardless the stage, there is no cure for endometriosis.
Stage II
Severity: Stage II is classified by the presence of deeper endometrial implants, along with the superficial implants seen with Stage I. Also present may be the thin, filmy adhesions on the ovaries, fallopian tubes cul-de-sac and uterus. Adhesions should be thin enough to measure under a 1/3 of an inch. If they are thicker, you may be progressing into Stage III moderate disease. Deep endometriosis implants will be over 3 centimeters in-depth, and contained to the peritoneum. There will be signs of superficial endometriosis on both ovaries, with implants being at least 1 centimeter. And there will be thin adhesions noted on one ovary.
Diagnosing & Treatment:
Because of Stage II is still considered a mild form of the disease, doctors may be hesitant to perform diagnostic laparoscopies in women who have not had children or may want children in the near future. This is because any pelvic or abdominal surgery can create adhesions, which can bind to the ovaries and may interfere with fertility.
Treatments are the same for Stage I and may include Non-Steroid Anti-Inflammatory medications, such as Ibuprofen. Using heat and ice during your menstrual cycle, or when cramping is present, can also relax the pelvic nerves and muscles. Some women have found pain relief through meditation and biofeedback, though this does not resolve issues with bleeding or halt implants growth.
During your cycle, your ovaries produce estrogen and progesterone. Endometrial implants feed off the estrogen, using this hormone to spread and grow in size. Hormonal treatments meant to halt the ovaries estrogen production are aimed at the later, more sever stages of endometriosis. Stage I and Stage II are considered mild enough — at least clinically — to be treated with surgical excision or removal of implants via laser, and hormonal birth control.
Some doctors will offer estrogen-suppressing medication to Stage II patients once all other medication and surgical options have failed; however, due to the cost insurance company’s bear, doctors must often prove the patient has exhausted all other options. Be warned: Some insurance must have documented proof of this. Your doctor’s testimony may not be enough to get that expensive monthly Lupron shot if you’re Stage II.
Stage III
Severity: There is a marked difference between Stage III and Stage II endometriosis. With this stage, there can be both superficial and deep implants in the peritoneum, along with a partial obliteration of the cul-de-sac. Often, there will be deep endometrial implants on one ovary. The presence of chocolate cysts are common with both this stage and Stage IV. Adhesions will vary between thin, filmy, dense and massive, and cover the ovary — or ovaries — and fallopian tubes.
Diagnosing & Treatment:
Often, but not always, by this stage, women seek medical help for their endometriosis symptoms. Pelvic pain, urinary urgency, sexual discomfort and/or excessive menstrual bleeding or bleeding in between periods causes concern. When this stage causes discomfort, it can be a mind-numbing, isolating pain that leaves the sufferer bed bound for days out of each month.
Evidence, such as extensive adhesions, chocolate cysts and an abnormally thickened endometrial layer may be seen on an ultrasound, MRI or CT scan, and can point your physician toward a diagnosis. While these signs are likely to be endometriosis, a diagnosis of endometriosis cannot be made without a diagnostic laparoscopy. A doctor should make visual, and preferably histological, confirmation of endometriosis through laparoscopy.
Stage IV
Severity:
Stage IV presents with a range of superficial and deep implants scattered across the peritoneum. The cul-de-sac is completely obliterated by this stage of the disease and at least one ovary will have deep implants that are at least 1 to 3 centimeters in width. At least one ovary and/or fallopian tube will be covered in a thick blanket of adhesions.
Diagnosing & Treatment:
Some women have Stage IV endometriosis and have absolutely no symptoms. Other only experience mild cramping or unusually heavy periods.
For women with surgically confirmed Stage III or IV endometriosis, though, doctor’s have medicinal and surgical options for treating the disease.
Remember, there is no cure for endometriosis. Any treatment or surgery’s goal is to temporarily alleviate pain or disease progression.
Medicinal Options Often Reserved for Stage III & IV:
Due to their long and short-term side effects and insurance costs, doctors are not likely to turn to these medications as a first line defense.
Zoladex – this medication comes in pellet form, which is then placed under your skin by injection. A nurse or physician must inject a new Zoladex pellet into your subcutaneous belly fat every 28 days.
Lupron – A common medication that’s available in month or three-month injections. You must see your physician for this shot, as well.
Synarel – Harder to control, but easier to stop if you experience unwanted side effects, Synarel is a twice daily nasal spray you self-administer.
Purpose & Side Effects:
GnRH agonists shut down estrogen production, which in turn, slows down the growth of endometriosis. Abruptly withdrawing estrogen mimics an immediate menopause — complete with hot flashes and mood swings. Unfortunately, your body’s estrogen levels don’t experience a gradual decline but a sudden plummet. This can negatively affect both your bone and mental health. As it stops estrogen, though, GnRH medications will stop your period. For women with excessive bleeding and pain, this may be a welcome change.
Be cautious: GnRH antagonists are not to be used for an extended period. And consider getting a second opinion if a doctor is a) too eager to prescribe GnRH medications (look for medication freebies littering the exam room that advertise a particular drug), b) doesn’t suggest trying other options first or c) hasn’t confirmed your diagnosis via a surgical laparoscopy.
Progestin Treatment:
Progestin mimics the progesterone your ovaries naturally create; fooling the body into thinking it is pregnant. For women with endometriosis, this is an ideal state (hence. why gynecologists once told women to get pregnant) because progesterone reduces the endometrial lining. Since it reduces the endometrial lining in the uterus, it also reduces any endometriosis implants contained in the pelvic cavity.
Progestin is available in several pills, by a 90-day Depo-Provera injection and the 5-year, slow releasing Mirena intrauterine device. Progestin treatments can stop your monthly period due to their ability to thin the endometrial lining and slow ovulation.
Surgical Options:
Besides laser or excision removal during a laparoscopy, some women opt for a hysterectomy to ease their endometriosis symptoms. Unfortunately, many women experience a resurgence of their disease despite the removal of their ovaries and uterus.
In order to starve endometrial implants, you must remove estrogen from the body for a minimum of 6 months. I’ve heard this includes even estrogen from plant and food sources, but this may be going to the extreme.
If you are close to menopause, or already entering into a natural menopause, then surgical menopause — which includes the abrupt removal of estrogen producing organs — may not be too severe. If, however, you are young and have a high pre-op estrogen level, this sudden drop can cause drastic mental and physical side effects.
Unlike GnRH antagonists, pills and UIDs, a hysterectomy is a surgical remedy that holds no guarantees and you cannot reverse. On that note, though, if you have severe bleeding that does not abate with other medical interventions, a hysterectomy may be your best bet. As always, a hysterectomy — or whether to take a pill or use a patch — is a purely personal decision. I do not endorse one treatment over the other. Speak with your doctor and make an informed decision concerning your personal medical history, diagnosis, estimated progression and personal preference.
Cierra asked: I’ve had surgery twice for endo. One in May of 2011 (laparoscopic) and one in June of 2012 (robotic). My dr suggested trying the Mirena since the birth control pills weren’t doing their job. At this point I’m willing to try anything. I had the Mirena inserted last Wednesday, which by the way was the single handed most painful thing I’ve ever been through. Thankfully, my sister told me to bring a driver, or else I would have curled up in my car and cried for hours. Unfortunately, I’m regretting the decision. I’m still uncomfortable. I can still tell its there. I’m still having pain, it seven making my legs hurt now. The dr’s keep telling me to give it time, but I’m miserable and I am considering getting it taken out. Any other treatments options suggested?
Cierra, your experience with Mirena is far from the norm. Actually, believe it or not, this sounds familiar. See posts: Mirena Removal Time and Mirena Insertion/Optic Neuritis Saga for reference. My very first Mirena insertion was a breeze. So coming into this last experience — I was gobsmacked!
Having said that, the ordeal of having the thing inserted (two visits and the pain of a period in between) deterred me from having it yanked out. I waited the pain out (which for me was a 5-7 on most days). Of course (and this is important), we all deal with pain differently. My pain threshold may be higher than yours. My 5 may be your 7.
You also mention it was inserted last Wednesday. It took a solid 1-2 months for my uterus to calm down. It was a gradual happening. With time, the pain subsided. I spotted for a few hours after the initial insertion, but have had nothing since (similar to the first time). But the discomfort and cramping was there for 1-2 months in some form.
The insertion felt like labor pains. And then while eating lunch afterward, I doubled over needing medication. But these lessened considerably within a few hours with medication, and were much better the next day. I used heat and meditation (my mainstays).
Consider a warm compress (heating pad on low or medium), warm bath, some over-the-counter pain reliever and keeping your bowels regular. The less clutter your have in your abdominal cavity to irritate your pelvic organs during this time, the better.
You may be over the worst by the time you read this. Hopefully you are!
If you have it removed, your doctor may suggest suppressing your cycles with a Gonadotropin-releasing hormone agonist (GnRH-a) medication. These act to limit or stop the production of estrogen, which is the hormone endometrial implants use as fuel.
The three GnRH-a medications you’ll encounter are: Lupron Depot (injected), Zoladex (injected pellet) and Synarel (nasal spray).
GnRH-a’s work by reducing blood estrogen levels to a post-menopausal level. This means you will experience the side effects of menopause. Unless you’re close to a natural menopause age (where your estrogen is already in natural decline), this can be a shock. Some women ride through six month of GnRH-a therapy with no problem. Others are completely miserable and even report lasting side effects. There are web pages of women taking litigation against drug makers. If you go down this path, I would recommend you do some research and make an informed decision.
Your doctor may also suggest another course of birth control, too. Have you tried the continuous pill? Taking a pill of four months straight? Or taking a stronger prescription? Don’t be surprised if your doctor throws this option at you. If you’re unwilling to go down this road again and it’s the only option given, it may be time to get a second opinion.
Your doctor — when all treatment options have been exhausted — may suggest hysterectomy. This is a personal choice that should never be entered into lightly. A hysterectomy is an irreversible surgery. Depending on your age and children, this may not even be an option you want to discuss. Hysterectomy is not a cure for endometriosis, yet many doctors continue to offer it as band-aid therapy. See: Endometriosis/HRT after Hysterectomy for Endo
I know Jeanne over at Chronichealing.com has had great success with acupuncture. She uses it to manage different chronic conditions, not just endometriosis. If you’re willing to give that a try, it may be worth a shot. Head over to her blog (it’s well written and informative!) and search for “acupuncture.”
It is easier to find men who will volunteer to die, than to find those who are willing to endure pain with patience. Julius Caesar
It’s late. Again.
I find myself in a familiar position – in pain. Tired. Unable to sleep because of the discomfort.
It’s been 4 days, roughly. Give or take an hour or two.
It started with bloating. Not mild bloating – the vague feeling that your pants are a bit too snug, or where you find yourself pondering, “what did I eat?” Bloating. Serious, granny tummy, doubled in size, “no ma’am, I’m not 5 months pregnant” bloating. And it’s vile.
My work trousersy were snug so tight I couldn’t snap the three clasps, let alone zip the zipper. This was on Monday.
Meticulously, I watched what I ate. Nothing offensive – nothing that could bite me back later – entered my mouth. I swear!
Monday’s bloat turned into Pajama Bottom Tuesday. If it had a zipper, button, snap or clasp, it didn’t budge past my thighs.
Then there was pain.
Tuesday night I climbed into bed, a nasty bloat hanging in my tummy and now pelvic pain. As I pulled the covers to my chin, I was seized with an agonizingly sharp pain that ripped from the front of my pelvis to the sacrum. And it kept coming in waves, the after shocks leaving a mild ache in the left side. They felt like labor pains.
Pain the next day – mild.
Paint the next night – an encore of the Searing Pelvic Knife Dance featuring Madam Ovary and the” I need an Epidural band”.
It’s been a few days/night now. Last night, I was desperate. From the Chemist’s I snatched a bottle of magnesium citrate and chugged it.
Even after the vile, salty concoction worked, I am in pain. I am uncomfortable. My stomach is still BLOATED.
And now… there is a central hardness near my belly button.
So again, tonight, I cannot sleep. I lay here, with the laptop light comforting me. It provides very little, though.
I’m playing the Pain Game. And I seriously want to win it and NEVER play again.
There are but two days left in March, but the campaign to increase awareness and urge research into cause and elimination of endometriosis does not need to end. Our voices remain strong as we continue to band together – on-line and off. Regardless the media carrying out message, it is still being disseminated to the many millions of women world-wide who need to hear it.
With that being said, I am making this post (which, depending on my schedule could very well be the last one for March) pack a mighty punch. It will be fact ridden, and I promise you, validate what many women think about hysterectomy and failed endometriosis treatments.
The subject being discussed is the quality of life and sexual function in women post-hysterectomy. This is a very delicate subject, and for some, may be upsetting. If this is the case for you, you want to skip this article. On the other hand, if you have had a hysterectomy and are experiencing pain and depression and obtaining inadequate support from your health care provider, this article may give you the information you need to sway their opinion.
One night I was doing research and found the article I will discuss below. It caught my attention because a 35 year-old woman had e-mailed me the day before. She had chronic pelvic pain and decided on a hysterectomy. It was always assumed she had endometriosis, and adhesions were found, but no implants. 7 months after lap, she decided to have a hysterectomy. Her pain had caused her to go on medical leave from her job and she had had enough! She then found my blog 3 years post-op because the pain had never stopped. She had been tossed from doctor to doctor with no answers.
In a 2004 study published in the October issue of The American College of Obstetrician and Gynecologists, Dr. Katherine E. Harman, Cindy Ma, Dr. Georgine M. Lamvu, Patricia W. Langenberg, Dr. John F. Steege, and Kristen H. Kjerulff, the researchers state, “In the United States, more than 60,000 hysterectomies are performed each year; of these, 10% of women have pelvic pain as their primary preoperative indication for the surgery” and that of these 10% “22% of patients with pelvic pain before hysterectomy continue to have pain after surgery”.
I don’t find these statistics too surprising. I have heard from countless women – on a global scale – reporting the same. They had hysterectomy for unrelenting pelvic pain. Their endometriosis was being controlled. A few were just tired of living with ovarian cysts. But after the surgery, and the recovery, the pain remained. It returned. It was… there.
This study aimed to take a population sample of women experiencing pain and depression after hysterectomy. 1,299 women were included – women who had hysterectomy for pain resulting from benign conditions. I stress benign because one could expect depression in women having a hysterectomy for malignant conditions – such as cancer.
They measured these women on functionality, both at 6 and 24 months post-op. Measurements evaluated the “presence of pain, health-related quality of life, and sexual function”. Three groups of women were studied: (a) women with pelvic pain and depression, (b) depression alone, and (c) just pelvic pain.
At 24 months post-op, the women with preoperative pelvic pain and depression had “3 to 5 times the oddd of continued impairment of quality of life”.
What is not discussed in this article is the use of hormone replacement therapy during the study period. The participants were 18 years of age or older.
The authors note, “Gynecologic surgeons are appropriately concerned that patients who are struggling with depression and/or pain before surgery be at especially high risk for poor operative outcomes such as slow recovery, persistent pain, or developing new symptoms.” They conclude that performing a hysterectomy on women with pelvic pain and depression could actually do more harm than good.
From what I see, there has yet to be a long-term follow-up study concerning post-op hysterectomy health and function.
This study does focus on women who had depression and pelvic pain before surgery. And by doing so, may contain a bias towards the belief that women with depression have lower success rates for treatment. But one should ask, how many of the women’s depression was a result of the pelvic pain? This needs to be studied and quantified.
To me, this study read more like evidence to support the attitude some clinicians have with chronic pain patients – just pass them off.
How does this article relate to “why we need awareness”? If you’ve stuck to this point, you deserve an answer. This article reinforces the depressed pelvic pain stereotype. It reinforces attitude that women with preoperative depression are more likely to be unresponsive or under-responsive to the surgical therapy. Having these prejudices and stereotypes circulating can lead to increased mental anguish.
I am not condoning hysterectomy for endometriosis in this post. That is something for the patient and her physician to discuss. I am not a doctor. I do not have the ability to condone hysterectomy; it is merely my personal belief that not all pelvic pain should result in hysterectomy.
Three years ago I sought the advice of a trusted, and seemingly competent, gynecologist. The pain was well over 20 on a 10-point scale, and like many women I’ve heard from over the years, I had “given up”. I was done! I wanted this busted uterus gone from my body. I wanted those blasted, estrogen producing ovaries out of my body. And I wanted, more than anything in the world, for this endometriosis to stop cursing me with monthly agony. I just wanted to be free from being chronically ill.
It was at the consultation when my physician’s nurse practitioner closed the door gently behind her and asked me, “is this really what you want?”
Of course it was! I begged for this! I pleaded and screamed and kicked my feet until I found a gynecologist who would do this surgery on someone under 40. Was this lady daft?
She must have taken my look of “wtf?!?” to mean I was unsure. Either that, or she just didn’t care. She was looking out for her patient and holding true to the first tenet of medicine -“first, do no harm”. I remember her heavy sigh as she took my hand in hers and said, “you should not get this hysterectomy.”
Who was she?!?! She had no clue about my pain. She had no clue how this affected my life. Then she said, “I have been where you are now and I have seen the other side. It is not one to walk down lightly.”
She proceeded to recount her experience with endometriosis. Her tale was strikingly similar to my own, and to many other women with the disease. Years of heavy, painful periods. Days spent sitting out of life, clinging to heating pads and pain reliever bottles. Treatments tried and failed. Being a spectator in ones own life.
She then told me that having a hysterectomy was akin to buying another used car when your previous junker has clunked out. With your current car, you know what you’re getting. You learn to know its noises, and how to get it started even when it makes that “put-put put ” sound or smoke bellows out the exhaust pipe. But when you trade it in – for a hysterectomy – there can come all these new problems – problems you couldn’t conceive of. And there is no Lemon Law. They can’t graft back in your ovaries – your uterus. There is no turning back. And you could awaken in that recovery room a miserable mess. And she described the sudden loss of estrogen – like going 80 and slamming on the brakes.
And hormone replacement therapy increases the risk for heart disease and cancers. And one must weight the decision to have a hysterectomy with the possibility of life without estrogen.
I left her office that day confused. I took a long, hard look into my life with endometriosis. A very long look. And I came to the realization that my endometriosis – much like an old car – is predictable. I’ve lived with it for so long I know how it acts, when it acts, and how to mask it. I know what works, what doesn’t, and what my body will not handle. And I made the personal decision not to cross into the unknown frontier. No thank you Captain Kirk, but I will not be going boldly where others have gone before.
And I stress, this is a personal decision. Some cases may warrant a hysterectomy. This is something for you and your physician to work through.
But we need more awareness as to the myriad treatments available. I was told Nuvaring failed, BCP failed, the shot failed… time for surgery. They gave up and I almost gave up on my self.
March 2009 – Jeanne from Chronic Healing and myself banded together to increase endometriosis awareness. My contribution that month included posts such as:
And Jeanne created a petition to increase awareness that continues to be signed. If you have not, please do sign this petition. If you are a blogger, please consider adding the petition to your site. Please spread of the news of this post, all endometriosis awareness posts, and the petition through Facebook and Twitter.
Why do I point out what we did 2 years ago?
Despite our petitions and posts, incorrect information about how endometriosis is diagnosed and treated continue to be disseminated in the media. An appallingly dismal amount of research is being done into the cause of this disease. And women continue to be misdiagnosed by their doctors.
Search terms such as “endometriosis suicide” increase in frequency with little recognition from the health care establishment regarding the impact chronic pain can have on an individual. Chronic pain patients presenting with depression are sometimes treated for the depression and not the pain. This can create a vicious cycle in which the pain never ceases, goes severely under-treated, and the depression fails to respond to treatment and can worsen. This is when search terms linking endometriosis and suicide occur.
I should not have to use one hand, let alone two, to count how many people reach my blog every month using the search term “endometriosis suicide”. I should not have to read heartbreaking e-mails from women who are at the breaking point. Women who are turned away because of their pain, because of their need for answers. These women are fed up and tired of the “take this pill, give it 6 months, and call me if you’re still in pain” regimen. These women are tired of their bodies being cut on and disfigured because there is no final solution for this disease.
Their hearts break because of infertility. Their bank accounts run negative because of costly treatments and surgeries. There are stories of lost wages and termination because of excess time off.
But above all, the most common complaint I have found… “no one understands what I’m going through”.
All of that – that is why we need awareness. And we need it now more than ever.
This is the second post in my Endometriosis Awareness Month series: Why we need awareness. Unlike the previous post which focused on an account past to me from the patient, this post is personal. This post discusses my mother and her own battle with endometriosis.
There was never pain, she explains, just heavy bleeding. This bleeding caused hourly – if not more – sanitary napkin changes. This bleeding would last 7-10 days per month, cause dizzying anemia, and disrupted her life. With 3 young children, she explains, being preoccupied with hourly bathroom trips for over a week was never convenient.
It was during the birth of her second child – via cesarean section – that she diagnosed with Stage IV endometriosis. She had her tubes tied – the doctors claimed she couldn’t get pregnant again with Stage IV endometriosis, but my mother didn’t want to take chances. Her bleeding failed to improve. Her body refused hormonal treatments. The Pill gave her migraines. Norplant was not covered by insurance. Surgery was not an option because she was the sole breadwinner. She could not miss 6 weeks of work for an open laparotomy (this was before laparoscopy began being used).
A few miserable years later, she managed to get pregnant despite having her tubes tied. Apparently, she says, the endometriosis helped regrow one of her tubes. No one told her this could happen until she presented with-child.
After a repeat cesarean, it was discovered that her endometriosis had worsened and covered most of pelvic organs, including the cul-de-sac, had infiltrated to her bladder and covered a good portion of intestines. During surgery, her bleeding became unmanageable due to her “boggy uterus” (post-pathology report, it was discovered that she had adenomyosis as well). The doctors removed her uterus, right ovary and tube leaving the left intact.
While the bleeding stopped, she began getting abdominal pain. This pain, as she described it, was like shooting knives. She heard every excuse: “gas” to “adhesions” to even “it’s your nerves”. Finally, one day while at work, the pain became unbearable. Her blood pressure dropped and she fell unconscious. During exploratory surgery, it was discovered that the remaining ovary caused the endometriosis to regrow. That ovary was removed. My mother almost bled to death internally.
A few years ago, I was considering a hysterectomy. I was tired of the pain. I asked my mother, “Mom, do you regret having the hysterectomy?” She answered: “If I knew how it would affect my life, I would have reconsidered.”
Since having the hysterectomy, my mother’s life has flipped on itself. She no longer works outside the home. She experienced instant menopause at 32, when the final ovary was removed. She went through the hot sweats and mood swings. When time had passed and hormone replacement therapy would have been an option, she could not take it due to family history of heart disease. She was stuck in a very hard place.
Now, many years later, she suffers from anxiety, depression, fibromyalgia type pain, arthritis, headaches, dry skin and thinning hair, deepened voice, facial hair, insomnia (she has become dependant on Tylenol PM). The list, as she says, is just too long to type up. The most interesting symptom to note, though, is abdominal pain.
She notes, as well as I do, that sometimes hysterectomy is a must. In her case, the bleeding could not be contained. The surgery had to occur. Women with pelvic cancers – uterine, ovarian, and cervical – should follow their physician’s advice. But for everyone else, I will echo my own mother’s words (as well as my own physician’s), a hysterectomy may solve one problem but it’s going to open new doors. We don’t know what’s behind those doors, and it’s different for every woman. If you are considering a hysterectomy, please do the research. PLEASE ASK QUESTIONS. Second opinions are vital when considering life changing surgical procedures. DON’T HESITATE TO ASK FOR ONE!!!
Reading my bio, you will see that I am working on a M.S. in Patient Safety. Why? Endometriosis patients, like others with chronic illnesses, often have multiple physicians caring for them; are likely to be on more than one medication; and are at an increased risk of developing depression. Again, this is not just seen with endometriosis patients but with any chronic illness or disease.
As per graduate school requirement, I am conducting research on endometriosis patients and their relationship with physicians. Your name, address, phone number, and other personal data is not needed. All I will initially need is your current age, age of diagnosis, and date of your diagnostic laparoscopy (or other pelvic surgery where endometriosis was initially discovered). I will then send qualified women a questionnaire to fill out, at their convenience, and return to me via e-mail.
Patients of any age, socioeconomic background, ethnicity, and race may participate.
Patients must be diagnosed through laparoscopy or other pelvic surgery where an internal view of the pelvic and abdominal organs were examined, and a biopsy was taken which confirmed endometriosis.
Exact dates of surgery are not needed – just the month and year (if you do not know the month, just the year will suffice).
If interested, please e-mail “endochick 80@gmail.com” (remove the space between endochick and 80 when e-mailing). Put RESEARCH in the subject line.
Thank you. Hopefully together we can improve the patient-physician relationship, increase communication, and reduce errors that occur with endometriosis patients.
Endometriosis: the silent life sentence 