Someone very close to me has been bravely battling leukemia for over a year. They did chemo and the cancer went into a false remission… for all of three months! They turned to an experimental drug protocol, and finally radiation. But now they’ve stopped all treatments.
There are so many emotions… I can’t even begin to form them into complete, coherent sentences. Just…
Leukemia Sucks
Cancer Sucks
I get comments addressing the “writers” or “you guys,” or “this forum,” and I have to keep repeating myself… I’m a “me.” This blog has one author, one moderator. Perhaps I’m being a tad overly sensitive, but this is my blog. These thought and feelings and experiences are mine, and I own them.
And now I will blame hormones for this rant and move on.
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March has nearly slipped the coop. Where did it go? I had to post at least one more time before month’s end, and I want it to be whimsical. After all, if you cannot laugh with this disease, then it is bound to drive you insane.
I once knew a crotchety old man with a bum knee. He swam. He golfed. He took nightly walks around the block. He was just a bit slow, smelled of ointment and rubbed that knee a lot. Peculiarly, he also called it Sally.
“Sally’s gone arthritic.” “Sally’s locked up.” “Hold up, Sally needs rubbin’.”
You get the idea… everyone, from the postman to the corner grocer asked after Sally.
I remembered that man and his silly knee this morning. And it got me thinking…
Have you noticed there is a name for your period? Aunt Flo. I get the context, but Flo is a real female name. Could you imagine naming your endometriosis? Or does yours already have one? Is it male or female?
I’m not sure what I would name mine… or if I even would. Bob? Jan?
Endometriosis doesn’t have an adorable face just screaming its name. Its an insidious, evil; a poisonous alien and your body is nothing but the host.
There. I found my name. Alien.
Disclaimer: This post discusses infertility.
I’m not ignoring people. I’m not!
WordPress is letting me approve comments but not reply to them. And I can’t figure out what gives!
For a long time the error was just occurring while I updated from my phone. Now it’s happening on the computer platform, as well.
I’m hoping to get this remedied soon as I have many comments to reply to. Please hang in there and know I am not ignoring you.
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This is the second post I’ve written today. Earlier, I typed out a post about endometriosis awareness events, and how this month especially, they frequently occur in medical practices or companies with a partial stake in endometriosis. Perhaps that post will come tomorrow as I feel it could use some polishing.
This Is How It Starts…
The inspiration for this post — ” Mirena® – Help or a Hormonal Mess? — is thanks to a portion of my recent hormonal blood work arriving in my in-box. All blood work ordered through my endocrinologist, neurologist and general practitioner’s offices become available to me via e-mail once the lab clears them. Due to some recent symptoms and long term endocrine issues I will not bore you all with, my endocrinologist felt it worth running a full hormonal panel. Honestly, when all was said and done, I don’t think there’s a hormone she didn’t check!
The problem is — and we discussed this… at length — the Mirena® interferes with hormonal testing. Considerably, in fact.
For those familiar with my Mirena® journey, this part will be old news and I’m sorry. Bear with me for a moment.
For those popping in thanks to a search term (Hello! Thanks for stopping by!), I had my first Mirena® IUD inserted in April of 2007. I was terrified. After reading Internet horror stories, I had psyched myself into thinking I would pass out, bleed excessively, have a ruptured uterus… whatever could happen, it would pretty much happen. So I reached for two Tylenol #3 with codeine (a prescription pain medication), which effectively numbed any pain I may have experienced during the insertion. I went home, had a few cramps and slept the rest of the afternoon. After some faint spotting and mild cramping, my periods stopped. I only had spotting again after my laparoscopy in 2008. And that was only a few times (due to the doctor moving my uterus to remove adhesions).
It wasn’t all smooth sailing along the way. I had moments where I wondered if the Mirena was causing moodiness and cramping. It did increase my tendency to create ovarian cysts, which can become rather painful. The reason for my 2008 laparoscopy, for example, was due to a cyst that developed on an ovary. We watched it through ultrasound as it sat on my ovary for nearly a year. When it developed into a thick walled septated cyst — the kind that can develop into cancer — it was lap time. Naturally, my doctor was eager to get it out.
Shhh.. the “H” Word… and a New Mirena Comes to the Rescue
Because of my history and my pain level, I felt ready for a hysterectomy. I was already living without a period (this was all menopause was, right?!?! Ha!). What’s the big deal. Thankfully that gynecologist’s office had a nurse practitioner who had had endometriosis and had a hysterectomy at 30. There I sat, a naive but in pain. She convinced me that the better option was to stick it out with Mirena®, or try another reversible endometriosis treatment. And now I am glad I took her advice.
But that brings me to 2013. I am on my second Mirena®.
The second insertion did not go so smoothly.
As I was saying, my endocrinologist decided to run some hormone panels (read: every single hormone panel know to man). We knew that because the Mirena® causes your period to stop — or amenorrhea — many of the lab values could be off. Hormones like follicle stimulating hormone, estrogen and testosterone — to name a few — fluctuate depending on where you are in your cycle. That’s right. They rise and fall in the beginning, middle and end, and differences can signal problems —if you know where you are in your cycle. How am I supposed to know that when a) I don’t have a period, and b) when I did have a period, my cycles were anovulatory. Because I didn’t always ovulate, my periods were irregular, always heavy and lasted — on average — 2-3 days.
So Does the Mirena® Mess With Hormones?
Unlike it’s non-hormone releasing cousin IUD, Mirena® releases synthetic progestogen — in the form of levonorgestrel — into the uterus. The manufacturer, Bayer Cross ®, stands firm that only a little bit of the levonorgestrel gets into the blood stream.
Yet,there is an extensive hormone related list on their website of possible side effects. Bayer Cross ® Bayer insists that the following are experienced by 5% under:
Vaginal discharge
• Breast pain or tenderness
• Nausea
• Nervousness
• Inflammation of cervix, vulva or vagina
• Pelvic pain during your period
• Back pain
• Weight increase
• Decreased sex drive
• High blood pressure
• Pain during intercourse
• Anemia
• Unusual hair growth or loss
• Skin irritations (such as hives, rash, eczema or itching)
• Feeling bloated
• Swelling of hands and/or feet
• Expulsion
I have daily search strings for “mirena and endometriosis,” “mirena headache,” “mirena and migraine,” mirena weight gain,” “mirena and acne,” “mirena depression,” and the list goes on. These must be from the IUD’s hormonal component. You do not see this with the non-hormonal IUD.
I do not have a period, though. And as for cysts… while they do hurt, I have learned to live with them. As a wise doctor once told me, “That’s terrible saying you’ve learned to live with the pain.” I told him I didn’t have a choice. I had a life to live and didn’t have time to wait for him to fix me.
So, will I be getting it out? No. As long as it’s keeping my monthly hell away, it’s staying put. Of course, unless my endocrinologist calls Monday morning and says those test numbers are telling her a different story. But then again… like I said… that little thing in my uterus is making it hard for us to know when to test!
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.
Estrogen Suppressing Gonadotropin-Releasing Hormone (GnRH) Agonists:
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.
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Tagged "the patch", "the pill", "the ring", adhesions endometriosis, birth control pills, cul-de-sac endometriosis, dypareunia, dysmennorhea, dysmenorrhea, Endochick, endometrial implants, endometriosis, endometriosis awareness, endometriosis implants, endometriosis infertility, endometriosis stage four, endometriosis stage one, endometriosis stage three, endometriosis stage two, excision surgery, gun powder implants, Hysterectomy, laparoscopy, Lupron, March Endometriosis awareness month, menhorrhagia, Mirena, pelvic pain, peritoneum endometriosis, Seasonique, Stage 1 Endometriosis, stage 2 endometriosis, stage 3 endometriosis, stage 4 endometriosis, stage I endometriosis, Stage II endometriosis, stage III endometriosis, Stage IV endometriosis, Stages of Endometriosis, together we are stronger
Steve asked: How can I best support my spouse who has endometriosis?
First, let me thank you, Steve, for an excellent question; and secondly, for being so patient with me. Steve is a regular reader. He e-mailed me with this question, and it’s sat my in box collecting virtual dust since. Steve, it’s been my hectic schedule keeping this post at bay, not your question.
I asked if any readers could lend some advice.. So before I get to my answer, Margaret has this to share (Thanks!!):
Steve could get a copy of Dr Andrew Cook’s book : Stop Endometriosis and Pelvic Pain, what every woman and her Doctor need to know …. It has much information on supporting a patient with Endo. Even some comments from our patient’s spouses.
Now, to the heart of the matter…
1) The #1 thing you can do for your spouse/significant other who has endometriosis is just be there. Stand by her side through every cramp and mood swing and hormonal treatment. Don’t trade her in for an unbroken, slightly newer model once the going gets tough; she’s not a used car.If she can’t have children, you as a couple can’t have children. Don’t ever blame her for biological war that’s being waged inside her body; believe me, we get drafted into a battle zone.
After running this blog since 2006 and interviewing women whose lives have been devastated by this disease, there are two groups. One group has supporting partners, the other doesn’t. I have received e-mails and comments, and conducted one-on-one interviews in which women have related how their significant others have left them for a “healthy” girl, or broke up in the pre-op suite(!), or got another woman pregnant and placed the blame on his wife’s endometriosis… and it can go on.
I don’t hear those stories from supportive, present significant others. Instead, women are not afraid to share their symptoms, their pain tolerance, reactions/medication side effects and feelings. For those with chronic conditions, communication in relationship is important; but for women with endometriosis, and the significant others who love and care for them, it is vital.
2) Familiarize yourself with The Joint Commission’s “Speak Up!”™ steps for patient safety and empowerment. Then have your loved one read them. See my post on this subject: “Speak Up!”™https://endochick.wordpress.com/2010/01/14/speak-up/
3) Encourage your significant other to do for her self. Yes, there will be certain times of the month, or after surgery – or even if she’s reacting badly to a medication, when she’ll need to lean on you. But too much of a good thing here can breed resentment. Again, be honest about your feelings and have an open dialogue – even if the situation cannot be changed. And never assume because she relies on you, perhaps more than you normal, that her pain is not. Perhaps a visit to a better doctor is in order because her pain or symptoms may not be adequately controlled.
4) Take care of yourself. Take some time each day for you. Feed your body nutritious food. And keep your stress down. Watch for signs of depression and ill health, and do not ignore them.
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Tagged ask endochick, chronic illness, communication, Endochick, endometriosis, Speak Up, spouse care, The Joint Commission
At the risk of rehashing a long story…
The side/spleen pain my doctor swore was a broken rib is rib inflammation from a 3 day course of IV Solumedrol I had this summer (or so we assume). Since that is a steroid, and steroids usually treat inflammation… yeah, I am lost, too.
Nevertheless, many months later I find myself being treated with Mobic (since a corrective steroid shot wouldn’t be advised here) – an anti-inflammatory. Makes sense. The prescribing doctor asked me if I could take Ibuprofen, which I can handle in small doses. This stuff must be Ibuprofen’s big daddy! After four days on it, I’m having major auras and I’m terrified I’ll have a full blown seizure.
On a brighter note, I’m working on a new “Ask Endochick” post from a regular reader. Steve needs advice about supporting a loved one/spouse with endometriosis. While I compile my post, if any readers have suggestions, leave them here and I’ll include them!
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Endometriosis: The Silent Life Sentence
Endometriosis: the silent life sentence 