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.
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 didhave 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.
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.
The following link will take you to a short article from the Birmingham Mail regarding Endometriosis UK’s charity fundraiser, held to mark the ending of Endometriosis Awareness Month.
I remember in 2009, Jeanne from Chronichealing.com and myself were plastered on Twitter (#marchbloggingmadnessforendometriosisawareness) (can that win a prize for longest Hashtag, or what?). We were posting every day. Retweeting and being retweeted by the minute. Things looked promising for our quest to bring more awareness to this silent disease.
And despite issues that forced us from using the Twitter medium, we really made some headway. 2009 was brilliant in that respect. Globally, endometriosis was getting a voice. And for those us of who have it, it no longer was being referred to as a mere painful time of the month issue.
Since 2009, our voices are still being heard. Various media outlets have heard the call. They are doing stories and writing articles. But we still have a hurdle to jump over. Don’t we?
I am still finding the occurrence of misinformation popping up in my Google feed. Women still leave messages on this blog on how they were misdiagnosed, under-treated, or ignored by the healthcare establishment. There are still uniformed or misinformed spouses, partners, co-workers, bosses, friends.
In a time where we can connect globally via e-mail, Facebook. Twitter, Google+, blogging, and chat rooms, there are still women struggling alone in this. There are still loved ones clueless to help.
So I am leaving Endometriosis Awareness Month 2012 with a question, a question that will be addressed in my book.
Below is a current, as of 5 minutes ago, list from clinicaltrials.gov. I searched “endometriosis” to find a listing of current open studies focusing on endometriosis. There is only one current, active trial examining the immunology of endometriosis. The majority of the studies below focus on medicinal and surgical treatment options and are likely sponsored by drug companies.
Women in the Reproductive Age Group; Undergoing Laparoscopy for Pelvic Pain and/or Infertility; Not Currently Receiving Hormonal Treatment for at Least 3 Months Prior to Laparoscopy.
Behavioral: patient education; Behavioral: professional audit and feedback (guideline adherence); Behavioral: professional education (communication/shared decision making); Other: information tools
As many of you may be aware, March is Endometriosis Awareness month. In an effort to increase education and awareness, especially of correct treatment and surgical options, and in an effort to put a positive light on Endometriosis in the media, some of us health bloggers will be encouraging you to write to local, state and national media. Jeanne from Jeanne’s Endo Blog needs to be commended for taking the innitiative to concieve of such a campaign. Thank you, Jeanne.
I’ve included an example of a recent letter I composed for Mariela Azcuy, the Senior Associate Direct of PR for the Meridith Corporation. It is best, when addressing a business orginazation, to stick to a business format in your correspondence. And try to keep it concise. Get your necessary facts in, but don’t make it boring. A boring letter will end up in the trash. You need to make the reader aware of the seriousness of your cause without over dramatizing it. And struggle as you may, it may not be the best idea to include long, drawn out, personal stories in an awareness letter. An awareness letter needs to focus on:
1) Your cause
2) Why this needs coverage
3) Relevant facts and figures pertaining to your cause
Journalists especially, and other media personel, are busy people. If you send them a multi-page document or email, they are likely to skim over it and toss it. Send them a nice, concise 1 page (2 pages at most) letter with facts and figures, and you’ll more than likely get a call back. Why? It’s easy to pull even a small piece from a 1-2 page letter if there are figures they can quote. With one simple 10-15 minute phone call to the letter’s author, they have an easy write up for their paper or magazine with little effort. I’ve done it before (once with a pamphlet from a city council meeting!).
As promised, here is the example of my letter to Mariala Azcuy. Please remember that my work on this blog is copyrighted. You may use this example as a reference, and I hope it inspires you.
Endometriosis: the silent life sentence 