The Stages of Endometriosis: Part Two

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:

• 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.