Tag Archives: Lupron

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

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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.

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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

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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.

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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

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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.

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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 

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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.

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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.  

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Swallow your GnRH treatment?

Some with endometriosis may be prescribed gonadotropin releasing hormone’s (GnRH) to combat their disease growth. While there is literature touting the benefits and negatives of GnRH agonist therapy, as well as a plethora of personal accounts to be found on-line as to both, this post will not discuss either.

There has always been a few major drawbacks to GnRH agonist therapy (and not even taking into account side effects). GnRH agonist’s are often very expensive and require either hefty out-of-pocket expenses, or waiting for insurance approvals. I’ve heard of one popular GnRH, Lupron, costing one woman $1,000 a shot without insurance. Considering this medication is taken either at three-month intervals for six months at a time, this would have cost her $2,000. GnRH agonist’s are also subcutaneously delivered medications, which means given in a shot form. People may have a fear of needles. Also, because of the delivery system, it can only be administered by a clinician (unless prescribed in the daily form for fertility treatment).

So, how about a pill form GnRH? Avoid the needle and the trip to the doctor every 1-3 months for your injection. Sound good? It sounds rather swell to Soligenix, the makers of a Lipid Polymer Micelle (LPM™). This new technology allows for GnRH agonist medications like Soligenixs’ Leuprolide to be delivered orally.  According to the press release on their website:

Soligenix has received a European patent which addresses its Lipid Polymer Micelle (LPM™) technology for the improved oral delivery of drugs. The issued European patent, EP 1460992, entitled “Stabilized Reverse Micelle Compositions and Uses Thereof” covers lipid structures (reverse micelles) that promote the intestinal absorption of peptides and other sensitive drugs that cannot otherwise be given orally. (Soligenix, Inc.)

Patents are pending for this the Lipid Polymer Micelle (LPM™) technology in the United States.

But I wonder, will Soligenix merely use this new technology as a platform to reach more endometriosis patients with their medication? Or, will they use this opportunity to lower the cost of GnRH agonist medications both reaching more patients and aiding a burdened health care system beholden to wealthy drug companies? One can argue that by lowering the cost of the medication they can reach more patients, thus increasing their overall profit margin. And while this may be smart marketing – I’m not a marketing major – will Soligenix do it? Or, will doctors begin pushing yet another drug onto already frustrated endometriosis patients. But now, instead of fending them off with “but it’s a shot and I’m just not ready for that!”, or, “it’s a long acting shot, I don’t want that in my system!”, they can retaliate with it being an easy to swallow pill that we can stop at anytime. Or, will this be a once a month pill, or once every three-month pill like? And if that’s the case, should we assume it will be more expensive because of its ease of use promise?

Right now, there are too many questions left unanswered. Yet, the fact that a company was ingenious enough to develop and patent a method to orally deliver a medication such as a GnRH agonist is impressive. As I previously stated, this post is not for defending or refuting GnRH’s. You may love them or hate them. They do have serious side effects and if one is considering using them one should weigh all the evidence, do their research, and make their own choice based on their personal medical needs. Some people experience horrific side effects with GnRH agonist’s – some lasting for years after stopping therapy – while others swear by the medication and wish they could take them continuously. Knowing how your body reacts to medications is vital in chosing which medicinal therapy to employ for your battle with endometriosis. And that is a decision that should be made between you and your doctor.

Article – “Overpriced Poison?” UPDATED

This article popped up in my Google Alerts this morning and I couldn’t resist reading it. It discusses a couple women’s reactions to Lupron. A must read for anyone contemplating taking that drug, for sure!(PT1) Overpriced Poison? and (PT2) Overpriced Poison?

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Will this just end?

It hurts.

The Zoloft is doing nothing for my pain. Nothing. I am reaching the breaking point as I type this.

The medicine is exhausting me and no amount of sleep seems to be quenching the endless yawning, mind-dulling feeling that I just can’t catch up at night. I’m getting adequate sleep, so I know this is the medicine. I’m not getting less than 8 -81/2 hours of sleep a night, and on the average I’m getting 9 hours. This is unlike me, as I usually get around 6. But I’ve been making an effort to get more sleep at night because of this exhaustion, but it doesn’t seem to matter how much sleep I get, I still feel as if I’m not getting enough. I’m drifting off during the day and finding it very difficult to stay awake at night. This is getting to be very ridiculous!

Then there is the headache.

I’ve had a constant, vice-like headache since the morning after taking this medication. It follows the same pattern every day. It’s worse in the morning, ebbs in strength towards mid-day, and is slightly there in the afternoon. I have tried two separate and intense physical therapy session to try and abate this headache. My PT has maneuvered my head and neck in some of the oddest combinations, and while my other head symptoms have come and gone throughout these exercises, my  headache never ceases or decreases in intensity. It’s his opinion, as of now, as it is mine, that this must be chemical and not physical. I believe it is, seeing as I take the Zoloft at bedtime and the headache is worse when I wake up in the morning and if I wake up at night. It behaves chemically. At least as we believe for now. I’m still keeping my eye on it and doing my physical therapy. But I reiterate, I hate this medicine.

So, on top of the exhaustion and the headache, I’m still in pain. Pain.

And it hurts. It really hurts.

I’m finding myself not able to exercise lately because of it. And that’s not all I can’t do. I really can’t stand how this illness limits us! I’m crying as I write this and not got pity. I’m crying because the options that were given me – Zoloft, Lupron, hysterectomy – these aren’t options.

I’m not tolerating the Zoloft. My body is wearing down on the lowest dose we can start on! Absurd!! That leaves Lupron or a hysterectomy. We all know a hysterectomy doesn’t cure endometriosis, so lets take that off the table right now. That’s one of those “only in case of emergency” situations, in my opinion. I have to do more research into Lupron because right now I’m just not satisfied with it as a treatment option. I’ve heard too many horror stories. And I’ve heard some people happy with it. I know it will just depend on how your body handles it, but my body doesn’t handle medicine very well. So, yeah! Can you see why I’m apprehensive. But I’m also in pain right now!!!

The new #endo doctor

I met with the new Gynecologist yesterday. If you follow me on Twitter you would know I’ve been experiencing some endometriosis pain. I know I have a cyst on my ovary. This is just a feeling I have. I’ve had so many endometriomas on that ovary that I’ve become accustomed to the feeling by now. The new doctor didn’t fight me on this, she understood and agreed that I probably did then have a cyst. But… let’s get to the meat of the visit shall we.

She asked me why my former doctor had prescribed Mirena for the endometriosis. I told her it was because my periods had been 2 days of excruciating pain and very heavy flow. Then after the birth of my son, this went to 5 days. Clots the size of ping pong balls were not uncommon. It was exhausting!  And to add to it, I have irregular periods so I never knew when the cursed thing was coming. It could spring up a week early, or fool me by being a week late (many pregnancy tests were wasted this way when I was trying  for a baby). The, to add insult to injury, the endometriosis pain began coming all month not just right before my period. I needed relief, and quick! I had been anemic my entire life and my monthly “situation” only made me beholden to injections and pills and all sorts of iron laden nightmares. I was told by a doctor that I had to start eating the dreaded cow again, and I did for a long while. I smothered the beast in steak sauce to get through the unpleasant experience, but still it didn’t help. Finally came Mirena and with no periods came an even iron level. All was good, or  so I thought.

 But this new doctor is now telling me that the Mirena only works to stop the period, it does nothing to inhibit the endometriosis from growing back. I’ve read this, but I’ve also read that some women with endometriosis, that don’t have periods (like myself) find adequate pain relief with the device. But I’m no longer having “adaquate pain relief” am I?  So, these symptoms I’m having now – the discomfort with intercourse again, the gnawing pain into my thighs and groin, etc., all signs that it’s back. And I think it was back when I had that laparoscopy last October because these implants can be deep. My doctor, at the time, did a very quick look over after she released those adhesions. She was just looking for obvious endometriosis because she wasn’t originally going in to look for endometrial implants but a chocolate cyst. It wouldn’t be a stretch to assume 1) that it’s been there a while or, 2) it’s a recent development of endometriosis. But it feels deeper, like it’s in the ligaments, in the muscle.

How are we going to tackle this? Well, that’s where it gets rough. Because of my Basilar Artery Migraines, I can’t have estrogen. For now, she wants me to take Zoloft 25 mg. at night for 6 weeks. I am very skeptical and have mixed feelings about this. She says she has some patients it’s helps and some that it doesn’t work for. But she wants me to try it. My other options are Lupron for 6 months or a hysterectomy. I told her my views on hysterectomy, especially at a young age, and she agreed with me. You have to abstain from hormone replacement therapy for at least 6 months for the endometrial implants that remain in your body post-hysterectomy to die off. For young women, this is extremely difficult because the side effects of surgical menopause are often times more severe than for older women who are closer to a natural occurring menopause.

As your body ages your hormones naturally begin to decline on their own. So, take a woman in their late 40’s who’s estrogen levels are already dipping low (let’s call this a 4 out of 10). Where as a woman in her late 20’s would have an estrogen that’s still high (let’s say 9 out of 10) – these numbers are not technical, OK, just to show you the difference in ages. There is less shock going from 4 to 0 than going from 9 to 0. Imagine driving in your car at 65 MPH and slamming on your breaks – that’s a young woman getting a hysterectomy. It’s an abrupt change. Some women don’t have as much problem, and they adjust smoothly. And others have a terrible time. And you can even still have a higher estrogen count well into your late 40’s. There really is no magic age, it just depends on when your body begins going into peri-menopause, which is roughly in your 40’s. Again though, there is no magical number.

For me, a hysterectomy is always a last, last, last resort option. It’s one of those options I have to take because the bleeding can’t be stopped, or because of cancer, or something out of my control. I decided to give the Zoloft a chance for 6 weeks. I’ll go back to her and discuss if it’s helping or not, and where we go from there. I will look into taking the Lupron jump if this doesn’t work since that’s the only real option I have left at this point.

I took the Zoloft last night and it pretty much knocked me out. I still feel out of it and drugged up. I really don’t like the feeling this med gives me – just in a fog, like I could sleep all day. I have no appetite and I’m nauseous. I feel hung over. And I’m only on 25 mg! This stuff is vial. It’s doing nothing for my pain, but she said it can take time to work. I know there is research backing up that SSRI’s help endometrial pain, especially when it may be in the muscle and whatnot, but I don’t like how this is making me feel. I was on Zoloft once a long time ago and I don’t remember it making me feel like this! I wonder if it’s because of my other meds that the side effects are heightened? I just feel awful AND I have endometriosis pain!!! I want to crawl in bed and cry 😦

Adventures in the Land of CPAP & Pain, Pain Go Away Don’t Come Back Another Day!

In which I speak about my adventure at the sleep lab last night with the CPAP machine, and then about how my glorious morning was rudely taken from me by Ms. Left Ovary shouting: “Hey, remember me?”

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