The math doesn’t add up

I don’t know if anyone reads blogs anymore; certainly with Instagram and Twitter taking the main stage for social media. But, to me this is the only place I can fully capture the emotions that I endure throughout these new stages of my journey. I’m struggling with the words though because things are not adding up. Right when I think I have found an ounce of hope, something else throws me off.

When Visanne didnt work the next step was to insert the Mirena IUD. When it was inserted last March (nearly 11 months ago now), I was told that the intent was to normalize my hormones, remove a ‘cycle’ and stop the bleeding. No more ups and downs of hormones, no more intense crashes of hormone and therefore no stage for endometriosis to play on. According to Mayo clinic:

The device is a T-shaped plastic frame that’s inserted into the uterus, where it releases a type of the hormone progestin. To prevent pregnancy, Mirena: Thickens mucus in the cervix to stop sperm from reaching or fertilizing an egg. Thins the lining of the uterus and partially suppresses ovulation.”

Aside from the horrible emotional and physical setbacks I’ve experienced with my IUD, moving ahead it certainly did appear to drastically decrease (almost stop) the bleeding but I have always felt a cycle in place. So maybe it was kind of working? One thing was for sure though. The Gabapentin was NOT working. It was absolutely not doing anything for the pain (though it did seem to help with the leg spasms at night). Everything came to a head in December when Dr. Singh called and I felt like I had run out of tools. The list of treatments that I had exhausted well outrun the list of options I had yet to try. And then there it was. A plan A and a plan B. I’ll give to Singh that he never laid it out quite so plainly but this is how my brain interpreted it. Plan A: go on Orilissa for 3-6 months to determine if estrogen, and thereby the endometriosis, was impacting the pain. Plan B: VATS. It was the first time in the last three years that I’ve felt secure about Orilissa and despite the public bashing I proceed to do with Lupron I was ok to take the plunge with Orilissa. The first week was hell. The second week was hell-er and it induced a period. Weeks 3 and 4 are a blur but I an safely say the profound effects of Orilissa snuck up on me when I one day woke up on my left side – something that was impossible to do when I was in chronic pain before Orilissa – and had an a-ha moment that something was different. 4 nights of this in a row and I could safely chalk it up to Orilissa.

I did the unthinkable: I shared my success story on social media. Others who are taking Orilissa chimed in with their stories too and several women DM’ed me about their fears about trying the drug. “Its not for everyone” I told them, while secretly encouraging them to take the plunge. And then… my worst fear. I got a period. I bleeding period. A ‘run to the bathroom with diarrhea’ period. A ‘holy hell my uterus’ period. And on top of that – that, being something I havent experienced in nearly two years – my diaphragm came back. My shoulder tip pain came back. My fatigue came back. My mood swings came back.

One step forward and two steps back.

Some things are just not adding up. Mirena was intended to thin my lining and help reduce my cycle, bleeding and pain. Orilissa was intended to block estrogen and therefore reduce potential spreading and growth of new endo lesions. Together, I should be a pretty pain free, bleed free spot. So why, why 11 and 2 months in am I dealing with the most all-over-body excruciating pain I’ve had in years? The math isnt adding up.

I’m here. I’m showing up consistently. But its starting to get harder and harder to hide the anger. My therapist wants me to work through the anger. She says it impacts the way I deal with the pain and blocks the ability to face it head on. But the reality is that the anger pushes away the depression. Cus depression is a slippery slope. Once I get on that slide I may not be able to find a ladder. So tell me, how does one cope with all these let downs?

I tried to be nice

Lupron Therapy for Endometriosis

I am utterly frustrated with myself because leading up to this blog article I have been able to convey information with an unbiased perspective, articulate both negative and positive outcomes of research, and have educated those who are less informed than I am. But this next article I have to write, I struggle to do with such poise. In fact, every bit of information that I want to pass along is in honor of those who have not found their voice yet; in honor of those who have not yet come to this crossroad; in honor of those who have spent years informing others and I can now echo their message.

If you or a loved one have been challenged with endometriosis, you know that inevitably the one symptom that has brought you to the doctor’s office or the Emergency room is pain. Pain is something that – with the exception of a few people – every mammal on this earth feels. We were built to be able to feel pain as a sign of danger. All of us can relate to pain as an external stimulus, but those of us with endometriosis have discovered that pain can also be caused by our own bodies attacking ourselves; something all autoimmune sufferers have in common. Both the heightened baseline at which you begin to tolerate pain after so many years of suffering, exacerbated by the mere fact that women are built to tolerate more pain, have resulted in centuries of ignored diagnoses, ugly looks, disregard, and ignorance to the root cause. If your doctor is truly ignorant they may send you home with painkillers (see below). If they are somewhat aware of endometriosis they may start you on birth control (see below) and if they are smart (and compassionate) they will refer you to a gynecologist or even better, an endometriosis specialist.

If I have learned anything over the years, communicating with so many women with endometriosis, no two women have walked the same medical path. So with brevity I will explain the various options that may be presented to you:

  1. Non-steroidal anti-inflammatory drugs such as advil or Naproxen. Sometimes when you approach your uninformed doctor about pelvic pain or lady issues they will start with a prescription of NSAIDs. Be careful not to take them too often, but definitely keep taking them if you need to. Maybe at the beginning this is all you will need.
  2. Birth Control – if you visit a doctor that remotely understands endometriosis they have at least been educated about the potential impact of elevated hormones that play a role in menstrual cramping. As such they tend to dole out prescriptions for birth control like candy. You will find that – upon trial and error en route to finding the right birth control – this may be an effective treatment.
  3. If the typical birth control containing both chemical forms of estrogen (estradiol) and progesterone (progestin) don’t work for you, your doctor may prescribe a progestin-only birth control to eradicate the production of estrogen altogether.  This is what I am currently on. According to a study written in 2014 by Wee-Stekly et al, A randomized clinical trial indicated that oral dienogest (Visanne) [was] more effective than a placebo in reducing pelvic pain in patients with a diagnosis of endometriosis. In combination with either form of birth control your doctor may also recommend taking your birth control continuously to abolish your cycle and avoid any peaks and valleys of sex hormones circulating in your body.

But this is where things get dangerous. If you get to this point and you are not already in the hands of a well educated, endometriosis specialist (NOTE: a Gynecologist is NOT an endometriosis specialist) you need to get one! There are three well known outcomes that could be presented to you. Here they are:

Positive – your specialist has now decided it is worth the risks of surgery to go in and do an excision surgery. If they are recommending an ablation you need to find another specialist. Consider excision like plucking, versus ablation which is like shaving; in the latter the root is still there. Having the right surgery will at least put you in reset mode if/until lesions begin to grow back, or adhesions start to form. Nonetheless this is a very positive outcome! Furthermore for women who are looking to conceive, a 2015 paper from Rizk et al concluded that

“In women with minimal and mild endometriosis, surgical excision or ablation of endometriosis is recommended as first line with doubling the pregnancy rate. In patients with moderate and severe endometriosis surgical excision also is recommended as first line. In patients who failed to conceive spontaneously after surgery, assisted reproduction is more effective than repeat surgery.”

Neutral – An increased rate of hysterectomies are being performed on women suffering from endometriosis, and of all reproductive ages. While a hysterectomy may improve the pain associated with menstruation,  this option should only be prescribed by the patient, after long hard deliberation, and of sound mind of someone who has completed their journey of child bearing. In a recent documentary produced by EndoWhat, (with the same movie title) specialists resounded the notion that if endometrial lesions are not also removed with the reproductive organs, endometriosis and its symptoms could still persist.

Removing the ovaries, fallopian tubes and uterus of a woman with Endometriosis will not cure the disease, because the endometrial lesions are elsewhere in her body. Endometriosis responds to estrogen, and even when a woman is no longer in possession of her ovaries, estrogen is produced in small amounts by her liver, adrenal glands and breast tissue. Phytoestrogens are also present in our environment. – Abby Norman, author of Ask me about my uterus

While this may be a solution for some (and quite frankly Im still trying to get more information from those who have undergone the procedure) it may not be the best option at the get-go.

Negative – this is where I have to take a pause, and write with elegance. More and more doctors (though the numbers should be going down) are offering their patients  a drug therapy called Leuprorelin (also known as Lupron). Leuprorelin was initially released on the market in 1985 as a drug therapy for advanced prostate cancer, administered as an injection. The mechanism of action is such that it acts like gonadotropin-releasing hormone (GnRH) hormone by binding to its receptors to (over)produce two hormones – luteinizing hormone (LH) and follicle-stimulating hormone(FSH) – which are involved in reproduction. However, because so much of these hormones are circulating in the system two things happen: 1) your body feels worse because these hormones stimulate increased production of those two sex hormones (estrogen and progesterone) that play a role in pain but then 2) the gonadotropin-releasing hormone (GnRH) receptors shut down because of over-stimulation and then all the other cascading hormones produced downstream are also shut off. This is the optimal end result of Leuprorelin; to shut down the production of sex hormones. Prostate cancer is powered by testosterone, so  shutting down production of this hormone is an effective treatment for this modality.

Given that the drug ALSO shuts down estrogen, in 1990 the drug was remarketed for the treatment of endometriosis. In this interview, makers of Leuprorelin commented “The most common side effects observed with Lupron Depot are those seen in menopause — hot flashes, mood swings, headaches and vaginal dryness. All side effects are reversible upon cessation of treatment” **for those of you taking Lupron, you can burst out laughing now**

Here is the reality. Lupron and all other (GnRH) stimulators should be administered with a number of ‘add backs’ – which according to Abbvie (the number one seller of Lupron) “Add-back is a daily pill that you take while on LUPRON DEPOT therapy to add back a small amount of the hormone progestin, which can help you manage certain side effects, without interfering with the way LUPRON DEPOT works.” What they fail to tell you is that along with the list of 10 side effects noted in the brochure that is provided to you, they advise you to go to the website and run through the full laundry list of side effects. More notably, these side effects are life altering, more severe than indicated by any prescribing doctor or Lupron care team, and irreversible. For instance on both their website and their brochure they do note that: Thinning of bones may occur during therapy with LUPRON DEPOT alone, which may not be completely reversible in all women… LUPRON DEPOT may cause harm to your unborn childSeizures have been observed in patients taking LUPRON DEPOT…Depression may worsen while taking norethindrone acetate. Patients who have a history of depression should be carefully observed during treatment. Here is my favourite though…

The most common side effects of LUPRON DEPOT included hot flashes/sweats, headache/migraine, decreased libido (interest in sex), depression/emotional lability (changes in mood), dizziness, nausea/vomiting, pain, vaginitis, and weight gain. These are not all of the possible side effects of LUPRON DEPOT. Talk to your doctor for medical advice about side effects.

This information was presented to me in full during my last visit to my endometriosis specialist and it was recommended to me that I fill out the forms during this sitting, set up my insurance for coverage and order the vial to be shipped to my local drug store (to be brought with me to my next appointment). I asked – for clarity – if she could instead refer me to a specialist who was comfortable removing the endometrial lesions she left on my diaphragm as this is where I was experiencing the most pain, but she said without a diagnostic trial of Lupron she did not feel a referral was necessary; that it was too premature. So I complied, filled out the paperwork, and went home feeling like I had just done something terrible. Then I did what I always do – I reached out to my endo sisters and was flooded with emotions upon hearing their stories about Lupron. The side effects, the impact on daily life, on relationships, on jobs, on childbearing or tending to loved ones. It was a resounding ‘NO’ on taking Lupron with a few sprinklings of positive or neutral reviews. As you can see from the graphic below, so kindly shared by endographics.org the positive reviews to exist and I want to make sure everyone understands this may be the right drug for you… But I want more than anything in the world for people to listen to their bodies, listen to their hearts, and do what is best for them! Many many pages exist out their on the lawsuits, deaths, and outcomes of Lupron. I am not here to go into that with you today (though tomorrow is another day). For now, I just want to bring this drug to your attention so that you are empowered the next time a doctor wants to order this for you. Find your voice, know your rights.

Thank you to Endographics.org for allowing me to share this image which so clearly depicts the details of Lupron (in a much better way than I have).

You can read more about endometriosis history here

For a much more thorough review on Lupron I suggest you make a pot of coffee and read HormonesMatter

Periods and Poop

Why we need to listen to our bowel symptoms

So many young women have approached me about endometriosis – and its related symptoms – to help determine if they have the disease. Because of their age, the vast majority have been told by their doctors that it is likely they have endometriosis but it has not been confirmed through laparoscopy – the only way to confirm endometriosis today. In almost all cases, however, the number one symptom that is consistent with all these young women I have spoken to is increased diarrhea during menstruation.

Over 90% of women diagnosed with endometriosis actually present with GI symptoms as their initial symptoms. Bloating is the most common presenting symptom, and is typically reported by 83% of women with endometriosis” – Lagyndr.com

Not only is this so common, it is a leading factor in misdiagnosing these women with either IBS before the diagnosis of endometriosis has been made. But why is that? Why do we poop more during our periods? Why arent doctors being more diligent in finding the right cause?

OK lets start with ovulation…

Estrogen and progesterone – both naturally occurring hormones in the body – play a role in reproduction (aka sex hormones). Leading up to your period, during ovulation, estrogen is at its peak levels to stimulate the release of an egg. “From then on, oestrogen levels begin to fall. Meanwhile, after ovulation, progesterone does the opposite of oestrogen and continues to rise; this is in order to prepare your womb for the fertilisation of your egg.” – Emma Thornton.

Menstrualcyclegraph..fw

Progesterone can typically cause a bit of constipation but when levels of progesterone are depleted so quickly toward these last two weeks it can release its constipating effects and as result can stimulate some diarrhea (or rather, increased gut motility). While most women between the age of 18-40 are on birth control to help with the pain, the levels of these hormones are usually not as controlled in women with endometriosis and thus symptoms like cramping and diarrhea still break through.

Then you start bleeding…

It has been shown that cramping associated with menstruation is linked to prostaglandins – a hormone-like substance found in the tissue that are signaled to contract to facilitate the shedding of your lining (thus your period). Unfortunately, prostaglandins are found in basically any tissue that is able to contract (aka inflammation) and therefore when the body sends signals for them to contract, it most likely also results in contraction of your bowels. We all know cramping of your bowels is a sure way to stimulate some poop. Note that “Higher levels of prostaglandins are associated with more-severe menstrual cramps” and these higher levels are associated with a number of possible hormone-related issues such as Endometriosis. For those of us who have endometriosis on other parts of our bodies such as our thoracic cavity, we also notice cramping there too. Ouch!

Now lets talk about the gut…

In parallel we know that estrogen hormone receptors are found within the gut. There are several different interactions between estrogen and the gut that we are just beginning to understand, one of which may be the interaction of estrogen with estrogen-metabolizing bacteria residing in the gut which may promote certain side effects such as bloating. Gut microbiota shifts (lower lactobacilli concentrations and higher Gram negative
bacteria levels) have been demonstrated in a primate study of endometriosis, although the mechanisms linking these remain unclear.

We also know that medications such as the well known drug Lupron work by blocking Gonadotropin. “Gonadotropin releasing hormone agonist (GnRHa) stimulates the
production of follicle-stimulating hormone and luteinizing hormone thereby suppressing estrogen production making it a common treatment for the estrogen-driven disease, endometriosis.” If you are not familiar with Lupron and other drugs that work by this mechanism, they put you into chemical menopause which results in a laundry list of potential side effects. However we have seen that by this mechanism – by suppressing estrogen production – certain symptoms such as diarrhea may become tolerable.

Now you talk to your doctor and the conversation goes like this…

“I have painful periods and with it I get a lot of diarrhea” – the doctor glazes over the part about your painful periods and goes right to the diarrhea. First thing, lets get you a colonoscopy to see if there is any inflammation in your colon. Dr. Ken Sinervo from the Center for Endometriosis provides a wealth of knowledge about this very topic here. In a nutshell “As many as 8% of endometriosis patients with bowel symptoms may eventually be diagnosed with inflammatory bowel disease. IBD is usually characterized by abdominal pain, constipation, diarrhea, or alternating bouts of constipation and diarrhea as well as intestinal cramping.” You may be saying this sounds like you but your doctor said they didnt find anything. IBD is very distinct when looking through a camera. The gastroenterologist can see particular parts of your lining (Ulcerative Colitis) or throughout layers of your bowel (Crohn’s Disease) that are massively inflamed from physical ulcers formed therein. If the gastroenterologist doesnt see this they may order a fecal test called fecal calprotectin, which will test for inflammation specific to the gut through a biomarker that can be found in your stool. If both come back negative, and your doctor is thorough, they may choose to monitor any subsequent flare ups by ordering recurring calprotectin tests and measure the potential escalation in inflammation.

But my doctor gave me antidepressants and shooed me away…

If your doctor doesnt know how to look for the signs of endometriosis or doesnt feel the need to put you through a colonoscopy they may diagnose you with something called IBS. IBS is very similar to IBD but in lieu of physical lacerations in your colon you have a faulty gut-brain signal which means your brain is sending your gut these signals to poop. Accordingly to Dr. Sinervo:

Irritable Bowel Syndrome (IBS) is usually treated with dietary changes to avoid food triggers, and increasing dietary fiber. In some patients, stress can be a trigger. Avoiding stress or learning to deal more effectively with stress may help reduce the number of episodes. Exercise is beneficial for many patients. Medications are necessary for some patients. These may include anti-depressants, anti-spasmodics and other medications. In addition, medications that work better for patients with predominantly diarrhea or constipation are also available and have been shown to be beneficial for some, but not all patients.

Lets get technical for a second…

Both IBD and IBS, while they have different signature features, affect the gut. The goal then is to slow down the gut motility – the speed at which food moves through your gut – to try to reduce the number of bowel movements you have in a day. One hot topic at the moment is the gut microbiome. Many women with endometriosis experience something called ‘endobelly’. People with IBS or IBD have similar bloating without the catchy name. If a food diary is kept on hand most patients will identify certain trigger foods that will result in massive bloating. TMI Alert: this bloating is not something you can fart out, it needs to be dissipated over time. Why does this happen?

There is a community of bacteria that live in your gut – known as your gut microbiome. The bacteria have been around since birth, and each person has a unique microbiome based on their diet, their environment, their immune system and a wealth of other factors. The important thing is that you want to keep your gut microbiome healthy, meaning you want to keep particular strains of bacteria in higher quantity – the ones that have a protective nature – and you want to keep other bacteria like sugar-loving bacteria low in population. Antibiotics are a sure way of killing both the good and the bad bacteria, which is why so many of us in the medical community are really against shotgun approaches that render the host (thats you!) without any defense. Nonetheless, after your doctor has guided you on some diet changes such as low fiber and perhaps to stay away from dairy and red meat (other foods that cause bloating and inflammation) you might notice that your bloating is controlled and your diarrhea is not so bad. This is great! Lets not knock it, but it doesnt mean you dont have endometriosis. It just means you are killing off the bad bacteria in your gut – the ones that feed off dairy and sugar and in turn cause massive bloating. These bacteria – if fed properly – would emit gases that cause your bloating. Not convinced? Try taking some capsules of activated charcoal when you are really bloated. The charcoal absorbs any gaseous toxins and removes them through your poop (your poop will be black from the charcoal), and in turn will relieve the bloating caused by these gases.

But the pain is back (or never left)…

If the dietary changes are working for you, stay on them. Because even if you do have endometriosis you will eventually want to adhere to what’s known as the ‘endo diet’ or the ‘inflammatory diet’ which is similar to what you have been doing: no dairy, red meat, or gluten. For those of you with diagnosed IBD, you can follow along in my journey converting from a low residue diet (full of rice, bread and pasta) to one that is low in gluten. But what about the pain? All of a sudden you have to scream for someone to listen to you because, while it’s great that you are not pooping ten times a day anymore, the period pain is still unbearable!

Unfortunately at this time the only way to diagnose endometriosis is through a laparoscopic surgery where they will take a biopsy of the tissue and will remove any endometriosis that can be found while they are inside of you. In Canada and many other countries you need to have had 1 year of failed pregnancy to be referred to a fertility clinic where they then assess your eggs, fallopian tubes and other hormonal factors. Putting the pieces together they can make a case for surgery to make an official diagnosis. For women who are too young to be trying to have a baby, or choose not to have a baby, you will need to be referred to an endometriosis specialist who may or may not want to operate right away but instead help with pain management until it is too unbearable. I know I am painting a very sad picture right now but this is the reality. And to be honest I don’t know the process in other countries.

The first step in pain management is birth control. I know…, they suck! But the reality is that getting your hormones in check will certainly help with the pain. You may need to experiment with a few different types of birth control to see which one fits you best. If estradiol-progestin birth controls dont mitigate the pain, the next step might be to try medications that only contain progestin. Reducing the estrogen content in your body by removing the chemical mimic (estradiol) might help with the pain as well. In fact, along with the progestin-only birth control they may suggest getting rid of your cycle altogether by taking the pill continuously. The hope is that by eliminating any spikes in estrogen which would occur during your cycle this would completely stop menstruation and any side effects that come along with it.

Now it’s time for surgery… 

During the surgery you will be put under. The laparoscopic surgery makes three tiny holes in your abdomen and leaves very small scars. There is no telling where the doctors will find your endometriosis but the goal is to remove anything they can see. The point of me dragging this blog on for so long is because in a small percentage of women the endometriosis may be found on or around the bowel which may have contributed to the diarrhea in the first place. That contractile tissue we talked about earlier would have been contracting against your bowel which would have definitely produced some painful diarrhea.

When the endometrial tissue is gone all we can do is hope for the pain, cramping and pooping to be reduced and then we continue the journey from there. Part of the reality is having an official diagnosis which in some ways does bring a sigh of relief. Always looking at the positive 🙂

Please reach out if you have any questions!