Listening to my body – Part 3

I would like to entitle this blog post “taking matters into my own hands” simply because the last month has been complete and utter HELL and I have not heard a peep from either doctor despite my concerns. I should preface this by saying I feel confident my doctors respect me so I don’t think they are adamantly trying to ignore more, but as the medical system goes I’ve been dealt a shitty hand and its up to me to fix it now.

I  would also like to take a pause here and say “sorry for being away for so long” but I think the journey below will paint a better picture for you.

If I were to summarize January I would say, 1) hopeful on the lower endo pain 2) confused about the upper endo pain 2) concerned about the pancreatitis flare and 4) happy-ish with my UC status.

If I were to summarize February I would say 1) pissed off about the lower endo pain 2) phenomenal resolution on the upper endo pain NO THANKS TO MY DOCTORS!! 3) very confused about the pancreatitis and 4) a little concerned about my UC now.

Endometriosis Pain Blocker

Dr E is a saint to be honest with you. Despite his tremendous workload is was able to squeeze me in for my second pain blocker and made sure he was present in the appointment. This time we decided to try the pain blocker + steroid which is meant to increase the longevity of its effectiveness. Wow that is a weird sensation when  need (a large needle) goes into your nerve. Ugh! I was immediately concerned with this injection because I was nauseous from equal parts psychosomatic and equal parts somatic. Dr. E insisted I sit and talk to him until the nausea went away and during that time we talked about birth control.

Birth Control

Since the regular Minovral Oral Birth Control was clearly not working (I bled for 22 days straight in January) Dr E was going to try me back on Visanne but I just knew in my heart it was a waste of time. We talked about the potential that my ulcerative colitis, or rather my damaged gut, was impairing the ability to absorb the oral birth control. It was a quick decision to book an appointment to insert an IUD. From everything I have read, Im pretty stoked about getting this implanted and to only receive Progestin again. Aside from the bloating, which likely won’t occur this time if I am bypassing my gut, the progestin sits really well with me (and my clear skin!).

After the appointment…

What a freaking shit show. Several hours after the injection both the lower and upper endo pain was exacerbated and medically this makes zero sense. Could I have been reacting to the steroid? I was expecting pain to get worse before it got better, like last time, but not in both spots and not to this severity. I let it ride. And over the course of three gruelling days it got worse. Intense. Crippling. Nothing – not even morphine – was helping, so I was subjected to being drug free. On the third day we had some lovely friends come to town and I was NOT going to let this pain stop me from seeing them. So I did what any woman in crippling pain would do… I drank! A lot. Until it numbed the pain. Judge me all you want but when you get even the slightest relief it’s a godsend and I wasn’t about to stop.  3 stiff drinks, med free, was the perfect remedy to help me sleep.

I awoke the next day in more pain than I could imagine and I was caught between a rock and a hard place: feed into the feeling that I may die here in this bed or risk going to the hospital for some pain meds. Ok the truth may shock you but I endured the pain for TWO MORE DAYS; I couldn’t bare the thought of him missing work to be with me so I waited until he was gone. Ladies I was so shocked at the care I received in emerg. The female nurses and doctors that took care of me were all very sympathetic and determined to try a variety of medications on me until we found the right one.

Sad news is after 12 hours they ran out of meds to try on me, and a slithered back home into my bed and succumbed to enduring this on my own again. My body relaxed with the comfort of my own cave, too weak to cry, and too frustrated to tell anyone. I lay there for hours just breathing and writhing. Why didn’t I go see Dr. E, you ask? Because that day he left for two weeks of vacation and the damage of the injection had already been done. No pain med could help me at this point. I needed a fresh start.

Call me crazy but that exercise sparked a whole new level of determination in me. I could have just called it quits and claimed myself a permanent alcoholic but I didn’t think my family would appreciate that so much, nor my boss, so I spent that time in fetal position thinking about next steps. Disclaimer: My heightened determination may have had something to do with 6 days until I leave for the dominican republic – get your ass up and figure something out! 

Taking matters into my own hands

So this is what I did. I booked an appointment that day for a massage to focus on my ‘diaphragm’ pain. Words cannot express to you (though I’ll try in a dedicated post on this) how much this helped! So I booked a second one, two days later. This one admittedly was a bit more painful but still helped. Next thing I did was went to an osteopath. Have you ever been to one of these? Lord almighty I had some skepticism when I realised most of her practice was done with her eyes closed but I was in NO position to pass this up. Again, I was astonished and perplexed at how much this helped. Mentally, physically, emotionally. I am now sworn to osteopathy. More on this in a separate post for those of you who are looking into this treatment.

The stigma of natural practices

I don’t want this to be a ‘holier than thou’ moment but more of an educational moment for all of you skeptics (or rather, what I like to call judgy judgers) who wouldn’t touch these methods of practice with a ten foot pole. I see support groups for natural remedies, diets, oils, and I lump them all into a category I like to call “No thanks I’ll stick with my doctor”. But then one day, something happens and you realise that the medical system is failing you; a system designed to cater to illnesses and diagnoses that are well-defined, treatable and non-urgent. You come to the day where, literally, you say to yourself “I’m going to die on this cold bathroom floor and nobody will find me for days but at least I will not be in pain any more.” And you are forced to make a decision: Give up or try ANYTHING.

This is literally what has happened to me and SO MANY women out there. I would even dare to say a number of men have come to a reality that had once been trivial to them – have a doctor with no answers – and have given in to alternative treatments. So on record, I say, “If I have to choose death or alternative medicine, I’m going to try alternative medicine”.

One week later I was in shape to go to the Dominican (with one day only, sick in bed at the all-inclusive) and enjoyed a much needed break from life.

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 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 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