Progestin making you bloat?

One of the messages that I try to convey to my readers is that you MUST listen to your body. The other message – which is a mucher harder one to convey and certainly harder for my readers to follow through on – is to be your own advocate. Sometimes your physicians are not as educated about hormones and birth control options as they should be. But as a sufferer of endometriosis you know that birth control is the first line of defense for reducing period pain. In some cases, its used to abolish your period altogether so that by eliminating your cycle, you eliminate the pain that comes with it.

The first time I went on birth control was at the age of 14. Birth control in the late 90’s were not what they are today. I mean, for the most part it was just a bunch of hormone and a whole lotta side effects. I gained about 40 lbs and that is NOT the age you want to be feeling overweight. I stopped taking the pill out of self consciousness but eventually resumed the pill a year later simply because the pain was too unbearable. Nevertheless I have been on many forms of birth control for over 20 years. Some worked, others didnt, and sometimes they start out working but lose its efficacy over time.

After my second lap in March 2018 I was put on Visanne. Technically I was supposed to go on it before my surgery but I forgot (oops!). The idea with Visanne is that its a progestin-only oral pill, so the goal is to reduce the estrogen in your body and hence reduce the bleeding/pain and growth of endometrium (which is found in your uterus) and endometrial lesions (potentially outside of your uterine cavity). In addition, I was asked to take them continuously to abolish my cycle altogether. It didn’t work!!!! Not only did it NOT WORK but it made me feel bloated and gross and unattractive. Over the course of 6 months I was having constant endo-belly. I mean, everyday, all the time. I literally had to buy a whole new wardrobe to accommodate my wider midsection. Ladies this is not the way of life!! So I did what no patient should do… I stopped taking it and switched to the pack of old birth control pills I was taking (and loved!) before my surgery. I knew it was only a month before I was scheduled to see my new specialist so really, what could be the harm? Initially I think the results were psychosomatic but I instantly felt more human. Then, the physical symptoms followed. The bloating over the course of 1 month was dramatic. Well,.. at least it felt dramatic.

 

 

 

 

Once I was able to sit down with my new specialist (new because I moved across the country from Vancouver to Ottawa), we looked at the big picture. Not only was visanne not impacting my hormone cycle, but it was bloating me. Then you add in that I have ulcerative colitis and it paints a better picture of why my body may not be absorbing the pill format of the hormone. That’s when we brought in Mirena – a progestin-only IUD. Without going into details about the procedure or the discomfort, the fact of the matter is Mirena is doing what its supposed to do. Month over month my periods are lighter. I’ve heard it takes about 7-8 months before its completely unnoticeable but I’m not there yet. I still feel period cramping without the bleeding, but i’m only 4 months in. Moreover, the progestin in this format is isolated to my pelvic cavity which means it doesn’t have the opportunity to bind to progesterone receptors near or on my gut. I’ve had zero bloating (minus the occasional endo belly which I mitigate with my diet) for 3 months at least.

Remember. The goal is to listen to your body and challenge your doctor when you KNOW your quality of life is not optimal. Think outside the box. Read up on options and present them to your doctor. And above all, if you ever have any questions please message me. You can email me, or DM me on social media (@crampmystyleblog).

This is me today!

Listening to my body – part 2

It’s hard to tell whether I will lose some followers on this one, just because of how complicated this journey is getting. So I left off on part 1 telling you that my 1) entyvio infusions were being moved from 8 weeks to every 4 weeks 2) Im due to meet my Endo specialist and 3) I’ve taken the liberty of switching off of progestin-only Visanne (oral birth control) to a estrogen-progestin oral birth control called Minovral which seems to be keeping me on my cycle and has reduced my endo-belly.

Let’s start off with my endo visit exactly a week ago. For the sake of public scrutiny I will avoid mentioning names of my doctors. Let’s call my Endo specialist ‘Dr. E’ for now. Skipping ahead past the routine questions, Dr. E had a resident doctor come assess me first. To be fair, I took a cancelation endoscopy for an hour after this appointment so the doctors were rushing on my accord. The resident was interested in my birth control path, and agreed that putting myself on some form of birth control was the right idea, and certainly if Minovral had helped me in the past it was a good option. She also reiterated that I would use it to skip my periods as I had been, to reduce the ‘cycle’, and eliminate the bleeding which in turn should reduce new endometrial growth. This is key to the understanding of how the disease works. However, where we disagreed is her plan to attack the pain. She was comfortable assessing whether the birth control itself would reduce the pain and then we could address next steps in two weeks. My thinking was that birth control hadn’t worked in the past, Visanne certainly didn’t work, so going back to birth control as the line of defence was practically moving backwards. She called in Dr. E to help with the issue. I wasn’t being irate, I was being rational and she appreciated this. Meeting Dr. E was like meeting a celebrity. He has a fantastic reputation in the community and has overcome tremendous feats for women suffering from endometriosis that I was admittedly somewhat star struck when he walked into the room. Mom helped me gain my composure to address the pain question and this prompted him to get me to lie on the table and see where the pain is located.

Upon inspection I was able to show him that my lower left side, right around where my stitch for the ovarian suspension was, always hurts. Always. Every examination Ive had since my excision in March has resulted in me wincing in pain every time a doctor pokes in that general area. This was a red flag for Dr. E. He then asked me where my upper pain resided so I showed him the right side under my rib (which one could say is my right side of my diaphragm). Practically, this would align with the diaphragmatic endometrial lesions that were cauterize during my excision. Scientifically however, lesions on the diaphragm (so I learned) do not express pain on the diaphragm but refer pain to the right shoulder. This is where we paused for scientific clarity.

In Dr. E’s opinion, one should be pain free 6 months to a year after a thorough excision like the one I had. While the cauterizing did not effectively remove the endo on my diaphragm it should have – along with skipping my periods – significantly halted any growth or spreading of those implants. Dr. E also mentioned that doing surgery on a patient is usually refrained from IF the patient has NOT had this time frame (at minimum) of no pain, as it may point to other explanations of pain rather than it being a direct cause of the implants. Yikes. We agreed that we would order some scans to physically examine the state of the implants (for preparation of any future surgery) but that our primary goal (kind of what I was gunning for in the first place) was to address the pain.

Here is where my life turned upside down. Dr. E told me that there is a Neuroscientist who believes the body can learn to address pain in a constant fashion, even when the body doesn’t meet protection. For more information on this concept, Dr. Lorimer Moseley has created this fabulous video called “Tame the Beast”. (This link will open the video in a new window). Under this concept, Dr. E has administered a pain blocker to many women like myself who are feeling pain in an area that is perfectly healed and not in danger. With my eagerness, Dr. E’s Resident administered two long needles into my nerves associated with this over-firing of pain. It was such a weird feeling. Ugh! I was told that if it is the problem, I should get a rise in pain initially and then the pain should go away within 24 hours, for 4-6 weeks! Note that the pain did go up after the injections but only if I really pressed on the nerves. The pain went away 100% after the first 24 hours and I can happily report there has been no pain for ONE WHOLE WEEK!!!! With regards to the upper pain, the theory is this could also stem from the same problem but given its complex location I would need to be given a neuromodulator (similar overall function of the pain blocker). BUT we decided to hold off as this area is still under scrutiny by my GI.

Perfect Segway…

After this appointment to which I was numb from emotion, I quickly drove over to the hospital down the street for my endoscope. So, this was ordered by my GI (Lets call him Dr. G) to reexamine my pancreas and get to the bottom of this recurring acute pancreatitis. In some ways this would also help to rule out the theory of endometriosis on my pancreas but the rest was up in the air.

When I was about to be sedated the GI (Call him Dr C), asked me if the episodes of pancreatitis ever happened before I started on entyvio. The answer was no. He then told me that a recent publication (2018) showed 4 cases – two adult and two paediatric – of pancreatitis linked to Entyvio (Vedolizumab) and he suspects this may be the case with me. The endoscope was quick and dirty. When I started to come out of the fog, Dr, C waited behind to explain to me that the endoscope looked fine: no inflammation on my pancreas, no scarring, no signs of damage. This substantiated his theory that it could be from my medication and that if my infusion frequency has been moved to every 4 weeks this could exacerbate the pancreatitis. On this front, I have left it to Dr. C to let Dr. G know, and contact me for next steps. The challenge there will be having to take me off a medication that is working for my Colitis and figuring out which other medication will work.

Stay tuned for part 3.

Listening to my body – Part 1

With so many things happening to my body at once, I spend a great deal of time discerning between endometriosis pain, ulcerative colitis pain, anxiety, stress and just an off day. I run out of spoons a lot, and I am starting to look at my body with disdain – something I don’t even want to admit to myself. To put this all together Im starting to become unfamiliar with the body Im living in. Truth be told the last year has been one of the toughest emotional roller coasters of my life (even worse than that time my first husband cheated on me). But everything is coming to a head now…

Ulcerative Colitis

I have met with my GI. He has sat with me and taken all of my specifics down. He was wonderful. He listened to me talk about how my body feels over the course of 8 weeks between infusions and agrees with me that they should be moved to every 4 weeks. This should mitigate the symptoms that creep up around week 5. With the looming possible Primary Sclerosing Colingits (PSC) he wants to ensure we do a colonoscopy every year, with intermittent Calprotectin testing and blood work to stay on top of the whole system.

Pancreatitis

He also wants to get to the bottom of my pancreatitis. We talked about the possibility that this could be endometriosis infiltrating the pancreas. His explanation, which I agree is sound, hypothesizes that the endometrial lesions would have to infiltrate deep enough into the pancreas to cause a blockage or some physical inflammatory response for this to be the cause of my elevated (spike in) pancreatic enzymes. That being said he is willing to look into it, have me looked at by a pancreatic specialist and communicate with my endo specialist to have my body examined from different angles/groups of thought.

Endometriosis

Well, see the rest of my body wants to cooperate but my endometriosis is still a stubborn bitch. On Jan 10th I finally meet my endometriosis specialist and will hopefully get clarity on the chronic pain I have down below, the periods that are still happening despite the Visanne, and the diaphragmatic pain that’s a thorn in my side (figuratively and literally).

Leading up to the holidays my endo belly was killing me! I was almost at 3 weeks of the most uncomfortable endo belly. I mean, I went online and had to buy new pants that would allow for the extra circumference I just developed. And with no sight of this going away, I was getting super depressed. Nothing I tried helped. I thought at first it might be soy milk but I took that out of my diet. I am on gluten free, dairy free, sugar free meals so what the heck was causing this? I wasn’t doing anything out of the norm, and I could tell it wasn’t colon inflammation.

On Christmas Day my uterus decided it wanted to give me a full on period – the first one I’ve had in over 8 months. FML! I knew the Visanne wasn’t working as I was still having a ‘cycle’ without the bleeding. Now… this?? Screw Visanne, Im done. I decided to stop the visanne altogether as it wasn’t providing me any help whatsoever. Three days into the bleeding my period pain was way too debilitating and I had to put my thinking cap on. I wasn’t going to be seeing the specialist for another 2 weeks so think fast. I decided that since birth control is usually the first line of defence against period pain, I decided to pop one of my Minovral oral birth control pills. This way I was getting some sort of hormone into my body, despite it also having estrogen there.

My other line of thinking was that maybe visanne – or rather the lack of estrogen – was somehow behind this outrageous endo belly. This theory was based on nothing at all, other than listening to my body and knowing how it might be reacting to certain changes over time. In case my specialist thought this theory was crazy, I catalogued my belly over the course of a few weeks leading up to my appointment.

 

One day off Visanne
Two days off Visanne – no difference yet ūüė¶
One week off Visanne – things are looking up!
Two weeks off Visanne. I feel human again!!!

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

So now I wait…

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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 РAn 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. РAbby 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