Tag: birth control for endometriosis

The Shittery -volume 1

I haven’t written a post in so long, and honestly, I was afraid that with everything going on I would just be a wet blanket. The fact is I was going in circles trying to figure out how my gut health – something I have worked so hard on – could all go down the tubes after an excision surgery. And now, 11 months later, I’m more confused than I ever was because of the last three days. But let me back up.

In October of 2020 I had a 6 hour laparoscopic surgery to remove endometriosis and adhesions from the span of my ovaries to my lungs. Luckily the endometrial growth was minimal but extensive work was done on my bowels and left ovary to remove them both from the abdominal wall by way of adhesions. Within a day of my recovery I could feel the difference; the way I was able to expand my lungs, the way I could move and twist, the way I had more energy than before. I used very few hydromorphone pills and was able to walk and move around to the best of my abilities. The only hiccup I had was a fussy nerve along the side of my pelvic wall which we fixed with a nerve block. The goal from this point onward was to switch me off of Gabapentin (which I was on after my 2018 surgery for central sensitization) and try me on amitriptyline which my doctor has seen better results with. As for endometriosis and pain, I was to continue on birth control (oral contraceptive of combination hormone) on a continuous basis so to skip my periods, reduce the pain and potentially limit the estrogen that fuels the (re)growth of endometriosis. You can pause on that one if you’d like. I did.

About 4-5 weeks after my surgery, while still recovering slowly at home, I noticed I was having difficulty with bowel movements. Not only were things not moving well, but I wasn’t able to push anything out. So began the whirlwind trial and error of laxatives, stool softeners, fibre, enemas and suppositories. My GI reluctantly gave in to my request for more tests and much to my dismay everything kept showing up normal. On the contrary my symptoms were getting worse AND I was starting to have reduced mobility because of the laxatives. Around the 5 month mark I threw my hands in the air and stopped everything. I turned to my osteopath and my naturopath after realizing that both my GI and my endo specialist were not able to help (or… not optimistic in finding a solution). I have to give my surgeon credit, he took me off the amitriptyline because of its constipating effects and was more than happy to learn about SIBO (see next paragraph).

For those who are naysayers on the natural therapies you can skip this part but basically my osteopath could conclude I had a lazy bowel and my naturopath was able to conclude with a gold standard breath test that I did in fact have SIBO.

For those of you who prefer the more medical flavor, I had a defecography which showed ‘stasis {was} severe’ and a 1.3cm rectocele (a hernia that protrudes from the rectum into the vagina). Yay me! But none of this, in conjunction with some blood work was anything to cause alarm. I proceeded with the natural path so that I felt like I was doing something.

SIBO treatment is still ongoing at this point BUT in phase one – opening the biofilms – my flatulence decreased significantly after 5 weeks. Into the second phase – eradication of the bad bacteria – I started to regain complete mobility. COMPLETE MOBILITY! That was worth celebrating!! But I did not regain the ability to literally poop. So, I started taking a suppository every day and this was enough to poop out the most glorious poop. Once a day. Regular. Nicely shaped and sized. I mean this was something worth sharing LOL. Anyways… now we come full circle. See, aside from all the changes that were made to my body after the surgery the one thing that remained consistent was… the birth control pill. I don’t want to lose you here because at this point I am perplexed and fairly confident I will never know the right answer to any of this but …

A few days ago, around the 11 month mark of all this fecal chaos, I talked to my naturopath again about the PMS, boob swelling, cravings, and discharge – what feels like a period – minus the bleeding. She said sometimes the body’s own estrogen levels can combat the effects of the birth control pill. That same day I felt like I was bleeding but I wasn’t. I did what any insane person would do; I stopped the pill to just allow myself to have a period once and for all. That same day, I had the urge to poop and I was able to poop: 2 things I have not experienced in ELEVEL MONTHS!!!! What did I do? I texted my mom, my sister, my fiance…. I danced. The next day and the next day? same thing. Urgency and poop.

Is it the prostaglandins? Is it the naturally constipating effects of the pill? Is it the certain levels of hormone that are being maintained with the pill? I found this quote today which kinda sums it all up:

Studies have shown that oral contraceptives negatively impact gut flora, and estrogen metabolism. This can lead to weight loss resistance, increased risk of irritable bowel syndrome, depression and anxiety, and unresolved digestive issues.

Nutrition Rewired

In the end, this is an n of 3 days, and I have shifty data points to base all of this on. But all that to say, I thought back to why I was on birth control in the first place. Yes, of course to minimize the pain (dysmenorrhea) from my periods; no not as a method of birth control; but mostly because of the theory that it could prevent new or existing growth of endometrial lesions. I posted the question on social media today and there was a resounding NO IT DOESN’T PREVENT ENDO BECAUSE:

  • The theory only works on the retrograde menstruation theory.
  • Endometriosis fuels itself by producing its own estrogen.
  • Many individuals on birth control had growth of lesions between surgeries.
  • Menopausal and post menopausal individuals who inherently have lower estrogen levels maintain their existing endometriosis and may produce a new form of endometriosis by way of hormone replacement therapy (HRT).

Complicated, right? Well I have one more week until I speak with my gynaecologist but Im thinking this might be an excuse to do my own little case study off the pill (I’m secretly jumping for joy right now).

Thanks for tuning in to my shittery:)

by Categories: endometriosis journey, Ulcerative Colitis JourneyTags: , , , , , , , Leave a comment

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!

by Categories: endometriosis journeyTags: , , , , , , , , Leave a comment

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 child…Seizures 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

by Categories: endometriosis journeyTags: , , , , , , , , , , , 1 Comment