The Side Effects of Endometriosis Medications

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Side effects

Making Difficult Decisions

I have endometriosis, adenomyosis, chronic back and pelvic pain, vulvodynia, pelvic floor dysfunction, and as a result I also suffer from depression and anxiety. Endometriosis is a very complicated disease which currently does not have a cure. Often times, endometriosis patients find themselves having to make difficult decisions–some life changing decisions, in order to manage their symptoms.  March is Endometriosis Awareness Month, so I am writing this for the many people that are in the same situation as me. You are not alone in this battle against endometriosis.

 

Endometriosis

It’s been weighing me down like a rusty anchor keeping an old ship at bay.

I have a big decision to make.

It’s been hanging over my head like a storm cloud just waiting to strike.

When I wake up in the middle of the night from a muscle spasm, its on my mind.

When I wake up in the middle of the night to intense hot flashes, sweat soaking through the bed sheets, its on my mind.

When my bladder acts up for the 5th time since 3 a.m, its on my mind.

When I sneeze and one of my back ribs slides out, its on my mind.

All day…every day…ENDOMETRIOSIS IS ON MY MIND.

It was a very long journey to get diagnosed with endometriosis (read my story here), and I thought that once I was finally diagnosed, the road to treatment and feeling better might be easier, but it has not been. I have had excision surgery to remove the endometriosis;  however, my pain has not improved from that surgery.

Since my last article, though the search was long and frustrating, despite numerous rejections, I somehow landed in the care of a wonderful gynecologist. After thoroughly going through my history and all of the unsuccessful “treatments” I’ve put my body through over the years, we discussed some options or rather what little options I had left. He suggested taking a high dosage of progestogen– Norlutate (Norethindrone)–which prevents ovulation and essentially stops my menses altogether, hopefully in turn reducing my daily pain significantly.

I left feeling torn. Part of me wanted to believe there might be a chance that I could regain back some sort of control over my life. The other part of me believed this was “too good to be true” and from past experiences with endometriosis treatments, would probably do more harm than good. After much hesitation and steady contemplation, taking into consideration the financial burden, I decided to give this treatment a try.

The adjustment period was initially pretty rough. The menopausal side effects hit really hard. Between the bed-soaking hot flashes and constant body chills/night sweats, sleep was extremely hard to come by. After about a month, I began to adjust to “functioning” (and I use that word in its loosest sense) on three to four hours of sleep each night.

With the support of my loved ones, as well as a very special meeting with a pain specialist, I decided to pursue a goal of mine: to become a certified yoga teacher. Yoga has been my one constant throughout the past few years, the one thing that I can always turn to and find some sort of relief. Even if it’s not physical relief, the mental relief I get from a class is sometimes worth more than money can buy! I wanted to be able to share that with others suffering from chronic pain. So I enrolled in a yoga teacher training program through my yoga studio. The owners were very supportive and allowed me to make my own hours based on how I felt physically, knowing that my health was my number one priority. I started going 2 to 3 times a week for half days and felt pretty good.

After a month, I started noticing some changes. Instead of becoming stronger and stronger, I was feeling weaker and weaker. My back ribs started slipping out of place randomly. Sometimes it would happen after sitting in the car for too long, other times it would happen at yoga, other times just from a sneeze or cough. I was told this was due to the hormones, and is referred to as ligament laxity (hypermobility).

Slowly but surely more side effects started taking over my life. From mild to extreme–they became all encompassing. From weight gain, acne, hair thinning/hair loss, bladder incontinence (contemplating buying Depends on your 29th birthday is a lot of fun!), constant uncomfortable yeast infections, swelling of my extremities, excruciating pain in my bones, in my joints, in my muscles…all over my body. There were times when I couldn’t be on my feet for more than an hour without having horrible swelling and shooting pains up and down my legs, which made it impossible to walk around. Christmas gift shopping was torture! All of these side effects were having a significant effect on my mood and my anxiety.

Even though the side effects were starting to outweigh the benefits, I stubbornly wasn’t ready to give up. I wasn’t ready to let endometriosis win. The overwhelming sense of this being my last resort was driving me. I met with my doctor to go over everything. After he mentioned bone loss due to the lack of estrogen in my body, he suggested I try add- back therapy of estrogen on top of the progesterone to prevent any more bone loss from happening and to help alleviate some of the menopausal side effects. I was warned to keep an eye out for any returning endometriosis symptoms. It wasn’t long before that started to happen—two weeks, if that.

At the same time as all of that was happening, for the first time ever, I experienced a very scary and painful episode of costochondritis: inflammation of the cartilage that connects a rib to the breastbone/sternum, also known as chest wall pain. It basically mimics what a heart attack feels like. That alone was enough to send my anxiety levels through the roof.

To calm my anxiety, I decided to go to my safe place, a yoga class, which turned out to be a horrible idea. I could barely make it through the first ten minutes of class without collapsing in pain and breaking down in tears. The shooting pain in my wrists and my ankles were so bad that I could barely hold myself up in downward dog. I spent the rest of the class lying there, fighting off the urge to run out of the class and disappear from embarrassment. This was the last straw.

I don’t think I can physically or mentally deal with this anymore. In my heart, I know what needs to happen but my mind keeps replaying flashbacks of the agony I go through living with my period. The truth of the matter is that I’m scared…I’m scared of my period. I’m scared of endometriosis. I’m scared that I’m not mentally or physically strong enough to deal with this for the rest of my life, but I also know in my heart that living with all these side effects surely isn’t a way to live either.

I can’t help but remark on the mind game of it all. I think about the pressure that we feel from other people and the pressure that we put on ourselves to be “better” or “normal”–I’m not sure which is worse. I’ve been holding on, hoping this would work and now I can’t help but be angry with my body for betraying me yet again. For once, why can’t a treatment just work and not leave me overcome with horrible side effects?

I think about all of my endometriosis warriors who have been forced into making life-changing decisions for managing their endometriosis and associated conditions fully knowing the struggle that lies ahead of them. I wonder how they cope? What’s right? What’s wrong? What are the boundaries that we make for our own bodies? When is it too much? When has the line been crossed?

I would love to hear your thoughts xo.

 

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2 Comments

  1. Hi Katelyn, I’m so sorry for your struggles with endometriosis. It is hard to be positive about a treatment that causes more problems than it solves. I find myself wondering why doctors prescribe synthetic progestins when it is quite possible that bio-identical progesterone in the form of Prometrium might be safer and more effective. Endocrinologist Dr. Jerilynn Prior from the Centre for Menstrual Cycle and Ovulation Research at the University of British Columbia has proposed using bio-identical progesterone, rather than progestins, to suppress ovulation and menstruation because it does not cause hot flashes, aids sleep, and supports new bone formation, although there are some bone considerations to be aware of. If you are interested you can read about it here: http://www.cemcor.ubc.ca/ask/endometriosis-and-natural-progesterone I wish you all the best.

  2. Hi Katelyn,

    I read your story. I have quite a tale to tell myself. After two surgeries to remove endo and free my ovaries from the vaginal cuff, I decided it was time for a hysterectomy. I chose to keep my ovaries. After much research and support from my doctor we agreed this would be the best option for me given my age. It was the greatest day of my life!! The minute hormones were out of my system I was stronger, healthier ad happier. I had no idea life was supposed to be this way and my pain was gone. I was 39 when I did it. Now 41. This passed spring I went back to surgery to have a 5 cm cyst removed from one ovary. I do have an endometrioma growing in the other and I am going back to surgery remove the ovary. My doctor and I have had some discussions about visanne. I tried I. For one week I relapsed in to the heart pounding in my throat, high blood pressure, headache, darkness and heaviness, aching muscle pain. I called her and stopped it right away. Within two days I was a new person. WE discussed Lupron..I refuse to put that poison in my body What does this say about the things we put in ourselves in an attempt to correct something??? I have not had a head ache in two years. My body and it’s hormones are doing exactly what they are supposed to do on their own. When I compromise it by adding chemicals I only make myself sicker.. I will keep my left healthy ovary to maintain my own hormones and hope I can buy myself enough time to have a natural menopause. I wish you the very best.

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