Update: Afraid to Hope

Hope and Chronic Illness

When you live with a chronic illness, your ability to hope slowly deteriorates over time. After countless medical treatments, doctor visits, and procedures, it’s hard to have any hope that you are going to find a way to stop the suffering. The worst thing, especially, is when you find a “specialist” who promises this time will be different; this time their treatment plan will work because the other “specialists” did not really understand the illness…And yet every time, usually about three months in, their plan fails and you are back to square one. Except, with each fail, a small part of your ability to hope is taken away.

Update: Afraid to Hope

I’ve been through so many trial and errors that I am afraid to hope. I’m afraid to think that my new treatment is working and that I could have finally found the right treatment plan. I’ve been so afraid to hope that I’ve avoided blogging about my new treatment plan in fear that I could jinx myself. However, Homeschool Mom Utah reminded me that’s it’s important to share both the ups and the downs of this journey we are all on. It’s difficult for me to believe this time could be different because I’ve been burned so many times before.

But I also know it’s important to share with the endo/adeno community my progress and the positive strives I’ve made on my new treatment plan. For the past 3.5 months, I have been taking megace (megestrol) 20 mg once daily. This is a progesterone only medicine that was originally created for the purpose of treating ovarian cancer. Since taking this pill, I have only had 1 period and spotting throughout the 3.5 months. This has been such a nice break from the cycle I was stuck on where I was bleeding 5-7 days every 10 days.

Positives to Megace

As I noted, this medicine has stopped my periods. It’s actually the first medicine that has even been able to do so. I even once tried a combination of Depo Provera shots with birth control (not FDA approved) and still could not stop the bleeding and pain. This 20 mg pill seems to have been able to provide me with some relief. I’m so scared waiting for the other shoe to drop, afraid for the day the pill stops working like my past “promising” treatments.

Side Effects of Megace

Like any treatment plan, there are always positives and negatives and each person has to outweigh the benefits from the side effects. For me, megace has been worth the side effects because I’ve never been able to avoid the heavy bleeding before. It also has had a lot less side effects than birth control or other treatments, making the side effects seem minimal to past treatments.

This is not to say that this medicine is perfect and has given me zero side effects. When I first started the medicine, for the first month, I had severe migraines, mood swings, an increase in my anxiety, and some additive depression. However, those side effects went away after about a month and now I am only left with the following:

  1. Weight gain- One thing I dreaded about this medicine was I found in research that the most common side effect of this medicine was weight gain. I was petrified to begin this medicine for this exact reason, as I’ve struggled with body image my whole life. In these first few months I gained between 5 to 10 pounds, mainly through water retention and bloating (see below). However, now that I’m not in constant agony I find myself with more energy and willingness to exercise, which has been helping maintain my weight.
  2. Acne- my acne was always bad around my cycles, but with megace I find myself having flare up randomly. Even with extensive treatment, I can’t seem to shake getting acne in the typical hormonal spots (chin, forehead, nose).
  3. Water retention/bloating- Because I no longer bleed, I do experience bloating/water retention for about a week or two a month. It seems to be like my body is still preparing for a period.
  4. Pain and cramps-I still get my typical cycle pain- I get pain around the time I’m supposed to be ovulating and when I’m supposed to be on my period. I also still get leg, back, and side pains randomly throughout the month. However, none of this pain is nearly as bad as it used to be.

Summary

I know not many will have read through this whole post or made it this far. But I feel the need to reiterate my main points, in hopes of providing those who care with my “sparknotes” on megestrol (megace). In summary, I’ve experienced no bleeding/full period in almost 4 months, I no longer have to worry about having XXL pads on standby, and I’ve gained more free time and energy. Yet, I still experience side effects like weight gain, acne flare ups, bloating, and random cramping and pain.

So despite being scared to admit it, I am hopeful of this treatment plan working. I’m still scared about the long-term effects and lack of research on this drug. But for now, I’m taking it one day at a time.

One thought on “Update: Afraid to Hope

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