I’ve been on some form of progesterone since 2013 following my second laparoscopy for endometriosis. It helped with the endometriosis symptoms moderately, but I’m realizing now that progesterone likely helped with much more than that, and played a large role in keeping my fibromyalgia symptoms at bay.
Why am I just now realizing this?
Sometimes you don’t know what you have until it’s gone.
About two years ago I opted to get an IUD. The compounded progesterone I take is not cheap ($70/mo) and isn’t covered by insurance. Following my divorce, money was tight so I began looking at how I could cut some costs. The nurses at my local gyno’s office convinced me that an IUD was the way to go. It would do the same job as the progesterone, but would also act as birth control and thanks to the ACA it would be completely covered by insurance. My endometriosis specialist was on board with giving it a shot, so that’s what I did.
All things are not equal.
After about a year with the IUD I was ready to go back to the progesterone. While it definitely helped with the endometriosis symptoms (probably moreso than the progesterone), making my monthly cycles much easier, I wasn’t happy with the side effects. I noticed my sex drive had decreased, I’d gained weight (about 20lbs in 17 months), and I was breaking out like a hormonal teenager. While my menstrual symptoms were decreased my PMS symptoms were increased.
Life on Progesterone
Over the years taking progesterone we’d slowly increased my dosage attempting to hit the right level. 300mg/day was just about right. My endo symptoms were better, my sex drive had returned to pre-illness levels, I felt generally great (high energy, low pain), and my skin looked awesome (something that has rarely occurred in my life), to the point that I’d regularly get compliments on how great it looked.
Did it cure endometriosis? Obviously not, as I still had another surgery 2.5 years ago.
What I didn’t really realize until these last few months is that it greatly affected my fibromyalgia symptoms. My energy was greatly increased and pain greatly decreased, rarely encountering a flare day, and when they did occur, they rarely lasted even a whole day.
And the bottom drops out
Back in January, I talked to my endometriosis specialist about the issues I was having and we decided at that point that I might want to try switching to a different IUD.
In March, in the midst of the unexplained headaches and other issues, I decided to have the IUD removed. In addition to the side effects I wasn’t enjoying, I’d read that there may be some connection between Mirena and IIH (which it was looking like I had).
My intent was to leave the IUD out for a couple of months to let my body settle and see what would happen. Then have the Skyla or Kyleena put in. However, when I went for the removal, I was told that there was a high likelihood that because I hadn’t had it at least three years my insurance wouldn’t pay for me to switch. I haven’t called to confirm this as I pretty much decided I’d rather go back to progesterone.
What I’ve experienced over the last few months with no hormonal assistance
The first month without the IUD I was reminded in a very big way just how heavy my periods are naturally. Have you ever looked up the average number of tampons used during a period? I finally did… it’s something like 7-10. I use that in the first 1-2 days.
I also crashed in a big way. My sex drive crashed, my energy crashed, my motivation crashed. I know at least some of that had to do with the stress during that time – heavy work load once I finally recovered from the unexplained headaches, plus getting the house ready to sell, then having it sell super fast. It’s just been a crazy few months.
Was the crash just the stress? Or was there more to it?
I still can’t say for certain. As I type this I’m waiting for the pharmacy to call and let me know that they’ve filled my order for progesterone. Thankfully, I was able to get my GP to prescribe it as I couldn’t get in to see my specialist until October and getting a message to him via his nurses is nigh impossible. But, in the meantime I decided to do a little research.
The connection between progesterone and fibromyalgia symptoms
A 2018 study found that progesterone and testosterone levels are associated with fibromyalgia pain severity. Increases in both of these hormones tend to be associated with lower pain levels. In previous studies, progesterone has been shown to have anti-inflammatory and analgesic effects.
This particular study was extremely small, with just 9 participants. All of these women met the clinical definition for fibromyalgia and were not taking any hormones at the time of the study. Researchers took daily samples from the women to measure their various hormone levels.
What they found was the progesterone and testosterone were inversely related to day-to-day changes in pain. Meaning that as progesterone and testosterone increased pain levels decreased.
The researchers also measured cortisol levels and found that the low progesterone was particularly associated with higher pain during times of high cortisol. Cortisol is known as the stress hormone (released when we are under stress).
The researchers suggested that these hormonal affects may explain why the incidence of fibromyalgia is greater in women. And, may also explain the difference in the pain experience of women as a whole.
As I mentioned this study was rather small, which is a problem. But they also didn’t compare the fibromyalgia patients against any sort of control group. I wish they would have had the control group as the results of this study did clash with the result from a previous larger study (which found no correlation between hormone and pain levels). However, the larger study did not examine hormone changes over a full cycle.
Fatigue and Progesterone
I did find a larger study that examined the connection between fatigue and progesterone. This study collected daily hormone samples from 122 healthy women, to gauge how hormone differences may affect PMS symptoms. Women with lower scores of fatigue had consistently higher progesterone levels.
I wish that there were more studies that examined this. I wish that the results were more cut and dry, but that’s just rarely the case on any of these studies when we look at fibromyalgia. It’ll be a bit before I know for sure if progesterone will help me return to my previous levels of energy. We’ll see. Trial and error is just what we do when we live with fibromyalgia.
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Laura says
Thank you for this blog. It really helps me. Even if the information isn’t new to me or true for me, it’s always affirmation that I’m not alone, it’s not “all in my head,” it’s not a “ditch diagnosis” or “fake.”
I find this particular post very interesting. I’m post-menopausal, had a supposed “complete” hysterectomy in June of 2016 for endometriosis, and have been unable to work since 2020 due to pain and fatigue. I’ve been diagnosed with fibromyalgia since I was 17 and go back and forth on what I think about it.
But when I was 35 (21 years ago), my previous gynecologist said I needed a hysterectomy. My husband at the time said no because we wanted another child and while I was open to adoption, he was not. So my doctor prescribed a shot called Depot Lupron which makes your body think it’s in menopause. It was nothing short of a miracle!
I took 3 shots each of which lasted for 3 months. During that time I was off ALL my meds: depression was better; IBS was better; fibromyalgia was better; no migraines; no TMJ issues; endometriosis was better (of course there were no periods!); even ALLERGIES (I’m allergic to everything except bamboo- which I was told to be tested at higher levels if I move somewhere with a lot of bamboo – and cockroaches.) we’re better. The only negative was the sweats, but I’m hot-natured anyway and always have water and a fan so no biggie.
I recently went to a new gyn who has prescribed an oral pill (I’ll start tomorrow) called Orilissa which is supposedly the same kind of thing as the Depot Lupron. If it helps, he says I must still have some endometriosis somewhere. If it doesn’t help, we need to look at other things. It’ll be interesting to see what happens.
I’m going to share this post – with your permission- with him and with my rheumatologist next month and see what they think.
May I share this post with them?
Again, thank you for all you do! Stay well and safe!
Laura
Jean says
Hi, I just read some of your blog for the first time. I’m struggling with the same issues. Have you had any improvement on the progesterone?
Julie says
Yes. Within about a week I noticed a decrease to the extreme fatigue I was feeling after the IUD removal. I’m still not back where I’d like to be (it’s not quite been a month yet) but I’m improving. Granted I’d been on progesterone for years before I got the IUD and it took quite a while to get to the dose I am currently taking and really see improvements to the fatigue that I had. I hope I’ll get back there sooner, as I really miss having the energy.
Hopeful4 says
I just saw a naturopath who said that I had no progesterone which my PCP never told me. The doctor put me on 100mg. Do you think that’s enough or should I ask for more? Please do update us to let us know how the progesterone worked out. Thank you!
Julie says
We are all different. I’d say see how you do and if you don’t feel it’s helping enough then talk to you doctor again. I believe I started at 50mg and it helped, but over time my doctor and I felt it needed to be increased. Over the course of about 5 years I went from 50mg to 300.
Kathy says
Hormone replacement therapy, begun at menopause, helped me an incredible amount with brain fog and energy. However, after a few years I developed multiple blood clots in both lungs, probably the result of the hormones—which I now can’t take and really miss. So be careful.