Who knew estrogen was SO important to my body? I knew it helped, but I didn’t know that going without it would disrupt so much of my life.
Estrogen – hormone replacement therapy – has been through a roller coaster of different scientific tests and medical advise to women. At one time, the theory was that every woman should take estrogen. It was supposed to protect against heart disease, alleviate the symptoms of menopause and slow aging. Then estrogen became the bad guy – increasing risks of stroke and cancer. Another round of tests showed that estrogen increased stroke risk only when taken with progesterone. And on it goes. I wonder if there will ever be a definitive answer to the risks of estrogen.
With all that in mind, I went for my visit to my gynecologist this spring. I guess a bit of my medical history might be helpful for those of you that haven’t read my entire blog.
Age in a couple of months: 56
Health issues prior to this summer: Fibromyalgia, obesity, borderline hypertension, genetic-form high cholesterol, eczema (bad when I was a kid, very mild now).
The primary player in my health and the condition least controllable is the fibromyalgia. I have had it since I was 13 (yes, that’s 43 years!) and in the past year or so I was managing to minimize flare-ups. For those of you who have been under a rock for the past 6 months and missed all the Lyrica (which I don’t take) commercials that inform you about fibromyalgia, the primary symptom of this condition is muscle pain. Pain “for the fun of it”, not pain caused by doing something you might expect to cause pain. Pain all over – headaches, leg and arm cramps and aching – pain everywhere. No one knows the cause and thus there is no cure. You only treat the symptoms. Those commercials don’t mention everything, though. They focus on the pain only. There are other symptoms that go along: fatigue (dish rag energy), fibro fog (the inability to concentrate), digestive issues, mood swings, sleep disorders and probably some I’ve forgotten as I recover for a bout of severe fibro fog.
When you put all those symptoms together, and have no visible disfigurement or marking, it enables other people to disbelieve you. It’s all in your head, if they’re kind. You’re lazy and a bitch if they aren’t. Either way, it’s a tough way to live.
Since I started this path way back in the early 1960’s (before some of you were born?), and since my natural tendency is to be an investigator, I have become a close observer of my own fibromyalgia over the years. I kept daily records of pain levels, fog levels, etc for years. I kept them on a calendar, which was a fortunate coincidence – it allowed me to discover that they ebb and flow in everything mirrored my menstrual cycle. The week before my period, the symptoms began to increase. The week of my period, I was in fibro hell. The week following my period, the symptoms began to lessen. The fourth week was my best. Of course, then we began again!
I told my doctors at the time (both primary care and gynecologist) about my “findings.” Since this was about the time fibromyalgia had just been given a name and was even less understood than it is today, they weren’t particularly impressed. I kept recording my data. I also looked over my lifetime since I had started with fibromyalgia. I found that hormones played a huge role in my life. I had always had the same pain cycle that I noted above. But when I started taking oral contraceptives at 19, the pain levels weren’t as severe as they had been before. When I stopped taking oral contraceptives to try to get pregnant, the pain increased. When I was pregnant, the pain was almost gone – I actually felt the best of any time in my life when I was pregnant. I didn’t use oral contraceptives between children and I started having significant pain problems again. I did go back to them after childbearing and again felt an improvement. I “graduated” from oral contraceptives to straight estrogen after a number of years – due to the risks of the progesterone to the overall health of this aging woman.
A couple of years ago I had a hysterectomy (best decision of my medical life) and my ovaries were removed at the same time. I worried about the loss of estrogen, but I suspect my ovaries weren’t producing much, because I had no menopausal symptoms after the surgery. The hormone replacement I had been on prior to the surgery seems to have been what I was getting the whole time.
That brings me back to my gyn appointment this spring. We discussed the risks vs benefits of hormone replacement therapy. Since I have a sister who had breast cancer before she was 40 and since I still have breasts, I thought the doctor’s suggestion to wean off the hormones was probably good medical advice. I didn’t think much about the history noted above – big mistake. I decided to wait until summer, when we didn’t have so much going on, to taper off the hormones. Good choice. Otherwise, I might have slept through that 17 day trip with my in-laws in May.
I started tapering off July 1and was completely off them by the end of the month. I took no hormones in August. I also had no life – at least not one that was worthwhile. It took me until the end of August to figure it out because my fibro fog was so thick.
In addition to the fibro fog, I had almost constant pain and fatigue severe enough to make me feel like sleeping all the time. All the things I had been working on before July seemed to be forgotten. I began to have anxiety issues crop up over small things – the slightest problem set off incredible adrenaline surges that actually made me feel nauseous. My blood sugar was out of whack. I had severe cravings for carbohydrates. I even had a couple of crying jags. My eczema flared up in ways it had not for decades. I even had a couple of cosmetic changes (developed several deep wrinkles on my forehead), which I could have lived with if all the rest didn’t come with them.
I puzzled over why my fibromyalgia was suddenly so out of control. It was my husband who pointed out the timing correlation of stopping the estrogen and spinning out of control with all the other symptoms. I resisted – after all, I had to give it a real try. So my husband, who was very concerned about my decline, called my gyn for me.
After all was said and discussed, I am back on estrogen and on my way back to “normal.” I will always have fibromyalgia. I will always take estrogen. It only took one or two pills for my brain to begin working better again. The pain is back down to manageable levels. The fatigue is diminishing, though not as quickly as I’d like. I feel like I’m part of the human race again.
So, whether the medical community agrees or not, I have proved several things to my own satisfaction.
Fibromyalgia is definitely linked to estrogen.
Women with fibromyalgia may find the benefits of hormone replacement therapy outweigh the risks.
I need to listen to my own body and what it tells me I need.
As I told the doctor, I plan to stay on estrogen until the day I die – because I prefer to be able to live the best quality of life I can with fibromyalgia, however long that might be, than to live a really long, miserable life.
Thanks to estrogen, I’m back!! I can’t wait to get back up on my soap box!!