I'd like to introduce you to Lorraine because she is a pioneer. Lorraine had to face obstacles most of us never see. A perfect storm of cowardice, ignorance, indifference and greed landed at Lorraine's doorstep. She and her family were living in a nightmare that she didn't think would ever end. Her tenacity and confidence to regain her health in a situation that could have easily forced her to spend the rest of her life as a fraction of the person she was is an inspiration to us all.
At the age of 32 Lorraine, married with 2 young children, discovered she inherited a gene which is linked to a higher incidence of breast and ovarian cancer. Lorraine lives in Scotland, and the genetic counselor she was working with suggested she look into scheduling a double mastectomy and oophorectomy (removal of both ovaries) to reduce her risk of these two types of cancer. Following this advice Lorraine and her husband went to see a surgeon to get his opinion. Initially the surgeon said she was too young for this surgery and that she should come back around the age of 42-44. Later that day he called back and said he changed his mind and to move forward with the surgery. He said that menopause is not that bad.
Lorraine loves her family dearly and wanted to protect her health so, with her husband, agreed to have her breasts and ovaries removed, a decision they both now regret.
Once they made their decision they were swept up into the perfect storm that would create a nightmare for Lorraine and her family. The perfect storm was started decades ago when unpurified horse pee, Premarin, was advertised as HRT and the FDA allowed it. Premarin isn't HRT for anything and that lie gained momentum because women and their doctors were desperate to stop the suffering of profound hypogonadism. Like a train going down the tracks, it picked up desperate doctors and women as it made its way around the world. Fueling this train was Wyeth Pharmaceuticals, who kept physicians and the public ignorant by not allowing hormone testing in any clinical trials, such as the Women's Health Initiative and every other trial Premarin has been used in. Now that Pfizer owns Wyeth and their drug, Premarin, Pfizer continues to fuel that train with the lie. Instead of being brave and telling the public that Premarin restores nothing and isn't even close to genuine HRT, it acts like a coward and is indifferent to the suffering of so many around the world. Greed is the grease on the train tracks and Pfizer is pouring it on.
Lorraine was told that she would be sore after her operations but shouldn't feel too differently. She was told that some women suffer after their ovaries are taken out and some don't. That was all the preparation she was given, with no discussion about gonadal hormone replacement*. If a man were scheduled to have his testicles removed at the age of 32 do you think he would be told that some men suffer and some don't after their testicles are removed and nothing more? Do you think there would be no talk about gonadal hormone replacement? Ovaries and testicles provide the same hormones and provide the same functionality to men and women. Removing the gonads, whether from a man or a woman, produces the same suffering because the same hormones are lost.
After her surgery to remove her ovaries Lorraine suffered horribly. She had 30-40 hot flashes a day, which interfered with her sleep so much that she got almost no sleep. She got so dizzy that she once had to sit down in the supermarket and wait for the dizziness to pass. She became anxious, would shake, and didn't want to leave her house because she didn't want anyone to see her like that. She had mood swings, would get angry easily, and became aggressive in her personality, which was very unlike her. She couldn't have sex because of vaginal dryness and had absolutely no sexual response. Prior to her surgery Lorraine and her husband had a very active sex life. Because of all this, Lorraine became suicidal.
For months and months Lorraine repeatedly asked her GP and genetic counselor for gonadal replacement hormones and was repeatedly denied. She was told by her genetic counselor that hormone replacement was a bad idea because it would increase her cancer risk. This made no sense. Lorraine lowered her cancer risk significantly by removing the organs that were at risk for cancer. What about the rest of her body, which needed her ovarian hormones to function properly?
This went on for 13 months. Finally her GP gave her a patch for estradiol which did nothing to relieve her suffering. It didn't work because an estradiol patch must be given in a replacement dose and is only 1 component of many necessary for complete gonadal hormone replacement. Lorraine needed complete gonadal hormone replacement and she realized that if she was going to get help she would have to get it from someone else. Lorraine requested a referral from her GP to a professor of menopause.
With high hopes Lorraine met with a professor of menopause and explained her situation. Lorraine received estradiol gel, a testosterone implant in her hip, and progesterone pills. Lorraine had finally received appropriate replacement for profound hypogonadism! When I asked how she felt after receiving proper treatment she exclaimed, "Brilliant!"
Lorraine is 34 now and has her life back. She is no longer suffering and neither is her husband nor are her children. She is different than before her operations, but close enough to normal to be comfortable with where she is. She is a strong proponent of women receiving proper care for profound hypogonadism because she knows firsthand the suffering it can bring. She has joined a Yahoo group, email@example.com, where women can share their experiences and support each other as they face the perfect storm of ignorance, cowardice, and greed together.
Lorraine weathered the perfect storm that still rages and continues to derail women and their doctors from their quest for appropriate treatment of profound hypogonadism. You can soften the blow of this storm with information and knowledge. If you have profound hypogonadism then say it and expect complete treatment for it. If someone says that HRT is bad for you then say "Not if it's done right." Unpurified horse pee, Premarin, is bad for you, not gonadal hormone replacement. Remember, hormone replacement therapy is one of the most successful areas of medicine when it is pure, measured and monitored.
Lorraine is proof of that.
*Gonadal hormone replacement means replacing the hormones no longer provided by the gonads, ovaries in women, and testicles in men. Gonads produce the same hormones and function in men and women. Men with profound hypogonadism suffer with the same symptoms as women.