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Having PCOS is like being dealt a hand of genetic cards. You can play those cards so that you feel your best, sexually and in terms of your energy and mood. Your lifestyle, your diet, and hormonal management are all important pieces to manage the hand you have been dealt.

First thing to know is that you are not alone: one in ten women has a similar set of playing cards. PCOS (Polycystic Ovarian Syndrome) is a common genetic hormonal pattern in which your DHEA (an adrenal hormone) and your testosterone are robustly influential in relation to your ‘female’ hormones (estrogen and progesterone). Even though testosterone is widely accepted as the hormone of desire, if you have too much, you will not necessarily have a high libido. You may still have similar desire problems, or arousal and orgasm problems, as women without PCOS, though not for the same reasons. 

Twenty percent of the women I see in my practice have this hormonal pattern and I have found multiple things that work to balance you emotionally and physically, as well as improve your sexual experience. Let’s start with the basics, your period, and then go on to hear how PCOS interacts with your sex life, and what you can do about it.

With this hormone pattern women often experience problems with their periods—skipped periods, frequent periods, heavy bleeding, extra long periods, severe cramps, or no periods at all. Sometimes providers prescribe oral contraceptives to manage the pain and the bleeding, and to make the cycles regular. Women who have heavy and/or long periods can bleed so much that they become anemic. If you have anemia you can become so tired from an iron deficiency that you don’t have the oomph to be interested in sex. On top of that, it can seem to your partner that you are always on your period, and never available for sex. Misunderstanding around this can lead to distance and resentment in your relationship.

Even if periods are regular, with the extra androgen influence, women with PCOS are more likely to have cycles without releasing an egg. Without that mid-cycle hormone spike, you are less likely to experience the surges of desire, the ‘horniness’, mid cycle. Also, when you don’t ovulate you don’t produce much progesterone. Progesterone is the relaxing hormone in your chemical mix. You have estrogen and testosterone in that mix and those are both activating; progesterone balances that activation with relaxation. You have receptor sites in your brain for progesterone and when it lands there, you can feel mild sedation and calmness. When your progesterone level is low your sleep can be restless, you toss and turn, you can get sweaty, and you don’t wake up feeling restored.

Women with this hormonal pattern of PCOS report to me having night sweats, itchy or hypersensitive skin, and greater anxiety and irritability—sometimes too irritable to want to be touched. They also are, according to research, more likely to be depressed.

Also, If you have PCOS you are more likely to struggle with weight, and be at a higher risk of diabetes. The increase in testosterone increases the size of your muscles. Sometimes this works for you, and sometimes your muscles bulk up more than you want. This bulking up increases your weight and excess body weight can contribute to a lack of desire for sex. Many women who gain weight become self-conscious about their weight. It inhibits them from wanting to be seen naked, and so they refrain from initiating sexual contact.

Not all women with PCOS have or are going to have all of these symptoms. Many women with PCOS have no sexual problems, none at all. There is a large variation in how women with PCOS are affected. One third of women with PCOS will struggle with decreased fertility, and having sex will be linked with using ovulatory kits, and jumping in bed when the timing is ‘right’. Some women will have extensive medical workups for this and be on medications that influence their mood and desire. PCOS is not one thing — the underlying hormonal pattern of PCOS is there, but the expression is different. With genetic studies, we are still learning why this expression is so varied and how we can intervene.

Besides low sexual arousal and desire, women with excess androgen hormones can complain of vaginal symptoms including burning, dryness, or irritation. Some women report their own lubrication does not last long enough for them to finish sex without needing to add a lubricant. Sometimes there is ongoing itching and burning of the vagina that gets worse at certain times of the month.

Ann had this PCOS hormonal pattern. It was her anxiety and irritability that brought her in for a hormone evaluation. Specifically, it was the flush of embarrassment on her twelve-year-old daughter’s face when she, Ann, angrily demanded that the man in the ice cream truck turn down his annoying music. She recognized that her reaction was over the top and she was tired of being on the edge. On her intake form, Ann marked her symptoms— anxiety, irritability, vaginal dryness, specifically vaginal burning after intercourse, low libido, restless sleep, and worsening PMS. She had felt on edge for a few years and the number of days she felt moody was on the increase. Her sexual desire had been low for years. Vaginal dryness had started after the birth of her second child and was getting worse. Lubricants helped intercourse feel comfortable, but she was not that excited about having intercourse at all. She had sex because she knew it was important to her marriage, and she did like the closeness she and her husband shared after sex.

The vaginal dryness and burning that is sometimes found in women with PCOS is easily treated. Ann found this to be true. Eight weeks after she began treatment, her vagina felt back to the way it was before she had her second child. She no longer had dryness, and she no longer burned for a few days after being sexual. These vaginal symptoms responded quickly to the same estrogen treatment used for menopausal vaginal dryness : a topical low dose estradiol cream, or suppository used once a week.

Ann received a prescription of micronized progesterone, and with it she felt more relaxed and was able to sleep longer and deeper. She no longer experienced on the edge, moody feelings. She still felt anxious at times, but the feeling was slight in comparison. Her husband could approach her without her snapping at him. His touch, which had become annoying, felt good again. Intercourse was distress free, and she felt stronger levels of arousal than she had in years.

Ann did not have the anemia, but if she did she would have been given an over the counter iron pill to take daily and advised to increase the iron rich foods in her diet. About one third of women with PCOS have heavy periods. Heavy bleeding is defined, in medicine, as a need to change your pad or tampon every one to two hours. Long periods are defined as ones that last longer than seven days. Treat the low iron until your hemoglobin and hematocrit are in the normal ranges. Sometimes prescription iron is recommended. Also, if your provider doesn’t test your ferritin level (a measurement of stored iron), ask for it. Clinically, I notice women with ferritin levels greater than 50 report a stronger sense of wellbeing and are more likely to have some energy left for sex when they get into bed at night, than women with ferritin levels below 50.

Also, your health care provider can help you look at several treatment options to help you modify the heavy bleeding. Some of your options are friendlier to your arousal and libido than others. When your hormones are managed well, you will have more regular cycles, and probably lighter periods. You will discover you have more choices around which days to be sexual, and more energy with which to have it.

Remember, there is nothing ‘wrong’ with you and you are not alone. One in ten women are managing this too, and more genetic studies are underway to increase understanding and optimize health.

Symptoms of Too Much Testosterone in Females

  • Acne
  • Restless sleep/Insomnia
  • Irritability
  • Anxiety
  • Short fuse/Anger/Rage
  • Worse PMS
  • Menstrual Cramps
  • Weight gain/Bulking up
  • Irregular periods/No periods/Heavy periods 
  • Increase in chin and lip hair and hair elsewhere on body and a thinning of hair on top of the head
  • Vaginal irritation and/or dryness

This is an edited excerpt from Fanning the Female Flame-How to Increase Sexual Desire (without Changing Parters).

Heather was thirty-one when she first came to my office for help to locate her sexual desire. Her sandy blonde hair had an angled cut that came right below her chin. She walked in, sat down in the office chair right up against my clinic desk, and looked directly at me and said, “Tell me Susan, do women ever really want it?”

As she asked me that question, I took a quick breath as I registered what she was telling me—that she did not experience sexual desire, and that possibly she never had. Even though her particular medical situation has presented dozens upon dozens of times in my office since her visit in 2003, I will never forget the striking directness of her question.

Heather told me she’d never felt interest in being sexual. She did not think about sex or look forward to it. She never had. She otherwise had a very satisfying life. She was attracted to her husband. She found him to be exceptionally good-looking and manly.

Heather was healthy. She had no medical conditions. She was on no other medication besides the pill. Her life was busy and she enjoyed it. Mostly she stayed home with their three school aged kids, and she assisted her husband in his CPA practice part-time. Their daughter was eleven, and their twins (a boy and a girl) were nine. All of her children were well adjusted.

Her contraceptive history revealed that she had gone on the birth control pill in her late teens before becoming sexual. She was on birth control when she married her husband, and she had stayed on birth control pills until she wanted to get pregnant. She stopped to get pregnant and then started again when she stopped breastfeeding. She did this again for the second pregnancy when she had the twins. She had gotten pregnant quickly each time. At the time of her visit she was back on the pill.

Although highly effective at preventing pregnancy, birth control pills and other hormonal contraceptives are not always sex friendly. They can dampen sexual desire and reduce vaginal lubrication during sex, which can cause intercourse to become painful.

Research shows that while most women on the pill report no change in desire, some report more sexual desire, while others report less. I see those women who have less.

Here’s why some women see their desire drop. Hormonal contraceptives (including the pill, the patch, and the ring) prevent pregnancy by blocking ovulation, so that surge in hormones that comes with ovulation no longer happens. If you are used to experiencing a spontaneous interest in sex mid-cycle, you may notice that it is no longer there after you start using a hormonal contraceptive.

Also, hormonal contraceptives lower the testosterone level in your body. Testosterone, which is the primary hormone associated with sexual desire in both men and women, is produced less by your ovaries when you are on hormonal contraceptives. Also, the estrogen you are taking causes a liver protein called Sex Hormone-Binding Globulin (SHBG) to be increased. This protein binds up your testosterone, making the testosterone that you do have less available for your cells to use. Lowering your testosterone can land a blow to your sexual desire. It also can decrease lubrication, sensation, arousal, and weaken orgasm—all the feel good parts of sex. The Ortho Evra Patch, the NuvaRing, and also the newer, lower, twenty microgram estrogen birth control pills create even more binding up of testosterone than the older versions of the pill that had thirty or thirty-five micrograms of estrogen.

Heather’s blood tests confirmed her testosterone levels were below normal and she had an elevated SHBG level. I explained to Heather that this is a side effect of using the pill and it did not mean something was wrong with her.  

After our visit Heather decided to try going off of the pill to see what she experienced. Nine months later, she came in and reported that she had started feeling cyclical sexual desire about seven months after stopping the pill. This pleased her. She could finally relate to wanting it.

She never went back on the pill. Since both she and her husband were satisfied with their three children, he got a vasectomy.

Their sex life expanded. She continued to desire him, especially mid-cycle. She discovered a newfound appetite for exploration and discovery. They got creative in their lovemaking—they were sexual in the middle of the day and in different rooms of the house, they bought sex toys, and experimented with anal intercourse. They became far more open with each other and felt more connected.

Heather told me feeling sexual desire has made her feel normal. She’s no longer missing out! She finally felt part of the club of women who have desire and enjoy sex. She did not realize how much she had felt like an outsider before.

Some contraceptives don’t block ovulation or lower testosterone; these include the barrier methods—condoms, diaphragms, and also the PARAGARD® IUD (Copper-7). There is always the vasectomy option for your partner, or a permanent method for you, if you both are sure you don’t want any more children.

Not everyone is a candidate for these methods. Your medical history, your risk of pregnancy, and your personality all should be factors in your choice.

If you notice a drop in libido within a few months of starting any hormonal contraceptive, explore your options with your health care provider. The list of possible problem birth control methods includes the progestin only contraceptives like the Depo-Provera shot, the mini pill, and the implants in your arm, as a small percentage of women users may have lower libido and vaginal dryness with these as well. There is no perfect contraception, as each has its plusses and minuses.

If you do need contraception and your situation requires you to use a hormonal contraceptive that blocks ovulation or lowers your testosterone, there are remedies that can counterbalance those negative effects. Also, some birth control pills are found to be friendlier to your sex life than others.

This is an excerpt from Fanning the Female Flame-How to Increase Your Sexual Desire (Without Changing Partners).

 

Signed, a woman with little to no desire for sex

Of the low libido women who come to see me, roughly two or three out of twenty will have testosterone levels low enough that I identify it as a contributing factor to their low sex drive. Could that be you? It is important for you to know the answer. The list below gives you a reasonable idea if you are a woman who should get tested. Check the symptom list — If your testosterone levels are low you most likely will have at least three or four of these symptoms. It won’t just be that you have no desire for sex. Testosterone affects your whole body, so low levels affect your muscles and your mood too.

Here is the list of things that can happen when your testosterone is low:

  • You feel tired
  • You have less endurance
  • Your muscles aren’t strong, and even when you work out you don’t get much result
  • Your mood is low, and you feel a physical kind of depression
  • You are less optimistic than you used to be
  • Overall sexual touch doesn’t do as much for you as it used to–there is a dullness to the sensations in your vagina and clitoris
  • When your nipples are touched you no longer get aroused
  • Your vulva can feel as if it is burning
  • Your vagina has tears in the skin after intercourse, or can occur spontaneously
  • You will have less lubrication in your vagina when you are aroused
  • The amount of hair on your body is less, and the quality of your hair is thinner
  • You aren’t thinking about or planning for sex
  • Your memory is not as sharp as it used to be

GETTING TESTED: If you have three or four of these symptoms then ask your provider to test your levels.

Tests should include a Total Testosterone, and a Free Testosterone. SHBG (Sex Hormone Binding Globulin) will also be calculated to figure out how much of your testosterone is available for you to use, as it can be bound by this protein. If your tests show that you are deficient (below normal range) or low normal (low normal is the bottom 25% of the normal range) you may be a candidate for treatment.

More about testosterone in my book: Fanning the Female Flame

Click here to read about how PCOS can affect your sex life.

In the coming weeks, I’ll be writing about how to treat low testosterone.

On July 24, 2017 the Vaginal DHEA suppository we have been hearing about for five years became commercially available. Called Prasterone, with the brand name Intraosa, it is available by prescription. It is for the treatment of sexual pain during intercourse due to menopausal changes. Prasterone (DHEA) is converted locally in the vagina into androgens and estrogens which are the hormones that restore the vaginal tissue.

According to AMAG Pharmaceuticals, there is Copay Savings Program, which lets most insured patients receive their first prescription for a $0 copay and will then pay no more than a $25 copay for each refill for the duration of the program.

The unique research news was that the hormonal effects happened locally in the vagina and did not appear to raise blood levels of estrogen or testosterone throughout the body. Even though hormone levels did not increase, this treatment is not currently approved for women who have had breast cancer, or women who have unexplained postmenopausal bleeding. You can get the prescription from your provider. The vaginal suppository is inserted daily.

Click here to read my blog post about why there is no better time in history to be a post-menopausal woman who wants to have a great sex life.