Previously we shared a selection of PCOS diagnosis stories. Here we’ve collected stories about what happens after diagnosis: the ongoing treatment and management of PCOS symptoms.
“My doctors listened to my wishes”
I’ve had PCOS symptoms for 2 years: very long cycles (90 days). I got a diagnosis after 3 months. Everything was well explained to me and my doctors listened to my wishes. I was offered to go back on pills or some other period inducers but declined as I didn't want to go back to anything hormonal. I still have cysts but I was lucky that my other symptoms disappeared on their own. I started to be much more careful of what I eat and tried to stay away from anything that can cause hormonal imbalances. However, I can not state for sure that this was the reason for my recovery. Around the time I got diagnosed I also became a Clue ambassador, and I found all the support I needed in the group.
—Dea, female, 23
“The first four doctors I spoke to just focused on my weight”
I’ve had PCOS symptoms for 15 years: excess hair growth, weight gain and difficulty losing weight, irregular periods, acne and hair loss. When I went to the doctor I was told it was likely I had it, but was always told to lose weight rather than tested for a definitive diagnosis. It wasn't until I had trouble conceiving that I finally got tested and had the diagnosis confirmed. I was given progesterone to bring on periods every three months. I also underwent bariatric surgery to lose weight, which has resulted in my periods becoming regular but I still suffer from all the other symptoms.
The first four doctors I spoke to just focused on my weight without helping to explore what was causing it. I felt like I was dismissed because of my size and it stopped me getting treatment earlier, which is making fertility treatment now harder due to my age. I also wasn't given much information until I saw a specialist. As PCOS is so common, doctors should investigate it more as a cause for weight gain rather than blaming weight gain for all the symptoms.
“My period is finally ‘normal’”
My experience with doctors hasn’t been terrible, but I wish they had listened the first time so I wouldn’t had to deal with it for so long. I actually demanded more testing [and this] is when they finally helped me. They put me on birth control and it has eased my symptoms. My period is finally “normal” and I haven’t had any cyst pop in a while either.
“One OB/GYN made me feel horrible”
I've had PCOS symptoms for four years. I used to have very irregular, long and heavy periods but now I'm taking birth control, the combined one. It has helped with the irregularity and heaviness of my periods but not yet with the pain. I have a lot of pelvic pain all the time which I don't seem to be able to manage yet. I also have some acne and hirsutism but they are very mild. I've tried 5 different kinds of birth control pills so far. The acne depends on which pill I'm on.
I saw a few different OB/GYNs before choosing the one that I would get my treatment with. One of them lifted my shirt and saw the hair on my stomach and said in a very awful way "this is not normal," which made me feel horrible. I've also had a bad experience with an ultrasound technician who assumed I was pregnant right when I came in the room and also didn't treat me very well after I mentioned being in a sexual relationship with another woman.
—Female, Buenos Aires, Argentina, 21
“More research needs to be done”
I’ve had PCOS symptoms most of my menstruating life, so almost 10 years now. I have 20+ cysts on each ovary, have irregular periods, experience a lot of period pain and abdominal pain, I have a bit more hair than I should, and had terrible acne (before it got treated with Roaccutane). I had a Mirena inserted to try and help with period pain, which is now much better, as my periods are barely there. However I now have chronic abdominal pain, with no apparent cause as “PCOS shouldn’t cause pain” according to the specialist. I’m now trying a strict diet created for me by an alternative medicine doctor.
The General Practitioners I went to didn’t want to hear much from me. They just threw pills at me, and told me to take the day off and put some heat on it. The first ultrasound I did was incorrect. I feel like most people try and just find bandaid solutions, rather than getting to the bottom of it. Even my specialist now wants to put me on the pill for a few months, along with the Mirena she inserted, “just to see if that might help”. They just make you take more and more drugs, despite them impacting your ability to go about your daily life.
I tried to join a PCOS group on Facebook, but I found it was very negative. I learnt a lot from my time on there, but left me feeling even worse than I felt before. I guess those who are on and posting in that forum are only the ones who are having a hard time—not the success stories. More research needs to be done, because pain seems to be a common symptom, and yet everywhere I look it says it’s not a symptom. I call bullshit!
—Anonymous, female, Sydney, Australia, 25
“I much prefer women OB/GYNs”
For eight years I’ve had increased level of testosterone and irregular periods. I was diagnosed by a new OB/GYN, but I had noticed irregularities in my cycle for 3 years before (from age 15). To manage my PCOS I take combination birth control pills. I've noticed uncharacteristic weight gain, and difficulty losing weight, but my periods and hormone levels have been regulated. I much prefer women OB/GYNs, as they seem to have more of an understanding for the pain associated with vaginal/ovarian/fallopian-related aches and syndromes, and they've been more willing to work through symptoms as I explain them. I also think it would be helpful to women who have a history of sexual abuse to be treated by another woman.
—Lisa, Las Vegas, USA, 25
“It's important to get to the root cause”
I’ve had PCOS symptoms for about one year: I have high androgens, insulin resistance and irregular periods. I've recently been diagnosed, and am pursuing a naturopathic-based treatment to assist in reducing insulin resistance, and maintaining optimal levels of male hormones, as well as supporting ovulation.
It was actually my Naturopathic Doctor who theorized that I may have PCOS (after going through my symptoms), and encouraged blood testing to look at my hormones, and other factors like fasting insulin and glucose. It was a relief getting an answer to my symptoms, and now I am pursuing a treatment that focuses on the root cause, rather than the symptoms.
My advice would be: Be your own health advocate. Seek the care of an expert. Get a second opinion if you feel like you are not being heard, or your experience is not being validated. Know that non-pharmaceutical options exist for the treatment of the root and symptoms of PCOS, but it's important to get to the root cause (ie. testing hormone levels) to ensure that you are getting the best treatment you can.
“The Mirena IUD has minimized all my symptoms”
Since I was 13ish I’ve had mild cysts and extremely painful and irregular periods. I now have a Mirena IUD and it’s minimized all my symptoms. I still have bad periods sometimes, but nowhere near as bad as they used to be.
—Anonymous, female, Los Angeles, USA, 24
“I was told by doctors that unless I was trying for a baby there was no treatment available”
I am infertile, very heavy periods, having to have iron infusions every other month because of them, hirsutism, weight gain (until I had weight loss surgery). I was diagnosed at 16. I was very lucky, my GP sent me for tests after taking the pill caused me to bleed for 6 months solid and he realised there was something wrong with me hormonally. I was prescribed metformin, it made me very sick. And I was told by doctors that unless I was trying for a baby there was no treatment available.
At times it has felt like PCOS has robbed me of my womanhood, adulthood and independence, but there is a life possible with PCOS. While it's not curable, it is manageable if you push your health care professionals hard enough and join a great support group. In terms of PCOS organizations I’d recommend Verity.
“Exercise and diet has helped”
For six to seven years I’ve had hormonal acne, a 30+ days cycle and severe breast pain. Within six months I was diagnosed with mild PCOS by a male gynecologist who dismissed it as being not very serious and recommended weight loss. A female gynecologist was much more understanding but suggested birth control with no warning of side effects or how it will help the underlying causes. Just the repeated refrain, “Try it for 3 months and see.” Then I was prescribed D-Chiro Inositol, but I saw no differences.
Severe painful hormonal acne 2 years ago, which made even washing my face painful, was the last straw. Trekked, exercised and lost 5 kgs. This helped bring back my cycle to regular and largely helped my acne. Even though the exercise has slowed down [to] almost none now, I keep a largely sugar-free, fat-free vegetarian diet (vegetarian for the past 17 years) with strict portion control. Evening primrose oil capsules (two daily) have helped immensely in relieving PMS symptoms such as breast pain, anxiety, mood swings, etc. Still trying to lose more weight and watch my diet. Haven't been on any other medication for the past two years.
“My whole life is affected by my PCOS, not just my ability to carry children”
I first started noticing that things weren't right at the age of 13 or 14. The main symptom for me was the irregular periods, but I also have hair loss, acne, pelvic pain (especially when/if I ovulate), fatigue and easy weight gain. Four years after the initial doctor’s appointment I got an “official” PCOS diagnosis. I was prescribed Metformin to help ease my symptoms. For me all it did was make me sick, dizzy and lacking in appetite. I tried slow release Metformin but that had the same effect. Currently I am not undergoing any treatment for my PCOS.
My experience with the healthcare system has been pretty bad, if I am honest. The general attitude of the doctors I have visited has been “You don't want to get pregnant, therefore we don't want to know.” Whenever I went to a gyno appointment all they wanted to discuss was fertility treatment. At the time I was 17/18 years old I wasn't interested in getting pregnant (I'm still not interested at 21). I feel it is wrong that they seem to concentrate on either the getting pregnant aspect of having PCOS or the weight gain aspect of the condition. No one seems to remember that the fatigue and the hair loss also have a profound effect on my life and self esteem. I would love for doctors to be more aware of how my whole life is affected by my PCOS not just my ability to carry children.
—Abi, female, UK, 21
“My endocrinologist was extremely rude to me”
I’ve had PCOS symptoms for as long as I can remember. Excruciating pain during my period, not just in my uterus, but in my back and legs as well. I am more prone to gaining weight. My hair started falling out recently (this is a new one), so I am now going bald. It took a long time, to get diagnosed, because I was very scared of going to see a gynecologist. But the first time I was there, she diagnosed it straight away.
I visited an endocrinologist just recently and am now awaiting further treatment. My gynecologist has been amazing, but her only solution was the pill. Since I am more prone to depression, I did not want to get that kind of treatment, but that was her only solution. The endocrinologist however, has given me more options, but she was extremely rude to me. I would like to make medical workers, doctors in particular, understand, that their patients are just as human as they are, and are usually in a very vulnerable state when they have serious medical issues, so being rude is quite possibly the worst thing you can be.
—M, Ljubljana, Slovenia, 24
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