PCOS

Post Concussive Metabolic Dysfunction in a Dancer

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A Concussion, an Infection and the Slow Spiral of Declining Health

Our daughter started ballet at 2.5 years old, and by 5 years old she had started competitions and had decided she was going to become a professional ballerina. She was talented, had an amazing work ethic and completely loved her life of ballet, friends and school. She was a very happy child, bright and bubbly and she woke up everyday super excited about what was going to be happening that day. From a very early age, our daughter showed determination, stubbornness and a quiet, but strong competitiveness.

In October 2016, when she was 12 years old, she got a severe concussion, and her whole life stopped for nearly 3 months. She stayed in her bedroom in the dark, couldn’t read, slept for most of the day and even trying to tie her shoelaces gave her an intense headache. After months of no improvement, we took her to a chiropractor, who told us her neck was out and she wouldn’t have gotten better until it was put back in properly. Our daughter floated out of that appointment so happy that she nearly felt back to her normal self.  The chiropractor gave us an information sheet about Thiamine/B1 Vitamin at the time, but we didn’t really take any notice apart from trying to give her some more marmite (yeast spread) as it suggested.

Then in September 2017, both our daughter and our older son suddenly became very ill with vomiting, diarrhoea, rashes, headaches, stomach pain, joint pain, and bright red palms. Our older son had more intense symptoms, and also had extreme nose bleeds and petechial rashes – he was admitted to hospital where they found his liver and spleen were enlarged but they couldn’t work out what was wrong. Our son had recently come back from a school trip to Vietnam – we were trying to find if there was a link to Vietnam but he had already been home for a couple of weeks so the hospital didn’t test for any illnesses from Vietnam. After weeks of this illness, we were told our daughter had Mono/Epstein Barr Virus and that this was causing her illness and it was completely unrelated with our son’s illness.  We found this extremely odd that they could have mostly the same symptoms at exactly the same time, but as our son was more acute and in hospital, we were just concentrating on trying to get both of them well.

Since then, our daughter has never fully recovered. She started not sleeping, and constantly having body pains and headaches. She was sent to a paediatrician who diagnosed her with Child Migraines and told us she would outgrow them and was given melatonin for sleep. The melatonin worked for 3 nights and then completely stopped working. Our daughter started to put on weight, and would look puffy in the face, and she lost her menstrual period even though she was gaining weight. She was always tired, always had body pains and slowly but surely lost her sparkle.

Declining Metabolic Function and Weight Gain

At the end of 2017 when she was 13 years old, she lost her place in the national ballet training program. Our daughter was extremely stoic at this point, and was determined to get a professional career without the training academy’s help. Throughout 2018 she continued to put on weight, no matter how healthy she ate or what she ate, and still didn’t have a menstrual period. We saw doctors and nutritionists, but they couldn’t explain why her weight continued to increase or they would tell us there was nothing wrong. Our daughter became quiet, withdrawn, easily irritated and frustrated and stopped being interested in anything or anyone. She continued to work at her ballet, and the only time she would ‘light up’ would be on stage, as she was still trying to compete. During 2018, she gained 10kg/22lbs while being on a very strict nutrition plan. She auditioned for a ballet academy to start at the beginning of 2019 and was accepted; she was happy but in a tired way, and she knew that she would need to stop gaining weight but had no idea how she was going to do that when she had already been trying so hard.

In February 2019 we saw a naturopath who diagnosed our daughter with Adrenal Fatigue, and said her thyroid needed support, and that she still had lingering Epstein Barr Virus in her system.  The naturopath pointed to our daughter always wanting salt as an indicator of adrenal fatigue.  She was put on some herbal remedies for her immune system, inflammation and liver, adrenal and thyroid support, and relaxation/sleep support as well as Epstein Barr Virus liquid drops to help her immune system recognise the lingering EB virus in her system.

The weight started to instantly melt off, her sleeping improved and we felt we finally had some answers and a solution. Our daughter was happy with the weight loss, but still struggled with her other symptoms: dizziness, dry/gritty eyes, chest pain, tiredness, muscle and joint pains, extremely sore lower and upper back pain, brain fog, very low blood pressure, daily headaches, daily sore throat, complete lack of energy and occasionally sore under her right ribs (later on she told us that she couldn’t sweat, no matter how hard or long she exercised).

A month after starting the herbal remedies, she had her first panic attack during rehearsal for a school production – she had no idea what was happening and it took a long time to calm her down. Her mental and emotional state continued to decline, it was a daily struggle to do anything; she always had to push through every single day. We continued to take our daughter to the doctors for the sore throats, tiredness, headaches etc. but we were always told there was nothing wrong with her. During this time she got an infected toenail, and ended up being on antibiotics for twice as long as usual as it wouldn’t heal. The naturopath added in additional supplements to help, and eventually her toe got better.

Even though she was still losing weight, our daughter became very apathetic and would stay in her room – we would try to talk to her every day, try to reach her but she was shut off emotionally.  Then we ran out of one of the herbal supplements, and suddenly she began to gain weight again – she gained 2.8kg/6.2lbs in 2 weeks. Once we got her back on the herbal supplement she began to lose weight again, but it seemed to be slower and less effective. Our daughter got to 51.3kg (she is 5ft7 inches tall) and she was happy, and her ballet teachers told her to not lose any further weight as she was fine at the weight she was.

Hair Loss, Pale Skin, and Skyrocketing Weight

Halfway during 2019, our daughter’s hair started to fall out in clumps, it got to the point where she was too scared to wash or comb it, as it was falling out so much. We noticed our daughter was extremely pale, and at times she looked translucent. The naturopath put her on iron pills and told us to massage her scalp, but it didn’t really make a difference. The naturopath didn’t think she needed to be on the adrenal/thyroid support any longer, and was changing her supplements. Our daughter’s weight then skyrocketed, and our relationship with the naturopath started to deteriorate as she kept implying that we were starving our daughter and we felt she wasn’t able to answer our questions on why one particular supplement seemed to be the only one that would help our daughter lose weight, but she still had the other symptoms that were getting worse.

We took our daughter to other GP doctors, trying to explain her symptoms and asking for her thyroid to be checked, but we were continuously brushed off and they would look at our daughter and say it was just normal teenage hormonal stuff and there was nothing wrong. In our gut we felt there was something drastically wrong, but nobody would listen to us. We started to hate going to the doctors, going through her symptoms only to be told again and again there was nothing wrong with her, and being looked at like we had the problem, not our daughter. We started trying to research things ourselves, started tracking and monitoring everything she ate/did/sleep patterns. The naturopath would change the supplements and our daughters weight would skyrocket – we would then put her back on the original supplements and again she would start to lose weight, but every time it was less effective.

Low Metabolic Rate, Low Estradiol, Yeast and Bacterial Overgrowth, Constipation and Parasites

At the beginning of 2020, our daughter’s weight was going back up significantly and it seemed that the original supplement was no longer working at all. We realised that our daughter’s face and neck seemed to be more swollen on the left side, but couldn’t find any reason why it would be like this.  Our daughter started to get new symptoms around this time as well – from not being able to sweat at all, she started to have extreme sweating everywhere, and started to get hot flushes and night sweating.  We noticed that the hair on her upper lip was more noticeable/darker, and she started to get a small patch of hair just under the middle of her lower lip as well. She also started to get a very bloated around her stomach area, and couldn’t pull it in no matter how hard she tried.

In February 2020, we decided to try and get testing done ourselves, and found a functional doctor who supplied a variety of tests. We got a hormone and thyroid test, as well as a MTHFR gene mutation test.  We thought if we could show our doctor some factual data, we might be taken more seriously. The functional doctor advised us to also do an Organic Acid urine test, which we did as well.  The test results came back saying that our daughter’s total estrogen was so low that it was at the level of a post-menopausal woman, but the functional doctor thought that was because she was a dancer. The organic acid test picked up that she was in a hypometabolic state; again with the reason given that this was because she was an athlete. The organic acid test also showed that she had a significantly high amount of yeast and bacterial overgrowth in her gut, which would cause inflammation system wide and insulin resistance.

The functional doctor wanted to test for parasites as well, so we did a complete microbiome mapping test using a stool sample. While taking the stool sample, we were surprised that our daughter could only produce tiny, rock-hard little pebbles and we questioned her about it, we then found that she was constipated but she thought passing tiny pebble-type stools only every 3-5 days was normal.

While we were waiting for the microbiome mapping results, the functional doctor prescribed a total of 30 supplements/remedies as well as adrenal support liquid drops – these were to cover supporting biochemical pathways, weight management, cognitive support, anti-inflammatories, detoxification, liver support, hormonal metabolism, adrenal and energy support, amino acids to support cellular energy, mitochondrial NRG multivitamins to support cellular health, l-tryptophan to support sleep and neurotransmitter mood support. During this time she was also advised to stop all dairy (she was already gluten/sugar free and very low carb). We did take all of these tests results to our GP doctor, but were advised that they didn’t recognise these tests.

After a week of the new supplements, we noticed a complete shift in our daughter’s energy level and emotional/mental state. We were relieved to have our daughter’s personality back – it was literally like a heavy, suffocating blanket had been taken off her and she could finally think, feel and breathe again – it was a huge difference seeing her not having to mentally struggle through every single day. We did a lot of talking with her and she finally admitted just how numb she had felt to everything, but also scared that this was how she was going to be for the rest of her life.  The supplements did nothing for her weight, which continued to increase, and some of the other physical symptoms, but we were now clinging to the information that we knew she could lose the weight, and that now she could also be better emotionally and mentally with higher energy levels – we just had to figure out what was stopping her from having all of these things at the same time.

In May 2020, the microbiome mapping results came back, and we were surprised to find that our daughter an extreme level of a parasite in her system, called Blastocystis hominis, as well as an overgrowth of Rhodotorula fungi and a couple of other opportunistic bacterial overgrowths. The functional doctor immediately put her on a parasite/bacterial/yeast eradication protocol that was to be for two months, and then we were supposed to follow that with 6 months of a rejuvenation program.

When our daughter found out it was a parasite that was making her sick, she was absolutely ecstatic. She had loved ballet her whole life, but thought it was ballet making her sick so had been pushing it away which had been hurting her emotionally – it hurt her to think that the thing she loved the most was hurting her. Now that she knew it was instead a parasite making her sick, she felt she could allow herself to love ballet again. While waiting for the herbal remedies for the eradication protocol, we started to research the parasite, and started to become very concerned at just how difficult it was to get rid of it, and the devastating symptoms/damage that it could do.

Looking at other protocols that were used to get rid of this particular parasite, the remedies weren’t the same as the ones prescribed by our functional doctor, so we questioned if these particular remedies had been used for this parasite before and if they were successful. We were assured that these remedies had been used and were definitely successful.

Failed Treatments and Inconclusive Diagnoses

Our daughter started on Australian Oil of Oregano, 6 capsules a day totalling 900mg of essential oil each day, as well as 6 capsules of a GI-Microbe remedy for worms. After a week she noticed she had a very itchy bottom and a sore stomach. Our GP doctor wanted to check for PCOS because of the lack of menstrual period and her hair falling out, so our daughter had a pelvic ultrasound 6 days after starting the Oil of Oregano. The sonographer couldn’t see anything in the ultrasound because of the amount of gas (it looked like billowing black clouds on the screen), so after a lot of discussion due to our daughter’s age, she had an internal ultrasound. The sonographer was surprised that it was still hard to see anything due to the amount of gas, so could only see one ovary and a small piece of her uterus, which the sonographer said looked good and didn’t indicate there was PCOS.

During the following week our daughter’s stomach pain became more intense, and her weight was skyrocketing. We started to get very concerned at her escalating reactions but kept being reassured by the functional doctor that this was normal. After 20 days of being on the Oil of Oregano we decided to take our daughter off all of the supplements as we felt they were just making her worse. All of the literature on the parasite Blastocystis advises that you need to wait 8 weeks before doing PCR stool testing to see if the parasite has been eradicated or not. We are currently waiting until 10 August 2020 at the earliest to be able to test to see if the parasite is gone. Since this Oregano treatment, her stools are now every day and better consistency (they were floating which we think is fat malabsorption issues?) and her menstrual period has returned. Her appetite has also reduced, and she isn’t craving carbs and sugar as she has now revealed she used to.

Since then our daughter’s weight has continued to increase at a rapid rate – in total from 27 January 2020 to 31 July 20202 she has gained 14.5kg/32lbs, with 10kg/22lbs being in the last 2.5 months.  She can physically no longer do ballet, so she sits and watches in class instead. After joining a Facebook group for the parasite Blastocystis, we have been seeing a naturopath in Australia via Zoom who had the parasite themselves. We are currently waiting on a SIBO breath test results as the naturopath thinks our daughter also has SIBO. We spend all of our time trying to research all of our daughter’s symptoms, while watching her physically deteriorate. It has totally consumed our family.

Where We Are Now: Was It Thiamine All Along?

Our daughter is in a better mental/emotional space, but doesn’t physically recognise her body at all.  Even our daughter’s orthodontist asked why she was so swollen in her face, especially the left side – but the doctors still don’t think there is anything wrong. Our daughter’s physiotherapist is too scared to touch her, as she is so swollen. We spend every day crying at some point. While researching SIBO symptoms, we came across a comment about Thiamine deficiency, so started to research and bought the book “Thiamine Deficiency Disease, Dysautonomia, and High Calorie Malnutrition”.  Reading about the swelling of the face, and that it is fluid retention in the body was a revelation. But because of what happened with the Oil of Oregano, we are too scared to try doing something on our own and potentially making it worse, and the more we research, more of the other co-factors, we keep finding and things to be careful of. We have been to our GP doctor asking them to investigate if it could be beriberi, so they have started doing blood tests, but then we found in the appointment notes that the doctor still thinks our daughter looks well, so we are disappointed that it looks like they are not taking this potential diagnosis seriously.

Currently we’re waiting on Allithiamine and Lipothiamine to arrive from Australia, as we can’t purchase it here in New Zealand, but with Covid-19 there are huge delays in postage. We have started our daughter on 150mg of Benfotiamine (even that was extremely difficult to find in New Zealand) but at this stage we are hesitant to just ramp up the dosage to see instant results. We took our daughter back to the chiropractor who now advises that her kidneys/bladder aren’t working properly, and also that her vagus nerve isn’t working either. Just this week, we have taken her to an acupuncturist to try and help with the fluid retention, and they’re concerned about her heart and liver and just how swollen she is. We have added in legumes to her diet to help with bile function/detoxification and her stools are now increasing and no longer floating. We are now wondering if maybe she was hypoglycaemic as well.

Reading the comments on the Thiamine Deficiency Facebook group, we should also be looking at potassium supplementation, but conversely you shouldn’t supplement with potassium if there is something wrong with your kidneys. With the doctors not believing us, alternative practitioners wanting to potentially only push their own agenda/supplements or not fully understanding the full consequences of their remedies, or not being able to find out what the root cause of the problem is, and the conflicting information all over the internet, we are completely lost/scared/petrified/confused and feel a huge pressure to fix our daughter and it feels like time is rapidly running out. The stress on us as parents is completely overwhelming, and financially we feel like we are throwing money at this ever-increasing problem and the money is fast running out. We feel that every day is getting worse than the day before, and our hope has faded to a tiny pinprick of light. Gathering all of the information together for the doctors/alternative practitioners/supplements/nutritionist plans/tests looks absolutely ludicrous, but when you’re in the thick of it you’re completely desperate to find anything that could potentially fix your child. Then when it doesn’t work, or it makes the symptoms worse, the guilt is huge.

We’re hoping that by publishing her story on Hormones Matter, others might look at our daughter’s case history, and confirm what is wrong, explain it to us so that it makes sense, and help us fix her in a safe way.

Current Diet and Supplements

Below is a snapshot of our daughter’s typical diet and supplement regime. Please note, the Benfotiamine was begun only recently.

Breakfast Morning Tea Lunch Afternoon Tea Dinner Water/Teas and Remedies before bed
Douglas Labs Ultrazyme x 1 1 large gold kiwifruit Douglas Labs Ultrazyme x 1 50gm Coconut Yoghurt 105gm Roast Beef 3 x Magnesium Citrate (Pure Encapsulations)
2 Egg Muffins – Bacon/Veg 2 teaspoon sunflower seeds 90gm tin pink salmon with probiotics 0.5 cup roast pumpkin
2 Tablespoons Pumpkin Seeds 1 cup Almond Milk 1 cup green Kale/Pak Choi (homegrown) 10 almonds 0.5 cup broccoli
1 Tablespoon Apple Cider Vinegar 2 x Tran-Q 1 cup tomatoes 1 Apple 0.5 cup peas
2 Brazil Nuts 0.5 cup cucumber 2 x Tran-Q
1 scoop Orthoplex Gut Rx 0.5 cup grated carrot
1 X HPA Essentials Tablet 0.25 cup brown rice
** 1 x Doctors Best Benfotiamine 150 1 Tablespoon mashed Avocado
1 teaspoon flaxseed oil
1 tablespoon lemon juice
1 X HPA Essentials
1 scoop Orthoplex Gut Rx

** Benfotiamine was just recently added as of July 25, 2020.

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More people than ever are reading Hormones Matter, a testament to the need for independent voices in health and medicine. We are not funded and accept limited advertising. Unlike many health sites, we don’t force you to purchase a subscription. We believe health information should be open to all. If you read Hormones Matter, like it, please help support it. Contribute now.

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Image by Dimitris Doukas from Pixabay.

This story was published originally on August 10, 2020. 

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Intense Exercise, PCOS, and Hypothalamic Amenorrhea

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Understanding PCOS and Hypothalamic Amenorrhea

Polycystic ovarian syndrome (PCOS) is an endocrine disorder characterized by various signs: irregular periods, anovulation, high androgens, and insulin resistance. Because it is a syndrome, it presents differently in every person. Two women might have PCOS and have completely different symptoms. The signs through which it is often diagnosed will also vary. For instance, insulin resistance is very common, along with excess weight, but someone with no insulin resistance and at a perfectly normal weight could have it as well.

Hypothalamic amenorrhea (HA) is characterized by anovulation and absent periods. With PCOS there is usually one or more hormones that are high, such as luteinizing hormone (LH), or testosterone, in most cases of HA, hormones are low. Hypothalamic amenorrhea is usually present in athletes and women who under eat and/or are underweight. It can also appear in times of acute stress, after a strong emotional shock, but also, due to chronic stress.

Something that not many people talk about is that the two conditions can co-exist. For instance, it is very possible for someone with PCOS to go on an extremely restrictive diet and lose their period as a result. In the same way, someone with PCOS can over-exercise and lose their period, because these women usually have irregular periods, pinpointing the diet or the exercise regime as the cause for the new hormonal imbalance isn’t always easy. Features of one condition can be present in the other, which further proves why looking at the lifestyle of a woman is imperative before setting a diagnosis.

My Battle With PCOS, HA, and Exercise Intensity

I was diagnosed with PCOS a couple of years ago when I got off the pill. In my teens, the condition had been suggested based on ultrasound and symptoms, but I was never told to do any further testing.

At almost 32, I was through with the side effects of the pill: anxiety, depression, low libido, and more. I had been on it without a break for over 12 years and a few more years on and off before that. My cycles were never regular, but the doctor’s only solution was birth control. So far, I’m sure this is nothing out of the ordinary and is in fact something that most women with PCOS experience. My story is slightly different though.

At 8 years old, I was diagnosed with scoliosis, a condition in which your spine curves into an S shape. Due to my young age, there was a huge risk it would progress rapidly, and I would end up needing surgery.

My family wanted to avoid that at all costs. The surgery is not without risks, and the prognosis, at least at that time, over 20 years ago, was not good. The chances of living a normal life post-surgery were small. So, they decided to take a different approach: managing the condition through sports, specifically swimming.

By the age of 9, I had a pretty good swimming schedule. Most of the school year, I would swim 3-4 times per week, an hour a day, and do some gymnastics at home on the other days. Then, 3 months per year I would train intensely, swimming 2-3 hours per day, usually 6 days a week. I loved it, I would have spent all day every day in the water, so I was far from complaining!

Somewhere around the age of 11, I got my period. Right from the start, it was irregular, happening anywhere between 35-60 days. That wasn’t ideal, but I wasn’t having any other symptoms that something was off.

Then, I experienced the first “odd” thing. My swimming season started, and everything proceeded as normal with my many hours spent at the pool. Halfway through, I realized I hadn’t gotten my period in quite some time, way longer than usual. The season ended, and a few more weeks went by, and still no period in sight. Finally, after about 2 or 3 months after the swimming season had ended, I got my period back.

For the rest of the time, I continued with my irregular pattern of 35-60 days. The year went on and the swimming season got back. Guess what? My period vanished again, only to return about 2-3 months after the season had ended.

The pattern repeated each year. Finally, when I was around 15 my mom decided to take me to see a doctor. Again, it was well beyond 3 months since I had had a period. The doctor did an ultrasound and didn’t see anything abnormal, so he decided to put me on the pill. I stayed on it for a few months, then quit, and the cycle of irregular periods, that would completely stop when I was exercising intensely, continued.

I had a few more ultrasounds in the years that followed, at different times in my cycle. During a few of them I had polycystic ovaries, so PCOS was suggested, though an official diagnosis was not made at the time. Also, nobody ever considered requiring blood work for me. Just like nobody ever suggested that the workouts could be the root cause of my missing periods for half of the year.

It was only many years later, while I studied to become a health coach and a fitness trainer that I became more interested in the relationship between hormones and workouts and learned about hypothalamic amenorrhea in female athletes.

Covering Up PCOS and HA with the Pill

When I left for university at age 20, I decided I would stay on the pill. The on-and-off pattern was making me feel less than well. I would always get mood swings coming off it, and I wasn’t having any of that in a new environment.

For the first few years, I was ok, or at least I thought I was. I continued working out, but because I had developed a slight allergy to chlorine, I had to start looking at different sports. I discovered fitness, and later yoga. During many of these years, I continued training intensely. I loved doing it and I decided to become a trainer. Being on the pill, I had no way of knowing if my reproductive system was reacting or not.

It was during those years that I was introduced to the concept of hypothalamic amenorrhea. I remember feeling pretty mind blown that neither my OBGYN nor my GP had ever mentioned it. Nobody had ever even mentioned the risks of HA or taking birth control pills to “cover up” HA.

Coming Off of the Pill and Listening to My Body

A couple of months before my 32nd birthday, I decided enough was enough and I quit the pill. Thanks to all the years of training, plus studying to be a trainer and a coach, I learned to listen to my body. I could feel how it was rebelling more and more against the pill. On top of the health issues, I developed anxiety, panic attacks, and depression that were getting worse and worse out of the blue.

I started doing a lot of research about hormonal health, PCOS, and HA – and I do mean A LOT. I have a PhD. It is in computer engineering, mind you, but the point is I’m a bookworm and research is my middle name. With each new book, or new research article that I read, my mind was blown, but I’m getting ahead of myself.

Coming off the pill, I experienced something very common: my body didn’t know how to restart itself. I went 5 months without a period. My doctor’s answer was more birth control, a different brand maybe. “I only experienced side effects to one brand, they’re not all the same”, she said. Thanks, but no thanks. I’m not going down that road again.

Again, I was faced with the same issue: nobody questioned me about my lifestyle. Someone suggested I go on a low-calorie, no-sugar diet since I have PCOS. They didn’t bother to ask me how much I exercise or even what I currently eat. In case you’re wondering I’m right in the middle of the perfect weight for my height, I have absolutely no reason to go on a low-calorie diet or to lose even one pound.

The Most Dangerous Advice for PCOS: Just Lose Weight

While the low-calorie advice was ridiculous for obvious reasons in my case, and it made me turn my back to that doctor without any remorse, it did shed light on the most common (and most dangerous) advice, women with PCOS receive: just lose weight.

Lose weight, and all your hormonal troubles will go away.

Look, I’m not saying losing weight won’t help some people. What I am saying is that the way this problem is perceived is dangerous and unhealthy. Just look at all the people who saw me, who knew about my lifestyle, who had all the evidence right there in front of their eyes and they didn’t even consider the over-exercise (and subsequent weight loss) that happened when I was training could be to blame.

PCOS Versus HA

Before writing about the changes that helped me, I want to go a bit more in-depth on the two conditions, why they are so easy to confuse with one another, and why having one, doesn’t necessarily exclude the other.

We already know both are conditions that affect the reproductive system. While PCOS is an endocrine disorder with unclear causes, HA is triggered by lifestyle. You can reduce (or worsen) your PCOS through your lifestyle, but that is not the ultimate cause.

Common misconceptions say with PCOS you’ll be overweight, whereas to have HA you need to be underweight. Both are false. Lean women can have PCOS, and normal to overweight women can have HA.

The latest research says you need to have 25+ follicles (commonly called cysts) on your ovaries to have PCOS. That’s because polycystic ovaries can be present in HA as well, though it is rarer.

The fact that restrictive diets, over-exercise, and acute or chronic stress can stop the communication between the hypothalamus and your ovaries, and eventually cause HA is known. Due to their similarities, a constant evaluation of symptoms alongside lifestyle is necessary. Especially when a woman with PCOS begins a new diet or a new workout routine, following her evolution closely for any symptoms that could show her new regime is causing more trouble, is crucial.

You don’t have to go into full hypothalamic amenorrhea (low hormones, no periods, no ovulation attempt) to be impacted negatively by over-exercise. It is, for the biggest part unclear whether I had true HA alongside PCOS, or I was just somewhere in the middle. However, it is undeniable that high-intensity exercise affected me each time. It is also undeniable that as soon as I would take it slow and even gain a bit of weight back, my body would be back to what was normal. I was lucky because I had an offseason that was longer than the training season. If I hadn’t had that, the outcome could have been a lot worse.

Healing PCOS and HA: Nutrition, Low Impact Exercise, and Relaxation

A few months after coming off the pill, I had blood work done and I began working with a naturopath, trying to understand what was going on. As much as I would have liked to be in one category or the other, I didn’t fit anywhere. I had a high LH:FSH ratio, common in PCOS (but not completely excluded in HA). My uterine lining was not building up, also very common in HA and very uncommon in PCOS. My testosterone and DHEA-S were normal, my androstenedione was on the high end of normal. Ultrasound revealed cysts, but not 25+, only about 15. My thyroid was normal, and so was my prolactin. All in all, my tests looked very close to normal, except I wasn’t ovulating.

To recover my health, I decided to take the middle ground. For my PCOS, I went ahead and eliminated foods that I was somewhat intolerant to such as cow’s dairy, gluten, and sugar. I’m not saying this is a cure for everyone, but I have always known I wasn’t digesting these well. I always had inflammation symptoms after eating them in excess including headaches, joint pain, and digestive issues. However, I took a lot of care to eat enough. I allowed myself the occasional treats. For instance, I discovered raw vegan cakes that make me feel amazing and are perfect for my sweet tooth. I didn’t run away from carbs and I made sure I included lots of healthy fats.

With PCOS as my main diagnosis, I was, of course, encouraged to continue my normal exercise routine. At this time, this consisted of HIIT 1-2 times per week, strength training 2-3 times a week, and Ashtanga yoga (a dynamic, strong style of yoga) the rest of the time. Technically it wasn’t much, and it was certainly a reduction considering my background.

I’d been feeling less and less well after HIIT, so I knew something had to change. I decided to go against every advice I’d heard for PCOS and cut back on everything except yoga, which I now do daily. My scoliosis is still very much with me, so doing no exercise at all, which is usually the recommendation in HA, is not an option. I changed the type of yoga and introduced yin and restorative yoga 2-3 times per week.

A few months after deciding to switch to yoga only, I found a medical study proving the benefits of yoga and mindfulness for PCOS. I take it as a sign that we might finally see a change in the constant recommendation to eat less and eat harder, which is mindlessly recommended to most women with this condition.

On top of nutrition and changing my workout routine, I’ve also created a non-negotiable relaxation time. Whether I read, paint, spend time with friends and family or go for a walk outside in nature, I make sure each week my schedule includes relaxation. It has taken quite a few months since implementing all these changes, but I can say my cycles are regular for the first time in my life.

Bottomline: You Can Recover Your Health

If there is one lesson that I’d like you to learn from this story is to listen to your body. Truly listen. Watch out for any changes, both positive and negative, and when you see something negative, take a step back. If you’ve just started exercising and are experiencing amenorrhea, for instance, you don’t have to stop exercising, just take a step back, exercise one day less, do something less intense, or use a lower weight. Like anything, health requires attention.

We Need Your Help

More people than ever are reading Hormones Matter, a testament to the need for independent voices in health and medicine. We are not funded and accept limited advertising. Unlike many health sites, we don’t force you to purchase a subscription. We believe health information should be open to all. If you read Hormones Matter, and like it, please help support it. Contribute now.

Yes, I would like to support Hormones Matter.

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If you have experience with PCOS and/or HA: share your story with us.

Photo by Johanna Steppan on Unsplash.

This story was published originally on August 5, 2020. 

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Treating Infertility with Specialized Pelvic Therapy: A Natural Approach That Works

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In a 10-year study of 1392 infertile women, manual physical therapy yielded high pregnancy rates for women in three categories of hormonal infertility. Subsets of participants showed success for women with endometriosis, polycystic ovarian syndrome (PCOS), and high FSH (follicle-stimulating hormone).
The therapy was originally designed to treat pain due to the adhesions that form when the body heals. Adhesions tend to remain in the body, acting like an internal glue after healing has occurred. Adhesions can act like tiny straitjackets, causing pain or dysfunction – including infertility.

Endometriosis adhesions

Endometriosis, Infertility and Adhesions

Endometriosis is considered both a mechanical and a hormonal condition, with adhesions frequently accompanying endometrial implants. The therapy is designed to decrease the cross-linking, the tiny but powerful white attachments shown in the drawing. In the 10-year study, 43% (128/299) of the women diagnosed infertile with endometriosis became pregnant after receiving the therapy. This rate compares well to surgical success rates, but without the costs or risks of surgery.

PCOS and Infertility

In the study, 54% (15/28) of women diagnosed infertile with polycystic ovarian syndrome (PCOS) achieved pregnancy after therapy. While this is a smaller subset, this rate is encouraging; it is much higher than the 22% to 33% pregnancy rates achieved after surgeries cited in the study. In surgery for PCOS, the physician will either drill holes in the ovary or remove a wedge-shaped portion of the organ. One reason for the low pregnancy rates after PCOS surgery may be the new adhesions that form as the body heals from the surgery.

High FSH Infertility

pregnancy rates for women with high FSHOne of the biggest surprises in the ten-year study was in women who were diagnosed hormonally infertile due to high FSH (follicle-stimulating hormone). As a woman approaches menopause, her ovaries demand more and more FSH to stimulate egg growth in older follicles. Measured early in the menstrual cycle, most physicians feel a woman’s FSH levels should be at or below 10 mIU/mL. When a woman’s FSH is above 10, she is considered unlikely to conceive. At FSH of 25, the woman is generally considered to be menopausal.

In the 10-year 2015 study, a surprising 39% (48/122) of women diagnosed subfertile or infertile due to high FSH became pregnant after receiving the therapy; 43 of the pregnancies were natural, and five were by follow-up IVF.

“The data with these women has been absolutely remarkable” said Belinda Wurn, director for Clear Passage Physical Therapy. “Before this study, nothing in medicine has been shown to improve FSH and fertility naturally. Until now, none of us imagined that a manual therapy could have such profound effects, without surgery or drugs.”

The therapy (Clear Passage Approach™) is available at a dozen locations in the U.S. and the United Kingdom. Treatment consists of 20 hours of hands-on care described as “feeling like a deep, site-specific massage.” The therapy is often given 4 hours a day for 5 days. For more information, visit clearpassage.com.

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More people than ever are reading Hormones Matter, a testament to the need for independent voices in health and medicine. We are not funded and accept limited advertising. Unlike many health sites, we don’t force you to purchase a subscription. We believe health information should be open to all. If you read Hormones Matter, like it, please help support it. Contribute now.

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Feature image: Tulia Colombia Torres Hurtado Pixabay

This article was published originally on August 15, 2017. 

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PCOS, Pregnancy, and Lactation: Why Ovulation in Your Teens Matters

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PCOS and Irregular Periods in Teens

Polycystic Ovarian Syndrome (PCOS) is one of the most common hormonal disorders for women. It is both a metabolic and endocrine disorder, which means it affects insulin production, metabolism, and reproductive hormones. Contrary to its name, it doesn’t necessarily mean you have polycystic ovaries. In fact PCOS has many different faces. PCOS symptoms include irregular periods, difficulty conceiving, hirsutism, acne, and obesity. Research is now uncovering that you may not exhibit any of these symptoms but still have the disorder. This means that PCOS is either commonly misdiagnosed or not diagnosed at all.

The standard treatment for teenagers with irregular periods is hormonal contraception. On the surface it seems to fix the problem. It gives them a regular bleed and often clears up pesky acne. The seemingly regular ‘period’ is deceiving, however. It is not a menstrual cycle. There is no ovulation while on hormonal contraceptives and the bleeding is simply what is called a ‘pill withdrawal’ bleed; meaning if she were not to cease taking the pill every month, she would never bleed.

Hormonal contraceptives trick the body into thinking it has already ovulated by providing a steady stream of synthetic hormones, which override brain and ovarian function giving negative feedback to tell the brain to halt any hormone production. In a healthy and functional cycle, there is a wax and wane for all of the reproductive hormones – kind of like an orchestra. All hormones have a part to play. Estradiol and progesterone, the two dominant ovarian hormones, balance each other out and protect bone and heart health as well as the development of the immune system. Having a period is much more than an accessory, it should be considered the fifth vital sign of health for women. A woman on hormonal contraception is not simply not ovulating and menstruating, she is missing out on the benefits of endogenous hormones while also losing time to get to the root issues of her hormonal disorder.

Though it is worth noting that some irregularity is to be expected during the years of puberty, for other girls’ irregularity can be indicative of a hormonal disorder like PCOS. This is concerning since a teenager with PCOS might spend the next 15 years on the pill and not think twice about it. When she is ready to conceive, she will get off of the pill and is likely to find conception difficult, depending on the severity of the underlying PCOS that led to pills in the first place.

Conceiving With PCOS

Since irregular menstruation (and therefore irregular ovulation) is common with PCOS, this is the most obvious obstacle in conceiving. If a woman is not ovulating, she cannot conceive. But that is not the only obstacle in conceiving with PCOS. Women with PCOS often have altered levels of androgens as well FSH and LH which all affect the cycle. Even if a woman with PCOS conceives, if these hormone levels aren’t addressed at the root, a pregnancy could likely need many interventions – as well as the birth and postpartum.

Without proper support, a woman may turn to IVF which might yield a baby, but is unlikely to solve her underlying hormonal disorder. In many cases, IVF could even worsen her health. In this 2014 study researchers concluded:

“Women with PCOS are at an increased risk of adverse pregnancy and perinatal outcomes, which could not be explained by assisted reproductive technology. These women may need increased surveillance during pregnancy and parturition. Future research would benefit from focusing on glucose control, medical treatment and hormonal status among women with PCOS during pregnancy.”

Postpartum and Lactation with PCOS

We know that the more interventions that are needed in a pregnancy and birth, the more the risk of trauma and stress increases. Birth interventions often delay lactogenesis II, the stage of milk production where colostrum transitions to the white viscous milk that we commonly think of when we imagine breastmilk. This transition usually occurs within 24-48 hours after giving birth, but we often see it delayed as long as 4 or even 5 days after a traumatic birth.

Furthermore, while research is still developing in this area, there is enough data to support the idea that PCOS (and its accompanying insulin resistance) plays a major role in milk supply. This study showed that a particular gene is expressed more prominently when a mother is insulin resistant, than in insulin-sensitive individuals. This gene is intricately tied to milk production.

Milk Supply and Insulin Resistance

Let’s talk about breast milk supply for a minute. The two main things that drive milk supply: 1) prolactin production (think baby or pump suckling on nipple, this corresponds with surge in prolactin) and 2) sufficient glandular tissue. As a lactation counselor, when someone comes to me with “low supply”, the first thing I need to parse out is if this issue is baby sourced or parent sourced. Does mom have an adequate supply, but the baby isn’t able to get it and the body responds in classic supply demand fashion by lowering the supply OR is the mom truly unable to make a full milk supply? Clinically it is usually the first option, but occasionally it is the second.

To make an adequate supply on the mom’s side, she must have sufficient glandular tissue. This means that the breast tissue grew appropriately at the time of puberty as well as during pregnancy (this is the final stage of maturation for breast tissue). And of course, it needs to contain enough milk ducts. We know that insulin has a direct action on the mammary glands during breast development. To develop adequately, breast tissue cells must remain insulin sensitive. In this study on mice, “It was found that both IGF-1 and IGF-2 activate the expression of milk protein β-casein in the presence of prolactin and hydrocortisone. It was found that β-casein expression is accompanied by cyclin D1 co-expression.” This means that fewer receptors = fewer milk ducts. And most importantly, this means that breast development during puberty has implications later on in reproductive life.

Moms with Hypoplasia, or Insufficient Glandular Tissue (IGT), don’t all have the same breasts. Size is not indicative of the quantity of glands. IGT breasts can be big, small, medium, round, flat, high or low – the only thing they all have in common is that the glandular tissue is simply not sufficient to make a full milk supply. The biggest indicator of IGT is if a mom’s breasts do not grow during pregnancy. This is usually a huge red flag. However, with the right support, moms with Hypoplasia can still breastfeed. It often looks like adding in supplementation with either donor milk or formula, and sometimes supplemental nursing systems may be used. Some women with PCOS have lactation troubles, but others do not. Women can have insulin resistance without PCOS, but still have lactation trouble. Women can have PCOS and insulin resistance and have no lactation trouble. While less common and much less understood, women can have lactation trouble (in the form of IGT) without PCOS or insulin resistance.

In the case of a mom with insulin resistance, and especially a missed diagnosis of PCOS, they may have no idea what could possibly be causing their low milk supply. Being labeled “IGT” often feels defeating and devastating. If they struggled to conceive, the mom may feel that their body is simply working against them every step of the way on their journey to motherhood. This increases their risk of postpartum mood disorders and it becomes a bit of a domino effect.

The Importance of Diagnosing PCOS (and other Disorders) Early

So how do we nip this narrative in the bud? It is a simple answer with a not so simple execution. For starters, health care providers need to prioritize regular, functional ovulation for teenagers. Rather than being put on the pill at 15, struggling to conceive at 30, going through IVF, and having difficulty producing milk – this story could be radically changed at its first juncture. This also extends to women in their 20’s and 30’s and even into their early 40’s – a time when cycles should be regular and functional, unless a woman is breastfeeding (in which anovulation is biologically normal). Hormones change throughout reproductive life. A teenager may have PCOS but the symptoms may not become apparent until after their first birth or during a really stressful period in their life. Health care is fluid and should move along with women as they shift and transition through different seasons in life. The importance of getting an annual exam and pap smear are commonly emphasized to women – but little do we emphasize the benefits of getting a hormone panel done periodically to check in. In some cases, a full hormone blood panel isn’t even necessary. You can get enough information from your symptoms and a Fertility Awareness Based Method chart.

Prioritizing Women’s Menstrual Health

If we are prioritizing functional and regular ovulation for women (and therefore balanced hormones), women can mitigate their symptoms and learn to live with PCOS. While there are no hard and fast cures for PCOS currently, there are many ways to manage it. Some of these variables are in a woman’s control (diet and exercise) while others are much more systemic, cultural, and political such as access to nutrient rich food and health care resources. In industrialized nations, cultural priorities do not often support general health and in modern life, we are exposed to more blue light, less sunlight, and we are chronically over-booked causing higher cortisol levels which also affect insulin sensitivity. But this is a conversation best saved for another day.

It should also be noted that a PCOS diagnosis doesn’t necessitate impaired glucose tolerance. Since PCOS operates on a spectrum (which doesn’t even necessarily correspond with symptoms!), there are many variables at play. The most important takeaway here is that insulin resistance does seem to play a role in breast tissue development and teens with PCOS, which is often misdiagnosed, may miss out on crucial breast tissue development.

In any case more information is critically needed. We cannot ignore this too common condition anymore. More knowledge on hormonal disorders and insulin resistance and lactation deserves to be studied. If you find yourself with either a PCOS diagnosis or lactation struggles, it is worth finding the practitioner who is willing to help you dig deeper and get more answers. This process isn’t easy. There are certainly cases that seem unanswerable, but the more we hear about them, the more we can learn about them.

We Need Your Help

More people than ever are reading Hormones Matter, a testament to the need for independent voices in health and medicine. We are not funded and accept limited advertising. Unlike many health sites, we don’t force you to purchase a subscription. We believe health information should be open to all. If you read Hormones Matter, like it, please help support it. Contribute now.

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Almost Bleeding to Death Monthly Is No Way to Live

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At age 23, I woke up from an ovarian surgery to the comment, “It’s not cancer, but you have moderate endometriosis. If I were you, I’d get pregnant as soon as possible.” Having only been married for a year, and not yet stable in our financial situation, we just laughed, not really understanding what the doctor meant. And I decided to go right back onto the birth control pill.

Five years later, at age 27, on our anniversary trip we decided it was the perfect time to get off of the pill and try getting pregnant. I remember throwing the packs of pills away, excited for the future to come. Little did I know that would start a whole snowball effect that would ultimately take my health and my fertility.

A year later, I was starting to have odd symptoms. I began having massive acid reflux that was burning my voice box severely. I was quickly started on a Proton Pump Inhibitor. I was never told that it should’ve been a limited time treatment, so I continued taking them. Pretty soon, I started having issues with my menstrual cycles. I noticed that the bleeding was getting heavier and heavier and the pain was increasingly getting worse. It never occurred to me that any of that was in any way abnormal. I just figured it was part of being a woman, and I needed to suck it up.

Severe Menstrual Bleeding and Panic Attacks: Unrecognized B12 and Iron Deficiencies

On October 6th, 2006, I woke up to severe bleeding and panic attacks. My husband rushed me to the doctor where I was diagnosed with severe iron deficiency. My ferritin (stored iron) was incredibly low; almost non-existent. I was sent home with iron pills and instructions to take them once a day. Quickly my health began to decline, and many mornings I would wake up in a sweat and a full panic. I knew something was wrong but all of the tests kept coming back normal. Two years later, when my doctor retired, I received my records and immediately noticed my B12 was also extremely deficient, so I started supplementing B-vitamins on my own. I slowly gained a little energy back, and was able to function semi-normally for a while, however, I still had this underlying anxiety that I couldn’t shake.

Back on Birth Control and Still No Relief

My next option was to go back onto birth control and see if it would control the increasingly heavy and painful menstrual cycles I was having. Unfortunately now, any pill I tried, my body and my anxiety went into a major downward spiral, leading me to quickly come off of any hormone pills.  By this time, I was seeing multiple doctors. My bleeding had become very uncontrollable, and I was soon diagnosed with a fibroid. I considered Uterine Artery Embolization, but at that time my fear of losing my fertility was too prominent to go ahead and proceed with the surgery. I continued to increase my iron intake, and after lots of research, I learned a regimen that seemed to work for me. Regular lab testing showed me constantly dropping in iron and blood levels, and then recovering some, and then dropping severely again when my cycle came around. Eventually my cycles got so intense that I was having to use incontinence overnight pads instead of the regular menstrual pads. It was a nightmare. I began to get more and more bed ridden and ended up having to bring in outside help to just help me get through my day, while my husband went to work to provide for our home and my medical needs.

Dropping Blood Pressure, Skyrocketing Heart Rate: I Was Close to Dying

The day after Thanksgiving 2013, which my husband and I had spent alone due to my inability to leave the house, found me unable to get up without almost passing out. My blood pressure was incredibly low and my heart rate was more than 160 beats per minute. I brushed it off as anxiety, but my neighbor who was a paramedic’s wife came by and took one look at me and told me, “Get to the hospital RIGHT NOW!!!” My husband loaded me up into the car and we went. I wasn’t a stranger to the emergency room, but was usually sent home with the comment “take more iron” or “go see your doctor” (which I was, but evidently I wasn’t getting the monitoring or treatment I needed).

So I sat in a wheelchair in the waiting room, waiting for my turn to be called and suddenly two nurses ran out of the doors and headed for me. I looked at my mom who had joined us at the emergency room, knowing instantly this couldn’t be good. There were people who were sicker than I, throwing up all around me. The nurses grabbed my wheelchair and as they wheeled me back I heard a nurse say, “Sweetie you don’t have enough blood in your body, we need to start you on a transfusion right away.” I immediately burst into tears, looking back for my mom and my husband for reassurance. I was terrified of transfusions. I had only ever heard horrible things about them. About allergic reactions, and new diseases transmitted through them. I was absolutely terrified. Through my tears, (which I felt stupid for, because I figured I was old enough not to cry), the nurse quickly and quietly reassured me it would be ok. She said they’d start it slow and keep an eye on me for any reactions, and no, I wouldn’t contract any new diseases. She assured me that transfusions were entirely safe. The flurry of activity around me was overwhelming, and during a small break in the chaos I asked my husband to take a picture of me because I wanted to see what I looked like.

Near death with heavy bleeding

My husband hates that picture now. I think it scares him quite a bit. But I keep it in my computer files to remind me how close I came to dying that day. My skin was so pale it was almost non-existent, yet somehow I was extremely yellow. The lack of blood in my system was shutting down my organs, and I spent the next three days in the cardiac intensive monitoring ward.  During this time I received three transfusions.

Bleeding to Death Monthly with No Answers from the Doctors

When I was released from the hospital, I was sent home with more iron pills and an explanation that my stored iron (ferritin) was completely non-existent. When you bleed and don’t have the raw materials to make more blood, your blood levels drop and it can get dangerous. I had no idea that I had let it get to a point where I was so close to having a heart attack from the lack of blood in my body. My doctors apparently didn’t understand it either, as they kept sending me home with little regard for the severity of my condition.

I was determined to not let it happen again. Visits to the doctor didn’t produce any new treatment plans. Unfortunately, my doctor didn’t seem to get the severity of the situation and left me to self-manage my iron and blood levels. The next month when my cycle started, I found myself back at the ER receiving more blood since I had bled out all of the previous month’s transfusions. And so started a vicious cycle: one of receiving transfusions, and starting to be okay and gaining some life back in me, and then starting my cycle, and losing more than the transfusions had given me. For the next 5 months, it became a bi-monthly habit to visit the ER, get my blood replenished and be sent home.

Uterine Artery Embolization to Stop the Bleeding: Pain and Other Problems

Finally, in March of 2014, a new ObGyn suggested a Uterine Artery Embolization again.  It is a procedure where they go in through your femoral artery and place plastic pellets to shut off arteries to fibroids and other areas of your uterus. By this time the scans showed I had “innumerable fibroids”. Knowing that the UAE would probably remove the possibility of me ever being able to have a child naturally, my husband and I discussed the pros and cons and made the decision that I needed to have this done. Bleeding to death every month just wasn’t worth it anymore. So, a couple of weeks later I underwent the most painful surgical experience of my life. Imagine giving your uterus a heart attack, by cutting off its blood flow. The next 8 hours were a blur of holding my belly and crying and looking for my mom to help me breathe through the intense contractions that didn’t let up. The pain medicine didn’t even touch a fraction of the pain. Finally, at 12 hours the pain let up as my body learned how to reroute some blood flow to keep my uterus alive, while keeping the blood vessels to the fibroid tumors shut off. I went home to recover, believing it was done.  I was looking forward to more normal cycles and healing my missing nutrients and blood I had lost during this whole ordeal.

Unfortunately, that was not to be. Five weeks after the procedure, I began to hurt severely and ended up passing a fibroid that was 3 inches long. This sent me once again to the emergency room where the bleeding became enough to require another transfusion. I was devastated and I just started sobbing. I knew at that moment it hadn’t worked. The next 10 months were a blur of doctor appointments, firing awful doctors, and finding new ones that were going to fight for me. That started the bi-monthly appointments of iron infusions, as they figured out what to do with me. By the end of this, my veins were so messed up that it was hard to get a line in me, and the infusion/chemo nurses were talking about putting in a PICC line. I remember looking at my husband after an infusion that took three attempts to get an IV line into my body, and saying, “This isn’t worth it. I can’t keep going like this.” At that point, we realized that we would have to give in to the hysterectomy that doctors were now recommending.

Hysterectomy and Oophorectomy: From the Frying Pan to the Fire

On January 15, 2015 I went in for a laparoscopic assisted vaginal hysterectomy, believing I would come out with one, or both ovaries. I had left the decision of ovary removal up to my surgeon, who assured me that he would leave them if they were ok. The first question I asked as I woke up was, “Do I have anything left?”  The nurses refused to tell me, and once my husband was allowed to see me he shared with tears in his eyes, “They had to take everything.” Evidently the doctor had found endo and new hemorrhagic cysts on both ovaries and had decided it wasn’t worth keeping them. I was a bit concerned when I received this news, but figured menopause would just make me a bit hot and cranky. Everyone goes through menopause, so why couldn’t I?  I figured I’d slap a hormone patch on my behind and be good to go. I remember looking at my husband and saying, “It’s over. We did it!!” I now feel so incredibly stupid looking back at that statement. Little did I know, I had just jumped from the frying pan into the fire.

Oh, how I wish I had stood up for my ovaries more that day. What I didn’t know then, but know now is that the ovaries control EVERY SINGLE function in my body. And being a medication sensitive person, so far none of the hormone replacement therapies are matching or helping my body. I seem to absorb and process them differently. Post hysterectomy, we discovered I had a gene disorder called MTHFR, where my body doesn’t handle and process B vitamins correctly, which leaves my liver and system overworked without the correct supplements to help it. We also learned a year later that I should’ve been diagnosed with Polycystic Ovarian Syndrome (PCOS), but that had somehow been missed between the endo, fibroids, and bleeding to death. Had I received correct hormonal labs and evaluation and had the PCOS been caught. I might have been able to receive some specialized treatment that maybe would’ve helped. Maybe…

Two and a Half Years Post Hysterectomy

I am two and half years out from my hysterectomy. I am still working on finding a stable and suitable hormone replacement (which some days feels impossible), but I’m hanging onto a sliver of hope it can be done. There are very few guidelines for hormone replacement after a hysterectomy for MTHFR or PCOS, so I am finding the challenge more often than not,  completely overwhelming. Most days, I have symptoms that I never had before, which are keeping me bedridden. Migraines, body aches, and dizziness that keep me sidelined are the horrible consequence of taking out my ovaries and losing my hormones. As I began researching, I realized that ovary removal can be absolutely devastating to women. There are over 400 bodily functions that need those hormones to work properly, and my body wasn’t tolerating any of the pharmaceuticals that are available. There are days I wish I had never woken up from that surgery, and the isolation and loneliness of the situation I’m now in, leaves me in tears most of the time. My marriage of 17 years is still surviving, but it has taken a big hit. Intimacy is not what it once was, and the stress of caring for a chronically ill spouse can take its toll on anyone.

I Am Not Alone: The Sad Reality of Women’s Healthcare

The more I researched, the more I realized I wasn’t going through “natural” menopause. I was in something called surgical menopause, which in reality is just another word for female castration. I went searching for information and support sites for surgical menopause, but I kept coming up empty-handed. There just isn’t that much information or support available. So out of desperation and getting tired of calling the suicide hotline, I started a group on Facebook called Surgical Menopause Support. I brought about 15 people from my pre-hysterectomy group with me, so that we could talk about the struggles and hormone craziness we were dealing with, without scaring other women who were facing hysterectomies themselves.  I figured I was an exception rather than the rule. The group has now grown to over 1,100 members from all over the world, and I’ve had to add two administrators to help me oversee the group.

Women are desperate to find out what has happened to their body, and why they are feeling so sick and miserable. I was shocked; I wasn’t the exception, this is what it is. This is what happens when you remove an entire organ system from the body. There are days when my jaw just hangs open at the stories these other ladies share, or the comments they get from their doctors. It makes me so sad. Some days I am so angry at the medical community for doing this to me and other women, without the ability to put us back together. It’s probably one of the hardest things you can put a woman through. It seems to remove so much of the person she once knew. And women are in no way made aware or prepared for the challenges that could come from this surgery. It just blows my mind.

So for now, I continue to strive to find hormones that let me be the best me I can be; hoping that I will end up being more functional than I am now. I will continue to offer a supportive place for women to chat about their struggles and feelings. My goal is to somehow make the doctors and medical community more aware of what they are actually doing to women. I hope that scientific research and funding can be put in place so that researchers can figure out how to keep women from needing this surgery at all, or at least how to replace all the hormones their bodies lose. The pharmaceuticals we have now are not enough. Some women can’t handle the bioidentical hormones and need synthetic. Some women can’t handle the synthetic and need bioidentical. There are not enough options for customization for women to pick from. The medical community must think it is one size fits all for all ladies. Something needs to be done, because other women who have had these surgeries as a necessity like I did, will find themselves in a surgically induced, new medical situation, with not much support or help. It has to stop.

This article is in honor of Mary Brite, who over the years constantly encouraged me to write and share my story.

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When Your Wife Has Endometriosis

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For the first two wonderful amazing years of our life together, it all seemed like a dream. Everything was a dream; no fighting (still don’t), no needing time apart only wanting to spend time with one another. Everything was perfect. It was just how I pictured a perfect marriage should be. We tried to start a family but were having a difficult time because my wife had PCOS (polycystic ovarian syndrome). After six months of trying, we sought the help of a fertility doctor.

February 2016, we had just moved in to our new apartment, and had all the hope in the world that this was our year. My wife started her medications and we followed the rules and guidelines for us to start our family. One night we were talking on our deck about the future, where we should move to raise our family, where we could afford rent and still be close to her parents as they were very excited for grand babies. When we tried to get inside, we noticed that the door had locked behind us and now we were stuck on our deck (thank the universe it was summer). After a long while, we got help and made it inside to go to bed. Then all of the sudden my wife’s pain and discomfort shot up from a high 6 that it had been at for at least a week to about a 10.

We went to the hospital, and after waiting for what seemed like forever, we finally saw a doctor.  He said bluntly that my wife had a softball-sized cyst that was causing her pain. They never told us this on her last ER visit, which was 4 days prior to this one. At that visit, they brushed off her pain and she was given pills to “help” with her pain until it passed. How could they have not seen a softball-sized cyst?

After many more hours of IV pain meds and no eating, she had emergency surgery. She ended up her losing a fallopian tube because it had been twisted and was dead from the cyst. As she recovered, it was not long before she could not move again because the pain was back and at times was so much worse.

She stopped eating from the pain and lost so much weight. She was in such a dark place it was all I could do not too just cry and beg her not to give up. One night we went to another hospital, one because the ER had quicker wait times, but for another doctors opinion. That is when a simple sentence from that amazing doctor’s mouth changed everything. She said, “I think you may have endometriosis,” and asked if they saw any endometriosis during the surgery. These words will haunt me until my grave.

After what seemed like every possible test they could run, they finally agreed to do another surgery to look for endometriosis. Sure as shit, they found it and “burnt it out”. Since that surgery, nothing has changed, except for the worse. I have read what feels like everything I can find on endometriosis. I came across another man’s perspective on dealing with his wife’s endometriosis and it made me tear up because I know the feeling. There is a gut wrenching feeling of helplessness, a feeling as if you have let your wife down for not being able to take any pain away, how the only thing you can do is make sure everything is good and that she has nothing to worry about. I try to make sure she feels taken care of. I try to help her feel as good as she can while battling this.

The good days are amazing and it is as if all of this becomes a distant scary memory but it can change it a heartbeat. One minute everything is good and the next, she just wants to lay down and rest because the pain is kicking her ass. There are 3am pep talks that keep her grounded and feeling positive in a world of what has quickly become negative. There are special dinners brought home to her to make her feel more human than she has all day.

One of the hardest parts for me is the helplessness. It is an overwhelming pit of darkness to look in to the eyes of the love of my life and help her believe as strongly as I do there is still hope for a pain free future, that all of this will be nothing more of a bad memory for her and for us. The absolute hardest is to not be able to have children with my wife, that we made ourselves. It is a tearing feeling. One second I feel fine and the next it feels like my heart has been ripped out of my chest and crushed in front of me.

Since day one of her battle with this gut wrenching disease I told her, and have reminded her, for better or worse, in sickness and health. I said those words with all my heart and for the rest of my days and beyond I mean them. The only advice I can give for the boyfriends, girlfriends, wives and husbands is be there, don’t brush it off like so many do in the world. If it is three in the morning and they need to talk, listen. If they need something to help them feel better, get them that. Even if it is the last of your money until payday. They ask for it because it might just make it a good day instead of a bad day. Remind them you are not going anywhere and that you are in it for the long haul. It might seem like you keep saying it, but to them it means the world to hear those words. Tell them they are loved and supported in this fight. They may already know that but it makes them feel special.

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Hormones Matter Top 100 Articles of 2015

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Happy New Year, everyone. We have another remarkable year under our belts. Hormones Matter continues to grow month after month. This year, despite the site being down for a month in September, we had over 815,000 visitors, most staying quite a while to read our articles.

Since inception, we’ve published close to 900 articles, many are read by thousands of readers every month. The hysterectomy and endometriosis articles continue to draw large crowds, demonstrating the great need for information in these areas of women’s health.

Our success is thanks to a fantastic crew of volunteer writers who spend countless hours researching complex medical topics, making connections, identifying unconventional therapeutic opportunities, and bringing to light, what are often, invisible illnesses. Without these incredibly talented and compassionate individuals, Hormones Matter would not exist.

Before we begin the new year in earnest, let us take a moment to thank all of the writers of Hormones Matter.

Thank You Hormones Matter Writers!

 

Below are the articles and authors who made the top 100 list for 2015. If you haven’t read these articles, it’s time to do so. If you like them, share them and share our site so we can continue to grow. If you were helped by any of our articles, take a moment and send the writer a thank you note.

This year, we thought we’d do something a little different and include the 25 all-time favorite articles on Hormones Matter. Be sure to scroll down to the second table and take a look. The numbers are quite impressive.

Since we are run by volunteers and unfunded, feel free contribute a few dollars to cover the costs of maintaining operations. Crowdfund Hormones Matter. Every dollar helps.

If you’d like to share your health story or join our team of writers: Write for Us.

Hormones Matter Top 100 Articles of 2015

Article Title and Author

Reads

1. Post Hysterectomy Skeletal and Anatomical Changes -WS 50,814
2. Sex in a Bottle: the Latest Drugs for Female Sexual Desire – Chandler Marrs 47,910
3. Sexual Function after Hysterectomy – WS 28,898
4. In the ER Again – Heavy Menstrual Bleeding -Lisbeth Prifogle 25,326
5. Endometrial Ablation – Hysterectomy Alternative or Trap? -WS 25,048
7.  Adhesions: Cause, Consequence and Collateral Damage – David Wiseman 22, 868
8. Is Sciatic Endometriosis Possible? – Center for Endometriosis Care 11,701
9. Endometriosis: A Husband’s Perspective – Jeremy Bridge Cook 11,626
10. A Connection between Hypothyroidism and PCOS – Sergei Avdiushko 11,024
11. Often Injured, Rarely Treated: Tailbone Misalignment – Leslie Wakefield 10,580
12. Hysterectomy: Impact on Pelvic Floor and Organ Function – WS 8,494
13. Pill Bleeds are not Periods – Lara Briden 8,440
14. Silent Death – Serotonin Syndrome – Angela Stanton 8,408
15.  An Often Overlooked Cause of Fatigue: Low Ferritin – Philippa Bridge-Cook 8,374
16. Wide Awake: A Hysterectomy Story – Robin Karr 7,733
17. How Hair Loss Changed My Life – Suki Eleuterio
18. The High Cost of Endometriosis – Philippa Bridge-Cook 7,170
19. Skin Disorders post Gardasil – Chandler Marrs 6,891
20. Essure Sterilization: The Good, the Bad and the Ugly – Margaret Aranda 6,820
21. Love Hurts – Sex with Endometriosis – Rachel Cohen 6,779
22. Dehydration and Salt Deficiency Migraines – Angela Stanton 6,638
23.  Adverse Reactions, Hashimoto’s Thyroiditis, Gait, Balance and Tremors – Chandler Marrs 6,445
24.  Stop the Metformin Madness – Chandler Marrs 6,400
25. Lupron, Estradiol and the Mitochondria: A Pathway to Adverse Reactions – Chandler Marrs 6,110
26. Endometriosis after Hysterectomy – Rosemary Finnegan 6,093
27. The Reality of Endometriosis in the ER – Rachel Cohen 5,962
28. Mittelschmerz – what should you know – Sergei Avdiushko 5,780
29.  Red Raspberry Leaf Tea to Relieve Menstrual Pain – Lisbeth Prifogle 5,586
30. Mommy Brain: Pregnancy and Postpartum Memory Deficits – Chandler Marrs 5,437
31. Parasites: A Possible Cause of Endometriosis, PCOS, and Other Chronic, Degenerative Illnesses – Dorothy Harpley-Garcia 5,414
32.  Endometriosis and Risk of Suicide – Philippa Bridge-Cook 5,413
33.  Fluoroquinolone Antibiotics and Thyroid Problems: Is there a Connection? – JMR 5, 228
34. Adenomyosis – Philippa Bridge-Cook 5,022
35.  Gardasil: The Controversy Continues – Lisbeth Prifogle 4,809
36.  Hyperemesis Gravidarum – Severe Morning Sickness: Are Mitochondria Involved? – Chandler Marrs 4,801
37.  Oral Contraceptives, Epigenetics, and Autism – Kim Elizabeth Strifert 4,452
38.  High Blood Pressure in Women: Could Progesterone be to Blame? – Chandler Marrs 4,446
39. My Battle with Endometriosis: Hysterectomy at 23 – Samantha Bowick 4,288
40. Thiamine Deficiency Testing: Understanding the Labs – Derrick Lonsdale 4,045
41. My Battle with Endometriosis and Migraines – Angela Kawakami 3,839
42. Tampons with Glyphosate: Underpinnings of Modern Period Problems? – Chandler Marrs 3,835
43. Cipro, Levaquin and Avelox are Chemo Drugs – Lisa Bloomquist 3,792
44. Hysterectomy or Not – Angela’s Endometriosis Update – Angela Kawakami 3,750
45. Warning to Floxies: Beware of New Med for Psoriatic Arthritis – Debra Anderson 3,691
46.  DES – The Drug to Prevent Miscarriage Ruins Lives of Millions – DES Daughter 3,655
47.   Sphincter of Oddi Dysfunction (SOD) – Brooke Keefer 3,540
48. Progesterone for Peripheral Neuropathy – Chandler Marrs 3,278
49. The Fluoroquinolone Time Bomb – Answers in the Mitochondria – Lisa Bloomquist 3,251
50. Why is PCOS so Common? – Lara Briden 3,211
51.  Pregnancy Toes – What Sugar does to Feet – Angela Stanton 2,971
52.  Five Half-truths of Hormonal Contraceptives – The Pill, Patch and Ring – Joe Malone 2,834
53.  Five Years After Gardasil – Ashley Adair 2,831
54. Bleeding Disorders Overlooked in Women with Heavy Periods – Philippa Bridge Cook 2,826
55.  Is Gardasil Mandated in Your State? – Lisbeth Prifogle 2,814
56.  Is Prenatal Dexamethasone Safe: The Baby Makers’ Hubris – Chandler Marrs 2,808
57. Porn Brain – A Leading Cause of Erectile Dysfunction – Chandler Marrs 2,792
58. Lupron and Endometriosis – Jordan Davidson 2,752
59.  Endometriosis, Adhesions and Physical Therapy – Philippa Bridge-Cook 2,746
60.  Glabrata – A Deadly Post Fluoroquinolone Risk You’ve Never Heard About – Debra Anderson 2,703
61. Are You Vitamin B12 Deficient? – Chandler Marrs 2,635
62. Topamax: The Drug with 9 Lives – Angela Stanton 2,635
63.  Cyclic Vomiting Syndrome – Philippa Bridge-Cook 2,622
64.  The Endo Diet: Part 1 – Kelsey Chin 2,614
65.  Endometriosis and Adhesions –  Angela Kawakami 2,544
66.  Thyroid Disease Plus Migraines – Nancy Bonk 2,530
67.  Is it Endometriosis? – Rosalie Miletich 2,414
68. Hysterectomy, Hormones, and Suicide – Robin Karr 2,412
69.  Why I am Backing the Sweetening the Pill Documentary – Laura Wershler 2,321
70.  I Wanted to Die Last Night: Endometriosis and Suicide – Rachel Cohen 2,271
71.  How Can Something As Simple As Thiamine Cause So Many Problems? – Derrick Lonsdale 2,456
72.  Thyroid Dysfunction with Medication or Vaccine Induced Demyelinating Diseases – Chandler Marrs 2,034
73. Angela’s Endometriosis Post Operative Update –  Angela Kawakami 2,017
74.  Fluoroquinolone Antibiotics Damage Mitochondria – FDA Does Little – Lisa Bloomquist 1,993
75.  Endometriosis and Pregnancy at a Glance – Center for Endometriosis Care 1,969
76.  Don’t Take Cipro, Levaquin or Avelox If…. – Lisa Bloomquist 1,960
77.  Gardasil Injured – Dollie Duckworth 1,898
78. Fear of Childbirth Prolongs Labor – Elena Perez 1,888
79. Fluoroquinolone Poisoning: A Tale from the Twilight Zone – Kristen Weber 1,883
80. Personal Story: Thyroid Cancer – Myrna Wooders 1,880
81. Recurrent Miscarriage – Philippa Bridge-Cook 1,873
82. Recovering from the Gardasil Vaccine: A Long and Complicated Process – Charlotte Nielsen 1,842
83. Pelvic Therapy for Endometriosis, Adhesions and Sexual Pain – Belinda Wurn 1,818
84. Hormones, Hysterectomy and the Hippocampus – Chandler Marrs 1,777
85. Why Fatigue Matters in Thyroid Disease – Chandler Marrs 1,718
86. How Do You Deal with the Lasting Effects of Endometriosis? – Samantha Bowick 1,697
87. Depression with Endometriosis – Samantha Bowick 1,678
88. Easing Endometriosis Pain and Inflammation with Nutrition –  Erin Luyendyk 1,648
89. Anti-NMDAR Encephalitis and Ovarian Teratomas – Chandler Marrs 1,634
90. Autoinflammatory Syndromes Induced by Adjuvants: A Case for PFAPA – Sarah Flynn 1,595
91. Endometriosis Awareness Month: A Wish Noted – Philippa Bridge-Cook 1,513
92. The Role of Androgens in Postmenopausal Women – Sergei Avdiushko 1,477
93. It Wasn’t by Choice: Dysautonomia – Margaret Aranda 1,454
94. Fluoroquinolone Antibiotics Associated with Nervous System Damage – Lisa Bloomquist 1,453
95.  Vitamin D3 and Thyroid Health – Susan Rex Ryan 1,439
96. Dealing with Doctors When You Have Undiagnosed Endometriosis -Angela Kawakami 1,439
97. Endometriosis and Being a Trans Person: Beyond Gendered Reproductive Health – Luke Fox 1,436
98. Cyclic Vomiting Syndrome and Mitochondrial Dysfunction: Research and Treatments – Philippa Bridge-Cook 1,430
99. Living with Ehlers Danlos is Hell – Debra Anderson 1,420
100. What is Fluoroquinolone Toxicity? – Lisa Bloomquist 1,415

Hormones Matter All-Time Top 25 Articles

Article Title and Author

Reads

1. Post Hysterectomy Skeletal and Anatomical Changes -WS 105,336
2. Sex in a Bottle: the Latest Drugs for Female Sexual Desire – Chandler Marrs 99,098
3. Endometrial Ablation – Hysterectomy Alternative or Trap? -WS 70,999
4. Adhesions: Cause, Consequence and Collateral Damage – David Wiseman 40,299
5. In the ER Again – Heavy Menstrual Bleeding -Lisbeth Prifogle 39,821
7.  Sexual Function after Hysterectomy – WS 35,188
8. A Connection between Hypothyroidism and PCOS – Sergei Avdiushko 31,193
9. Is Sciatic Endometriosis Possible? – Center for Endometriosis Care 24,691
10. Endometriosis: A Husband’s Perspective – Jeremy Bridge-Cook 23,251
11. Skin Disorders post Gardasil – Chandler Marrs 18,105
12.  Gardasil: The Controversy Continues – Lisbeth Prifogle 14,174
13.  Wide Awake: A Hysterectomy Story – Robin Karr 14,134
14.  Endometriosis and Risk of Suicide – Philippa Bridge-Cook 13,836
15.  Love Hurts – Sex with Endometriosis – Rachel Cohen 13,782
16. Endometriosis after Hysterectomy – Rosemary Finnegan 13,294
17. Hysterectomy: Impact on Pelvic Floor and Organ Function – WS 13,056
18.  Adverse Reactions, Hashimoto’s Thyroiditis, Gait, Balance and Tremors – Chandler Marrs 12,901
19.  How Hair Loss Changed My Life – Suki Eleuterio 12,835
20. Mittelschmerz – what should you know – Sergei Avdiushko 11,919
21.  Often Injured, Rarely Treated: Tailbone Misalignment – Leslie Wakefield 11,521
22.  An Often Overlooked Cause of Fatigue: Low Ferritin – Philippa Bridge-Cook 10,821
23.  Mommy Brain: Pregnancy and Postpartum Memory Deficits – Chandler Marrs 10,591
24. Adenomyosis – Philippa Bridge-Cook 10,249
25.  I Wanted to Die Last Night: Endometriosis and Suicide – Rachel Cohen 9,826
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How Do You Deal with the Lasting Effects of Endometriosis?

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I had my life all planned out. I was going to graduate high school, go to pharmacy school, graduate in four years, and then find a job working at a pharmacy that I loved. I wanted to date and get married and start a family, too. All that changed when I was diagnosed with endometriosis; even though I did not know it at the time.

Fast forward six years and I am a completely different person than I ever thought I would be. Before being diagnosed, I never really understood what people with health problems go through. Now, I do and I am more sympathetic and empathetic to those that have chronic illnesses. I know what it feels like to not be able to do all the things you want to do and love.

Tough Choices with Endo

I have chosen not to finish pharmacy school because my body just cannot handle the stress. I did not want to make this decision. My body has already been through so much. I do not want to put it through anything that may cause more harm. This is the only body I have and I want to make the most of it.

Am I mad? Yes! Will I be able to move on? Yes, because I know that there is a great life ahead of me even if it is not what I had initially planned. I was given endometriosis for a reason and I am not going to let it win. I am going to use what I have been through to help others who also suffer with this disease, as well as the other diseases that come along with endometriosis.

With Endometriosis Comes Many Other Diseases

I have been diagnosed with interstitial cystitis, polycystic ovary syndrome, and osteoporosis, in addition to the endometriosis. I had a hysterectomy at the age of 23. I know I can adopt, but that is a very challenging process to go through. This will make having a family difficult, but not impossible. It may seem like I am giving up because I am not pursuing a dream I had, but I am not. When I was fighting for pharmacy school and for my health, I realized that I just did not have it in me to keep fighting for both. I had to choose my health, because if I did not, I felt like my quality of life would be worse than it is now. If I were to continue pharmacy school, I felt like I would not be able to enjoy the experience. So instead, I am using everything in my power to gain awareness for endometriosis. I encourage people to talk about this disease so that one day there will be a cure. I do not want anyone to ever go through the agonizing heartache and pain I have been through.

When I was first diagnosed, I never thought I would be dealing with endometriosis for the rest of my life. I was sure there was a pill that would help end my pain, but sadly, I was mistaken. I continue to pray that I will wake up one day and not be in pain anymore. However, I have come to the realization that I will be in some kind of pain for the rest of my life. I have to find a way to be able to cope with that pain. I know some people do not understand this, but I have become closer with God since all of this has happened. Many people do not like to hear the saying “everything happens for a reason”, but that is what gets me through each day.

How do you deal with your symptoms of endometriosis and what has the disease stolen from you? Share your story here on Hormones Matter.  Write for us and together we can end endometriosis.

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