Endometriosis and the Journey to Advocacy

Published on April 13, 2016

6K views

I will never forget the words the doctor in the ER said to me: “I will not support your habit and I will not prescribe you anything.” These words, so easily said, cut me like a knife. I was no stranger to being told that my endometriosis “shouldn’t cause so much pain”. Or being told I was “a girl who needed to get over it”. But that night changed everything for me.

Let’s go back a bit. My endometriosis journey started when I was 15. I didn’t know what it was that was causing this debilitating pain but I did know that it wasn’t normal. Luckily for me, I had parents who weren’t happy with the answers we were getting either. I can’t even count the number of ultrasounds and CT scans I had trying to diagnose something that no one could see through either of these methods. I was told that my symptoms didn’t make sense by a handful of gastrointestinal specialists and I was refused a referral to a gynecologist because I wasn’t sexually active and therefore “couldn’t possibly have anything wrong with [my] reproductive organs”.

It took me 10 years to finally get the referral I needed. Unfortunately, this is not at all uncommon when dealing with this disease. When I finally got in to see a gynecologist, she diagnosed me with endometriosis by nothing more than just hearing my symptoms. Five minutes after I entered the office, she was ready to send me out with a prescription for birth control pills that were supposed to save me from the pain. I expressed concern with this treatment because by this point I was well versed on how endometriosis was diagnosed and treated, and I knew that birth control pills didn’t treat the disease. I had a family history of blood clotting and was nervous about this potential course of treatment but I was brushed off as being nothing more than a girl who worried too much. At my insistence, I was given a requisition for blood work that had to be paid by myself. I happily did it and 72 hours later was called back in. It was found that I had a genetic blood clotting disorder and that prescription for hormonal birth control would have potentially killed me by causing a lethal blood clot.

I transferred to another gynecologist and again, here was someone who didn’t understand why I wanted a laparoscopy. At this point in my life, I was starting to believe that I perhaps was losing my mind. I needed to know for sure and so I demanded the surgery. On May 31, 2010, I had surgery and was confirmed to have endometriosis on my reproductive organs and bowels. I was relieved. At this point, I thought this was my ticket to real treatment and more answers but instead, I’m really no better off than I have been over the entire course of this disease. I still have severe pain way too often.

I was out one night at a movie with my husband. Afterwards, we were driving home and I was crying. My husband knows that this is a bad sign. I told him I couldn’t make it to our house and he needed to go to my parent’s house immediately (they lived nearby). I began vomiting from the pain. I collapsed on the bathroom floor and couldn’t move. My parents called an ambulance and I was rushed into the ER. Three paramedics were convinced there was something very wrong with me. After two doses of morphine and Gravol, I was still writhing in pain. I felt that as soon as I mentioned the fact that I had endometriosis, I was somewhat written off. This is when the doctor came in to accuse me of being a drug addict looking for a fix. I yelled. I screamed. I demanded treatment and I will never regret the things that I did to stand up for myself. The nurse taking care of me slid me a card for the patient advocate who I contacted the next day. Unfortunately, after a lengthy investigation, I was told by the hospital that the doctor was within his rights and was “trying to educate [me] on the pitfalls of drug abuse”.

It was after this night that I was determined to raise my voice. We need more awareness about this disease. We need doctors to become specialists in this area. We need better treatment. I started a local support group as a result because I don’t believe that anyone should experience something like this without having someone to turn to who truly understands. It has brought me great friends and amazing support – something anyone fighting this disease needs. My advice is simple: never stop fighting for yourself or fighting for awareness. This disease affects too many women for us to remain silent. I hope that my small piece in this world can make a difference for someone else.

If you have endometriosis or any other complex condition and would like to share your story on Hormones Matter, write for us.

Endometriosis: The Struggle to Find Effective Care

by Jess Boisjoli

Published on April 12, 2016

4.3K views

I have a horrible disease called endometriosis. It has completely destroyed my life in every way possible. I am 29 and going through menopause with no children and no chance of having my own children. My body is full of scars from multiple failed surgeries and from unbalanced hormones.

Endometriosis has caused me to feel like less of a woman and has made feel extremely insecure. It has taken all of my energy to focus on getting through the pain, rather than taking the time to enjoy life and figuring out who I am besides a woman with endometriosis. I have not been able to lead a normal life due to the extreme chronic fatigue and daily unbearable pain I have suffered since the age of 15.

Several Years of Misdiagnosis

At 15 I was misdiagnosed with irritable bowel syndrome (IBS), which complicated my chances of receiving an early proper diagnosis of my endometriosis. It started out with heavy painful periods, accompanied by washroom issues that kept me from school a couple days to a week at times. It then escalated to stabbing, throbbing pains in my abdomen as well as a crushing pressure type of pain in my legs on a daily basis that would just drop me to my knees and render me incapacitated. The pain was so bad that just putting on and wearing clothes was painful. Just the slightest touch or brush of clothing or anything to my abdomen would increase the pain level.

I had several visits to the hospital due to immense pain that ended in the dispensing of unnecessary prescriptions related to IBS. I was not given the proper examinations or tests to determine my actual underlying problem. It was not until I was 18 and another regular visit to the hospital that they finally believed there was something else that was causing my pain. They had figured I was 5 months pregnant due to an extremely distended abdomen. Despite telling them it wasn’t possible because I had not been sexually active, they still gave me a pregnancy test, which did indeed come back negative. An emergency ultrasound showed an endometrioma cyst that was almost 9 inches in diameter containing blood on my right side and a 2 inch cyst on the left side. I had emergency surgery in which the larger cyst, my right ovary and tube were removed immediately.

Finally, a Diagnosis

I was diagnosed with stage 4 endometriosis. One of my many doctors had assumed that the endometriosis had been growing since puberty at the age of 9. Other doctors believe I could have been born with it. Once diagnosed, I went through every type of medical and alternative treatment, as well as failed surgeries, and failed cyst drainings.

My endometriosis kept coming back and started to cause even more damage. I ended up with another very large cyst on my left side. The cyst had become so large that it had physically pushed some of my organs out of place and had begun to crush others. I also had adhesions–web like tissue that had begun to bind my organs together and to the cyst.

Trying to Find Effective Care

I went through several doctors, who in the end had done all they could for me. They told me that they were not skilled enough to deal with my case, and so I was passed on to the end of the line in my city, which was cancer care. They offered me a hysterectomy and removal of my last ovary, but not removal of all of my endometriosis, because they told me that was impossible to do. They told me that this surgery probably wouldn’t help, they said it was the only option I had left.

It was around this time that a friend and I had decided to start a support group because we felt so alone and frustrated with the lack of options and awareness in our province (Manitoba, Canada). We found out that there was a surgical method called excision that if done properly can remove most if not all of the disease and have little to no recurrence. This type of surgery was not offered by any surgeon in Manitoba.

Excision Surgery in Mexico

I decided to look into these specialists around the world. I ended up speaking with some in Canada, the U.S., and Mexico. I had been approved by Manitoba health insurance to see a specialist outside of Manitoba because of the severity of my disease. However, the wait was too long so I ended up going to Mexico instead. I had a 6 and a half hour excision surgery which resulted in the removal of my last ovary, but I did not need a hysterectomy and was able to keep my uterus. I have been pain free for almost a year now, but I am now dealing with the effects of surgical menopause at the age of 29. Even though the pain is gone I will constantly live with the damage that endometriosis has left me with.

Facilitating Support, Education and Awareness

I have been dealing with endometriosis symptoms and its effects for more than 11 years. It wasn’t until a few years before my last surgery that I was able to form a strong support system. Knowing what it felt like to go through most of my journey misunderstood, alone and confused, I have vowed to spend as much time as possible spreading awareness, education, and bringing women together so that no one has to go through what I did alone. I started an endometriosis support group in Manitoba with a friend of mine called W.O.M.E.N (Women of Manitoba Endometriosis Network). Recently we have also come together with The Endometriosis Network Canada to have our very first awareness day in Winnipeg on May 7, along with 16 other cities across Canada.

From what doctors have told me, had I been diagnosed earlier and had the proper excision surgery I probably would have been able to have children, and would not have had to go through so much suffering and unnecessary treatments. The pain of the disease may be gone for me but I will never be able to forget what is has done and taken away from me.

Endometriosis and Suicide

by Philippa Bridge-Cook, PhD

Published on April 6, 2016

17.5K views

It was a regular morning. I was drinking tea and checking my emails and Facebook messages, getting started with my work day. A Facebook notification flitted across my page cheerily: “It’s your friend’s birthday. Wish her a happy birthday. Help her celebrate!” Suddenly my day took a different turn. I did write on my friend’s Facebook wall, but she will never see it. She had committed suicide 8 months earlier because of daily, severe, chronic pelvic pain associated with endometriosis.

My friend’s story is, sadly, not that uncommon. We know from published research studies that the incidence of depression and anxiety in women with endometriosis is high. No formal research studies have addressed the incidence of suicide in this population, but in a survey done by Endometriosis UK, they found that 25 percent of women with endometriosis had contemplated suicide. I personally am familiar with several such tragic stories.

My friend, like most women with endo, had a long delay before being diagnosed, and then had a lot of ineffective treatment after that. She eventually had excision surgery and a hysterectomy, but complications of that surgery caused her to have severe daily pain afterwards. Although the best endometriosis surgeons will continue following their patients post-surgery and help them sort out continuing pain problems, some surgeons will wash their hands of pain that persists after surgery. My friend tried hard to get doctors to listen to her and help her, but in the end she was left alone with daily suffering, and ultimately, she couldn’t deal with it any more. As Nancy Petersen, endometriosis advocate and RN, has said: “Endometriosis is not fatal, but despair can be.”

We have a long way to go to change the way our health care system deals with endometriosis, which is currently failing many women with this disease. From long delays in diagnosis, to persistence of medical misinformation about the disease, to poor access to quality multidisciplinary care—all of these areas and more need improvement. In the meantime, women are still suffering, feeling like their quality of life will never improve, and feeling hopeless and depressed about their futures.

I want to urge women feeling severely depressed or having suicidal thoughts to speak up to someone about how they are feeling. It is not a sign of weakness to say you are having trouble coping, feeling depressed, or overwhelmed. Many women with endometriosis deal with a whole lot of crap on a daily basis, and most human beings have their limits on how much crap they can endure. Please confide in a friend or family member, or your doctor. If you prefer to talk to someone who doesn’t know you, click here for a list of international suicide helplines. Your family and friends do not want to lose you.

If you are the friend or family member of someone who has told you they are suicidal or who has expressed suicidal thoughts, please insist that they seek professional help even if they don’t want to. You can help them by listening empathetically and non-judgementally, but anyone in a crisis needs professional help. If you need assistance in finding an appropriate professional, you can reach out to a local endometriosis organization, or to local suicide distress centers.

Despite my friend’s daily struggles, she always had a kind uplifting word for others. She signed most of her messages to me with “gentle hugs.” In her memory, I would like to extend gentle hugs to everyone struggling with depression as a result of pain or illness.

The Side Effects of Endometriosis Medications

by Katelyn Luciani

Published on March 10, 2016

8.8K views

Making Difficult Decisions

I have endometriosis, adenomyosis, chronic back and pelvic pain, vulvodynia, pelvic floor dysfunction, and as a result I also suffer from depression and anxiety. Endometriosis is a very complicated disease which currently does not have a cure. Often times, endometriosis patients find themselves having to make difficult decisions–some life changing decisions, in order to manage their symptoms. March is Endometriosis Awareness Month, so I am writing this for the many people that are in the same situation as me. You are not alone in this battle against endometriosis.

Endometriosis

It’s been weighing me down like a rusty anchor keeping an old ship at bay.

I have a big decision to make.

It’s been hanging over my head like a storm cloud just waiting to strike.

When I wake up in the middle of the night from a muscle spasm, its on my mind.

When I wake up in the middle of the night to intense hot flashes, sweat soaking through the bed sheets, its on my mind.

When my bladder acts up for the 5th time since 3 a.m, its on my mind.

When I sneeze and one of my back ribs slides out, its on my mind.

All day…every day…ENDOMETRIOSIS IS ON MY MIND.

It was a very long journey to get diagnosed with endometriosis (read my story here), and I thought that once I was finally diagnosed, the road to treatment and feeling better might be easier, but it has not been. I have had excision surgery to remove the endometriosis; however, my pain has not improved from that surgery.

Since my last article, though the search was long and frustrating, despite numerous rejections, I somehow landed in the care of a wonderful gynecologist. After thoroughly going through my history and all of the unsuccessful “treatments” I’ve put my body through over the years, we discussed some options or rather what little options I had left. He suggested taking a high dosage of progestogen– Norlutate (Norethindrone)–which prevents ovulation and essentially stops my menses altogether, hopefully in turn reducing my daily pain significantly.

I left feeling torn. Part of me wanted to believe there might be a chance that I could regain back some sort of control over my life. The other part of me believed this was “too good to be true” and from past experiences with endometriosis treatments, would probably do more harm than good. After much hesitation and steady contemplation, taking into consideration the financial burden, I decided to give this treatment a try.

The adjustment period was initially pretty rough. The menopausal side effects hit really hard. Between the bed-soaking hot flashes and constant body chills/night sweats, sleep was extremely hard to come by. After about a month, I began to adjust to “functioning” (and I use that word in its loosest sense) on three to four hours of sleep each night.

With the support of my loved ones, as well as a very special meeting with a pain specialist, I decided to pursue a goal of mine: to become a certified yoga teacher. Yoga has been my one constant throughout the past few years, the one thing that I can always turn to and find some sort of relief. Even if it’s not physical relief, the mental relief I get from a class is sometimes worth more than money can buy! I wanted to be able to share that with others suffering from chronic pain. So I enrolled in a yoga teacher training program through my yoga studio. The owners were very supportive and allowed me to make my own hours based on how I felt physically, knowing that my health was my number one priority. I started going 2 to 3 times a week for half days and felt pretty good.

After a month, I started noticing some changes. Instead of becoming stronger and stronger, I was feeling weaker and weaker. My back ribs started slipping out of place randomly. Sometimes it would happen after sitting in the car for too long, other times it would happen at yoga, other times just from a sneeze or cough. I was told this was due to the hormones, and is referred to as ligament laxity (hypermobility).

Slowly but surely more side effects started taking over my life. From mild to extreme–they became all encompassing. From weight gain, acne, hair thinning/hair loss, bladder incontinence (contemplating buying Depends on your 29th birthday is a lot of fun!), constant uncomfortable yeast infections, swelling of my extremities, excruciating pain in my bones, in my joints, in my muscles…all over my body. There were times when I couldn’t be on my feet for more than an hour without having horrible swelling and shooting pains up and down my legs, which made it impossible to walk around. Christmas gift shopping was torture! All of these side effects were having a significant effect on my mood and my anxiety.

Even though the side effects were starting to outweigh the benefits, I stubbornly wasn’t ready to give up. I wasn’t ready to let endometriosis win. The overwhelming sense of this being my last resort was driving me. I met with my doctor to go over everything. After he mentioned bone loss due to the lack of estrogen in my body, he suggested I try add- back therapy of estrogen on top of the progesterone to prevent any more bone loss from happening and to help alleviate some of the menopausal side effects. I was warned to keep an eye out for any returning endometriosis symptoms. It wasn’t long before that started to happen—two weeks, if that.

At the same time as all of that was happening, for the first time ever, I experienced a very scary and painful episode of costochondritis: inflammation of the cartilage that connects a rib to the breastbone/sternum, also known as chest wall pain. It basically mimics what a heart attack feels like. That alone was enough to send my anxiety levels through the roof.

To calm my anxiety, I decided to go to my safe place, a yoga class, which turned out to be a horrible idea. I could barely make it through the first ten minutes of class without collapsing in pain and breaking down in tears. The shooting pain in my wrists and my ankles were so bad that I could barely hold myself up in downward dog. I spent the rest of the class lying there, fighting off the urge to run out of the class and disappear from embarrassment. This was the last straw.

I don’t think I can physically or mentally deal with this anymore. In my heart, I know what needs to happen but my mind keeps replaying flashbacks of the agony I go through living with my period. The truth of the matter is that I’m scared…I’m scared of my period. I’m scared of endometriosis. I’m scared that I’m not mentally or physically strong enough to deal with this for the rest of my life, but I also know in my heart that living with all these side effects surely isn’t a way to live either.

I can’t help but remark on the mind game of it all. I think about the pressure that we feel from other people and the pressure that we put on ourselves to be “better” or “normal”–I’m not sure which is worse. I’ve been holding on, hoping this would work and now I can’t help but be angry with my body for betraying me yet again. For once, why can’t a treatment just work and not leave me overcome with horrible side effects?

I think about all of my endometriosis warriors who have been forced into making life-changing decisions for managing their endometriosis and associated conditions fully knowing the struggle that lies ahead of them. I wonder how they cope? What’s right? What’s wrong? What are the boundaries that we make for our own bodies? When is it too much? When has the line been crossed?

I would love to hear your thoughts xo.

Hormones Matter Top 100 Articles of 2015

by Chandler Marrs, PhD

Published on January 4, 2016

6.5K views

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
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Endometriosis, Recurrent Pregnancy Loss and Autoimmune Disease

by Chandler Marrs, PhD

Published on December 21, 2015

8.2K views

“When there is breakdown in the mother’s immune system … it is more than likely that the embryo will have a problem protecting itself from the maternal immune system” – something so simple and yet often overlooked. According to Dr. Jeffrey Braverman, a leading reproductive immunologist, both maternal and paternal autoimmune disease and general immune system dysfunction play prominently in infertility and recurrent pregnancy loss, and yet, very rarely are these conditions considered against that backdrop.

Maternal Immune Function, Infertility and Recurrent Pregnancy Loss

In the moms, his research team has identified a cluster on autoimmune haplotypes or genetic fingerprints associated with infertility and recurrent miscarriage that include several patterns of HLA genes associated with common autoimmune diseases. HLA genes code for the human leukocyte antigens called major histocompatibility complexes, the immune cell molecules that guide the activity of our immune reactions. The HLA haplotypes or patterns Dr. Braverman’s group found associated with recurrent pregnancy loss include those for: Hashimoto’s disease, lupus, multiple sclerosis, antiphospholipid syndrome, Sjogren’s syndrome, scleroderma and autoimmune hepatitis.

Frequently, the moms also have endometriosis and sometimes even asymptomatic endometriosis, or what he calls, silent endometriosis. While the connection between symptomatic endometriosis and infertility is clear, the notion that endometrial implants are present but causing no symptoms except infertility is a novel one. Research in rodent models of endometriosis suggests that the neither presence nor size of endometrial implants necessarily confers pain. Rather, it is the location of the growth and more specifically, whether the endometrial implants contain nerve fibers that determine whether there is pain. Dr. Braverman’s discovery of a silent endometriosis may support that finding.

More importantly, Dr. Braverman contends the autoimmune nature of endometriosis and specifically, the intra-abdominal inflammatory cytokines and the over-production of mitochondrial reactive oxygen species (ROS), may act to deactivate sperm and must be corrected before pregnancy will take place.

“The autoimmune nature of endometriosis can affect egg quality by elevating the intra-abdominal levels of inflammatory cytokines that the ovaries are directly exposed to. This causes a condition known as oxidative stress and raises the level of a “toxic” chemical called ROS (reactive oxygen species) that the eggs are exposed to. (This can be treated to improve egg quality). In fact in IUI cycles or in patients trying to conceive on their own, these same ROS molecules can essentially deactivate the sperm sometimes requiring IVF even when there are no signs of tubal blockage.”

More often than not, the women who seek treatment with Dr. Braverman have been seen by other reproductive specialists who disregarded the immune dysfunction as contributing to infertility or recurrent pregnancy loss. Thyroid function, in particular, plays a large role in maternal and embryo health and is one of the most commonly disregarded culprits of infertility and recurrent pregnancy loss. As thyroid receptors are located on the follicle and thyroid antibodies have been identified in the follicular fluid, especially with PCOS, small perturbations in thyroid concentrations will affect the growth, quality of the follicles and one’s overall ability to conceive. Additionally, since thyroid hormones directly impact mitochondrial functioning and dysfunction or ROS production, it makes sense that identifying and treating thyroid disease would be imperative for healthy pregnancy.

Thyroid Disease and Recurrent Pregnancy Loss

Identifying and correcting immune dysfunction is critical to promote conception and pregnancy. Commonly, this involves a specific set of supplements targeted towards the patient’s particular type of immune dysfunction.

Supplements for Infertility and Recurrent Pregnancy Loss

Paternal Health: Dad’s Role in Recurrent Miscarriage

More often than not, dad’s health is ignored once conception takes place. It is believed that once a woman becomes pregnant, dad’s contribution is no longer important and the remainder of the pregnancy is solely her responsibility. Not so, says Dr. Braverman. Dad’s health, dad’s immune system health and compatibility with mom’s immune system are large contributors to whether the pregnancy is sustained or miscarried. Dad’s immune function determines sperm morphology or shape. Even slightly askew sperm have difficulty with motility and mobility, egg penetration and/or can contain fragmented DNA, which will then evoke miscarriage. Moreover, chemicals in the seminal fluid interact with the mom’s immune system and determine whether she will tolerate the growing embryo. Dad’s health is critical to mom’s ability to get pregnant and stay pregnant.

Paternal Contributions to Infertility and Recurrent Pregnancy Loss

What to Do Now

If you or yours are having issues with infertility, consider correcting maternal and paternal health issues first, in advance of attempting to conceive. Reproductive immunologists and other more functional medical specialist may be able to help.

Please note, Hormones Matter has no association with Dr. Braverman’s practice. We simply appreciate his approach.

This article was published previously on Hormones Matter in July of 2014.

Depression with Endometriosis

by Samantha Bowick

Published on December 8, 2015

6.9K views

Endometriosis causes problems in every aspect of a woman’s life including her mental state. It is a disease that occurs when tissue resembling uterine tissue is found outside of the uterus. It bleeds just like normal uterine tissue and causes extreme pelvic pain. The pain can be around your period or it can be every day. Every person is different. I went a long time with having pain every day and it became unbearable for me. I know personally I have felt like I was not good enough for anyone because of things the disease has taken away from me. I know many women have felt suicidal and some have ended their lives because they could not handle the pain or the struggles that come with the disease.

Doctors don’t take Endometriosis Seriously

When doctors do not take you seriously or act like they do not care what is going on with you, it is hard not to withdraw from the world. Why would you want to talk about something that people do not understand? I have had feelings of not knowing what my next step is because I cannot physically have children. This disease can take a woman’s fertility. How is that an easy thing to handle? I have found myself saying that I am not depressed or I would not be depressed if I did not have the disease as part of my life. However, the reality is endometriosis is part of my life whether I like it or not and I am depressed. After everything I have been through, I have gone through spells of wanting to give up on finding answers. This is because I am tired of medical professionals pushing me aside because they do not know how to help me.

A Hysterectomy at 23 is Depressing

Having to choose to have a hysterectomy at the young age of 23 is depressing enough, but having to explain this every time I go to a new doctor is a horrible experience each time. Even though I fill out the patient forms and put that I have had a hysterectomy, I still get asked when my last period was. It is crazy to me that we fill out these forms and then the nurses and/or doctors do not read them before asking questions. I have had nurses tell me that I am too young to be going through this at my age. I do not need this constant reminder that I will never be able to get pregnant and will be missing out on that experience. Even though I chose to have a hysterectomy, I did not have much of a choice. This is something I struggle with every day. It is depressing to try so many different treatments hoping one will end your pain, and then have nothing to help. I feel like with each doctor’s appointment I lose a little hope of ever being pain free. It is depressing to make plans and have to cancel them because of your health. I always feel guilty for doing this. We did not ask to have endometriosis. I have been to over 20 doctors at 25 years old. This makes me feel like all of my symptoms are in my head because doctors have been unable to tell me why I am still in pain or help get rid of the pain.

Endometriosis Pain is Real: We are not Drug Addicts

Many doctors do not want to give women with endometriosis pain pills because they think that their patients will become addicted to them. So instead, we suffer in pain. Chronic pain is crippling and affects every day life from things like taking a shower, working, cooking, or taking care of children. It also affects you mentally. It is hard to concentrate when you are in pain. Because people cannot see what is going on inside of your body, some may think that you are not in as much pain as you say you are.

Social Support for Endometriosis is Critical

I have been going to counseling for a few months now to help me deal with all of my health issues. It helps to have someone to listen to everything I have going on. There are many Facebook groups for women with endometriosis as well as for supporters that I have found helpful. These include: Endo Warriors, Nancy’s Nook Endometriosis discussion and education, ENDOvisible, among others. There is also an Endo Buddy program through Endo Warriors. When you sign up, you are paired with a woman who has endometriosis. I was paired with someone around my age in my state. We talk almost every day to see how the other one is doing and to help each other deal with our problems, especially ones that are endometriosis related. It is helpful to have someone to talk to that understands what you are going through. Even though I have found it is hard to talk to people about this disease, it does help me mentally to let people know what I am going through and how I am feeling. They may not know what to say, but it is always good to have someone to listen to you. It has also helped me to write about my experience with endometriosis to help other women that suffer with the disease and to gain more awareness for it. It helps to have a great support system. My family and friends have been there for me throughout this entire journey and I am so thankful for that. Without this support, I do not know where I would be.

All of this is very hard to deal with, but this is my reality and the reality for millions of other women. Depression is real with endometriosis and it is time that it is recognized. Too many women have lost their lives to this disease. We are not crazy and our symptoms are not in our head. It is time that we end the silence so that one day women will not have to deal with endometriosis or the other things that come along with the disease.

If you would like to share your story about endometriosis or write about endometriosis research and news, write for us.

Endometriosis and Pregnancy at a Glance

by Center for Endometriosis Care

Published on November 9, 2015

11K views

By Robert B. Albee, Jr., MD, Founder & The Center for Endometriosis Care

Although it used to be taught endometriosis was a disease of older career women who had delayed childbearing, this is completely unfounded. The disease can and does affect any female of reproductive age, regardless of race, socioeconomic or childbearing status. Pregnancy still figures strongly in the myths surrounding endometriosis, however. Women are often told, “you can’t get pregnant if you have endometriosis” as well as, “if you get pregnant you will cure endometriosis.” Neither statement is true.

First of all, endometriosis is a disease of fertile women. Most women with endometriosis who want to have children, have children. Secondly, pregnancy is not a cure for endometriosis.

Endometriosis and Pregnancy

During pregnancy, ovulation stops. The endometriosis implants may become less active, smaller and tender. This seems to be the result of the hormonal changes pregnancy brings. These include high levels of progesterone, the presence of HCG (human chorionic gonadatropin) and prolactin, among others. Menstruation stops, and many women with endometriosis may feel better while they are pregnant. Medical suppressive therapy is aimed at mimicking or inducing a pseudo-pregnancy and achieving similar results by blocking hormone receptors and reducing or completely eliminating menstrual flow.

In addition, an enormous psychological impact occurs. Pregnancy is something a normal, healthy woman’s body does. A woman who has suffered with endometriosis and then conceives feels that, finally, she is like other women. She feels normal for perhaps the first time since puberty. It is a liberating, positive experience.

However, the disease does not go away during pregnancy (or through use of drug therapy). After pregnancy and nursing (and sometimes before then), the symptoms return, sometimes with a vengeance. It is heartbreaking to see a new mother struggle to cope with a debilitating disease at a time that should be joyous (if exhausting).

Pregnancy Complications with Endometriosis

In terms of pregnancy risks associated with endometriosis, previous uncontrolled studies demonstrated increased incidence of spontaneous abortion in women with the disease. Subsequent data, however, have yielded contradictory results. Endometriosis has also been linked to a spectrum of pregnancy complications, originating either in the implants or in the uterus. Disorders of pregnancy associated with endometriosis include spontaneous hemoperitoneum in pregnancy (SHiP), bleeding and preterm birth. A recent cohort study also provided further evidence that subfertile women who conceive spontaneously are at increased risk of pregnancy complications, including antepartum hemorrhage, cesarean delivery, pregnancy-induced hypertension, preeclampsia and very preterm birth. [Risks of adverse pregnancy outcome in endometriosis. Fertil Steril. 05 March 2012. Brosens I, Brosens J, Fusi, Al-Sabbagh, Kuroda, Benagiano]. More recent data has implied that infertile patients with endometriosis may require additional monitoring with increased attention when they become pregnant. [Petraglia, Arcuri, de Ziegler, Chapron. Inflammation: a link between endometriosis and preterm birth. Fertil Steril. 1 June 2012.]

Though the impact of endometriosis on fertility and pregnancy remains a complex issue, increasing research efforts and technological progress will lead to more timely intervention and appropriate, multi-factorial treatments to restore quality of life and preserve or improve fertility. While the disease may present obstacles to family-building, with proper intervention and careful management many of these challenges can be overcome and offer long-term, effective management of endometriosis.

Excerpts of this article originally appeared in “Endometriosis: Q&A” by CEC Founder, Robert B. Albee, Jr., MD.

About the Authors: The Center for Endometriosis Care is a COEMIG-Designated Center of Excellence in Minimally Invasive Gynecologic Surgery which was founded over two decades ago by renowned laparoscopic excision (LAPEX) pioneer Robert B. Albee, Jr., MD, FACOG, ACGE. The Center is run under the leadership of Medical Director Ken R. Sinervo, MD, FRCSC, ACGE along with a caring, compassionate staff. We continue our efforts as architects of the legacy in gold standard endometriosis care.

Hormones Matter

Where health, hormones, and a whole bunch of other stuff, make sense.

endometriosis - Page 5

Endometriosis and the Journey to Advocacy

Endometriosis: The Struggle to Find Effective Care

Several Years of Misdiagnosis

Finally, a Diagnosis

Trying to Find Effective Care

Excision Surgery in Mexico

Facilitating Support, Education and Awareness

Endometriosis and Suicide

The Side Effects of Endometriosis Medications

Making Difficult Decisions

Endometriosis

Hormones Matter Top 100 Articles of 2015

Thank You Hormones Matter Writers!

Hormones Matter Top 100 Articles of 2015

Article Title and Author

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Hormones Matter All-Time Top 25 Articles

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Endometriosis, Recurrent Pregnancy Loss and Autoimmune Disease

Maternal Immune Function, Infertility and Recurrent Pregnancy Loss

Thyroid Disease and Recurrent Pregnancy Loss

Supplements for Infertility and Recurrent Pregnancy Loss

Paternal Health: Dad’s Role in Recurrent Miscarriage

Paternal Contributions to Infertility and Recurrent Pregnancy Loss

What to Do Now

Depression with Endometriosis

Doctors don’t take Endometriosis Seriously

A Hysterectomy at 23 is Depressing

Endometriosis Pain is Real: We are not Drug Addicts

Social Support for Endometriosis is Critical

Endometriosis and Pregnancy at a Glance

Endometriosis and Pregnancy

Pregnancy Complications with Endometriosis

endometriosis - Page 5

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