endo

Embracing Resilience: A Journey Through Endometriosis and Infertility

1231 views

Last year I had the pleasure of interviewing Alyssa Chavez about her journey through the challenges of endometriosis and infertility. In this interview, she cries as she recounts the pain of losing her pregnancy and the difficulties of trying to conceive. In fact, both of cry as she discusses miscarriage and her repeated attempts to conceive and carry a child.

In her compelling story, she opens up about her path to an endometriosis diagnosis, the emotional trials of infertility and IVF, the pivotal role of her loving husband, the decision to pursue excision surgery for endo, and her current hopes of conceiving naturally. Alyssa’s mission now revolves around supporting and empowering women facing similar challenges, a testament to the strength that can be harnessed when one woman navigates her own personal adversity and is willing to share it with the world.

What Is Endometriosis

Endometriosis is a condition characterized by the presence of endometrial-like tissue that grows outside the uterus. As one might imagine, this causes excruciating pain. It can take a years for a diagnosis, and once diagnosed, there are very treatments available and even fewer experts to guide these treatments. Among the more successful treatments, is something called excision surgery, where the aberrant tissue is surgically excised laparoscopically.

In addition to the pain and suffering women with endometriosis experience, fertility can be challenging. According to the Center for Endometriosis Care:

…stages I and II had a 60% chance of conceiving without surgical treatment; those with stage III had a 15-20% chance of conceiving without surgical treatment and those with stage IV did not conceive in that study.

Many women with endometriosis are simply unable to conceive or carry a child naturally. Some require assistance with things like IVF, while others may require surgical excision of the aberrant tissue before conception and pregnancy are possible. Again, according to the Center for Endometriosis Care:

Other studies have also found that conception rates increase following surgical treatment of endometriosis. For those with stage I-II, the chances of conceiving after excision is between 80-85%, almost the same rate as if you did not have endometriosis. Those with stage III will have a 70-75% chance of conceiving and those with stage IV is between 50-60%.

Alyssa, required both.

A Painful Reality: Living With Endometriosis

Alyssa’s journey began in her late teens when she was experiencing severe pain during her menstrual cycles. Despite these excruciating symptoms that caused her to lose days every month due to pain, she initially encountered disbelief and was often told that her pain was “normal.” This experience is all too familiar to many women living with endometriosis.

Her relentless pursuit of a diagnosis and solution led her through countless doctor’s visits and interventions including cycle suppression via hormonal birth control. When she and her partner began pursuing pregnancy and she discontinued her hormonal birth control, her pain and digestive difficulties spiraled out of control. After years of negative pregnancy tests, IVF and  a miscarriage, it became clear that she would need to tackle to the endometriosis surgically and undergo intense personal work to heal herself through nutrition before pregnancy would be possible.

Listening to Intuition: The Decision for Surgery

One of the hardest moments in Alyssa’s journey was her decision to undergo excision surgery to address her endometriosis. This decision was not made lightly, as her initial fertility doctor and another specialist both recommended against it. Their primary focus was fertility rather than the endometriosis itself. But after a miscarriage, Alyssa knew in her gut that something had to be done. She went against the advice of her medical team, and even defied her own logic of finding a natural cure, all based on her gut feeling that surgery was the correct path for her.

The pain (emotional and physical) and intuition led her to consult with an excision specialist who also considered her fertility goals. Her surgery ended up being extensive, with endometriosis found throughout her abdomen and pelvis, as well as adhesions binding her pelvic organs together. The procedure was longer and more involved than anyone had expected but has given her the relief that she desperately needed.

The Crucial Role of a Supportive Partner

Throughout her challenging journey, Alyssa was fortunate to find unwavering support in her husband. He proved to be the anchor in her life, offering love and encouragement every step of the way. Their shared experience of fertility struggles and the challenges of endometriosis not only deepened their bond but demonstrated how adversity can bring a couple together rather than tear them apart, as is so often the case.

Alyssa acknowledged in this interview that many couples experiencing fertility issues encounter additional strain on their relationship, as she and her husband also did. However, in their case, these challenges brought them closer together. The couple’s strength and determination allowed them to navigate the complexities of IVF and endometriosis with resilience.

Hope for the Future: Natural Conception

With her endometriosis surgically addressed and now armed with nutritional knowledge to heal her body systemically, Alyssa now looks to the future with renewed hope. The surgery, which removed binding adhesions and relieved her debilitating monthly pain, gives her hope that she now has an environment conducive to natural conception.  IVF was physically and emotionally taxing as well as expensive, so she continues to heal herself with nutrition and supplements and now holds optimism for the future and a natural pregnancy.

Supporting Others on Their Journey

Alyssa’s journey transformed her into a passionate advocate for women facing similar challenges. She now offers one-on-one coaching to guide women through the complexities of healing endometriosis, hormones, and fertility from the inside out, with a focus on nutrition. Her holistic approach seeks to address the systemic causes, considers individualized needs, and aims to make wellness practices fit into everyday life.

By sharing her journey and empowering others to seek help, she hopes to break the silence and stigma surrounding women’s health issues. She has a thriving one-on-one coaching business as well as her podcast, The Endo Belly Girl Podcast.

Alyssa’s journey through endometriosis and fertility challenges stands as a bright light of hope and resilience for other women who are on the same path. The fact that her journey is not yet over makes her story so much more compelling and relatable!  Her willingness to share her experiences is an invaluable contribution to the broader conversation surrounding women’s health and I am so grateful that she took took the time to speak with me so transparently. I invite you to listen in on this interview to learn more, and to be assured that you are not alone in your struggles with endometriosis, fertility, and systemic healing.

Endo and Infertility with Nutritional Coach Alyssa Chavez

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.

Yes, I would like to support Hormones Matter. 

Photo by Rita Seneca on Unsplash.

Share

Endometriosis and Endo-Related Sexual Pain

1717 views

Endometriosis is a painful, chronic, inflammatory condition that is poorly understood but affects more than 1 in 10 women and an uncounted number of gender diverse people. Previous articles have discussed endometriosis in general and some of the specific symptoms and complications that may arise. Hallmark symptoms include painful periods, painful bowel movements, and painful sex. Fatigue is another major symptom associated with endometriosis, and one which is frequently discounted by physicians due to it being such a challenging symptom to objectively measure. Currently, the gold standard for diagnosis is diagnostic laparoscopy, and the gold standard for treatment is laparoscopic excision.

In this interview, Philippa Bridge-Cook, an international endometriosis advocate, describes how the disease of endometriosis involves tissue that is similar to the lining of the uterus, which grows outside of the uterus. Often this tissue is in the pelvic area, but can also be in other parts of the body completely unrelated to gynecologic structures. These tissue growths are inflammatory and can be hormone-responsive, meaning that often people with endometriosis experience increased pain during menstruation, which can be severe and debilitating. However, endometriosis has much wider-reaching consequences “just” period pain.

Painful bowel movements may occur due to the location of these lesions, either on or within the bowels, or surrounding structures. They may also be related to chronic inflammation in the body. Digestive difficulties may extend beyond pain and include severe bloating, gas, painful cramping, and sensations of fullness, food sensitivities, diarrhea or constipation.

Painful sex can occur and may be related to either the location of these pain-producing lesions (for example, if they are in a place that is directly affected by sexual contact, and therefore directly irritated), or it may be related to pelvic floor dysfunction that arises due to chronic pain. Pain may be experienced during arousal, sexual touch, sexual penetration, orgasm, or after sexual activity.

As a Doctor of Physical Therapy, this specific complication of endometriosis falls squarely into my wheelhouse, and I treat many patients who are suffering from pelvic floor dysfunction related to chronic pain. In this interview, Philippa and I talk about how the pelvic floor muscles (muscles in the area of the groin that control urination, defecation, and contribute to sexual function) can become tense and tender due to the stress of chronic pelvic pain. During sexual activity they may be painful to touch, painful to penetration, or painful when they contract reflexively during orgasm. I discuss physical therapy for sexual pain here (link: Physical Therapy for Female Sexual Pain).

Dr. Bridge-Cook discusses not only the generalities of endometriosis and endo-related sexual pain, but also actionable, specific strategies for charting symptoms, speaking with your physician, and pain management. She reviews different imaging techniques, surgical techniques, and incomplete/inaccurate treatments. She is a true expert in the subject, informed by her years of personal experience as well as her extensive research and advocacy work. She speaks in a way that is easy to understand and provides hope, closing by encouraging women to not give up and to seek help with physicians that are willing to take them seriously.

Endometriosis and Sexual Pain

Share Your Endometriosis Story

Endometriosis affects millions of women but goes largely undiagnosed for years and treatment options are limited. To raise awareness about endometriosis and build the knowledge base, we need your help. Share your experience and your knowledge about living with endometriosis. To learn more, click here and send us a note.

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.

Yes, I would like to support Hormones Matter. 

Photo by Alexander Krivitskiy on Unsplash.

Share

The Reality of Endometriosis in the ER

14471 views

I’m lying on an emergency room bed, writhing in agony, screaming in pain, as though my insides are being torn to shreds. I curl up my body, protecting myself from the evil inner force that resides within me, stabbing me, shocking my organs. My mind is frantic, confused, and manic. Lights and sounds mix together around me and I close my eyes to minimize the sensory overload. The white sheets under me feel scratchy and irksome, I can’t deal with any added discomfort. Searing pain bubbles within me, threatening to boil over, and when it does, I let out a scream from the very depths of my soul.

I hear a voice and attempt agonizingly to open my eyes. A woman in a white coat stands in front of me, arms crossed in a stance that conveys a mixture of disdain and apathy.

“Rachel,” she demands, her voice both indifferent and annoyed, “want to tell me why you’re here?”

Is she joking? I wonder to myself while trying to gather my coherent thoughts, does she not see I’m in excruciating pain?

“Pain…” I manage to say, the word more a miserable moan than an answer. “I need meds…”

“I’ll decide what you need,” she replies nastily. “You’ve been here way too many times, asking for medicine each time. You don’t need meds, Rachel, you need to go to rehab. You’re an addict.”

I can’t control my tears any longer and I let them flow freely as I sob uncontrollably. Didn’t she see my chart? Doesn’t she see that I have endometriosis? Does she know how painful it is?

“I have endometriosis,” I muster, “I take normal pain meds every day but they are not working today. The pain is worse than usual!”

And then my senses can’t take the pain any longer, and I scream out desperately once more. All thoughts abscond from my brain, all I can think of is dying to get rid of the pain.  The doctor looks at me like I am a dirty piece of clothing on the floor. She purses her lips and then spits out, “I suppose I can give you some Motrin or Tylenol.”

I am so desperate at this point I agree to her pointless suggestion. My head knows the meds will not help, but my body is starving for relief. Needless to say, thirty minutes later the Motrin has left me right where I was before I took it: in paralyzing pain.

A nurse comes into my cubicle a throws a glance at my miserable form. “You’re being discharged!” she sings, as though she is freeing me from jail. Her smile is grotesquely wide as she hands me a pen to sign my name on the discharge papers. I want to explode at her, to hurl words in her face that describe my agony, and wipe that inane grin right off her face. But I don’t. Instead, I meekly take the pen, wait for a moment in which my body is able to stop shaking, and then sign the papers.

“Wheelchair will be here in a minute!” she croons, then leaves me alone with my emotions.

I fold my beaten-up body into the wheelchair feeling completely empty and numb despite the pain. I am so shocked at the experience I just had. I left my heart, soul, and voice in that emergency room, trying my hardest to explain the agony I was in.  I laid in front of a doctor trembling with pain, and she in turn called me an addict and sent me away. She didn’t bother to understand what I was going through and didn’t test me to see what drugs I had in my body. Instead, she took my trust, ruthlessly pummeled it, and carelessly threw it away. I leave feeling nothing more than a desire to give up and let it all go. Tonight, I have become one more casualty in the fight for us with endometriosis to be heard.

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. 

If you have an endometriosis story that you would like to share, contact us.

This article was posted originally in February 2014. 

Share

Endometriosis, Lupron, and Fluoroquinolones: A Recipe for Autonomic Disintegration

10364 views

I am sharing my health story in the hopes that someone can offer assistance. I had stage 4 endometriosis for years before it was diagnosed. On top of that, I have had reactions in antibiotics, including fluoroquinolones and was given Lupron. Each drug destroyed more of my health. I am currently bedridden, in pain and unable to function. I have lost hearing in my right ear, have Sjögren’s syndrome, Hashimoto’s, adrenal insufficiency, hypokalemia, electrolyte imbalances, IBS, MCS, Ocular migraines and recently, have been diagnosed with dysautonomia. My body feels like it is disintegrating. We believe that everything is related, that I have mitochondrial issues at the root of these illnesses, but to date, no one has been able to put the pieces together. With the help of my husband, I have put together my health history. We are looking for input.

Early Warning Signs

1985: late summer, I was hit by car while riding bicycle. I was banged up really bad and definitely had head injury.

1998: started feeling off, not sure yet at this point still very young

2001: birth of my first daughter. I developed severe preeclampsia and had an emergency C-section three days later. My daughter was 6 weeks early and spent two weeks in the intensive care unit.

2002-2003: I felt off at times and did go to GP on several occasions. I had pain shot to my back. I am not sure what it was but it took the pain away. I also kept saying just didn’t feel well. I felt off but nothing was found.

2005: the birth of our son and second C-section. I was on bed rest last three months of the pregnancy. I was given an antibiotic for some reason. I do not remember. I had a reaction to it and turned orange. The doctor gave me something else to counter the effects of the antibiotic and my color returned to normal. It was a normal birth.

2006-2007: I was still in pain. The pain moved to the abdominal area. I developed bowel issues, had and ovarian cyst. I saw gastrointestinal physician who did scans and found a thickening of the lining of uterus. He referred us back to the gynecologist who did D&C in 2007 and said I had very minuscule amount of endometriosis.

2008- 2009: still seeing OB for pelvic pain, also seeing multiple other doctors including a neurologist, internist, and surgeon. Everyone kept saying same thing: ‘Your fine. It’s in your head.” They wanted to put me on mood enhancers. I tried lorazepam and felt terrible on it, so I stopped after two weeks.

The Lupron Disaster

September 2009: I started doing Lupron injections from gynecologist. She was very forceful with me and stated “if you don’t do these injections I can’t help you.” She said it was the only way they could know if the pain was below the belly or above. I agreed reluctantly, but at that time still thought my doctors had their best interests in me. After the first injection, my doctor called at home on a Saturday to see how I was feeling. I responded I was already in pain, but it has now quadrupled and I feel like an old person. Every bone in my body hurt.  I couldn’t believe the amount of pain I was in. She said I had to get all 6 injections if it were to be able to help me.

At that time, my husband because of work only went to a few of my appointments. I soon began to have him go with me because I felt I was getting the run around.

Hearing Loss Post-Lupron: Let’s Add Fluoroquinolones and Steroids to the Mix

2010: the last injection was in February. I began to lose my hair. I had memory loss, stabbing and taser sensations in head. I was still getting pains in abdomen area. In September, I went in for ear pain. The ENT said it looked like a scratch, so he gave me fluoroquinolone drops. I had also taken other fluoroquinolone antibiotics for yeast infections earlier in the year. In October, I had sudden sensorineural hearing loss in the right ear. Within an hour, I called my husband told him my hearing was acting weird. I went totally deaf in my right ear, 8 months after my last injection of Lupron. My local ENT immediately gave me a shot of cortisone (I was able to still walk and drive). It all went crazy when my ENT put me on a large dose of oral prednisone for 14 days. Everything in my body went nuts. I was rolling out of bed, holding on to the walls to help me walk. I totally lost my balance. The oral prednisone really did a number on my head.  I had done genetic testing through 23andMe and our doctor upload the report to a reader called Opus23. It said that I should never take prednisone.

I went to Stanford Medical and saw top ENT and received three cortisone injections into the right ear drum. Had a 50/50 chance for recovery and for me it didn’t work. I left Stanford with them telling me they still don’t have all the answers yet when it comes to sudden hearing loss. They thought it was some sort of viral infection that attacked the ear drum and deafened the ear. After the hearing loss. I had three ER visits. This is when I first started having low potassium. I felt like I was about to pass out. I was still driving at this time, I didn’t know what to think.

2011 -2012: I began seeing a naturopathic physician. I also did a trip down to LA to the House Ear clinic to see some specialist regarding her hearing loss. They couldn’t help either. I left my current OB and started seeing the physician who was filling in. I ended up doing a partial hysterectomy with her after finding a growth at one of my numerous ER visits that year. I was still working and a full-time mommy, while dealing with massive pain in my lower abdomen and now starting to deal with multiple autoimmune diseases including: Sjögren’s syndrome, Hashimoto’s, adrenal insufficiency. In addition, a lot of my minerals and vitamins were off at that time. I suspect this was beginning of my dysautonomia. I also began seeing an endometriosis specialist at Stanford.

Was it Endometriosis All Along?

2013: On January 31st, I had laparoscopic surgery to clear the endometriosis. I had stage 4 endometriosis which took my appendix. The physician said my body was littered with endometriosis. He even checked up in my heart cavity to make sure no endometriosis had made its way up to the heart. Before the surgery, I was talking with the anesthesiologist and telling him about my hearing loss and my low potassium. That is when he stopped the surgery and I had to take a stress test. We left and went to Palo Alto heart center and did a stress test I fasted for 24 hours and then they had me go do a stress test on a treadmill on an empty stomach. I did it no problem and went back to the surgery center. That is when they did the laparoscopic surgery and found stage 4 endometriosis.

Also, I want to point out that we didn’t find out until much later that during the course of the endometriosis surgery, they had left surgical clips and suturing material in me. We discovered this at one of our many ER visits. The OR report from our doctor says nothing about these things being left inside of me. I believe this is an additional pain I have on top of the other complications in my abdomen area. Nothing like having a wad of surgical clips throughout my abdomen and suturing material left inside my already struggling body. We are trying to get these removed, but no surgeon will take my case.

Mitochondrial Damage and Autonomic Disintegration

April that year, I had another ER visit. I lost all bodily functions. My potassium was severely low. I would go to the ER in 2013 many more times.

2014: I had to stop working totally this year. I tried to come back and assist a friend of mine just being her loan officer assistant but the neurological pains and crazy foggy brain I was experiencing was just too much. Something that was so easy for me years earlier, I was now having trouble just doing basic loan officer task at this point. Strange neurological pains were becoming a normal. I stopped driving this year also. It was just getting to scary for me to continue. I continued to go to ER for multiple visits

2014- 2017: I went to the ER over 50 times for various reasons: heart pains, chest pains, shooting stabbing pains throughout my entire body. I almost always had low potassium. Over these years, we spent our life savings and pulled out a $100,000 from my husband’s 401k, which we spent on various treatment plans. We have traveled as far away to Philadelphia looking for answers. We even gutted our house when we were told at one time it must be mold that is killing me. We lived in a borrowed 5th wheel while my husband put our house back together. There have been numerous days where I felt I couldn’t go on one more minute. I felt like death was right around the corner.

In 2015 one of our doctors after reading my genetic report thought he found a breakthrough with a patient that had hypokalemia and Sjogren’s syndrome. He provided me a copy of the study they did on a girl with very similar symptoms to mine. He had our local compounding pharmacy mix a solution called Shohl’s. I took the solution after my doctor assured me I would be ok. Well, I tried it almost within in minutes I was convulsing and went into tachycardia. My husband called 911 ambulance took me to the ER. In route to hospital paramedic gave me nitroglycerin. I was monitored for several hours and eventually went home. During this time had been staying at my mother-in-law’s house for about 6 months because we weren’t sure at this point if something in our house was making me so sick. This was a very stressful time for me at this point we have no idea what’s going on and what’s causing this.

We did have some relief in 2017 when our local naturopathic doctor was able to get a new treatment called UBL or ultraviolet blood irradiation. I had about 6 months where I was feeling off, but having somewhat good days where I could semi-function. My viral count has been very high during these years, EBV, CMV, HHV6, etc., and possibly Lyme. If I push myself, I will crash for hours sometimes days until I start to get any strength back just to walk to the restroom.

Next, I went in for a completely different treatment called prolotherapy. I got one injection into my shoulder, and just like that my body reverted back to like I was before the UBL treatments. I was worse again. It was very strange my body reacted like that.

2016: I was diagnosed with dysautonomia by another specialist, an electrophysiologist cardiologist. I have several of the sub symptoms of dysautonomia including: postural orthostatic tachycardia syndrome (POTS), neurocardiogenic syncope (NCS), dizziness, vertigo, fainting, fast, slow or irregular heartbeat, chest pain, low blood pressure, problems with gastrointestinal system, nausea, disturbances in visual field, weakness, breathing difficulties, mood swings, anxiety, fatigue and intolerance to exercise, migraines, disrupted sleep patterns, temperature regulation problems, concentration and memory problem, poor appetite and overactive sense, especially when exposed to noise and light. We also met with a dozen or so other specialists. None were able to help.

I have multiple tears in both hips worse on right side. Multiple torn areas in the pelvic floor also.  Surgery is out of pocket and we have not been able to fly back and have surgery to repair those tears and hips yet as of 2019.

2018- 2019: I went to the ER only three times in 2018 and so far only three times in 2019. We try not to go because we know they never find much. I only go to be reassured that my vitals are still strong when I’m feeling at my worst. I have been denied disability. I had a neurocardiogenic seizure in the courtroom with judge and she still denied me. I have one last appeal that I am waiting on. I am not very hopeful that will go through. At this point, the dysautonomia, fibromyalgia/ chronic neurological pain and the low potassium are what are the hardest things for me to deal with. As of right now, we are concentrating on rebuilding my mitochondrial cells in hoping I can reverse some or most of the damage I think was a direct cause from the Lupron injections.

I was also on bio-identical progesterone creme from around 2012 to 2018. Then, in middle of 2018, my ND wanted me to try the bio-identical that went off the lunar moon cycle. It was a separate estrogen and progesterone creme in a plastic push-up type applicator. She said she was looking into it and thought it might help. Well, I tried it and had terrible side effects, I think most likely from the adding in the estrogen. After second month, I was having terrible stomach pains. I looked four months pregnant and was begging my husband to take me to the ER. The pain was worst at the part of the cycle where I took the estrogen only. I felt like she was going to die. In the past, I was always high in estrogen. I am not sure, but as soon as I introduced in that estrogen, it threw me out of whack terribly. I stopped that in November of 2018.

This is where I am now: in pain, unable to work or care for my children. My husband is my full-time caregiver. He takes care of our kids, shops cooks, does everything I used to do plus works his full-time job. I couldn’t do this without him. The doctors have run out answers. I believe it was the endometriosis all along, made infinitely worse by Lupron and the various rounds of antibiotics, including fluoroquinolones. The only way I can maintain my potassium levels is through huge daily doses. Otherwise, I slide into hypokalemia. We have a standing order at our local hospital to measure my potassium whenever I suspect it is low. We have sought treatment from dozens of specialists and spent our entire life savings and I am no better than I was 10 years ago. In fact, I am worse. Over the last 8 years, we have been supplementing with vitamins and minerals to try and repair the damage done to my mitochondria by the Lupron and the fluoroquinolones. Some things help and others do not. We are at wits end and do not know where to turn for help. Below is a list of supplements that I currently take.

Supplement List

Upon waking:

  • 600mg potassium,
  • 1 1/4 grain Naturethroid

Breakfast:

  • 3 200mg potassium. Daily total 1200mg
  • 1 Chewable Hydroxo B-12
  • 1 COQ10 100MG
  • 1 Biotin 10,000mcg chewable
  • 1 Chromium picolinate 200mcg chewable
  • 1 Desiccated adrenal from Standard process
  • 1 magnesium malate 100mg
  • 1 Thiamin 50mg
  • 1 Mitocore – it is like a multiple vitamin
  • 5 grams vitamin C, mixed with juice, plus I add Lugol’s iodine, colloidal silver, lymph drain and trace mineral mix.

Mid-morning:

  • 3 200mg potassium again – daily total 1800mg
  • B12 shot, a 100iu syringe

Lunch:

  • 3 200mg potassium, daily total 2400mg
  • 1 vitamin A 10.000iu
  • 1 vitamin K 90mcg
  • 1 Lugol’s iodine plus
  • 1 nettle leaf cap 400mg
  • 1 Monolaurin 600mg
  • 2 L-lysine 1000mg
  • 1 thiamin 50mg
  • 1 magnesium malate 100mg
  • 1 more Hydroxo B12

Diner:

  • 3 200mg potassium, daily total 3000mg
  • 1 thiamin 50mg
  • 1 milk thistle 150mg
  • 2 L-lysine 1000mg
  • 1 DHEA 25mg
  • 1 magnolia bark 450mg
  • 1 Digestive enzymes
  • 1 Dr. Berg Hair formula.
  • 1 L-carnitine 250mg

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.

Yes, I would like to support Hormones Matter.

Image: Maximum Speed of Raphael’s Madonna, Salvador Dali, 1954.

Posted originally on Aug 20, 2019.

Share

Shattering the Mirror: Becoming More than the Reflection of a Disease

3249 views

While writing a letter about myself to an online website recently, I found myself shocked and very much amused by the telling way I accidentally introduced myself. “Hello,” I began my letter, “my name is endometriosis and I am 29 years old.”

Endometriosis?!?” I giggled as I re-read what I mistakenly wrote, I had introduced myself as endometriosis?? Could there be a more obvious way of telling the world that endo defines me?  I suppose not. But who really needs a Freudian slip to guess that one?  Anyone with even a bit of insight could figure out the truth ten minutes after meeting me! And don’t you try to hide it – I’m sure it’s true for you too. Endometriosis consumes and defines the lives of all those who suffer from it.

But is that really true? Does endometriosis really have to infiltrate every part of our lives? Does it have to be the focal point of everything we do, or be the root of everything we feel about ourselves? My initial answer is an emphatic yes; there is no possible way to view our lives beyond the scope of endometriosis. But as I sit to muse about it longer, I begin to see another side.

You see, it’s not necessarily about seeing ourselves as something significant other than the endometriosis; it’s about viewing ourselves as significant despite the endometriosis.

I have been to many support groups for women with endometriosis. Each time I go I am amazed and inspired by the inner strength and beauty of these women. It is truly uplifting to sit and listen to what each of them has to say. To watch as one woman painfully and awkwardly attempts to sit down comfortably on a chair all the while saying something like, “But today is a great day, I only had to take two narcotic pills!!” Or to see another woman comfort a fellow endo-sister by genuinely telling her how strong and beautiful she is or how amazingly she handled a certain situation. I have firsthand experience of being comforted by another woman who was suffering with excruciating pain at the very moment that she held me in her arms to ease my pain. Time and time again I have seen the strength of women who could have legitimately decided to be selfish and angry but, instead, made the choice to be giving and kind.

So next time we look in the mirror and see a pathetic woman controlled by her endometriosis, let’s take a second look. We need to allow ourselves to see what we have become regardless of the fact that we have a terrible disease. Let’s look past the silhouette of a woman hunched over in agony and instead see the proud form of a strong, defiant woman whose illness will not define her; a woman who is powerful, kind, giving and beautiful whether or not she suffers. We are so much more than just a reflection of this disease.

About the author: RC is technically a special education teacher, specializing in working with children who have autism; or at least she was until endometriosis took over her life. Now she writes, blogs and tweets about endo while taking care of her miraculous two children that she has with her equally miraculous husband; not to brag or anything. RC is currently gathering stories from women with endo from around the world to put together into a book. You can share your story with her, or read her blog at Endo from the Heart.

What Can I Do To Help?

Hormones Matter is unfunded at this juncture and we rely entirely on crowdsourcing and volunteers to conduct the research and produce quality health education materials for the public. If you’d like help us improve healthcare with better data, get involved. Become an advocate, spread the word about our site, our research, and our mission. Suggest a study. Share a study. Join our team. Write for us. Partner with us. Help us grow. And perhaps most importantly, contribute.

To support Hormones Matter and our research projects – Crowdfund Us.

Image created using Canva AI.

This post was originally published in November of 2013. 

Share

Underinsured, Underdiagnosed and Anonymous: The Reality of Being a Woman in America

2026 views

This story was originally posted as a five part series on our site in 2011-2012 when the healthcare debate began heating up. As the debates over healthcare in general and women’s healthcare in particular have resurfaced once again, it is important to remember that these decisions have human consequences.

The treatment this woman received was sub-par by any measure, but not uncommon across women’s healthcare even when insurance is available. The lack of diagnostic acuity is striking and the treatments offered may very well have induced the cancer she later developed and to which she ultimately succumbed. Her story is emblematic of all that is wrong with our current economic model of medical care and all that goes wrong when we ignore women’s healthcare.

Rest in peace, my friend. You are missed.  

The Beginning of a Long Battle

It all started in my late teens. Recent high school graduates, my then-boyfriend and I were on our way from Orange County to L.A., when a driver entering the freeway rear-ended us as they were coming off the 91 onramp. A suddenly totaled car and severe case of whiplash quickly changed our prior plans, sending us instead to the local E.R. for immediate medical attention. A series of rush diagnostic tests later, my CT and MRI scans confirmed that I had suffered a C2 cervical neck-spine fracture with lumbar nerve involvement in the collision. I was fortunate to be alive, and luckier still to have survived without brain damage or paralysis, but I would not be simply walking away from this, either. Quite the reverse, it was actually just the beginning of a long battle to come.

Injuries sustained from the crash had triggered a myriad of chronic side effects and secondary conditions, including (but hardly limited to) chronic pelvic pressure, lower back pain, hip misalignment, fatigue, dizziness, and at that time, as-yet “undiagnosed hormonal issues.” I was 19, hurting, scared, and tens of thousands of dollars in debt overnight, due to my emergency room stay, all, through no cause of my own. Having to drop out of college to go through rehabilitative therapy and further hormone assessments over the next couple of years only seemed like more of an end-all to my young future back then. Launched head-first into a cold, cruel world of consistently inconclusive diagnoses and expensive, limited healthcare options, I truly felt the social stigma of being sick and uninsured. Splitting up with my high-school sweetheart a mere few years later, in no small part, because he wanted to have “children of his own”, I also really grew to feel the societal shame of being female and infertile, as well. So, I found myself dually disheartened as my abdominal pain and pressure continued to worsen, going on undiagnosed and untreated clear into my early twenties, despite the ever-growing list of costly blood labs, urinalyses, ultrasounds, and other screening tests, that my doctors had already exhausted.

Even with an employer-provided PPO, it would still be almost five years before any specialist would finally suggest what might be wrong with me (maybe endometriosis, maybe not), or explain what could have caused my prospective condition (maybe trauma from the earlier wreck, maybe not), much less tell me about potential treatments (oral contraceptives, laparoscopy, hysterectomy, or just plain living with the pain and hoping for the best). I was again referred to yet another gynecologist for yet another pelvic sonogram when, at long last, the ultrasound image revealed the suspected endometrial mass, once and for all (or, so we thought). The new gynecologist subsequently diagnosed me with endometriosis and put me on low-dose combo estrogen-progesterone birth control pills, taken seasonally, as an alternative to surgery and nerve damage risks. The pill helped relieve some of my symptoms for a while, but it was far from being a permanent cure to my ailment, and ultimately became much more of a curse than a relief to me. Additional complications from an unexpected, ruptured ovarian cyst, followed by an increasingly negative response to the synthetic hormones, also lead to questions about my original diagnosis and method of treatment. Did I have endometriosis at all…was it something else entirely…what do I do now?

Part 2: Endometriosis

I am continuing to write this anonymously because I continue to fear the social repercussions and potential backlash of publicly revealing my real name in association with my endometriosis and other health issues. I am uninsured and told by many, uninsurable.

We left off from Part 1 of my story with a tentative diagnosis of endometriosis, a ruptured ovarian cyst, and ever-increasing doses of oral contraceptives. At that point in my life, I was scared, in pain and worried that I and the doctors should be doing more.

But, as it turned out, there was not much more that I could do. The doctors said that even if it wasn’t endometriosis, the pill would probably still be the least invasive and least risky treatment option available to me. They told me this without any intention of scheduling further abdominal inspections, pelvic imaging, endometrial biopsies, or blood draws for biochemical markers, despite my pleas for each. Then again, they had confirmed my endo diagnosis without a laparoscope, or CA-125 antigen test, as it was. So, what else should I really have expected from them now? Life on oral contraceptives continued because, apparently, my only other choice was living without a uterus (and risking paralysis due to prior cervical vertebrae injury) at only twenty-five years of age.

I had never had long, frequent, heavy, or uncomfortable periods, much less menstrual cramps, as a young teenager. But, as a woman on combine oral contraceptives in her mid-twenties, I was experiencing altogether nonexistent cycles, regular breast discharge, ceaseless bloating, and unrelenting gastrointestinal pain and pressure (on top of chronic neck and back pain from the past car accident). One silver lining to my proverbial cloud was that I had finally regained most of the neck control and movement previously lost in the collision. Another consolation to this difficult situation was that I had also saved up enough money, working through physical therapy, to return to school. And, maybe best of all, I had found (without trying) a steady, supportive, and understanding boyfriend, who was not only my match in every way, but who always stayed by my side, through the ups and downs alike. Little did we know the coming financial and health woes to befall us, yet again, over the next few years.

Uninsured and Uninsurable

Fast forward about three more years into the future I had transferred to the university as a junior during the Fall term. My boyfriend and I had been together, going on strong, for four years. And, I had been working part-time at a job that I loved for nearly two years. The future again seemed bright. Healthcare access, however, remained bleak.

The COBRA benefits from my old employer had long expired, not that I could have afforded them at $600 per month anyways. I did not qualify for health insurance at my new workplace because I wasn’t full-time there, owing to a loaded class schedule on-campus. And, the only medical coverage that I had been able to afford since leaving the other company was a short-lived, hybrid POS-HMO plan, which I ended up having to cancel early as nobody in my area would accept it (there went another few hundred dollars, I couldn’t afford to lose, down the drain). We had been working around the system, paying out-of-pocket for generic prescriptions, and general lab procedures, at local understaffed health clinics, since no one else seemed willing to work with us. This got us by (it had to) until an unexpected slip-and-fall accident that December rendered a hidden colon tumor palpable in my lower body (something we wouldn’t learn for another four months or so).

The ER wouldn’t treat me, and only served in referring me to a GI/Endoscopy specialist, who in turn refused to see me because I didn’t have insurance. A major medical carrier subsequently denied me coverage as uninsurable due to pre-existing conditions (namely my C2 fracture from nine years earlier, and my endometriosis diagnosis from four years prior), essentially blacklisting me among all other healthcare providers. I couldn’t even qualify for government assistance of any kind. I had come close to dying in just a few short months without knowing what was wrong with me, and we were running out of time and options fast. That is when my boyfriend popped the question, to get me on his insurance, and to save my life.

Part 3: Marriage, Insurance, and Endometriosis

We eloped without much fanfare at the Office of Civil Marriages in the spring, and over-nighted a certified copy of our marriage certificate to my newly-wed husband’s H.R. Department ASAP. A month later, we received our new medical cards, and my husband’s primary physician gave me referrals to a network-approved gynecology specialist and internist. The gynecologist ordered another abdominal ultrasound, blood draw, urine sample, and Pap smear to check for viral, bacterial, and/or urinary tract infections, as well as to rule out other possible conditions like kidney stones or gallstones. The internal medicine specialist referred me to a gastroenterology-endoscopy doctor to get my spleen, colon, appendix, and liver more thoroughly checked out. I also remember asking both of them about going off the pill back then, but each one had advised me to stay on it, at least, until my initial lab results were in. It was definitely no honeymoon as the poking and prodding officially commenced once more.

The Pain of Endometriosis

My upper-left abdomen was tender to the touch below my rib cage, and my lower-left abdominal pain had grown much more intense, now radiating from my stomach to my backside in sharp, rapid, debilitating jabs. It felt like my organs had dropped, and my insides were trying to force their way out of me. It stung to urinate, hurt to have a bowel movement, my urine was very cloudy, and there was a lot of (too much) blood in my stool. The burning sensation in my bladder and the rigidness of my muscles were limiting my mobility, aggravated lower quadrant soreness and spasms were impairing my sleep, and a new found fear of vomiting or otherwise using the restroom was inhibiting my appetite. I was faint, weary, and weak from excess blood loss, malnutrition, insomnia, distress, and delayed treatment. And, I was just about to begin another taxing hodgepodge of could-be prognoses throughout a long (almost too long) diagnostic process of elimination.

The gynecologist reported that I had crystals but no stones in my urine, and prescribed me antibiotics for a bladder infection (one problem down, many more to go). The ultrasound image still showed a small mass and fibrous tissue, but they did not appear to be ovarian or poly cystic in nature. Likewise, although my iron levels were down, my lab panel showed no sign of kidney or gallbladder abnormality or dysfunction. And, there did not seem to be any cervical or vaginal lesions, viral or bacterial. They said that a small uterus might explain my short, light, and irregular periods during adolescence (previously a non-issue to me), as well as an increased susceptibility to endometriosis, and a decreased success rate for surgical assessment or treatment thereof. So, laparoscopy was ruled out as a viable diagnostic test or care option for endo altogether, rendering my prior endometrial diagnosis unconfirmed (but still, ironically considered a pre-existing condition), and my current status was again in question. It was, however, recommended that I ask the gastroenterologist/endoscopy specialist about the possibility of any additional bowel, thyroid, and/or pancreatic involvement, though.

More Doctors

By the first time that I saw the GI/endoscopy doctor who the internist had referred me to, a few weeks later, my bladder infection had cleared up and my urine was back to normal. But, I was now passing mucus, tissue, and blood clumps, without bowel movements, in addition to suffering from constant rectal bleeding (without any bowel activity). I could now also feel a throbbing lump bulging against my insides from somewhere near my perineal area, making it extremely difficult for me to sit down (when it had already become problematic for me to lay down on my stomach or even to lie on my back). The gastro-endoscopy physician told me that I had injured my spleen in the slip-and-fall accident, and that it would probably take another month or so for it to fully heal on its own, thus explaining the tenderness that I had felt under my ribs. The doctor also suspected that I had colitis (inflammation of the large intestines) with internal prolapsed piles, and wrote me a prescription for sulfa antibiotics, hydrocodone painkillers, and corticosteroids, for at-home treatment. The second course of antibiotics made me feel a little bit better, and the painkillers helped me to sleep some, but the corticosteroids made the small lump inside me swell into a larger bump ready to burst through my very skin. No, I didn’t have piles or colitis, either.

Five weeks and a bunch of different tests later, I also didn’t have appendicitis, pancreatitis, and hepatitis, cirrhosis of the liver, thyroid disease, or diabetes, among other things. I still didn’t have gallstones or kidney stones (they double-checked), but I was still on oral contraceptives (and hating it) as continued to be advised for no given reason. I had been married for four months; the summer was half-over and we were spending hundreds of dollars per month in medical premium deductions, on top of hundreds more in mounting insurance co-pays, and other related expenses to no avail (needless to say, our savings and hopes were dwindling quickly). They didn’t want to do a colonoscopy on me because I was way under the age of fifty, had no recorded family history of colon polyps, colonic ulcers, diverticulosis, or diverticulitis, and nobody really expected to find anything anyways. But, they too had run out of other tests to perform, even though I wasn’t getting any better under their watch. A preliminary colonoscopy and biopsy, a repeat procedure, and multiple follow-up biopsies, however, finally and shockingly confirmed that I had an adenocarcinoma tumor in my colon. I had colon cancer? I had colon cancer.

Part 4: Colon Cancer

My husband and I were suspended in a state of utter shock and disbelief, as the GI/endoscopy center rushed us referrals for a variety of different radiology and imaging services. We were feeling overwhelmed and under pressure, but had precious little time to openly react or otherwise respond to my diagnosis. Right now, we had to have my cancer staged and graded sooner than seemed humanly possible. I drank barium contrast and fasted for digestive system x-rays, I went on a clear liquid diet and temporarily stopped my meds for full-body PET scans, I repeated barium prep for CT scans, and fasted again for MRIs.  My diet consisted mostly of chalky colon cleansers, plain water, 7-Up, chicken broth, boiled ham, and scrambled eggs during this time, which trifling as it sounds made me crave a juicy steak and pulpy fruit juice like nothing else.  By the end of the month, I was allowed to give into my cravings for a night—a bittersweet reward at best—while we waited in high anxiety for my pending results to come in.

I had a graying, high-grade, stage II-B neoplasm, with partial bowel obstruction, which had enlarged to about three centimeters in size. The tumor had grown through the wall of my colon, but had not yet metastasized to my lymph nodes, bone marrow, or other organs. I did not yet have necrosis or jaundice either, but compromised liver function and tissue death were both very real concerns for me now. The fast-growing lump had apparently started out as a benign polyp, but had turned malignant having gone undiagnosed and untreated.  I was relatively young, I’d never smoked, I didn’t drink or do drugs, and I wasn’t promiscuous, so nobody could easily explain how or why this was happening to me (as if those were the only reasons that something like this could happen to anyone). Likewise, no one could tell me how the polyp could have been missed, or why I was denied the medical attention that I had actively and continuously sought, which could have prevented my case of cancer altogether.

I did finally and inexplicably get to stay off birth control pills this time though—and, coincidentally, my tumor never increased in size after I discontinued the use of oral contraceptives, hmmm…

The diagnostics and staging completed, we were then referred to a local oncologist, radiologist, surgeon, and hematologist for consultation, healthcare review, and treatment selection. The oncology specialist wanted to do an immediate total colectomy with long-term, post-surgery, high-dose chemotherapy port, and a permanent colostomy bag. The radiation specialist wanted to start with daily, low-dose, external beam radiation, personalized intensity modulation radiation therapy, and low-dose oral chemo, for six months. The surgical oncologist did not recommend surgery for temporary or permanent bowel resection or any surgical procedures for chemo pump placement—in fact, they suggested radiation with or without chemo. The hematology lab would be doing my tumor marker and blood panels one to three times per week as needed throughout my treatment, whichever option we chose. And, me–I wanted biological treatment, but it wasn’t covered by insurance, so I reluctantly had to settle for beam radiation and oral chemo in lieu of extreme abdominal resection surgery, since I wasn’t rich.

Next, everybody gave us the obligatory best-case/worst-case scenarios, after which I was scheduled for my radiation tattoos, body molds, and chemo instruction in preparation for my first treatments and corresponding blood monitoring tests. Having turned down radical surgery and the chemo port (per the surgeon specialist’s advice), my oncologist was suddenly and inconveniently unavailable to see me now. So, my radiologist had to reach the oncology nurse to confirm arrangements for my ongoing blood work and prescription refills, since her boss was neglecting to do so on a regular basis. The oncology nurse also secretly stepped in and reduced my chemo pill dosage by half without telling the oncologist (she told me not to tell him about it either), because as she said—off the record—he had prescribed me a dangerously high amount, comparable to that given to a terminal prostate cancer patient. I had to quit the job I loved, my husband had to stay at the one he hated, and I had to take incompletes and signup for medical leave at school…where only last year I had been hopeful, I was once again despondent.

Just one month into chemo-radiation, I quit menstruating, and was no longer able to be intimate with my husband (my still fairly new husband) for the duration of my treatment (my fairly long treatment). I lost all of my lower body hair from the bellybutton down, and went through major skin tone and skin color changes, along with startling food taste changes, and contemptible chemo fog.  It had become a challenge for me just to get off the couch to catch a ride to the doctor’s, so much so that my time was predominantly spent asleep, in treatment, or in diagnostics, by this point. And, when it didn’t feel like things could get any worst, my husband’s company announced their looming bankruptcy and liquidation. That’s when the rejection letters for my previously pre-approved (and thus documented) life-saving medical procedures began to arrive from the insurance company. It’s also when we found out that because my husband’s employer was liquidating, not restructuring, that we would only qualify for one month, not one year, of COBRA benefits, and that the one month of COBRA coverage we were eligible for would cost us $1,300 even in light of the hundreds of thousands of dollars (literally $300,000+ in just one month of the bankruptcy/liquidation notice) in bills which had abruptly begun to flood our mailbox…

Part 5: Endometrial Cancer and No Insurance

Since the last post, I had begun chemo to treat my cancer.

My radiologist became my primary doctor, as the oncologist remained largely unavailable to me, after hearing the news that my health insurance would lapse within the coming months. The oncologist increased my dosage of radiation, and rescheduled my GI, endoscopy, and radiology follow-up exams to earlier dates. The radiation office not only waived a significant portion of their own service fees for me due to the situation, but also helped us to handle a big part of the lengthy medical dispute we were facing with our insurance company. They eradicated most of the tumor, but could not remove my residual scar tissue, before our COBRA expired. Even with all that they had done for us up until then, there were still strict systematic limits as to what they were permitted to do for us after that time. Not only was I without insurance yet again (my husband was too), but I was also now without the support system that had been my radiologist and their crew something that was much much harder to overcome than I had expected it to be.

Remission from Endometrial Cancer but No Insurance Once Again

I was in remission, but back to square one as far as access to medical coverage went. I was in remission, but I had undergone medically-induced premature ovarian failure, and was deemed post-menopausal before I would even reach my thirties. I was in remission, but couldn’t take hormone replacement therapy or herbal alternatives, because I was already at increased risk for recurring and/or second cancers. I was in remission, but had semi-permanent radiation scars and temporary post-chemotherapy cognitive impairment. I was in remission, but I still wasn’t well enough to return to work, go to school full-time, or to take a belated and long overdue honeymoon yet. I was in remission, but I was depressed, and didn’t know how to move forward without the regular group of doctors and nurses who had been there for me emotionally only a week before.

Why was my life saved (and through such extreme measures), only to be put right back at risk, through the ever-incipient denial of insurance, medical assistance, and access to healthcare? What was the point of it all?? It felt like maybe I shouldn’t have been striving so hard to live, but instead perhaps that I should simply have accepted the inevitability of my own death (something I am now faced with every day that I do wake up in the morning, anyways). My husband had only been able to find part-time jobs, since his old workplace had closed. So, we knew that we would have to move out-of-state to get the help that we needed. We just hadn’t anticipated that it would be even harder to get coverage, aid, or access, once we left. And, we still don’t know how much harder it will get, as we continue to race border-state budget cuts and residency requirements, just trying to keep me alive. Sometimes, it’s hard not to doubt that we’ll make it in time at all.

I have always worked hard, and I’ve always tried to give back to the community. I was glad to pay my dues, and happy to put in my time. So, I have an exceptionally hard time understanding how so many have come to turn their backs on me as I ask them to help keep me from dying, if not from hurting, particularly when that’s supposed to be their job. How come I’m not worth your time and attention? Why don’t I deserve to live? What’s so wrong with me, that you can’t even tell me what’s wrong with me?

I wish that I could leave you with a happier ending, but this never-ending vicious cycle has not left us witch much optimism, hope, or spare change, ourselves. Aside from knowing that my tumor is back, we don’t know just how bad it is. What we are gravely aware of is that I am out of the safety net and into the danger zone for lymph and bone involvement plus metastatic cancer growth. It’s proven impossible to get a standard colonoscopy and biopsy at my age (twenty-plus years too young) without a doctor’s order, and impossible to get a doctor’s order without insurance or assistance (but, you’ve already heard that story before) all this, even in spite of my personal history of colon cancer. And, it will be equally impossible to get any traditional treatment if/when the cancer spreads to my liver or lungs, too. But, at least nobody will be talking about colostomy bags then, anymore. When we do find the rare body scanning clinic that will take cash patients on self-referral, they all also inevitable deny me the less-invasive virtual colonoscopy because I’m still in my childbearing years even though I’m medically documented as being POF, and haven’t had a period in over six years now. You’d think it would be a non-issue, but for some reason it isn’t. Maybe someone out there can understand our fear and despair, but a lot of other people just don’t seem to care.

We Need Your Help

Hormones Matter needs funding now. Our research funding was cut recently and because of our commitment to independent health research and journalism unbiased by commercial interests we allow minimal advertising on the site. That means all funding must come from you, our readers. Don’t let Hormones Matter die.

Yes, I’d like to support Hormones Matter.

Share

Endometriosis: Trust Me, You’re Not Crazy

2325 views

When I was 19, I was diagnosed with endometriosis. Severe endometriosis. The kind that ‘we usually see in women in their forties.’ But that’s not where my story begins.

When I was 12, I got my first period – and it was excruciatingly painful. Now, I always used to pride myself on being a pretty tough kid. I mean, I once broke my ankle and walked on it for a whole day before heading to the ER. Modern day warrior – I know. But this pain was different. It took my breath away the instant it started – and it was years before I could breathe easy again.

It was a whole year until I got my next period, and it returned with a vengeance. Naturally, after enough complaining, it became clear that something wasn’t quite right. My family did everything they could to try and find answers. Doctors checked my kidneys, my stomach, my blood, my ovaries, my muscles, my lungs, my bones – all to no avail.

For a few hazy years, it was largely believed that the pain I was feeling was likely just a symptom of severe anxiety, which, ironically, gave me severe anxiety – and depression to boot. Every time I felt the pain, I thought I was losing my mind again and tried my best to ‘just stay calm’ so it would go away. I stopped telling people when it hurt, for the fear of being labelled a hypochondriac.

I simply could not understand how everyone around me was managing to live their lives so much easier than I was. I couldn’t stand living in my own skin.

When I was 17, I lost my virginity. I was always told that it would hurt the first time, so I thought it was normal. By the third time, I started to wonder how anyone could enjoy sex through gritted teeth.

I pushed for answers. This was different now – I knew something was wrong. I knew such deep pain during sex wasn’t attributed to anxiety and I was determined to figure this out.

I went to my doctor who did nothing but joke about whether or not I was ‘doing it right.’ He was more concerned about my contraception than my pain. I went to another doctor who simply made the same disgraceful joke, and sent me on my way. Another asked if I’d considered that I may be bipolar.

I understand, I get it. Here’s this patient with a long history of depression, anxiety, supposed attention seeking behaviour and the same constant complaint written all through their history – but that’s the harsh reality of an undiagnosed endo patient, isn’t it?

When I was 19, I was diagnosed with endometriosis. Severe endometriosis. The kind that ‘we usually see in women in their forties.’ It was the most bitterly disappointing and wildly validating outcome. I’d put myself through absolute hell because I thought it was me with the problem – not a failing medical system. Not a lack of education and a complete disregard for a patient’s continual, relentless complaint.

After years of having to be my own advocate, if there was anything I wanted you to take away from my story, it would be this: Never disregard anyone’s pain, ever. Be it physically or mentally. Always validate other people’s concerns.

Lastly, to my beautiful endo sisters, never, ever give up. Allow yourself to rise above your circumstance. And when you are tired and vacant and feel like giving in, remember that you are far, far stronger than you let yourself believe.

We Need Your Help

Hormones Matter needs funding now. Our research funding was cut recently and because of our commitment to independent health research and journalism unbiased by commercial interests we allow minimal advertising on the site. That means all funding must come from you, our readers. Don’t let Hormones Matter die.

Yes, I’d like to support Hormones Matter.

Share

When Your Wife Has Endometriosis

5358 views

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.

We Need Your Help

Hormones Matter needs funding now. Our research funding was cut recently and because of our commitment to independent health research and journalism unbiased by commercial interests we allow minimal advertising on the site. That means all funding must come from you, our readers. Don’t let Hormones Matter die.

Yes, I’d like to support Hormones Matter.

Share
1 2 3 4