hysterectomy

Lumbar Scoliosis After Ablation and Hysterectomy

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I had an ablation at age 48 after heavy and debilitating bleeding that was robbing me of my life. At age 58, I had a hysterectomy where the cervix was also removed. Before the ablation, I spent half the day in the washroom changing pads and I was undergoing a demanding home renovation at the same time. It was hard to meet with construction contractors while blood would start gushing out of me at any given time. The bleeding made it very difficult to give important issues my undivided attention. Long story short, I had the ablation and it did solve the problem of the bleeding but intercourse became impossible. It was agony, so I gave it up. Even when I had to have a trans-vaginal ultrasound the instrument would not fit past 1-2 inches so it could not be done. I was never warned about these consequences. In spite of all that, the relentless bleeding was still the greater of the two evils.

I live in Canada and I must say I was not encouraged to have a hysterectomy for the bleeding. The family doctor would do nothing but prescribe hormones of some kind for 6 months, which not only did nothing for the bleeding but they had side effects on top of it. The hormones made me feel nauseous and bloated while I prayed for the bleeding to stop. The gynecologist that did the ablation and myomectomy for the large fibroid that was supposedly the cause of the bleeding only gave me one clue about the problems I might encounter. He commented several times that average age of menopause is 51 and since I was 48 it would mean that if I was intended to start menopause at the average age, this procedure would mean that I would start three years earlier. I didn’t think menopause would shrink the length of my vagina and turn my insides into “sandpaper” as was described by my longtime partner. I still don’t understand how that happens because of an ablation but any insights would be welcome.

New Onset Osteoporosis and Scoliosis

What I found interesting after reading the comments on the ablation and hysterectomy topics is that without the ligament cutting of the hysterectomy, I started to get the same effects after the ablation. First, I noticed that one side of my waist was not indented like the other one. I went to a physiotherapist thinking I needed special exercises. She gave me various exercises to do, which didn’t work because she was not keen enough to notice that I actually had the symptoms of lumbar scoliosis. None of the posts I read mentioned any experiences where an ablation could be connected to scoliosis or osteoporosis and so I am very curious to know if others have noticed if, not long after the ablation (within 12-18 mos.), their bones became weaker and osteoporosis and scoliosis set in?

I had never associated the ribs dropping to the hips with the hysterectomy because I already had this happen before the hysterectomy and after the ablation. All along I have been blaming it on the lumbar curve in my spine and the low bone density. What I found unusual is that at age 50 my family doctor sent me for a BMD x-ray (my first) and when she got the results she did not alert me that I had osteopenia or that I should be upping my calcium and Vitamin D intake. Because this doctor minimized the concerning results I had a false sense of security that all was well. I was totally unaware that behind the scenes my condition was deteriorating into moderate to severe osteoporosis or that I had a lumbar curve of over 30 degrees. It took me FIVE years to get the miserable truth with the next BMD at 55.

Three Inches Shorter but Taller in Wisdom

In Canada a woman is entitled to a BMD every 5 years if they are in the normal range. Not only did this family doctor not warn me about fighting the osteopenia, she could have sent me back for another BMD much sooner because I was not in the normal range. In fact it was MY idea to get the BMD at 55 just because I was eligible again. I was completely unsuspecting of the gruesome truth about my condition. By this point, all of the same skeletal changes that those who have had hysterectomies describe had manifested. I can’t help but wonder if there is possibly a connection between ablation and bone weakness leading to osteoporosis and scoliosis providing yet another way for the spine to compress? Any information or similar stories would be gratefully appreciated and any questions someone might have of me if I left anything out would be more than welcome. It is unfortunate that a genuine attempt to solve one health problem would lead to so many unwelcome and unexpected changes to our bodies and our peace of mind. The only good that has come from this is that I finally found this website.

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

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Hysterectomy Experiences: Misinformation and Lack of Consent

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Gynecologic surgeries, namely hysterectomy (uterus removal), oophorectomy (ovary removal) and C-sections, are the top overused procedures in the U.S. Only 10%, at most, of hysterectomies (and probably fewer oophorectomies) are considered necessary as cited in the “Hysterectomy Facts” section of this article. The 90% “elective” rate would indicate that these surgeries are “restorative” or at least harmless, but medical literature and women’s experiences prove otherwise.

A few years ago, I began writing for Hormones Matter about the consequences of hysterectomy and oophorectomy. Year after year, these posts generate tens of thousands of views and hundreds of comments. The comments inevitably follow the same pattern. The surgery was recommended or sometimes forced on a woman for reasons that are not typically medically warranted suggesting that many gynecologists use unethical and fraudulent tactics, such as those discussed here and here.

Worse yet, after the surgery any negative effects are dismissed by the doctors as unrelated or untreatable. This leaves women fending for themselves. With the internet, she finds us and discussions ensue. We thought it was time to highlight those comments, to show what women are saying about their experiences. For the next several weeks, we’ll be re-publishing some of the most telling stories of declining health and profound feelings of betrayal after female organ removal.

Deceit and Bullying

The following comments are the most striking examples of “fraud in the inducement” which is defined as “the use of deceit or trick to cause someone to act to his/her disadvantage” as defined here. This definition goes on to say that “The heart of this type of fraud is misleading the other party as to the facts upon which he/she will base his/her decision to act.” My article here explores the con of female organ removal. The HERS Foundation wrote a blog on “fraud in the inducement” which can be found here and has 100 comments. Here is my personal story of how I was scammed. Other women who’ve written for Hormones Matter have also been given hysterectomies without (informed) consent. Their stories can be found here, here and here.

The first comment listed below is the most glaring example of fraud, as the doctor fabricated the woman’s fibroids and was deceitful about her ovarian cyst. Thankfully, the woman sensed that she was being played and did not fall into his trap. It’s so important that women get their medical records and do their own research. But, unfortunately, medical records cannot always be trusted either so we can’t count on them to protect us from fraudulent tactics as evidenced in this first comment. This woman’s gynecologist lied in her medical records to protect himself. My medical records from both my gynecologist and my gyn oncologist contained lies as did those of many women with whom I’ve connected.

Donna writes:

“When I was 41, I had a couple of irregular periods but otherwise I had never had any gynecological problems…. So, I went to an OB/GYN who was VERY well known and popular in my city… he examined me and said my uterus was the size of someone at 3 mos. pregnancy. A couple of days later, I was back in his office to discuss the results. As soon as he walked in, the first words out of his mouth were, “You need a hysterectomy.” I was taken aback, but thought to myself, okay–maybe. I said, “Is it fibroids?” And he said, “Yes! Multiple fibroids. And a cyst on your ovary.” I still couldn’t really believe it, but went on with the visit. He asked for permission to “go ahead and take out my ovaries if during surgery he sees that they’re bad.” What? I said, “okay—I guess.” But I wasn’t really buying all of this. He told me to plan on “a nice six-week vacation,” and he proceeded to set up the surgery for the following Wednesday, just five days from then. I left being very skeptical…So I called his office the next day and told the nurse that I was not going to have the surgery and the doctor called back almost immediately asking why. I asked him some questions (based on my reading) that he should know: What kind of cyst was on my ovary? I had read that most women have functional cysts on their ovaries during every menstrual cycle, then they dissipate. The doctor can tell what kind of cyst it is on the sonogram. What options are there besides surgery? He was agitated and said he didn’t know what kind of cyst it was until he got in there (lie) and “there are no other options”! (another lie). He said that if I wanted a second opinion, then go get one. So I did. I went to… saline sonogram of my uterus, which would give an even better picture. Imagine my surprise when the results were NO FIBROIDS whatsoever! And, it was indeed a functional cyst. The former doctor outright lied about the whole thing. I wrote him a letter and told him my results that I had no fibroids and to let him know that I know he lied. I asked for my medical records, and on them on the date of my exam, he had written his recommendation for surgery and “all options discussed with patient.” Another horrible lie. Unfortunately, just about every person I know who goes to him has had a hysterectomy. And none of them had cancer or anything very serious. It’s chilling, too, to hear them tell the story because the doctor uses the same phrases that he used on me. That was 15 years ago; today I’m 56 and have gone through menopause naturally, and I never had any other issues. It was simply irregular periods in the beginning perimenopause stage. My doctor at… told me this. The former doctor never once mentioned that it could be perimenopause. I’m hoping more women will question and stand up against a diagnosis that just doesn’t seem right or make sense, just because a doctor is telling them it’s so. Always get a second or even third opinion!”

Marie writes:

“This was never what I wanted. I went for medical attention…. After an MRI, the next day my family and I were told that I had to have an emergency hysterectomy and possibly my colon…. PLEASE help STOP this modernized form of sterilization of woman!!!!”

From Marlo:

“Oh wow. I feel so duped. I had no idea about all these problems after having a total hysterectomy…. I thought everything would be so much better after this. That is what my new OBGYN made me feel like.”

Rachel:

I had numerous promises and scare tactic talk used on me. I would give anything to not have the surgery. I am slowly dying from… and no doctor will help me.”

Jacqueline:

“I had the same disgusting lied to procedure done to me two years ago. Why do doctors castrate woman. Why. It makes no sense at all. Why do they cut out our sex organs? Why do they disable us?… Every woman who has this done has been harmed and brutilized…. Even rapists are treated better.”

Donna:

“I am truly horrified to read these stories…. They all say the same thing (especially if you’re over 40), that “you don’t need your reproductive organs anymore if you’re done having children.” This is an absolute lie… the doctors are very intimidating and we find it hard to question what should be their expert opinion that’s in the patient’s best interests (not their wallet’s).

Robin:

I refused to sign a consent for a ‘complete’ hysterectomy and was promptly knocked out so one could be performed regardless of what I needed or wanted or even agreed to! So, I knew immediately upon waking up in recovery what had been done to me…. I didn’t begin to understand how drastically my life would change from that moment on….”

Amanda:

I too was told more likely than not you have cancer. …gyns are so quick to just to yank everything out…. Additionally, they don’t fully explain options nor explain how serious the surgery will be….”

Shanda:

“I was told I would feel better… but unfortunately… I do not… the worse I have ever felt….”

Elissa:

“I too had a hysterectomy and was told how great I would feel.”

Sunny:

“I had robotic Laproscopic hysterectomy on 10/15/15…. I was told “you will feel like a new person after the hysterectomy.” They were so wrong! I feel 10 times worse…!

Elaine:

“Surgeon basically told me I had to have a hysterectomy, I had gone through menopause so I was not using it anyway.… I feel I was not thoroughly informed and this surgery was the biggest mistake!”

SG:

“… it is too late for me.… I had a hysterectomy 4 years ago… the gyno decided it was necessary… and later told me he found a few nasties down there… I never received any pathology results to indicate this….”

Rebecca:

“Was advised the only option was a total hysterectomy had it on 6th February 2014.… I can’t cope anymore.”

KME:

“Looking back I remember my OB matter of factly telling me that surgery was really my only option and cheerfully started to schedule the procedure right then and there during the initial exam.”

Elissa:

“I too had a hysterectomy and was told how great I would feel… my bones hurt! My whole body hurts! I have more spider veins in my legs now than I remember my grandma having when she was 70.”

Convenient Omissions

More frequently than not, it appears physicians fail to inform women of the potential side effects.

F D:

“I feel very angry that I was never told of these very debilitating side effects.”

Gail:

“My life changed the day I went to a women doctor who did not disclose everything when she recommended a total hysterectomy for me due to a bladder prolapse.… Doctors seem ill equipped or unwilling to spend time to explain thoroughly the consequences of having your lower organs removed. Somebody do something!!!!!!!!!…please.”

Nicole:

“I wish I would have known about all of this prior to the surgery so I could have passed on having a complete hysterectomy….”

Sharon H:

“Oh how I wish I knew all this before my surgery. I would NEVER have had it done.…”

Irene:

“I was never advised about the negative. MY BIGGEST REGRET IN LIFE IS HAVING This TOTAL HYSTERECTOMY.”

Theresa:

“Like others my gynecologist never explained all the side symptoms to me. Had I known I would’ve just removed my fibroids ONLY.”

Elizabeth:

“I had a partial hysterectomy several years ago…. If I had known all this before the hysterectomy I wouldn’t have had it.”

Nora:

“I had a TAH in December. The surgery shortened my vaginal canal by 3 inches. After 27 years of marriage I am unable to have sex. I feel castrated. Can this be reversed? I never knew this could happen.”

Pat:

“I had total hysterectomy 7 years ago due to fibroids. I still regret having it…. I feel duped because the doctors never mentioned the sex disadvantage. I wish someone had told me.”

S M:

“Can’t believe what I have read – I match your situation entirely. I feel so let down by my consultant, these changes to my sexuality were never suggested to me…. I feel numb, panic stricken and so very sad.”

KME:

“I was never told about ANY possible adverse short or long term complications from the surgery, especially long term anatomical changes. Nor was I offered any other choice than the surgery or an unwieldy and painfully uncomfortable pessary….”

Barracuda:

“Oh and you’re totally right about patients not being informed, I went in blind! Went home blind too. I had a short, vague pamphlet that didn’t really answer anything directly about what to expect….”

Julia:

“Again, none of the potential problems, nerve damage and prolapse are not mentioned in the usual hysterectomy surgical blurb. I asked specifically about hormones etc and was assured my remaining ovary would be doing the work of both but in the off chance it didn’t hrt would do the job. Of course I know now that one form of hormone can never replace the delicate balance of multiple hormones….”

Marlo:

“I feel like I am 90 years old when I sit for a while and then get up I cant even walk because the hip joint pain is so bad…. I did not have any idea about the physical changes that are now going to take place.”

Sharonj:

“So I trusted my Doctor and didn’t search on the internet for the side effects of a hysterectomy. I wish I would have… I wouldn’t be where I am today. I guess that means I’m twice the moron.”

Yvonne:

“I came across [sic] this site while once again researching all my post op problems from my recent hysterectomy…. I wish I would have know before how I was going to feel.”

Dismissal of After Effects

When women question their doctors before surgery about various negative effects, they are typically told that the negatives they’ve heard or read about are “nonsense” or rare. When they experience these after surgery, they are typically dismissed as unrelated.

Sharonj:

“My doctor and her nurses told me to avoid the internet so I wouldn’t be scared with any horror stories. The thing is, 4 years post-op and my story is darn near identical to the ones I found here. The endometriosis I had my whole life (I’m now 46) was a cake walk compared to the hell I’m in now!”

Sunny:

“your symptoms do not sound like they are from your surgery… maybe you should see a neurologist.”

DM:

“This is a fantastic piece. So much detail and so much supporting data…. Only wish I’d seen it before my surgery… though I suspect my doctor would’ve told me it was all nonsense.”

Marie:

“I have severe pain I am dealing with, especially on my spinal cord. The surgeon claims it has NOTHING to do with the surgery, but I did NOT have it prior to the surgery. PLEASE help STOP this modernized form of sterilization of woman!!!!”

Post-Surgery Medical Abandonment

Consistently, women express that once after effects emerge post-surgery, their doctors are less than helpful.

Sunny:

“My surgery date was 10/15/15. Felt really great up until last week of January 2016…. Noticed drastic, sudden sharp pain from my lower back shooting around the sacrum, up into my spine, all the way to my neck and head. I am in so much pain all day everyday and nothing helps whatsoever. Naturally my GYN got his money out of me and conveniently he is all booked and per his nurse… ‘your symptoms do not sound like they are from your surgery in October 2015– maybe you should see a neurologist.’

WS:

“It became clear very quickly that I had become a different person. I felt like my HEART and SOUL were removed in that operating room. Despite being prescribed estrogen, everything fell apart. I quickly spiraled into a suicidal depression… with a lengthy list of symptoms of hormonal deficiency and endocrine havoc…. Yet a call to my gynecologist/surgeon resulted in being told ‘we’ve never heard of those problems before’ followed by the phone being hung up. He’d now abandoned me as his patient despite having been under his care for 20 years….

Suz:

“… Doctors don’t seem to want to help and didn’t explain all this beforehand.’

Rachel:

“I would give anything to not have the surgery. I am slowly dying from worse pelvic pain, new severe symptoms, adhesions and no doctor will help me.”

Robin:

“I contacted my gynecologist and told him. I begged him to help me…. I was told to find another doctor since I had so many problems.”

ATH:

“I went back to my obgyn (more than once) and was blown off and told pain was common and would go away on its own.”

When Will it End?

These surgeries have been largely unnecessary since their inception in the late 1800’s. There have been efforts by various organizations as well as Congressional hearings, one in 1978 and one in 1993 but still the problem persists. About half of all women will end up having a hysterectomy. And 55% to 73% of them will also have a healthy ovary or ovaries removed. Those are shocking statistics! You can hear the desperation in some of the aforementioned comments. Unfortunately, our voices are also silenced on some of the hysterectomy forums such as the hysterectomy “sisters” site, the UK Patient.Info site and a Surgical Menopause site. The many women’s health organizations seem to only care about women’s “reproductive choice” (access to birth control and abortion). (They probably don’t want to alienate the gynecologists.) The following comment sums it up:

Someone Who Cares:

“After 40 years of enduring this “disabled” existence, it breaks my heart that no matter how many of us try to warn other women, in various ways, the number of these destructive surgeries continues to increase, not decrease.”

A complete list of my articles can be found here. The HERS Foundation is a good resource for understanding the life long functions of the female organs. It also has a lot of information about gynecologic conditions and treatment options. These two sites, Gyn Reform (especially the studies/citations link) and Ovaries for Life, are excellent resources about the gross overuse and harm of ovary removal or loss of ovarian function after hysterectomy.

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.

This article was first published on October 13, 2016.

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The Long Term Repercussions of an Unneeded Total Hysterectomy

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I have always preferred natural processes. I had four natural births using Lamaze technique. I breastfed. I was a registered nurse. I knew my ob-gyn doctors for years. I never expected my life to take a sharp and unnecessary turn for the worse, but it did, after I had, what was an essentially unneeded hysterectomy with oophorectomy.

A Total Hysterectomy for a Benign Ovarian Cyst

In 1990, I was 39 years old. I was physically active, I worked out daily. My blood pressure always in the 110/70 range. I scheduled my annual exam for mid March. My cycles were regular. I never had a suspicious pap smear. A couple years previously, however, I noticed some pain on ovulation. I asked the doctor if I might have endometriosis. She said she couldn’t find any evidence on exam.

My appointment was a shock. She found a mass near my right ovary. I was scheduled for an ultrasound. The ultrasound showed a 4cm mass.

I returned to the doctor with my husband. She said the mass was likely benign, but it should be removed. She asked if we planned any more children, we said no. She then recommended that I should have a total hysterectomy and my ovaries would also be removed (TAH-BSO). Her reason was that I might have future masses. She said I was in great shape, that I shouldn’t have any weight problems. She would do a Pfannenstiel incision (bikini cut) and it would fade to a small light scar. I was shocked, my mother was going through chemotherapy for cancer. What if I had another mass later that would be cancerous!

We scheduled surgery in two weeks. She gave us the ACOG hysterectomy brochure. I talked to a couple of friends that had the surgery. Not much to it, just rest a lot after surgery. They seemed fine, and hoped I would too. I called my doctor with a few questions, how will I feel after surgery and how might it effect sex. She said the Premarin would keep me feeling just as my natural estrogen has done.

Now the date was closing in, and my doubts were rising. I was busy with my four children, age 9 to 17. I read the ACOG brochure, it seemed too simple. The day before surgery, I asked my husband if we could go to the bookstore to see if we are missing something. He felt we had ample information from the doctor and friends, and yes, the ACOG brochure. We were both nervous. My husband didn’t want to lose me should I not have surgery. I was nervous about my future. My gut feeling was not to do it, but my brain told me that I don’t want a worse situation, if I don’t have the surgery. It haunts me to this day, I had that last chance to learn the truth and I did not take it.

A Total Abdominal Hysterectomy and Bilateral Salpingo Oophorectomy

The surgery was scheduled for April 5, 1990 at 1pm. I was terrified. My husband was so scared, he barely spoke to me. When I woke up in the recovery room, I felt a large dressing on my abdomen. I told the nurse “I just want to go home.” The doctor came in Saturday morning. She told me she found a lot of endometriosis. She detailed how much of it she cleared out. She said I would never have to deal with it again.

I went home Monday, I felt pretty good. I had a lot of abdominal swelling, nut that night I got up to go to the bathroom. It was then when I broke down and cried. Two weeks later, I took a good look at my abdomen and saw the horrible swelling over the incision. I showed it to my husband and he reminded me that it should take about six weeks to heal. He was very quiet and distant since the surgery.

I went to the doctor and she was startled when she saw my abdomen. She said it should be better in the coming months.

Learning the Truth

I was frustrated, I went to a bookstore to search what happened. I thought it was a hysterectomy issue. I found Hysterectomy: Before and After by Winnifred Cutler. As I glanced through the pages, it was a sharp contrast to the ACOG (sales) brochure. This was the information I needed BEFORE surgery! I began to tear up, I bought the book and went home. I could not understand why the doctor and ACOG would not inform women of these after effects. Now my abdomen problem was the least of my problems.

I asked my husband to read the book. He did but maintained the doctor gave us all the information we needed. I felt betrayed by everyone I had believed and trusted. No one had been honest with me. At that point, I was prescribed Prozac.

My post-op appointment was tense. I told the doctor that I had numbness in my right thigh, no response. I had insomnia, breast pain from the high dose of Premarin. There was no improvement with my abdomen. She told me “Just don’t look in the mirror”. By that time, my husband knew just how these doctors work. He had no doubt that the surgery was not necessary.

Hysterectomy Consequences

In March 1991, I went to another state and had a mini-abdominoplasty for scar revision. When the cosmetic surgeon saw the scar he said “That incision was closed unevenly!”.  The three cosmetic surgeons in my area never hinted that my gynecologist was at fault. So, after my surgery I submitted my records from him with before and after photos. Anthem reimbursed me for the abdominoplasty.

I felt better about my appearance, but the after effects of hysterectomy and ovary loss were beginning to pile up. I could not have the internal orgasms I had before. Still had insomnia, thigh numbness, and problems with Premarin. I wasn’t myself, I had anger and rage. I was tired, physically exhausted.

I was on Zoloft for a year and gained nearly 60 pounds. I finally ‘quit’ doctors. In 2001, I became a vegetarian. I lost most of my weight, but I still am 30 pounds over my ‘intact’ weight. I eventually could not wear contact lenses due to eye dryness. I still have episodes of rage and anger, panic attacks and on going depression. I have low libido, and few slight orgasms, along with bad back pain, knee pain, sciatica, and hip and joint pain.

I was 5’4 and now measure 5’2. I can only get one finger (normal is 2 to 3 fingers) between my ribs and pelvic bones due to post hysterectomy skeletal changes. In February 2017, I was diagnosed with bladder cancer. Fortunately, it was low grade and manageable. It bothers me to ‘need a doctor’.  There are studies linking hysterectomy and ovary removal to both bladder cancer and renal cell carcinoma.

Where I Am Now

I am now 67. I still grieve my organ loss and the negative impact on my life. I am trapped in a body that is not mine. I recently looked at a picture of me at one year old. I wondered if that little girl would have known her life and happiness would end in 38 years.

  • I could have gone to a bookstore to research the surgery the same day I scheduled it.
  • I would have had a second, third or fourth opinion.
  • I should have listened to my gut instinct.

Research, research and research. You can’t undo the damage! Don’t let the opinions of others cost you your well-being. You are the one that has to live with the consequences! They do not!

Share Your Hysterectomy Story

If you have a hysterectomy story, publish it here on Hormones Matter. Every story counts. Send us a note for more details.

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 by 412designs from Pixabay.

This story was published originally on May 16, 2018. 

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Bleeding Disorders Overlooked in Women with Heavy Periods

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Four years ago, when the heavy period bleeding which I’d had since adolescence suddenly became much worse, I never would have predicted that the cause of the bleeding would not be correctly diagnosed and treated until after I’d had an unnecessary surgery, a preventable major complication of another surgery, months of severe anemia and more. And yet many women may be at risk for similar problems without realizing it.

Heavy period bleeding (medically called menorrhagia) is a very common problem in women of reproductive age, affecting up to 30 percent of women. This type of bleeding can be very debilitating and difficult to deal with, as well as posing a diagnostic challenge for doctors to identify the underlying cause.

There are many possible causes of menorrhagia, including hormonal imbalances and dysfunction of the ovaries, fibroids, uterine polyps, adenomyosis, intrauterine devices (IUDs), and in rare cases, cancers of the reproductive system. One cause that is not often considered is a bleeding disorder. Up to 20 percent of women with menorrhagia may have von Willebrand’s disease, which is the most common of the so-called “mild” bleeding disorders (which include any bleeding disorder not classified as a severe hemophilia). The number of women with menorrhagia who have an undiagnosed bleeding disorder is even higher when platelet function disorders, another type of “mild” bleeding disorder, are included.

Studies have shown that gynecologists are not likely to consider a bleeding disorder as a possible cause when investigating menorrhagia, and are not likely to refer women with heavy period bleeding to a hematologist for further investigation, even when gynecological causes are ruled out. One study found that only four percent of physicians surveyed would consider von Willebrand’s disease as a possible diagnosis in women with menorrhagia, and only 3 percent of physicians would refer patients to a specialist.

Studies have also shown that women with undiagnosed bleeding disorders are more likely to be subjected to unnecessary surgical procedures, including hysterectomy, as a “fix” for the bleeding that doesn’t address the underlying problem. Menorrhagia is the major reason for approximately 300,000 hysterectomies per year in the U.S. Given the prevalence of undiagnosed bleeding disorders in this population, 60,000 or more hysterectomies per year could be performed in women whose menorrhagia could be addressed with treatment for their bleeding disorder instead of a major surgery. Women with von Willebrand’s disease are more likely to undergo a hysterectomy (26 percent of women with von Willebrand’s disease, compared to 9 percent of women in the control group) and to have the hysterectomy at a younger age.

In addition, undiagnosed bleeding disorders have a serious effect on women’s quality of life, and put women at risk for medical complications. Although women who have not experienced it, or men, who of course cannot experience it, may dismiss heavy period bleeding as simply a nuisance, it is far more than that. It can cause serious problems such as anemia, complications from childbirth and surgical procedures, lost work or school time, lifestyle issues, psychological disruptions, and have major effects on quality of life. The health-related quality of life for women with menorrhagia and a bleeding disorder was studied and found to be similar to that of HIV-positive men with severe hemophilia, underscoring the difficult symptoms and lifestyle issues that can result from these problems.

My own medical history reads like a clinical case study designed to educate doctors about the possible pitfalls of undiagnosed bleeding disorders, and judging by the numbers, there are many more women out there going through the same thing. After my son was born, the menorrhagia I’d had since I was a teenager worsened significantly. I had gynecological causes ruled out—no polyps, fibroids, or cancer. I already had been diagnosed with endometriosis, but that was not thought to be the cause of the bleeding. My gynecologist deemed the cause to be “hormonal” and spent two years trying to fix it with birth control pills, which didn’t work. At some point during those two years I asked for a referral to a hematologist, which I was told I didn’t need after a few preliminary blood clotting tests came back normal. I had an endometrial ablation, which also didn’t work, and caused my pelvic pain to worsen so severely that my first period after the ablation landed me in the ER (increased pelvic pain is a known risk with endometrial ablation).

I had enough of a history the first time I asked to warrant a referral. My history at that time included bleeding complications with my first laparoscopy for endometriosis, history of heavy periods with gynecological causes ruled out, easy bruising and bleeding gums. However, it took four more years of suffering with the symptoms of anemia, low ferritin, and heavy periods, one unnecessary surgical procedure (the ablation), and a preventable surgical complication that required a subsequent surgery (I had a major internal hemorrhage after excision surgery for endometriosis and removal of my left ovary and tube) and three more requests for hematology referrals, before I was finally referred to a hematologist and ultimately diagnosed with a bleeding disorder. And some studies show that the diagnostic delay from onset of bleeding symptoms can be up to 16 years! It is time for this to change. Gynecologists need to consider the possibility of bleeding disorders, and work with hematologists when appropriate, when trying to diagnose the underlying causes of menorrhagia.

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Healing From Lupron and Endometriosis With Thiamine

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I was diagnosed with stage 4 endometriosis in 1996. In 2017, I was ready for a hysterectomy. I had two children and was finished with childbirth. I was having a lot of pain on my left side where my ovary was located. My Veterans Administration GYN refused to do a hysterectomy without first giving me Lupron shots assuming that my pain was due to the endometriosis. I was trying to hold down a very demanding government job and missing a lot of work from the pain. I had two laparoscopic surgeries in 1996 and 2001, respectively. Both were to excise the endometriosis. At the time, I was required to take Lupron in order to have a hysterectomy, I was 46 years old. I was denied a hysterectomy after my son was born in 2000 because I was considered too young at 30 years old to have a hysterectomy.

Endometriosis in the Colon and Lupron

After the injections of Lupron, a colonoscopy confirmed a diverticula pocket in that spot that was painful and others on my large intestine. The laparoscopy and excision in 1996 confirmed that my endometriosis extended to my large intestine. The colonoscopy found that I have so many pockets of diverticulosis, a resection surgery was not possible. Basically, if I were to become septic due to an endometriosis/diverticulosis flare, they would need to remove all of my large intestine. My options were very limited. My GYN wouldn’t perform a hysterectomy and laparoscopy under the assumption that the pain I was having was due to endometriosis. He convinced me to start the shots to see if they would help the pain because he assumed the pain was due to endo. I didn’t research the Lupron injections much prior to receiving them. I fully trusted my GYN. He mentioned hot flashes and suppression of symptoms with estradiol.

Immediately I noticed a difference. I don’t take prescription drugs of any kind unless I am really sick. I had nothing for any preexisting conditions. I could not tolerate the injections and function at work. I had severe hot flashes every few seconds 24/7 for three months even with add back estradiol. Worse, the estradiol made my migraines flare and so I was a hot mess. After stopping estradiol, my migraines continued to flare and still do without supplementation. I was also having diverticulosis flares every month sometimes twice a month. I had terrible gas and severe IBS symptoms. My work leave, FMLA and advanced sick leave were dwindling from all the visits to the various doctors. Within three months of my last Lupron injection, I was forced to retire or be fired for not being able to work. I never fully recovered from the Lupron.

Finally, a Hysterectomy

My GYN finally agreed to the hysterectomy in 2018 where they found my left ovary and left fallopian tube in one mass of adhesion scarring with my large intestine. The GYN removed the left polycystic ovary, left and right fallopian tubes along with my uterus, which had fibroids, and cervix leaving me with just my right ovary. Prior to the hysterectomy, I began noticing some numbness and cramping or burning in my feet at work that was much worse at night. I had the same kind of cramping and burning in my lower back too. I would later learn that these are symptoms of thiamine deficiency. Trying to keep it together at work with all of this was a nightmare.

Around this time, I also began having severe nausea and pain in my stomach. The GI doctors did an upper GI scope to confirm duodenal ulcers. The digestive issues, especially the diverticulosis should disqualify anyone from having Lupron as Lupron causes major digestive upset according to the FDA fact sheet. My digestive tract was inflamed from mouth to anus post Lupron. I had an inflamed esophagus and ulcers, diverticulosis flares, IBS with constipation and diarrhea and hemorrhoids that I couldn’t heal with meds. The low FODMAP diet helped though.

No More Pharmaceuticals

In 2019, I finally stopped taking all pharmaceuticals. No pharmaceutical made me feel better. Every medication I took for GI issues and neuropathy made me worse. I only took one for one or two weeks at a time to log all my side effects from each so I could have them added to my growing list of allergic reactions. I did have some sensitivity issues with prescription drugs prior to Lupron, just not as bad. I have the MC1R redhead gene. Redheads are more sensitive to pharmaceuticals and have more adverse reactions. I struggle with topical solutions as well. I couldn’t use estradiol patches because I’m allergic to the adhesive. Thankfully, my primary care physician also has endometriosis and suggested herbal supplements and remedies. All of this ,surprisingly, is from the veteran’s hospital. I was ordered by her to stop working. This was a final attempt to heal my ulcers, as they would eventually kill me if I could not find relief.

How I Healed Myself With Thiamine and Diet

I decided to try high dose thiamine after researching it via Drs. Lonsdale and Marrs and Elliot Overton. I started with 100mg daily for 6 months. Then 500mg for 3 months and currently 1000mg (500mg 2x daily). The thiamine works as well as the acupuncture with EMS. I also take Alpha Lipoic Acid and Dandelion root daily. The increases in thiamine are proving to be a significant factor in recovery. If I miss one day of supplements I’m sick for several days so I’m convinced that it is working.

To help myself heal, I no longer work a 9 to 5 job. I follow a low FODMAP diet with modification for diverticulosis and supplement with elderberry or dandelion for inflammation and immunity, turmeric, prebiotic + probiotics, magnesium for bone loss, palpations, anxiety, alpha lipoic acid for neuropathy, high dose thiamine for neuropathy, fatigue anxiety and brain fog, b vitamins and D3+K2 for b1 uptake regulation and delta 8 CBD for fibromyalgia pain and fatigue. I have regular chiropractor adjustments of my neck and lower back. Acupuncture and light therapy on my feet helped with the burning and cramping.

Where I Am Now

Currently, I have no endometriosis pain, only some lingering PMDD. I have no ovarian cysts and the migraines are not as frequent. Now only a couple a month versus weekly. I still have some burning and cramping in my legs and feet, but it is tolerable. Before thiamine, I was bedridden. The back and neck pain I had previously has improved with thiamine along with physical therapy/yoga and regular chiropractic care. I no longer experience diverticulosis flares with the new diet and supplements for inflammation like dandelion root, turmeric, and elderberry. I switch out the dandelion and elderberry because they work about the same. Depends on what is on sale.

I am able to stand for longer periods of time. My anxiety is significantly reduced, my palpations are gone, I can remember things, and my ADHD flare ups are minimal. In 2022, I only had two mild diverticulosis flares. Prior to the diet changes and supplements, I was having them once a month. I went from being bedridden completely to cooking (I still need to sit some), cleaning with short breaks, gardening with a sit on garden cart, and walking about a half mile every few days. I still have numbness in both feet. I am hopeful that lowering my A1C will resolve this. It may be permanent. Only time will tell. I’m going to the VA this week for a checkup and requesting more PT to see if it will help. They did an EMP on both legs with normal results. That was pretty painful but I felt nothing in my 3 little toes on both feet. Overall, I am doing much better with the higher dose thiamine and have much more energy.

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

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Hormonal Birth Control Solves Everything Right? Wrong.

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Hi, my name is Jess, I have two children, whom I gave birth to at age 17 and 19. This saved me in ways I could write a book about. I also had one miscarriage. Members of my family have a history of gynecological problems and some of them struggle with fertility. I also was at high risk for hormonal problems due to my strong family history. What I did not know, was just how limited doctors’ understanding of menstrual and hormone problems was. For every problem I presented with, hormonal birth control and painkillers were the answer. When those didn’t work, surgery. I had 10 operations in the span of a few years, until finally and out of desperation, I had a total hysterectomy in my twenties. I cannot help but wonder if the Depo Provera prescribed to me after the birth of my second child was somehow the root of my illnesses and all of the other prescriptions for hormonal birth control added and worsened my pain. It seems like I was in vicious cycle. Here is my story.

Hormonal Birth Control, Pain, and the Long List of ER Visits and Unsuccessful Surgeries

Depo Provera: The Beginning of My Pain

At my 6-week post birth check-up for my 2nd child, the doctor I  recommended that I go on the Depo Provera shot to prevent any further pregnancies. So, I did. In September 2013, after two more shots of the Depo Provera, I started having “a period” that lasted 7 months! After multiple doctors’ visits, lots of medications and tests, I was referred to my first specialist, a gynecologist.

Operation 1. In April 2014, at 20 years old, I had my first gynecological surgery: a hysteroscopy, along with a D&C and a Mirena inserted to stop the “period” I was having. The Mirena was also for birth control.

The Mirena Chronicles: More Pain and Ruptured Cyst

For the next 8 months, I had extremely irregular periods, unusual pain, and contemplated having the Mirena removed. The specialist recommended that I keep it in and see if it settles. Intercourse was painful, and after, I was guaranteed to wake up bleeding the next day. My pain became unbearable and after I had an ultrasound, they found I had a cyst on my left ovary. I was given prescription pain relief and was told they would do another ultrasound in 4-6 weeks. That didn’t happen because the pain was slowly getting worse. After two more visits to the emergency department with more pain medication, I was still told that we needed to take a wait and see approach. My health was declining. I lost 7 kilograms in 3 weeks from feeling so unwell.

Then one day I collapsed with severe sudden pain. I went to the hospital straight away when another ultrasound revealed the cyst on my ovary had ruptured. I was told I needed to undergo surgery.

Operation 2. I had a laparoscopy, so they could clean out the mess from the ruptured cyst.

Irregular Bleeding, Another Cyst, Endometriosis, and Still, Mirena is the Solution

A couple months went by and my pain once again returned. I still was having irregular bleeding and was still guaranteed to be bleeding after having intercourse. It was like déjà vu. Unfortunately, I was back on pain killers and an ultrasound revealed another ovarian cyst. The pain was often unbearable. Off to the emergency department again. Multiple pain medications didn’t seem to be working and I was told I need to deal with it as there was nothing they could really do. I thought “Are you serious?!?! Why the hell won’t you help me?!?!” I was a mess.

At every hospital visit, I got the “Oh you are on a lot of bad medication; you shouldn’t take so much.” So I would ask “can you please do something? I don’t want to keep shoveling pills down my throat!!”. However, every time the answer seemed to be “here are some more medications for your pain because we can see you’re in a lot of pain and your vital signs are showing you are in a lot of pain”. This wasn’t providing any sort of solution to fix my pain and being told to suck it up and get over it, by one doctor, didn’t help either. I couldn’t help but feel depressed and severely anxious every time I needed to go to the emergency department. I was in so much pain I didn’t know what to do. When did I become a person who needed multiply prescription medicines to control the pain enough that I could function semi-normally? At one point, I weighed only 48 kilograms. I had lost 10 kilograms. I could barely eat. Every day I tried to stay positive, but it was so hard being consumed in pain 24 hours, 7 days a week.

Operation 3. I had another laparoscopy on the 1st of May 2015, where I had the cyst removed from my left ovary. This is when they told me I had some endometriosis. They inserted another Mirena as a treatment option. It seems as though, birth control and pain killers are the only answers that they have.

Rinse and Repeat and Repeat and Repeat: More Hormonal Birth Control and More Surgeries

By September 2015 the same thing happened again, another large cyst, given away by the extreme pain and accompanied by the irregular bleeding! Another round of multiple hospital visits and admissions, I was again put on really strong pain killers and we discussed treatment options. I was prepped for a procedure called an aspiration and drainage, but my bowel and bladder were collapsed over, and they couldn’t perform it.

Operation 4. On the 24th September 2015, I had another laparoscopy. Another large cyst and more endometriosis were removed. After surgery, I was placed on a different birth control pill, along with the Mirena IUD, as a treatment option for the reoccurring cysts and endometriosis.

By January 2016 my pain had once again come back, and I was admitted to hospital. The result showed that I had another cyst on my left ovary. (Seriously, WTF!!! So many more tears). They told me they didn’t want to do any more operations on me, and I sure as hell didn’t want anymore. I was now 22 and felt like I was failing as a mum and person because I was always so consumed in pain. There were days where I couldn’t even leave the house. I had the Mirena removed again and was once again on pain killers. I was put on a hormonal birth control pill; a much higher dose, and we all prayed this would give me relief.

I had started to build up a resistance to any sort of pain relief. It felt like I was constantly going to the emergency department and was always sent home with more pain killers. Most of the time, the same ones I already took daily. I was going because my pain was so out of control, everyone around me was telling me to go get help, including my GP because I could barely function. Why were they sending me home on the same pain killers that didn’t control my pain? This affected my emotional state further. Some nurses, doctors and people were really kind to me, and others were extremely nasty and made me feel guilty for being in so much pain. I really didn’t want to be sent home again with no solution. “We must figure something out, please stop doing this to me!!! It has happened too many times!”

By March 2016, I was still in chronic pain and on even more daily medications. I had another ultrasound which reveal that I still had another large cyst in my left ovary. It also showed that I had nephrocalcinoisis (calcium build-up) and a small cyst in one of my kidneys, I was told this could be from long term use of pain medication but not exclusively. My jaw dropped. I had to travel to see a kidney specialist who told me it was nothing much to worry about and if it gets worse then I will be referred back. The advice from him was to ease up on the pain medication if possible and find other ways to deal with my chronic pain.

Operation 5. By May 2016, we were once again going to re-insert a Mirena to try and help my issue, however, it didn’t want to go in, so I had my 5th Operation to have it inserted on the 2nd June 2016. (Even if it was only slightly effective for a couple months that gave us time to try figure out what we were going to do). I was using a lot pain medication still, and my bleeding was happening more than it wasn’t. Once again, I was anemic and needed to take supplements to help my iron. Luckily, I never needed a blood transfusion. I had honestly lost count of the amount of times I went to my doctor’s clinic and the emergency department. I couldn’t even tell you the names of all the different types of pain relief and contraception options I had tried. I was labelled as someone who just ‘wanted painkillers’ because the amount I was on would not fix my pain. I was anxious and depressed due to my declining health. I wanted to just stop taking everything, but the pain was so much I couldn’t even move. Still around 50 kilograms and I had now been on pain relief constantly for around 6 months.

Operation 6. At this stage I was feeling worse if anything, so I had my 6th operation to remove the Mirena once again, after failed attempts to remove it in the gynecologist unit.

Going in Circles: More Birth Control, More Pain and Problems and More Surgery

By September 2016, I had visited the hospital and doctors so many times I was known on a first name basis. By this time, I had begun to research treatment options extensively and spoke to multiple people, including my gynecologists and doctor which led to me to discussing a hysterectomy. By now, I was willing to try any option to rid me of this pain! After extensive discussion it was decided that I would just have my left ovary removed because that was the most troublesome. In September 2016, we scheduled a laparoscopic Left Salpingo- Oophorectomy (Left Ovary and Fallopian Tube Removal).

Operation 7. On the 12th of October (day after my 23rd birthday), I had my 7th Operation. During this operation they found another problem. This is when I was diagnosed with pelvic congestion syndrome/ Ovarian Vein reflux and was referred to another specialist- an Interventional Radiologist.

Pelvic Congestion Syndrome/Ovarian pain reflux

“Pelvic venous congestion syndrome is also known as ovarian vein reflux. It is a cause of chronic pelvic pain in approximately 13-40% of women. Chronic pelvic pain is pain in the lower abdomen which has been present for more than 6 months. Pelvic congestion syndrome is therefore a painful condition often caused by dilatation of the ovarian and/or pelvic veins (rather like varicose veins but in the pelvis) . Varicose veins are commonly seen in the legs when the veins become less elastic and the valves that stop the blood from flowing backwards stop working. This causes the blood to pool, due to gravity, causing enlarged, bulging and knotty veins. This is also what happens to the pelvic veins in pelvic venous congestion syndrome (PVCS). This pressure results in the pain of PVCS and may also cause visible varicose veins around the vulva, vagina, inner thigh, and sometimes, the buttock and down the leg (s).”

Things went well for a short while, but the pain just got worse again. Again, I was on a lot of pain killers. I was always forced to take Panadol first if I was admitted in the ED, before they prescribed anything else.

I was referred to another specialist – an Interventional radiologist.

I drove 5 hours to see an interventional radiologist as there were none locally who could take me in the public system. I was advised by him that I should have platinum coils inserted in my ovarian veins and a foam solution to kill off a bunch of other veins. They thought the PVCS could be the cause to my pain and this treatment could prevent me from getting anymore varicose veins. He told me I am lucky that my legs and vagina hadn’t been affected yet, and that I will need to keep an eye out for this in the future.

Operation 8. I had operation number 8 in March 2017. I wasn’t under general anesthetic this time. Just a “twilight sedation” where they used my main artery in my neck to insert the coils and other treatments. Thankfully, I was out of it for most of it!! I had multiple coils inserted and who knows how many other smaller veins were treated. They wanted me to stay admitted overnight but I couldn’t do it. I was actually a bit traumatized from the whole experience. I felt extremely alone and scared down in a “big city” hospital by myself.  At one stage, they were so busy that the head of my bed was in a utility closet to get me out of the way. Unfortunately, this operation did not help my pain as much as I prayed it would. pelvic congestion hormonal birth control

Chemical Menopause, Hysterectomy, and More Medications

I was at my wits end. I was breaking down emotionally, so I reconsidered a hysterectomy even though I was only 23 years old. The gynecologist I was seeing suggested that I go into chemical menopause before I had a hysterectomy so that I could see if it would benefit my pain. So, I did, I went on an injection called Zoladex. It causes chemical menopause and it’s actually used as a treatment for breast and prostate cancer. I was told not to research it but I couldn’t help myself.

I went to a regular GP appointment, but this time came out with more bad news. The results were that I have high cholesterol, which showed in a recent blood test. The doctor was a little confused because I didn’t have any of the major risk factors for high cholesterol. Turns out, that is what chemical (surgical or natural) menopause can do to one’s body. Now I had to add another specialist to the list of doctors and it meant another trip away. He told me if you have a hysterectomy and you take out your only remaining ovary, your cholesterol treatment will greatly differ”. He told me, “what would/could happen and that I must go back after my operation, but for now it was still untreated.  So, with that news I felt like I needed to keep my only remaining ovary.

I was now seeing multiple professionals and had been seeing a gynecologist who made me regain hope. We talked about this operation multiple times over a long period of time and I was still suffering “chemical menopause” symptoms at that time, with my pain coming back worse the chemical menopause pellet started to run out. I was excited when the day finally came where I signed the papers to have a total hysterectomy. The advice I received was that I should make serious lifestyle changes to help my body. I was advised to do weight bearing exercises, quit smoking, go on Hormone Replacement Therapy and pray it doesn’t bring my pain back.

One thing that is still stuck in my mind is the line “this could take up to 10 years of your life”. I was in so much pain and I was sick of taking so much medicine that was making me sick in other ways. I really wanted to stop having operation after operation.

Operation 9. On the 2nd of August 2017, I had a total hysterectomy. I had everything except my right ovary removed. I must admit I felt strange, my belly felt empty, but I immediately felt like I had less pain.

It was the best thing I did for my pain. I felt like I had recovered from this operation fast and everyone (including myself) was amazed at how well I was doing physically afterwards. Ten days post op, I was able to stop all the pain medication I had been on! This was massive for me!!! No more pain killers! Or so I thought. My right ovary didn’t “wake up” after my hysterectomy and I began experiencing stronger menopause symptoms. I knew the obvious symptoms after having chemical menopause. This led me to the journey of figuring out and starting my first lot of Hormone Replacement Therapy (HRT). I also came to the realization that it takes up to one year to fully heal from a total hysterectomy.

I must admit this affected me mentally and emotionally more than I thought it would. Some days are so bad, they scare me, other days I’m on top of the world. I think this definitely contributed to my mental health. One of the hardest things about having mental illness is getting up and putting on ‘you’re okay face’ every day. This isn’t makeup. This is the face where you put on a smile and say, “I’m fine”, or “I’m good thanks”. Its where you hope no one sees past your bulls**t smile because the moment they do you know you’ll break down and cry, but at the same time you just want someone to help you and help you not feel the way you feel anymore. Who knew hormones can mess with your head so much? Who knew hormones play apart in so many different things in your body?

Operation 10. On the 28th of June 2018, surgery number 10 happened. I had my right ovary removed. I had another cyst that was complex in nature and which was making my pain worst, contributing to me being back on pain killers again full-time. They also saw that the coil that was cut during my hysterectomy was exposed at the tip, so they trimmed this up as well. hysterectomy at 23

Surgical Menopause: Medicine’s Only Other Solution

After this operation, I “officially” entered surgical menopause. I have learnt what surgical menopause really is, and how much it differs from natural menopause. I also learned how under-educated people are regarding this condition, including some doctors and specialist. I didn’t know this was the journey I was going to be on for the rest of my life, however, I have learned that I am my only and best advocate. I still suffer from chronic pain every day, and now I have an added stress of menopause. All I can do is stay strong and true to what I know and keep fighting for myself and women like me. I will continue to try and get better health care for myself and I will not give up until I am satisfied, I have achieved this. This is not how my story ends.

Thank you for taking the time to read my story. Kind Regards, Jessica Poland (Firth). Queensland, Australia.

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If you have had similar experiences with hormonal birth control and/or medications and surgery, write and share your story on Hormones Matter.

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

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This article was published originally on November 29, 2021. 

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Conquering the Uterus – Trends in Hysterectomy

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Every 10 minutes, 12 American women lose their reproductive organs, every day of every year. Hysterectomy is second only to cesarean in common surgeries. Approximately 660 women die each year in the United States from complications related to hysterectomy. Thousands more suffer long term side effects associated with oophorectomy – removal of the ovaries. The most common reasons for hysterectomy include:  uterine fibroids or rather the menorrhagia, heavy bleeding associated with the fibroids and endometriosis, an incredibly painful condition where uterine tissue grows outside the uterus. Both conditions are hormonally modulated, plague millions of women and take years to develop.

One would think that with such extended period of disease progression, 5-10 years, researchers and clinicians would have ample opportunity to develop innovative treatment protocols, long before the surgical removal of the uterus was necessitated. One would be wrong. Despite the cost of long term care leading to, and as a result of the hysterectomy; despite the outcry from the hundreds of patient associations, some with high profile members; despite the billions of dollars spent annually on performing what should be last resort surgeries, there has been no innovation in diagnostic tools for these conditions and no new therapeutics for women’s reproductive health developed in over 50 years, unless you call the re-purposing of old meds innovation.

Instead, innovation in women’s healthcare, much like American healthcare in general only magnified exponentially, comes at the end of the disease progression – when no other choice but surgery exists. Let’s build a cool robotic tool to remove even more uteri. Sure it will cost significantly more and have a higher complication rate, but the technology is so impressive that does not matter. Forget about developing early diagnostics and less invasive, more effective therapeutics, just take it all out and look cool doing so. Who would not want to perform surgery remotely with a million dollar piece of medical technology? Women don’t need their uteri anyway – a win win for all involved.

Robotic Assisted Hysterectomy

The robotic, joystick controlled, remote surgical tool is an impressive piece of engineering. With a price tag of over a million dollars per, it provides the cutting edge stature that all top-notch hospitals strive for. An added bonus, it makes gynecology, the long derided medical profession, the cool kid on the block. But does it work?

Well, not really. Sure it removes a woman’s uterus more quickly and with less scarring; a single ½ inch belly button scare versus two or three ½ inch abdominal scars, but it costs more and doesn’t reduce complications – may even increase them a bit. Compared to the minimally invasive laparoscopic hysterectomy, the robotic assisted hysterectomy costs $2000 more per procedure. As of 2010, about a quarter of all hysterectomies were performed robotically. That’s about $300 million dollars per year more to perform a robotic hysterectomy with no added gain health.  When combined with the costs multiple hospital stays, ineffective therapeutics and possible other surgeries that often led up to the hysterectomy, it is clear why women’s healthcare is so expensive.

Perhaps we could use our health dollars a little more wisely. Maybe we should spend some of those many billions of dollars or even a fraction of the $300 million spent annually on robot surgery, on prevention, early diagnostics or more effective therapeutics.

Update

Since this article was originally published in 2013, additional reports of complication rates for robotic surgery have been published. In a study of 298 patients undergoing robotic hysterectomy published in 2015, the complication rate was 18%. In 2017, a study of complication rates of a single surgeon using the robot, was 5.5% suggesting that some surgeons are better with this tool than others. In comparison, a study looking at 4505 hysterectomies performed by the same team between 1990 and 2006 (3190 were performed by laparoscopy, 906 by the vaginal route and 409 by laparotomy) saw the complication rates below 1%, significantly lower than that of the robotic surgeries, but again demonstrating that the skill of the surgical team is paramount.

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. 

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This article was published originally on March 18, 2013.

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Tank Estradiol and Lose Metabolic Flexibility: Pitfalls of Lupron and Oophorectomy

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Over the last several weeks, I have been looking at the role of estradiol in mitochondrial health. In the first post Hormones, Hysterectomy and the Aging Brain, we learned that estradiol depletion wreaks havoc on brain mitochondria turning them into misshapen donuts and blobs. Digging a little deeper, the next post (Lupron, Estradiol and the Mitochondria) pondered the connection between estradiol-depleting drugs such as Lupron, other Lupron-like drugs, and the devastating side effects that often follow suit. Could Lupron-mediated mitochondrial damage be at the root of these side effects? Quite possibly?  A question that remains is how. In this post, I will be digging even deeper into the role of estradiol in mitochondrial functioning, especially its role in something called metabolic flexibility.

A note of caution, while I focus on estradiol, the mitochondria, and what happens to health when we remove estradiol pharmaceutically via Lupron or surgically via oophorectomy, it is important to remember that estradiol is not the only hormone synthesized in the ovaries nor are the ovaries the only hormone-producing tissues. Moreover, the chemical castration induced by Lupron and other medications or via ovary removal disrupts and diminishes the synthesis of a myriad of hormones. Estradiol is simply where most of the research is focused, and so, it is where I too must focus, at least for the time being.

Steroid Hormones and Metabolic Flexibility: A Critical Factor in Post Lupron and Post Oophorectomy Ill Health

Steroid hormones regulate metabolic flexibility at the level of the mitochondria. Estradiol, the most frequently studied among the steroid hormones, plays a pivotal role in determining how food fuel is converted into cellular fuel or ATP.  When we eliminate estradiol with medications such as Lupron and other GnRH agonists or antagonists, or when we remove a woman’s ovaries, depleting her primary source for estrogen synthesis, metabolic flexibility diminishes significantly.  With the lack of metabolic flexibility comes several health issues, some noticeable, like weight gain, and others less noticeable, at least initially, like cardiac and neurodegenerative diseases. A common component of each of these conditions is mitochondrial dysfunction. Mitochondrial dysfunction can be initiated and accumulated via a number of mechanisms and over time, so estradiol is not the only variable, but it is a key factor that is often ignored.

Mitochondria

Mitochondria are the cellular powerhouses that consume oxygen and transform the foods we eat into a currency that cells can use (ATP) to perform all of the intricate tasks needed for survival and health. Mitochondria are also the site of steroidogenesis (steroid synthesis), immune signaling, and all sorts of other functions that determine cellular life and death. When you think about it, how well the mitochondria perform these tasks affects health at every level of organismal physiology. Without the appropriate amount of mitochondrial energy/ ATP, cell function becomes deranged, and ultimately, grinds to a halt. When that happens, disease is imminent. Indeed, genetic perturbations of mitochondrial function are some of the most devastating diseases known to medicine.

One has to wonder, what happens when we perturb mitochondrial function from the outside in – via toxicant exposure or by eliminating critical hormones or other co-factors such as nutrients that are necessary to mitochondrial operations? Worse yet, what if an individual with unrecognized genetic defects in mitochondrial functioning faces additional mitotoxicant exposures; what then? Complex, multi-system disease – that’s what. I would argue that mitochondrial dysfunction represents the final common pathway, a convergence point, connecting an array of seemingly disparate disease processes. Mitochondrial metabolism, and specifically, metabolic flexibility, may be at the heart of the derangement, with estradiol, and likely other hormones, in the driver’s seat.

Metabolic Flexibility: Adapt and Survive

When we think of stress and flexibility in general terms, it is easy to recognize that the more flexible one is in his/her behaviors or coping mechanisms, the easier it is for one to respond to, and survive stressors. Flexibility means that options exist for when everything hits the fan. Imagine if there were no options or if you had to respond to each and every stressful event in your life using exactly the same behaviors or response patterns. You would not get very far. The same holds true for cell behavior, and more specifically, mitochondrial behavior. The mitochondria need options to respond to the differing needs of the cells that they supply with energy. If those options become limited in any way, the mitochondria become less effective. They produce less energy, scavenge fewer oxidants (toxicants), and when stressors present, cannot easily adapt. In fact, the more inflexible the mitochondria are forced to become, the less likely they, and the cells, tissues, organs, and organism within which they reside, will survive. Estradiol is integral to mitochondrial flexibility. Remove the estradiol and the mitochondria become less metabolically flexible and less able to respond to the demands of a changing environment.

Estradiol Equals Increased Mitochondrial Efficiency and Decreased ROS

Estradiol maintains metabolic flexibility via two important mechanisms: increased mitochondrial efficiency and ROS management. With the former, estradiol regulates metabolic flexibility by altering the expression of genes that control the enzymes within the fuel conversion pathways. It is a complex algorithm of responses, with some proteins upregulated and others downregulated. The net result, however, favors increased efficiency in ATP production by maximizing metabolic flexibility or adaptability to the environment.

With the latter, estradiol, along with progesterone, manage the clean-up tasks inherent to any energy production process. In effect, estradiol manages ROS both on the front end and the back end of mitochondrial ATP production. On the front end, increased metabolic efficiency and flexibility equals fewer ROS byproducts. On the backend, estradiol cleans up the byproducts of processing -ROS – and tempers the damage these byproducts can cause.

Estradiol, Pyruvate, and ATP

Of particular interest to our work here at Hormones Matter, estradiol upregulates a set of enzymes called the pyruvate dehydrogenase complex, PDC. The PDC, responsible for converting glucose into pyruvate, is the first step in the long process that nets multiple units of mitochondrial ATP. The PDC is key to carbohydrate metabolism and more recently has been linked to fatty acid metabolism, making this enzyme complex central to mitochondrial energy production. Diminished PDC derails mitochondrial functioning, producing serious diseases. Children born with genetic pyruvate dehydrogenase deficiency suffer serious neurological consequences and rarely live to adulthood.

Importantly, the PDC (like all of the enzymes within these cascades) is highly dependent upon nutrient co-factors to function properly. Thiamine and magnesium, are critical to the PDC complex. Since PDC function demands thiamine, children and adults with thiamine deficiency also suffer significant ill-health, ranging from fatigue and muscle pain, to disturbed cognitive function, disrupted autonomic function affecting multiple organs, psychosis, and even death if not identified. Thiamine deficiency is most well known as a disease associated with chronic alcoholism but has recently begun re-emerging in non-alcoholic populations relative to medication and vaccine reactions.  Many medications and environmental variables deplete thiamine and magnesium, diminishing mitochondrial function significantly, by way of pyruvate.

Along with nutrient co-factors, estradiol is critical for pyruvate. Estradiol upregulates the expression of the enzymes that make up the PDC (in the brain). If estradiol is reduced or blocked, mitochondrial ATP production will take a hit. If estradiol is blocked in an already nutrient-depleted woman, the first step in mitochondrial fuel conversion would take a double hit. One can imagine the consequences.

In light of the direct role that thiamine, magnesium, and other nutrients play in the cascade of reactions required to produce ATP, can we maximize mitochondrial functioning with nutrients to compensate for the mitochondrial damage or deficiencies likely to occur post oophorectomy or as a result of GnRH agonist or antagonist drugs, like Lupron? I can find no research on the subject, but it is certainly a topic to explore given the millions of women already suffering from the mitochondrial damage induced by Lupron and/or pre-menopausal ovary removal. Even without the necessary research, correcting nutrient deficiencies and dietary issues should be undertaken for general health.

Another question in need of exploration, if we maximize mitochondrial functioning, does that then increase steroidogenesis in other endocrine glands? A section of the adrenal glands called the zona reticularus, for example, produces a complement of hormones similar to those of the ovaries. In postmenopausal women androgens, precursors for estradiol, produced by the adrenals account for a large percentage of total estradiol production. Could we take advantage of that to help stabilize circulating hormones?

Finally, beyond the nutrient requirements for mitochondrial ATP production, enzymes throughout the body, even those involved in post-mitochondrial steroid metabolism, require nutrient co-factors to function properly. Could we maximize those enzymes for more efficient steroid metabolism to net sufficient estradiol to maintain mitochondrial function?

What about Natural Declines in Estradiol?

It is not clear how menstrual cycle changes in estradiol affect mitochondrial functioning or how the postpartum decline in pregnancy hormones affects mitochondria. One would suspect there are compensatory reactions to prevent damage, but this has not been investigated. In natural menopause, however, researchers have noted that some form of compensation occurs as estradiol declines and, at least for a time, and in rodents, mitochondria maintain efficient production of ATP. In contrast, no such changes are noted with premature menopause or oophorectomy.

Also not investigated sufficiently, is the impact of chronic synthetic estrogen exposure on mitochondrial functioning. In other words, what are the effects of oral contraceptives, HRT, and the growing list of environmental endocrine disruptors, on mitochondrial ATP production? Since these compounds bind to estrogen receptors and displace the endogenous estrogens like estradiol, some evidence suggests endogenous production of estradiol is reduced. Do the mitochondria respond also by downregulating estrogen receptors or by some other mechanism?  Short-term, animal research suggests that supplementing 17B estradiol post oophorectomy reduces mitochondrial damage. In research in humans, where synthetic estrogens are used, results are less clear and longer-term studies do not exist beyond the broad brush strokes of epidemiology.

Metabolic Flexibility and Tissue Type

One of the more interesting aspects of estradiol’s role in metabolic flexibility is that it is site or tissue-specific and may point to novel therapeutic opportunities. Since different cell types, in different parts of the body, prefer different fuels for power to survive, when we eliminate estradiol from the equation, mitochondria from different tissues or organs respond differently to the lack of flexibility. Perhaps, we can utilize the information about fuel requirements to design diets that compensate for diminished metabolic flexibility.

Heart Cells. I’ve written about this research previously, not fully understanding the implications. Estradiol allows cardiomyocytes (heart cells) to switch from their preferred fuel of fatty acids to glucose during stressors such as heart attacks (and theoretically during any stressor like exercise). That ability to switch fuel types is protective and allows the cells to survive and heal. It may explain why women are more susceptible to heart damage post-menopause when endogenous estradiol declines. This may also point to a pathway for post oophorectomy and post Lupron declines in normal heart function.

Brain Health. Declining estradiol affects brain mitochondria differently. As I noted in a previous post, without estradiol, brain mitochondria become progressively less functional and misshapen. These structural changes impair mitochondrial ATP production. Unlike the heart, however, the brain prefers glucose as its primary fuel source. Estradiol appears to enhance glucose uptake from the periphery and across the blood-brain barrier. When estradiol is absent, brain glucose uptake diminishes significantly (in rodent studies), leaving the brain perpetually starved for glucose.

We know from brain cancer research, that with declining brain glucose, secondary fuels can kick in, but only when the mitochondria have sufficient flexibility to switch. For example, mitochondrial fuel flexibility is critical to battling brain tumors. Under conditions of stress and when brain glucose concentrations are low, healthy mitochondria can readily transition to ketone bodies for energy, at least in vivo. The transition from glucose to ketone bodies is believed to be an evolutionary adaptation to food deprivation allowing the survival of healthy cells during severe shifts in the nutritional environment. Estradiol appears to be key in maintaining that flexibility.

Weight Gain and Fat Accumulation. Post-menopausal, post-hysterectomy, and oophorectomy weight gain are well established research findings. Anecdotal complaints of Lupron weight gain are also common. These findings may be related to derangements in metabolic flexibility mediated by the relationship between estradiol and mitochondrial functioning. The increased lipid or fat accumulation in skeletal muscle though associated with impaired insulin-stimulated glucose metabolism may be related to the reduced capacity to adjust to a changing fuel environment. More specifically, weight gain may represent a declining ability to utilize fats effectively as a mitochondrial fuel source, possibly via a derangement in a mitochondrial channel responsible for shuttling fats and cholesterol into the mitochondria for processing. When the mitochondria become less flexible, a channel called the TSPO, shuts down, disallowing fats that would normally be shuttled into the mitochondria and processed for ATP (and steroid hormones), from entering. Instead, they are stored peripherally in adipocytes. I wrote about this in detail here: It’s All about the Diet: Obesity and Mitochondrial Dysfunction. It is possible in estradiol-depleted women that TSPO downregulation is a compensatory reaction to diminished metabolic flexibility.

It is also conceivable that the lack of brain glucose, as discussed above, leads to overeating and, more specifically, cravings for sugary foods. This would be a logical compensatory reaction to bring more fuel to the brain; one likely meant only for the short term and that when held chronically begins the cascade of other metabolic reactions known as obesity, diabetes, and heart disease. Perhaps, just as fat storage becomes a survival mechanism when mitochondria can longer process it effectively, the craving for sugar in estradiol-deprived women is also a survival mechanism.

Finally, adipocytes can synthesize estradiol. It is conceivable that in response to declining estradiol concentrations, the body stores fat to produce more estradiol.

Final Thoughts

Central to mitochondrial dysfunction, whether by genetic predisposition or environmental influence, is the inability to efficiently produce ATP (the fuel that all cells need to survive) and to effectively manage the by-products of fuel production and other toxicants. Estradiol plays a huge role in both of these processes. Eliminate estradiol and mitochondrial functioning becomes less efficient and less flexible initiating cascades of chronic and life-altering conditions. This suggests the ready application of medications like Lupron that deplete estradiol or the prophylactic removal of women’s ovaries is misguided at best, and dangerous at worst.

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Image by Triggermouse from Pixabay.

This post was published originally on Hormones Matter on February 11, 2015. 

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