ablation

Lumbar Scoliosis After Ablation and Hysterectomy

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Lumbar scoliosis hysterectomy ablation

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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Bleeding Disorders Overlooked in Women With Heavy Periods

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bleeding disorders

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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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 or Not?

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hysterectomy or not

Should I Have a Hysterectomy?

I had some spotting once that led to the OBGYN to do an ultrasound test. The test showed that the endometrial lining was thicker than normal. I am on hormone replacement therapy (HRT) and have been on it for 5 years. Prior to that, I was on birth control pills for 10 years. So from the ages of 40-50 years, I used birth control pills and then from 50-55 years, I used HRT, first a cream form of bioidentical hormones and then I switched to a patch (estradiol-combination of estrogen and progesterone). Both at the very lowest dosage.

The OBGYN said that if by ablation he could remove the extra lining then I would be safe for the next 10 years from getting endometrial cancer. But because he was not able to perform it, he said that the uterus should be removed to prevent this from happening. I do trust his opinion. He has been my gynecologist for 15 years, but I really do not want to do this surgery. I am fully aware of the consequences. On the other hand, the possibility of the lining developing cancer is also scary. Also, I am not sure if he was able to get the endometrial tissue for pathology since the cervix was too tight for ablation. If it’s not possible to get the tissues from the lining for testing, then I do have a big problem?

I do not have any other symptoms. I am overweight, but I have been like that for the past 20 years with no major changes up or down.  My fasting sugar is at 110-120 most of the time, which is considered pre-diabetes, so I do take Metformin 500 once a day at night. Other than that, my blood tests are perfect. There are no other issues.

I do not have any family history of any female organ cancers that I know off. None of the females in my family, including grandmothers, aunts, cousins, had any type of cancer. My family history is full of heart disease (heart failure on both sides of the family and heart attacks) and there is some diabetes in the distant family (great-aunts) but NO cancers of any female organs (that includes breast cancer also).

The only reason my doctor suggests the hysterectomy is because he could not do an ablation and my endometrial lining was thicker than normal for my age (55) and menopausal stage. He could not perform the ablation since I have cervical stenosis and the cervix could not be opened wide enough even with dilation.

He says that in order to keep me safe from possible endometrial cancer I must get the hysterectomy. I do not want to do that, but I have no idea how to check the endometrial lining tissue for pathological changes if the tight cervix will not allow to get samples of the tissue. There were tissues taken for pathology at the procedure, which came back negative (no cancer of pre-cancer cells). I am just not completely sure if the tissue was also taken from the endometrial lining or not. He is being evasive and not specific.

What should I do? Any suggestions would be greatly appreciated.

Thank you.

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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Endometrial Ablation – Hysterectomy Alternative or Trap?

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Endometrial ablation seems to be the latest “bag of tricks” in the treatment of women’s gynecological problems. It is an increasingly common procedure used to treat heavy menstrual bleeding. The procedure is premised on the notion that if the endometrial lining is destroyed – ablated – bleeding can no longer occur. Problem solved. But is it? Does endometrial ablation work? Does it resolve the heavy menstrual bleeding and prevent the “need” for a hysterectomy as it is marketed, or does endometrial ablation cause more problems than it solves? The research is sketchy, but here is what I found.

Short-term Complications Associated with Endometrial Ablation

For any surgical procedure there are risks associated with the procedure itself. Here are the short-term complications for endometrial ablation reported in PubMed: pelvic inflammatory disease, endometritis, first-degree skin burns, hematometra, vaginitis and/or cystitis. A search of the FDA MAUDE database included complications of thermal bowel injury (one resulting in death), uterine perforation, emergent laparotomy, intensive care unit admissions, necrotizing fasciitis that resulted in vulvectomy, ureterocutaneous ostomy, and bilateral below-the-knee amputations. Additional postoperative complications include:

  1. Pregnancy after endometrial ablation
  2. Pain-related obstructed menses (hematometra, postablation tubal sterilization syndrome)
  3. Failure to control menses (repeat ablation, hysterectomy)
  4. Risk from preexisting conditions (endometrial neoplasia, cesarean section)
  5. Infection

Long Term Complications of Endometrial Ablation

Endometrial ablation to block menstruation. In order to understand the long-term risks of endometrial ablation, one must understand the hormonal interaction between the uterus and ovaries. The endometrial (uterine) lining builds and sheds in response to the hormonal actions of the ovaries. Ablation scars the lining impeding its ability to shed. But ovaries continue to send the hormonal signals necessary for menstruation and the uterus attempts to function normally by becoming engorged with blood. The problem is, the blood has nowhere to go. It is trapped behind the scar tissue caused by the ablation. This causes all sorts of problems.

Retention of blood in the uterine cavity is called hematometra. If the blood backs up into the fallopian tubes it’s called hematosalpinx.  Hematometra and hematosalpinx can cause acute and chronic pelvic pain. Some data suggest that about 10% of the women who have had endometrial ablation suffer from hematometra. The pelvic pain in women who’ve undergone both tubal sterilization and ablation has been coined postablation-tubal sterilization syndrome.

“Any bleeding from persistent or regenerating endometrium behind the scar may be obstructed and cause problems such as central hematometra, cornual hematometra, postablation tubal sterilization syndrome, retrograde menstruation, and potential delay in the diagnosis of endometrial cancer. The incidence of these complications is probably understated because most radiologists and pathologists have not been educated about the findings to make the appropriate diagnosis of cornual hematometra and postablation tubal sterilization syndrome.”  Long term complications of endometrial ablation. 

So although ablation can have the desired effect of reduced or even absent bleeding, it can be a double-edged sword. This relief from heavy bleeding may, in the long-term, be overshadowed by chronic, debilitating pain caused by the ongoing, monthly attempts by the uterus to build and shed the lining.

Ablation leads to hysterectomy in younger women. The younger a woman is at the time of ablation, the greater the risk of long-term problems that can then lead to hysterectomy. A 2008 study in Obstetrics & Gynecology found that 40% of women who underwent endometrial ablation before the age of 40 years, required a hysterectomy within 8 years. Similarly, 31% of ablations resulted in hysterectomy for 40-44.9 year old women, ~20% for 45-49.9 year old women and 12% of women over the age of 50 years required a hysterectomy after the endometrial ablation procedure.

Another study, reported a similar link between endometrial ablation and hystectomy. “On the basis of our findings one third of women undergoing rollerball endometrial ablation for menorrhagia (heavy menstrual bleeding) can expect to have a hysterectomy within 5 years. If the linear relationship noted during the first 5 years is extrapolated, theoretically, all women may need hysterectomy by 13 years.”

Post ablation tubal sterilization syndrome. A 1996 study of 300 women who underwent ablation found an array of pathological changes in the uterus including: hematosalpinx, endometriosis, chronic inflammation of the fallopian tubes, and acute and chronic myometritis. Eight percent of the women developed intense cyclic pain that necessitated a hysterectomy within 5-40 months post endometrial ablation.

Informed Consent That Isn’t

Recently, Hormones Matter has begun to explore the legalities of the medical informed consent, here and here. With all the adverse effects associated with endometrial ablation, especially the need for hysterectomy later, one must question whether women are informed about those risks. As I have found when investigating this topic, there are few long term studies on endometrial ablation. Many of the articles cited for this post come from paywalled journals that are not readily available to either the patients or the physicians – the costs are prohibitive for both. So it is not clear whether the physicians performing these procedures are aware of the long-term risks associated with ablation. And as one physician suggests, neither the pathologists nor radiologists responsible for diagnosing post ablation pathology are trained to recognize these complications. Without data or access to data and without training, one wonders whether it is even possible to have informed consent for a procedure like ablation.

You know the sayings “never mess with mother nature” and “you never know what you’ve got ’til it’s gone?” We need to heed those words at least when it comes to treatments that can’t be reversed or stopped! At the very least, we have to become thoroughly educated about the risks and benefits of any given medical procedure.

This post was published originally on Hormones Matter in May 2013.

 

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