pelvic pain

Bladder Pain Syndrome – Interstitial Cystitis

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Symptoms of pain related to the bladder, urinary urgency and/or frequency affect up to 12 million Americans and can range from uncomfortable to extremely debilitating. These symptoms can affect both men and women, although they are more common in women. Although these symptoms can be difficult to treat because there is no particular treatment that works for a majority of individuals, a range of treatment options do exist. With patient, physician, and sometimes other healthcare providers working together to explore options, relief from bladder symptoms can be achieved.

Symptoms of bladder pain syndrome – interstitial cystitis include recurring pelvic pain, pressure or discomfort. Pain may worsen with specific food or drinks, and with bladder filling. Pain can be specifically located in the bladder, urethra, or vagina, and/or more generally present in the lower abdomen, pelvis, and lower back. Pain with sexual intercourse is a common symptom. Urinary frequency (the need to urinate frequently) is often present and can be extreme, with some patients needing to urinate up to 60 times per day. Urinary urgency (a strong need to urinate) can also be present. This can also be accompanied by spasms.

Interstitial cystitis, the original name for this disease, had fairly strict diagnostic criteria that did not encompass all patients with this similar set of bladder symptoms, so other names have been proposed including painful bladder syndrome (PBS), bladder pain syndrome (BPS), and hypersensitive bladder syndrome. Some doctors now use the name interstitial cystitis to encompass all patients with bladder pain symptoms not from other causes (such as infection), and some doctors use the newer nomenclature such as bladder pain syndrome. Some doctors use the term interstitial cystitis to refer only to a subset of patients who have ulcerations in the wall of the bladder called Hunner’s ulcers. These differences can be confusing to patients.

Diagnosis of BPS can be challenging, since patients can present with a wide variety of symptoms, and the symptoms often overlap with other pelvic diseases such as endometriosis and adenomyosis. BPS is usually diagnosed through the clinical signs and symptoms of the patient, and by ruling out other conditions such as bladder infection and bladder cancer. In the past, cystoscopy with hydrodistention (slowing filling the bladder with fluid, then looking at the bladder wall using a camera scope), and the potassium sensitivity test, have been used to diagnose BPS, but these tests are no longer recommended because they can trigger additional pain in patients, and they are sometimes negative even in the presence of disease.

There is no cure for BPS, and treatments are directed at symptom control. The American Urological Association (AUA) recommends trying treatments in order from least invasive to most invasive. Treatments required for any individual may vary over the course of time, and sometimes multiple treatments at once may be used. The first line of treatments include education about normal bladder function, and self-care strategies to help manage bladder pain. An important self-care strategy for many BPS patients is to avoid dietary food triggers. There are some foods such as citrus, vinegar, tomatoes and coffee that are common triggers in individuals whose bladder pain is affected by diet; however, it is important to identify your own individualized food triggers, since they may be different for different individuals.

The second line treatments recommended by the AUA include manual physical therapy, and certain medications– both oral medications, and medications delivered via catheter to the bladder. Manual physical therapy should be performed by a pelvic floor physical therapist trained in manual therapy techniques, and Kegel exercises should be avoided. Oral medications include amitriptyline (an antidepressant sometimes used to treat pain), and antihistamines. Intravesical medications (delivered by catheter to the bladder directly) include heparin, lidocaine, and DMSO.

Third line treatments become more invasive, and include cystoscopy with hydrodistention, and surgical treatment of Hunner’s ulcers if found. Fourth line treatments include surgically implanted electrical nerve stimulators. Additional treatment possibilities include cyclosporine (an immunosuppressive drug), Botox injections, and surgery to remove the bladder. These options can have significant side effects and complications, so they are only undertaken when no other treatment strategies have worked. Pain management strategies should be used at all stages of treatment, and include over the counter and prescription painkillers, as well as stress management techniques and physical therapy.

Individuals with BPS may be more likely to have certain other diseases as well. It is highly associated with endometriosis, with some studies suggesting that up to 80 percent of patients with endometriosis also have BPS/IC. Individuals with allergies, migraines, or asthma may have a greater chance of developing BPS/IC. BPS/IC is also strongly associated with irritable bowel syndrome, and is also associated with vulvodynia, fibromyalgia, chronic fatigue syndrome, and lupus.

Recent research indicates that different pain syndromes often occur together in the same patient, often as well as other systemic diseases. As the relationships between various pain syndromes and different diseases become better understood, this may lead to new and better treatment options that are able to treat the whole individual rather than trying to treat each separate syndrome, in patients who have multiple diseases. One common frustration in patients with multiple diseases is that each specialist only looks at and treats their own clinical area, and then patients themselves have to coordinate care between specialists and different approaches, which may sometimes even conflict with each other. Many patients would welcome the change to treat and understand their body as one system, with the help of specialist health care providers who understand the relationships between different diseases and different parts of the body. Unfortunately, this type of integrated care delivery is currently only available to patients with certain life-threatening conditions such as cancer or heart disease, and only in the most advanced hospital systems. For now, patients with BPS/IC have to take charge of managing their own way through their treatment options.

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This article was published previously on Hormones Matter on September 11, 2014. 

Physical Therapy for Female Sexual Pain

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In a previous article, I discussed some of the many possible causes of female sexual pain. In this follow-up I will discuss how physical therapy can address some sources of pain with sex, give guidance on how to find a therapist, and offer tips to consider when engaging in this specialized type of physical therapy.

A thorough examination by a gynecologist is always the first step in addressing pelvic pain, as not all causes of pain can be treated with physical therapy. Physical therapy works best to address issues including nerve sensitivity, muscle dysfunction, alignment, fascial mobility, and scar tissue.

How Do You Know If Physical Therapy Can Help You?

Your gynecologist may refer you directly to physical therapy for treatment of your pain. Unfortunately, some physicians are not aware that physical therapy can address these issues, or may not know a therapist that they feel confident sending you to.

Here are some signs that specialized pelvic PT may be able to help you:

  1. The gynecologist has not found any medical issues causing your pain. If you have visited your doctor, had a thorough evaluation, and have not had any medical findings, your issues may be musculoskeletal. In that case, evaluation by a pelvic PT is warranted.
  2. Issues with urination or defecation. For example, delayed or incomplete urination, pain with bowel movements or urination, urinary frequency, or urinary leaking may indicate pelvic floor dysfunction.
  3. You have a history of chronic infections, inflammation, or physical trauma. These can cause restriction of the connective tissue in and around the pelvis and pelvic floor. This restriction, over time, builds up and can limit mobility or put strain on pain sensitive structures. Examples might be chronic yeast infections, endometriosis, falls to the tailbone, or sexual trauma.
  4. You have a history of surgeries or scar tissue. Scar tissue restricts the normal mobility of tissues and puts pressure on pain sensitive structures. Abdominal or pelvic scar tissue can cause pain at the site of the visible scar, or in areas that may not seem connected.
  5. You have other issues such as lower back pain, poor posture, or discomfort in sitting. The pelvis is integral to the function of the rest of the body, and dysfunctions here can lead to problems elsewhere.

What Does Pelvic Physical Therapy Entail?

Therapists in this field are specifically trained to treat pelvic structures, both internally (vaginally and rectally) and externally. The most common treatment methods that pelvic health PTs may employ are manual soft tissue work, exercise, biofeedback, and education.

Soft Tissue Work

There are many manual techniques that therapists can use to treat your muscles, joints, connective tissue, and even organs. These each of these techniques requires its’ own specialized training and should not be provided by untrained practitioners. While not a “massage,” these techniques do involve using gentle pressures, applied by hand, to improve function. The most common question I get on this subject is, “will it hurt?” This is an understandable concern – you are going to see the therapist because you have pain, and it can be a scary proposition to have someone touching already painful areas. This is certainly something to discuss with your therapist before treatment so that you are both comfortable with proceeding. In many cases the therapist will need to treat these sensitive areas in order to bring you relief. Because these areas are already irritated you may experience some initial discomfort as the therapist works with them. But the goal of treatment is NEVER to cause pain; in fact this is avoided at all costs. There are strategies that can be used, such as a physician-prescribed lidocaine gel, to make sure you are comfortable.

Exercise

When we think of exercise for pelvic health, most people think of Kegels. However, this is only a small piece of the exercises that can be helpful! Exercises may be prescribed to teach you to relax your pelvic floor, coordinate the pelvic floor with other muscles in your body, or relieve pressure on painful structures by improving posture, stability, or alignment. After evaluating you, your therapist will decide if any exercises are called for in your case. If they are, they will prescribe exercises targeted to improve your specific dysfunctions and will educate you on how to do them safely and effectively.

Biofeedback

Biofeedback is any method of giving you feedback on what your body is doing. In pelvic therapy this is commonly done to bring your awareness to your pelvic floor. Using a sensor, the biofeedback machine will determine how active your muscles are and give you a visual cue to help you learn what “relaxed” and “contracted” feels like. This is extremely useful, as many women who have pain with intercourse have muscles that have forgotten how to “relax.” They may be constantly contracted, tight, and painful. Sensors can be used internally (vaginally or rectally) or externally. There are also tools that you can use at home to continue your training outside of therapy.

Education

The primary job of any physical therapist is to educate, and this will begin on day 1 of treatment, with your evaluation. Your therapist will explain to you what s/he is doing and why, and once your evaluation is complete the results should be explained to you. From there you and your therapist will create a plan for your care. You may be educated sexual positions that might be more comfortable for you, lubricants, better toileting habits, sitting and standing postures to reduce stress on the pelvic floor, home treatments or exercises, relaxation techniques, breathing techniques, common irritants to the pelvic floor, and things to avoid as your treatment progresses. I have found that the more educated and informed my patients are, the better their outcomes tend to be! Your physical therapist can be both therapist and coach to better help you reach your goals.

So how do you go about finding a specialized pelvic therapist who can treat your pain? Your primary care doctor or gynecologist may have someone that they refer patients to on a regular basis.
If they do not, you can Internet search your city with the phrases “pelvic floor therapist,” or “women’s health therapist.” Other key phrases to help you narrow your results include “dyspareunia” (pain with intercourse) and “pelvic pain.”

You can also access directories of practitioners. For example, https://hermanwallace.com/practitioner-directory  and  http://www.womenshealthapta.org/pt-locator/. Therapists listed on these sites have taken continuing education courses in pelvic floor physical therapy. Be aware that not all therapists list themselves on these sites, as some require hefty membership fees to join.

Lastly, here are some helpful tips to consider when beginning pelvic physical therapy:

  1. Research your therapist. Not all therapists who work with the pelvis may have experience working with your particular issue. It’s okay to research the therapist online, or call them to discuss their background and training.
  2. Ask Questions. During your evaluation and subsequent treatment, ask any questions that come to you. When you get home, make a list of any questions or concerns that come up, and bring the list to your next session. The more educated you are on your body and treatment, the more comfortable you will be and the more productive your sessions can be.
  3. Communicate. During treatment please speak up if you are uncomfortable or have pain. We, as therapists, rely upon you for feedback. As I like to say, you are the only person feeling what you are feeling! Please do communicate during and after your sessions so that we can better help you.
  4. You are in charge. You will be asked for your consent to treatment before any treatment is undertaken. You can consent to all treatment, some portions of treatment, or none at all. You can also decline treatment at ANY point in a session, for any reason. Lastly, you can ask to have someone else in the room while you are treated. You are always in control of your treatment session.
  5. Keep a Journal. Keeping a journal of your symptoms may help you to track your progress over time. It can also give valuable information if you have a significant change and we are trying to understand the cause.
  6. Be Proactive. If your therapist gives you a home exercise or self-treatment plan, do your best to work with it. And if they haven’t given you one, it’s okay to ask for it. I find that the more engaged patients are with treatment, the better their outcomes tend to be.

Female sexual pain is more common than most people realize, and in many cases can be treated successfully with physical therapy. Please do not doubt yourself if you are experiencing this- you deserve to have full function, without pain, and it is worth your while to investigate treatment options.

We Need Your Help

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

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This post was published originally on Hormones Matter on February 18, 2016. 

Endometriosis, Adhesions and Physical Therapy

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Almost a year ago, I had a surgery that was supposed to fix all of my health problems, not create a whole set of new ones. My endometriosis symptoms had become severe and debilitating—I was on medical leave from work, wasn’t much help to my family, and couldn’t go out with friends. I searched out the best endometriosis specialist in Canada and scheduled laparoscopy excision surgery, a procedure where all of the endometriosis the surgeon can find is cut out. Although excision surgery is not a cure, it is one of the only endometriosis treatments that offers many women long-lasting relief from symptoms.

My excision surgery seemed, on the surface, to have been successful. My endometriosis had been extensive. It was found on the walls of my abdomen and pelvis, on my left ovary, on my large intestine, and on my left ureter. In addition, I had extensive adhesions (bands of scar tissue) that had bound those organs together and attached my intestines to my abdominal wall. My doctor had removed all the endometriosis, cut all the adhesions, and removed my left ovary and tube, which were badly damaged by adhesions and were unsalvageable. I cried when I heard the news, out of relief. My severe symptoms were explained, and the cause of them had been treated. My doctor had characterized my surgery as long, difficult, and complicated, but ultimately successful. I felt that once I healed I would have a very good chance of feeling much better.

If someone had told me that the next year would bring another surgery, several ER visits, several hospitalizations, a new diagnosis, and a new set of chronic problems that rivaled my old symptoms in severity, I might have questioned their sanity. I went home from my surgery sore, but very relieved that it was over with. I didn’t know that my battle with adhesions was just beginning.

Adhesions are scar tissue that forms inside the body in response to injury. Some adhesions are thick bands, and some are more diffuse and filmy. They can glue organs together and to the abdominal wall, which can interfere with the function of the organs that are affected, and cause pain. Many organs need to move in order to be able to function: for example, the intestines need to be able to move to push food through, and the ovaries and Fallopian tubes need to be able to move for the ovary to release an egg and have it move down the tubes into the uterus.

Surgery is a major cause of adhesion formation. One third of patients are readmitted to the hospital an average of 2 times in the 10 years following open abdominal or pelvic surgery, for conditions related to adhesions. The most common problems caused by adhesions are chronic abdominal or pelvic pain, small bowel obstruction (where the intestines are kinked or twisted, and are partially or completely blocked), female infertility, and inadvertent bowel injury in subsequent surgeries. Although minimally invasive laparoscopic surgical methods are superior to laparotomy (open surgery) for many reasons, laparoscopic surgery does not necessarily result in fewer adhesions.

Surgeons typically underestimate the incidence and complications caused by adhesions, and information about adhesions is provided in only 9 percent of surgical informed consent forms. Adhesions occur in 70 to 95 percent of patients undergoing gynecologic surgery, and post-surgical adhesions are cited as the primary cause of bowel obstruction. Adhesions are responsible for over one billion dollars annually in health-care costs in the U.S.

After my excision surgery, I had complications due to an undiagnosed bleeding disorder (see my story here) that resulted in another surgery 7 weeks after the first. Adhesions were once again found and cut during that surgery, but despite that, about 6 weeks after the second surgery I started to experience symptoms that eventually turned out to be adhesions again. The conundrum of adhesions is that surgery is both a treatment, and a cause. Multiple surgeries can increase the number of adhesions, although there are some surgical techniques that minimize adhesion formation to the extent possible. My problem with adhesions was likely exacerbated by my undiagnosed bleeding disorder, since meticulous control of bleeding during surgery is one important way to minimize adhesion formation.

By four months after the second surgery, my symptoms were once again greatly affecting my quality of life. I had severe pain in the left lower pelvic area that prevented me from doing many activities. I had severe lower abdominal pain and nausea after eating, even when eating only small meals of food that should have been easily digested. When my intestines would get partially blocked due to bowel obstruction, the pain was intense and I couldn’t eat without throwing up.

The pain I would get after eating would come on suddenly and intensely. It was waves of sharp, stabbing, knifelike pain that would leave me doubled over. I was afraid to eat while I was out of the house because sometimes I would end up on the bathroom floor, unable to move without throwing up due to the intensity of the pain. I started to hate food and avoided eating whenever I could.

My doctors (a general practitioner, an endometriosis specialist, a gastroenterologist, and a pain management doctor) all agreed that I likely had a problem with adhesions, but they all also agreed that little could be done about it. Unanimously they said that although I might get better with another surgery to cut the adhesions, I might also get worse. I was offered the typical array of medications, including antispasmodics to decrease the intestinal pain I had, antidepressants, which can sometimes be helpful for visceral (organ) pain, and the fibromyalgia/anti-seizure drug Lyrica.

After doing some research, I decided that a specialized form of manual physical therapy that treats adhesions non-surgically (Clear Passage Physical Therapy) was probably my best hope. I travelled to Miami twice for treatment with an amazingly compassionate and skillful physical therapist. I was amazed on my first trip to notice a big difference in my symptoms fairly quickly—on my second day I was able to walk up a small hill and a set of stairs without any pain, something that hadn’t been possible since the problems with adhesions had started. I also started being able to eat a little more normally. By the end of the second trip, my symptoms had improved very significantly.

I still have to watch what I eat quite carefully, and even as I write this I am recovering from another partial bowel obstruction. I don’t think my intestines will ever be the same as they were before my surgeries; they may always be affected to some extent by adhesions. However, I have to keep in mind that the gastrointestinal symptoms I had due to endometriosis on my large intestine prior to surgery were also very unpleasant and affected my quality of life. So fear of adhesions is not a reason to avoid surgery, but it is important to be aware of the potential for problems. I was lucky that my doctors recognized the problem as adhesions very quickly, since many doctors do not. And I was also fortunate to receive physical therapy treatment that finally, a year after my excision surgery, has allowed me to feel like I am really getting my life back.

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This article was published originally on Hormones Matter on July 22, 2013.

Pelvic Pain and Abdominal Heat – A Personal Story

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In the past year I have had two strange, but fairly minor in the grand scheme of things, health issues. When I was going through them, I tried to find information about both conditions online but wasn’t able to find much information or advice about what to do to cure them. Because there seems to be a dearth of online information about these issues, I decided to write this post.

Though I glanced around on the internet for information about these conditions, I did not do extensive research into either of them, and this post should not be seen as professional, or medical, advice. It is simply a description of my experience and what seemed to help me. I hope that the things that helped me can help others who are going through similar things.

Issue #1 – Pelvic Pain

On my web site, I described the pain as follows:

I’ve been experiencing pelvic (toward the back door) pain for a while. It started a few months ago but it was on and off and I was able to ignore it. A few weeks ago it got so bad that it kept me up all night for a few nights. Then, a week ago, it became constant. Constant, horrible, tightness and spasming in my pelvis. It’s excruciating. Truly, it’s the most horrible pain I’ve ever experienced. On a 1 to 10 pain scale, I’ll give the pain a 9. I’ve never felt pain this horrible, but I’ve never passed a kidney stone or gotten severely burned, so I’ll reserve a 10 for those things. It’s consuming pain though and it really, really, really sucks.”

Basically, I had a horrible muscle spasm and/or cramp in my pelvis that really, really hurt.

I think that it was a stress reaction and autonomic nervous system dysfunction. Some people get stress headaches, apparently I get stress pelvis-aches. Neither are a choice by any means, but stress-reducing activities can help to relieve symptoms of both. Stress reduction and vagal nerve toning exercises can also help to alleviate autonomic nervous system dysfunction symptoms.

The things that I did that helped are:

  1. Chiropractic adjustments 2x per week
  2. Kava tea (it’s not for long-term use and I only used it as needed, but it helped a lot)
  3. Meditation
  4. Sitting on a tennis ball (maybe it massaged the region?)
  5. Massage
  6. The book, “A Headache in the Pelvis: A New Understanding and Treatment for Chronic Pelvic Pain Syndromes” has excellent advice in it, and it also helped me to realize that I’m not alone and that the pain was not going to last forever.
  7. Hot baths with Epsom salt
  8. Kratom, Corydalis and other herbal painkillers
  9. Going on a vacation

Through doing those things I was able to stop the cycle of pain, tension, anxiety, and muscle-spasm. I have been pain-free for about a year.

I went to a doctor when the pain started and was offered an anti-psychotic drug as treatment. I’m not sure what she thought an anti-psychotic drug would do for a muscle spasm, but I refused the prescription. The ridiculous over-use of anti-psychotic drugs to “treat” every condition imaginable is a topic for another post, but here’s an example of it happening to me.

Issue #2 – Heat in Abdomen

Months after I recovered from the pelvic pain, I was waking up in the middle of the night, typically around 3 am, with a burning-hot feeling in my abdomen. It felt as if I had swallowed a hot coal, and the heat made it impossible to sleep. The heat would remain for a few hours, then it would dissipate and I would be able to sleep again.

Though what I ate did make a bit of difference, I don’t think it was indigestion. The heat was in my abdomen, but it didn’t really feel like it was in my stomach. These things are hard to pinpoint though.

It wasn’t hot-flashes from menopause. I’m 36 and menstruate on a regular schedule.

I didn’t sweat – it was a dry heat.

My night heat experience was strange and somewhat disconcerting, but I doubt that it’s indicative of anything seriously wrong with me. The worst thing about it is that it kept me from sleeping through the night. Though I didn’t/don’t think that my nighttime abdominal heat is a serious problem, it was annoying and I wanted it to go away. I changed a couple of things in my life, and, as of now, it has stopped. The things that I think helped are:

  1. A blend of herbs called Adrenoplex
  2. Acupuncture
  3. Eating less meat and more fruit

Because the Adrenoplex herbal formula helped, and because of things my acupuncturist said, I suspect that my abdominal heat issue was a result of adrenal fatigue. I am trying to keep my stress levels low to keep my adrenals healthy.

I haven’t been woken by abdominal heat in more than a month. I’m hoping that I won’t experience it in the future either.

Time

As with all stories of individual healing, one cannot control for the element of time. I have no doubt that time, and my body’s natural healing mechanisms, helped me through both the pelvic pain and the abdominal heat. I think that the other things I mentioned helped too, and I hope that they help others as well.

Hope

Even though these issues weren’t (as far as I know) indicative of serious problems, they were still disconcerting and I wanted answers about how to get through them. Not being able to find answers online fed into anxiety, and may have even made both issues worse. I hope that in sharing my experiences, and in noting not only what helped me but also that I got through them and am no longer experiencing either pelvic pain or abdominal heat, others can rest a bit easier and know that they can get through these odd issues as well.

Information about Fluoroquinolone Toxicity

Information about the author, and adverse reactions to fluoroquinolone antibiotics (Cipro/ciprofloxacin, Levaquin/levofloxacin, Avelox/moxifloxacin and Floxin/ofloxacin) can be found on Lisa Bloomquist’s site,www.floxiehope.com.

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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.

 

The Side Effects of Endometriosis Medications

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Making Difficult Decisions

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

 

Endometriosis

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

I have a big decision to make.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I would love to hear your thoughts xo.

 

Pain After Endometriosis Excision Surgery

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When an endometriosis patient takes the step of having laparoscopic excision surgery to treat their endometriosis, they have often already been through a long journey with many failed treatments. This journey often includes treatments such as multiple rounds of different types of birth control pills, stronger hormonal medications designed to suppress menstrual cycles (such as Lupron or other GnRH agonsists), multiple cauterization or ablation laparoscopic surgeries, and various different complementary alternative medicine approaches.

Most patients who undertake excision surgery after trying many or most of the above, do so on the basis of their own research, since many gynecologists are misinformed about endometriosis treatment, and are not trained to do excision surgery. A recent worldwide consensus paper on the management of endometriosis states that “there is unanimous consensus over the recommendation to excise lesions where possible, especially deep endometriotic lesions, which is felt by most surgeons to give a more thorough removal of disease.”  Sadly, there are fewer than 100 surgeons in North America currently practicing expert excision of endometriosis.

Patients come to excision surgery with hope that this treatment will finally bring them relief. And when pain persists or recurs after excision surgery, patients may feel disappointed, hopeless, and confused.  However, there are many causes of pelvic pain that are not endometriosis, which can continue to cause pain even after expert excision surgery, and once these other causes are treated, excellent pain relief and relief of other symptoms may be achieved. Although it may be natural after previous surgeries have failed, to assume that endometriosis is still the cause of the pain, if surgery was performed by an expert, it is prudent to rule out other potential causes of pain before assuming that endometriosis continues to be the culprit.

Adhesions After Surgery

Adhesions are a very common occurrence after laparoscopic excision surgery. Adhesions occur in 70 to 90 percent of patients undergoing gynecological surgery. In some cases, adhesions may be present but not cause pain, but adhesions can also cause chronic abdominal or pelvic pain, small bowel obstruction (where the intestines are kinked or twisted, and are partially or completely blocked), female infertility, and more. Adhesions are the primary cause of bowel obstructions and are a common cause of hospital admission for people with a history of abdominal or pelvic surgeries.

Pelvic Floor Dysfunction

Pelvic floor dysfunction is also a common consequence both of endometriosis itself, and of the surgeries used to treat it. The pelvic floor is a group of muscles and other tissues that form a sling from the front to the back of the pelvis. When the muscles are too tight, too relaxed, or a combination of both, it can result in problems with urination or bowel movements, pain with sex, pelvic pain, genital pain, back pain, and/or rectal pain.

Adenomyosis

Adenomyosis is a disease of the uterus, where the inner lining of the uterus (the endometrium) is found within the muscle wall of the uterus. There is no clear association between adenomyosis and endometriosis, but it is possible to have both conditions. Adenomyosis may be underdiagnosed because it is difficult to see using imaging techniques such as ultrasound, and the symptoms overlap with many of other conditions causing pelvic pain.

Interstitial Cystitis

Interstitial cystitis is a disease of the bladder that can cause pelvic pain, bladder pain, urethral and/or vaginal pain, painful sex, urinary frequency and urgency. Some doctors have found a very high association between endometriosis and interstitial cystitis, where many patients have both conditions. This has led to the two diseases being nicknamed “the evil twins.”

Vulvodynia and Pudendal Neuralgia

Endometriosis patients may also be more susceptible to pain syndromes involving nerves in the pelvic area, such as vulvodynia, a condition associated with pain in the opening of the vagina, and pudendal neuralgia, a condition involving pain, burning, and/or numbness in the genital area and rectum. The potential cause and effect relationship between endometriosis and these other conditions is not clear; however, some doctors theorize that chronic inflammation, immune system dysfunction, and neural pathway sensitization may play a role in the development of multiple pelvic pain syndromes.

Not All Pelvic Pain is Endometriosis

Unfortunately, although endometriosis is a painful and often debilitating condition all on its own, in many patients other conditions also contribute to pain and other symptoms. For doctors and patients alike, it can be tempting, once a diagnosis of endometriosis is made, to blame every symptom arising in the pelvic area on endometriosis. However, pain after careful excision surgery can often be caused by one or more of these other pelvic pain conditions, and a correct diagnosis of the underlying cause of the pain is crucial to successful treatment.

176 Million Reasons

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I have a disease which cannot be described-
Its symptoms vary and its cause is unknown;
Doctors routinely mistreat it to the dismay
Of 176 million women worldwide.

As women we are captive to this farce.
The promised cure an enigma, a cruel mirage.
Young girls not yet women left hollow,
Emptied of their organs, told to smile wider.

We find that diagnosis leads merely
To more confusion. There is no
Medical consensus. We are sheep,
Dosed and herded, penned together.

We are the women that doctors fear,
we stumble in crying, we live with pain.
Nobody wants us to say what we need.
The stigma is worse than the disease.

 

Lisa GrahamLisa lives in Homer Alaska with her amazing husband, and is an advocate for endometriosis awareness, education, and higher standards for women’s health worldwide.  She works in Quality Assurance, and she dreams of saving the world with poetry and organic vegetables.  She is currently pursuing a Master’s Degree in Project Management.