vulvodynia

Why Does It Hurt When I Have Sex? An Overview of Possibilities

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sexual pain

The Mayo Clinic terms pain associated with sexual stimulation or vaginal contact as “sexual pain disorder,” and categorizes this as a type of female sexual dysfunction.  More commonly we speak of “dyspareunia” to refer to pain with sex. It can present in a number of different ways; it may be internal or external, it may or may not prevent orgasm, and it may even occur after sexual activity.

Unfortunately, pain with sexual activity is rarely discussed or considered seriously.  I’ve sat face to face with health care professionals who tell me that the primary cause of pain is that the women’s partner is too large for her.  Sexual dysfunction in women is typically treated as either an inevitable “female problem” or an emotional disorder requiring antidepressants or anti-anxiety medications.

Pain is not uncommon, and it is treatable. Consider how many people suffer low back pain, headaches, or stomachaches.  Imagine how much effort goes into diagnosing and treating these issues. Why then would we not be just as open about discussing and treating female sexual pain?  Given the complexity of the anatomy, which I outline below, and the intersections of hormones, pregnancy and childbirth, postural habits, and the possibility of infection and trauma, it should be no surprise that many women experience pain or other dysfunction.

In my experience as a physical therapist, I find that while some women seek treatment, most either presume it is normal or don’t realize that there are treatment options. I can’t tell you how many times a woman will report “no” to sexual pain on my intake forms, then later during the evaluation report with surprise “I have had that pain my whole life, I thought it was normal!”

I will say now what I always tell these women: with the possible exception of disruption of a hymen or a significant size difference between partners, discomfort during sexual stimulation is never considered normal. And even in these situations pain is not inevitable, and should never be allowed to continue as this can result in further trauma and future discomfort.

First, an overview of the anatomy.  The external female genital area is composed of muscles known as the pelvic floor, as well as extensive nerves, glands, and other soft tissue.  The muscles work to support of organs against gravity, for control of urination and bowel movements, and for sexual function. In the pelvic floor, there are three separate openings:  the urethra, the vagina, and the anus.  The clitoris, which is composed of highly sensitive erectile tissue, functions solely for sexual stimulation.  It is covered by a “hood” of soft tissue externally, but also extends internally.  The entirety of the labia, external clitoris, and vaginal opening are known as the vulva. Internally, the vagina extends to the uterus.

Female anatomy
Painting by: Meryl Ranzer

Clearly, this is a complex area, with many functions, and it makes sense that there might be many possible locations and causes for discomfort.  Pain may be experienced with initial penetration or superficial stimulation, with deep penetration, with orgasm, or after orgasm.  I will briefly overview some of the possible causes of each.  In a subsequent article, I will address strategies for dealing with some of these causes, from the perspective of a physical therapist specializing in women’s health and pelvic rehabilitation.

A thorough examination by a gynecologist is always the first step in assessing pelvic pain, as not all causes of pain can be treated with physical therapy.

Superficial Sexual Pain

Sexual pain may be experienced with initial (shallow) penetration or with light touch to the vulva, perineum, or anus.  It may feel like burning, stretching, or sharp stabbing discomfort.  It may increase or dissipate if sexual activity continues.  It may even be intense enough to prohibit all touch.

Decreased lubrication, related to hormone changes or lack of physiologic arousal, may cause pain with initial penetration (arousal includes increased blood flow to the genital area as well as increased lubrication). Thinning of vaginal tissues, known as atrophy, often occurs with hormone shifts associated with menopause, and may result in discomfort and light bleeding with penetration if adequate lubrication is not present.

Active infections can cause sensitivity and irritation of the vulva and vagina. These infections may be acute, or low-level and chronic. Even after infection has resolved, residual irritation or fascial restrictions within the tissues can cause pain.

Sensitivity to perfumes and dyes, such as in laundry detergent, pads, or tampons, can cause irritation and sensitivity.  There are also skin conditions that may cause unusually fragile skin and pain to touch. Swelling of glands at the opening of the vagina may also occur and is frequently found in women with vulvar vestibulitis (pain and irritation at the opening of the vagina).

An intact hymen may be the cause of pain with initial penetration. However, given the variety of shape and thickness of the hymen, and the many activities that can change it over the course of a woman’s life from childhood to adulthood, pain with penetration during a woman’s first sexual encounter should not be presumed to be inevitable.

There may be atypical anatomy, such as thickened hymenal remnants or fascial bands that restrict the vaginal opening. There may also be scar tissue that is restricting the vaginal opening, due to trauma, tearing during childbirth or episiotomy.

Tightness of the muscles of the pelvic floor can cause pain with initial penetration. This pain may be right at the opening of the vagina or referred to other areas.  In severe cases, this is known as vaginismus, which is an involuntary spasming of the muscles that prevent penetration. It can be associated with hypersensitivity of the skin and muscles so that even light touch in the genital area causes pain. Vulvodynia refers to chronic pain of the vulvar area without a known cause. It is often accompanied by tight pelvic floor muscles.

Deep Pain with Sex

Pain is often reported with deep penetration, and may be described as a deep ache, cramping, or as if a woman’s partner is “hitting something” in her pelvis.

The sensation of something being bumped or hit with penetration is often related to uterine positioning. The uterus may be tilted (which in some women is their normal anatomy, or in other women may be related to tight ligaments, scar tissue, or fascial structures). The uterus may also not be mobile enough to shift comfortably during sex.  There may be scar tissue deep in the vagina that restricts vaginal or uterine mobility. Fibroids at the uterus may make it larger, asymmetrical, or less mobile and more prone to discomfort. Finally, the cervix may be sensitive due to fascial restrictions, surgical interventions such as colposcopy for abnormal cells, or irritation from IUD placement. In these cases changing sexual position or angle of penetration sometimes improves the discomfort, although in severe cases there may be no position of comfort.

Due to the proximity of the bowels to the vaginal canal, constipation or bowel irritation may result in pain with deep penetration. A sensitive or infected bladder may also be irritated for the same reason. Bowel pain may feel like cramping or a deep ache. Bladder pain may feel like a deep ache above the pubic bone, burning, or a painful bladder pressure.

Finally, active infections in the abdomen and pelvis may also cause pain with deep penetration. Acutely, infections and accompanying irritation can cause direct sensitivity and pain.  In addition, chronic processes can cause pain due to adhesions that are formed with chronic inflammation. Endometriosis is an example of this.  Adhesions restrict the movement of tissues and can put pressure on pain-sensitive structures.  Unfortunately, adhesions are challenging to see on imaging, but they are palpable to trained therapists and physicians and are often visible when investigated surgically.

Pain with Orgasm

This type of pain is less common, but from my experience, it may indicate decreased mobility of pelvic structures, spasm or trigger points in pelvic floor muscles, or inflammation and irritation of pelvic structures.

Pain after Sexual Activity

Pain after sexual activity is often a response to irritation and trauma caused by the activity itself.  In these cases, patients may experience pain or discomfort during activity and have it continue or worsen afterward.

In the case of a deep, heavy aching discomfort after sexual activity, pain may be related to venous congestion in the pelvis. During activity, blood flow into the pelvis increases, but for these women, the blood flow out cannot keep up just like swelling or varicosities commonly found in the legs. This may be directly related to inefficiencies of the veins themselves, but in many cases is related to scar tissue and fascial restrictions that restrict blood flow.

Clearly, there are many causes of discomfort with sexual activity, but for each cause, there are treatment strategies!  There is no reason to accept discomfort as normal or inevitable. The first step in addressing pain is to visit a gynecologist well versed in sexual pain to rule out infection, fibroids, cysts, hormonal shifts, or other issues and to discuss treatment strategies. One strategy may be physical therapy, as specialized women’s health PT has excellent results in treating pelvic and sexual pain. In my next article, I will discuss which types of sexual pain can be treated with physical therapy, and what treatment may entail.

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This post was published originally on Hormones Matter on September 21, 2015.  

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Vulvodynia: The Silent Pain Syndrome

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vulvodynia

I want to talk about a pain syndrome that most women have probably never heard of, but affects nearly 14 million women worldwide. It affects all races and ethnicities with Hispanic women suffering 80% more than other groups. It is a pain syndrome that those affected are reluctant to share with their partners, closest friends, or their doctors. This is because their pain revolves around and within the vaginal area, an area that we women often do not feel comfortable talking about in any company. Making this the “silent pain syndrome” and leaving women everywhere feeling alone and damaged.

This pain syndrome is known by a few names such as Vulvodynia, Vestibulitis, Dysaesthetic vulvar, vestibular adentis and vestibulodynia. It was given several names back in the 1980’s to help doctors refine and come up with treatment plans based on where the pain was located, the condition of the tissues in the vagina, or surrounding areas, as well as what provoked the pain. However, since the 80’s more and more studies have been done on the condition showing that most women who suffer with it have overlapping symptoms from one form to another. This has lead the medical community to start moving away from trying to categorize or compartmentalize it into one of these diagnoses. For the most part nowadays, it is just called vulvodynia.

Vulvodynia was recognized as far back as the 1800’s, when it was treated by surgically removing the vulvar area. Unfortunately, many of these women only got temporary relief. It unfortunately,  was left out of the medical books until the 1980’s when Dr. Edward Friedrich began reporting on it. Since then 80 studies have been done on the condition. It is not clear whether the increase in research is due increased awareness or an increase in the condition itself. The National Vulvodynia Foundation says that the average women suffering with this condition can see upwards of 15 doctors and it can take as long as 12 years to receive a correct diagnosis. This is because so many doctors are still ill informed and poorly educated on vulvodynia. The medical community is lagging in research when it comes to women’s health conditions, especially those that cause chronic pain in our genital areas.

Sadly, most doctors will push their patient’s pain syndrome off as a psychological problem, PMS, stress, lack of love for her partner or even sex in general. Many of these women find no help from the medical community and go on to suffer in pain silently, leading to other co-morbidities such as depression, anxiety, suicidal ideation, irritable bowel syndrome, interstitial cystitis and fibromyalgia. For many women who have been abandoned by the medical community, they will go on to question their own mental and emotional stability. They will often blame themselves for their condition, thinking they have somehow damaged their body physically through picking up an unknown STD or have psychologically thought themselves into this pain syndrome as many of their doctors have suggested. These women often are unable to continue having sexual intimacy, some get so bad that they reach a point of not being able to wear clothes, sit, walk or even tolerate a gynecological exam. Urinating or defecating can bring on horrific stinging pain that leaves many to cry out with the simple act of going to the bathroom, which in turn leaves them drinking less and eating less and holding their urine  or bowels for as long as they can so as to not experience that feeling. Unfortunately, doing some of these things can further the progression and pain from this syndrome as well as to create other dysfunctional conditions. For those women whose conditions continue to progress, they can be left  extremely disabled, unable to work or care for their families, which in turn leads to high divorce rates and financial losses. Couple all of that with a condition that a woman feels she has no one to share it with and it is no wonder that they often go on to suffer with depression, anxiety and suicidal ideation.

What is Vulvodynia?

Vulvodynia is known as a neuropathic or inflammatory pain condition to the genital area in women. As of yet it is caused by an unknown etiology. It is thought to be from the same family and act much like “phantom limb syndrome”. Vulvodynia causes a myriad of symptoms such as inflammation, redness around the vestibule (opening to the vagina), the vulva itself (outside vaginal lips also known as the labia major) and to the inner or small lips (also known as labia minor), as well as the vagina itself (the inside tissues). It can effect specific spots in or around the vagina, like the perineum, rectum, thighs, pubic bone or pubic hair, clitoris and the urethra. For some women it can affect all of these areas making their situation life  altering, disabling and agonizing. Women who have this condition experience stinging, burning, itching and razor cutting like sensations with the slightest of touch, making intercourse, tampon insertion, wiping or washing the area and the wearing of clothes painful to impossible.

Some women also complain of feeling as if they are dried up down there, while others feel as if their insides are falling out of them. Often when the clitoris is involved, it can cause agonizing pain that shoots up into the abdomen. In many of these cases, the women’s abdomen can become inflamed and reddened as well, leading to irritable bowel syndrome symptoms. For many the pain is so agonizing that they are left unable to wear clothes, walk or even sit. For some the pain can extend into the urethra or even the bladder setting off another pain syndrome known as interstitial cystitis. This condition can leave them in severe burning pain during and after urination.

Vulvodynia is unique to each woman with some having it constantly while others have it intermittently. Some will only suffer from specific areas of pain while others have it everywhere. Some will only have pain with intercourse while others have it with anything entering or touching  the vagina. Some will suffer with only hypersensation while others will suffer with all of them. For some the pain will be manageable while others it will be life altering. Each women’s pain level and frequency is different making this illness hard to understand and even harder to treat.

What Causes Vulvodynia?

Well that is a good question, and unfortunately, no one in the medical community has yet been able to answer. However, there are several theories about what increases the risk for developing vulvodynia.

Compressed Pudendal Nerve

We know that some women have a damaged, compressed or pinched off pudendal nerve. The pudendal nerve is a nerve that comes off the spine and innervates the pelvic floor region. It is what allows you to control urine flow or bowel movements. It is also, what activates your glands when aroused to produce the moisture in the vagina and allows you to have an orgasm. It has many important and enjoyable functions, but if it becomes damaged it can also create a lot of pain, dysfunction, and grief. Damage to this nerve can happen by a fall to the back or butt. It can be injured during labor. It can become inflamed or compressed by an arthritic condition or by a cyst or tumor. Some of these conditions can be fixed with surgery or nerve blocks, which in some instances may relieve the vulvodynia. Unfortunately, compressed nerve affects only a small number of vulvodynia sufferers.

Infections

It has also been shown in studies that 54% of all women with vulvodynia also test positive for HPV, however scientists has not been able to say with certainty that this specific viral infection is the cause for these women. Instead of it being the cause, it may just be the women’s own immune response to the infection. Researchers have also studied other viral infections that are known to cause neuralgic pain syndromes like this, such as cytomeglavirus and the herpes viral family, but have not found any evidence of these infections.

Researchers have looked at candidiasis infections as well; this is because so many women with vulvodynia have a long history with chronic fungal infections with many using repeated “azole” therapy to treat it. Yet again, they have not been able to find a link or correlation with any species of fungi. Although there is a question as to whether the use of any of the “azole” drugs could have possibly caused this condition or whether it is just associated with it because so many patients with vulvodynia are misdiagnosed with yeast infections. Due to this, the medical community warns women to be careful when using the OTC “azole” drugs and to follow the manufacturer’s recommendations. Additionally, if the yeast infection is not cleared with the usual course of treatment or a second infection develops, you should not use the cream again without first seeing your doctor.

Studies have also looked at bacterial infections as the cause, here they found that 17% of sufferers had an infection with what is known as ureaplasma, which is often seen infecting the Bartholin glands. For these women treating the infection often times cleared the vulvodyina. They also found a small number of women with the Streptococcus B infection and again in many of these cases, treating the infection cleared the vulvodynia. None of these studies have been able to state with certainty that any particular infection is the cause, but they do show that if you suffer with a long standing, chronic or hard to treat infection of any kind (viral, fungal or bacterial) you could be at a higher risk of developing vulvodynia.

Childbirth and Episiotomy

For other women there was no clear accounting of an infection but they could relate the start of it back to the birth of a child or the episiotomy. Here again we are looking at damage to the nerve or the soft tissues.

Hormonal Birth Control, Cancer Medications and Other Steroids

Other studies have implicated oral contraceptives and early childhood intercourse as a cause, both of these may be linked to hormonal imbalances. Some drugs have been implicated as the cause of it too, such as cancer drugs and both oral and topical steroids. Even though the topical steroids are used to help with the inflammation and itching in this condition, they are known to cause thinning of the tissues and sloughing. They tend to lower the immune system allowing for other infections to pop up making the situation worse.

Comorbid Fibromyalgia and Chronic Pain

Fibromyalgia has also been implicated in vulvodynia, mainly because so many women who suffer with fibromyalgia also suffer with vulvodynia. However, it is believed that fibromyalgia is due to an unknown muscular etiology and as if often seen alongside chronic fatigue. Both of which are thought to be caused by an abnormally high level of a neurotransmitter involved in pain sensation, so having this pain syndrome alongside of these would stand to make sense and put you at a higher risk for vulvodynia.

Oxalates

Older studies have suggested high oxalates in urine may be responsible for the pain. Oxalates are like little sharp slivers of glass made up of calcium that are excreted through our urine, but as of recently this theory is no longer being considered. This is because so many women have not tested positive for excessive oxalate output. Those who have gone on low oxalate diets have had some to no response, leading the scientific community to suggest that the oxalates themselves are not the problem but instead the fragile irritated tissues that the oxalates cross are more the issue. Now even though this may not be the cause, going on a low oxalate diet may be worth a try to lessen the pain. Another study suggests pH imbalances may be involved, but again cannot be confirmed as of yet and does not hold true for every women.

Inflammatory and Allergic Reactions

Recent studies have shown a correlation with inflammatory allergic reactions, like those seen in people with mast cell reactions. This is also seen and been implicated in interstitial cystitis too. However, we are still in the beginning phases of understanding not only this correlation but also Mast Cell Disease. If you suffer from this, you may be at a higher risk of developing vulvodynia as well.

Researchers at John Hopkins in Baltimore looked for two cytokines (immune stimulating cells) associated with inflammation. They found significantly higher levels of interleukin 1 beta and alpha necrosis tumor factors in test subjects. This would suggest that there is an inflammatory process going on, possibly due to an autoimmune problem. Then pathologists out of Rotterdam in the Netherlands found through biopsies chronic inflammatory infiltrates in all the patients and none in the control group. The infiltrate was composed of T-Lymphocytes as well as a small number of B cells, plasma cells, mast cells and monocytes. An immunoglobulin important in antibody reactions, IgG was found in plasma cells of 75% of the patients. This again suggests that there is an inflammatory process caused by an autoimmune reaction going on, however, they are not ready to confirm or deny this yet.

Finally, the University of Iowa has found impaired natural killer lymphocyte activity in the women effected as compared to a control group. Natural killer cells are needed to defend the body against certain cancers, so this finding may explain why some women with vulvodynia also suffer with dysplasia, despite having not contracted the aggressive cancer producing HPV strains. This finding may bring us back to implicating the HPV virus. However, this is all new information and nothing has been confirmed yet.

Diagnosing Vulvodynia

There is no specific test for this condition. It is diagnosed by ruling out other conditions and diseases. Physicians may want to test and treat for any infections first and see if that relieves the pain. If not, then it may be vulvodynia. Vulvodynia is frequently misdiagnosed as a chronic vaginal infection from fungi or bacteria. However, if your cultures are negative for an infection you may want to consider vulvodynia.

Treating Vulvodynia

This is the million-dollar question that both women and vulvar pain specialists are asking. Unfortunately, we really do not know what causes it. This means that without an identifiable factor, we are guessing at how to treat it. We also know that every woman experiences vulvodynia differently, making a “one size pill” that treats everyone impossible. Each woman will go through a trial and error with treatment modalities. This can often make the journey long and tedious, as well as, quite discouraging and even painful, especially when something heightens the pain instead of lowering it. This is why it is very important to get involved with a vulvar pain specialist, not just a pain clinic or pain doctor, but one that has been truly trained in treating this condition. Here are some of the many modalities in the arsenal to treat vulvodynia.

  1. Trigger point injections. This will numb the area for a few hours to days, giving some relief with the hopes that they will be able to shut off the nerve or reprogram it. Lidocaine is usually used for this. However, this procedure can be quite painful and risks damaging the nerves and tissues further, so for many women this is not an option. Now some doctors will also prescribe lidocaine jelly or even xylocaine jelly to be smeared on the painful areas. These can topically numb the tissues and nerves, giving some minor relief for a few hours. Although once again, for some women just putting this gel on can be too painful and does not last long enough to make it worth it.
  2. Topical steroids. These are often prescribed to help with the itching and inflammation, even though research has repeatedly shown them to be ineffective.
  3. Baking soda douches. If the vagina is too acidic, some doctors will recommend baking soda douches, which is non-toxic and in a few cases, it can help.
  4. Interferon. Several studies have tried treating women with interferon. This has shown some success, but the relapse rate is very high and one study showed that using interferon on women who do NOT have HPV actually worked better.
  5. Topical estrogen creams, progesterone and/or testosterone. Early research was promising. However, it may be painful for those women who cannot tolerate any kind of a cream placed around or in the vagina. It is important to note that estrogen cream can activate Mast Cell Syndrome.
  6. Prophyllin compresses. Some women find compresses made of prophyllin ( a prescription powder) to be soothing to the area.
  7. Low oxalate diet. Oxalates are in nearly everything we eat, but you can avoid the high oxilate foods. Doctors who prescribe this diet often times prescribe calcium citrate to go along with it. The calcium citrate helps to neutralize the oxalates in the urine. The Vulvar Pain Foundation reports the two most consistently helpful regimes for their members are the estrogen creams and low oxalate diet with calcium citrate. Another thing that sufferers report helping them is, drinking lots of water. Water dilutes the oxalates in the urine which decreases irritation.
  8. Anti-depressants and anti-convulsants. Fibromyalgia researchers have suggested that certain anti-depressant drugs may be useful in women also suffering with FMS.  Vulvar pain researchers have not done studies, however, clinical experience; they suggest that the SSRI’s are not effective in treating this condition. There is no research on the anticonvulsants.
  9. Capsaicin (an extract of the red pepper). Capsaicin has been used successfully in other neuralgic pain conditions like, diabetes, HIV, herpes infection and even in interstitial cystitis. An ongoing study of topical application suggests it may relieve pain, however, because Capsaicin produces significant burning when applied it may not be appropriate for those suffering with vulvodynia due to inflammation. It may not even be appropriate for those women with skin break down or seriously sensitized tissues.
  10. Opiates and other pain relievers. These may be effective in the short term, but long term they are problematic.
  11. Physical therapy. Specialized pelvic floor therapy has helped some women suffering with vulvodynia, especially those who also have FMS. Dr. Glazier, a psychologist from New York, states that biofeedback along with physical therapy to the pelvic floor can help to strengthen and relax the muscles in women with vulvodynia. This therapy is often also used in people with interstitial cystitis and irritable bowel syndrome too.
  12. Surgery. There are multiple surgical options but none appear to reduce the pain and many increase it.
  13. Cannabis oil. Cannabis oil applied topically has become all the rage, but as of yet, there are no studies to evaluate its effectiveness. Vulvodynia sufferers, however, report significant relief .

What is the Prognosis with Vuvlodynia?

I wish I had better news to report here and maybe one day I will have it, but for now this is not known as a curable condition. Do not be discouraged. We have many diseases that we are not able to cure but have the ability to effectively control. The first step is getting properly diagnosed and ruling out any other conditions or infections. The second step is finding a vulvar pain specialist or a vuvlar pain clinic to start the treatment process. Both of which can be found through your doctor or through the National Vulvar Pain Foundation. Once you reach this point, your journey to getting better will begin.

Please know that it may take quite a while to reach a point of lessened or no pain. It may also take several attempts at different or mixed modalities including medications, creams, diet, physical therapy and trigger point injections to find what works best for your condition. If you are also suffering with depression, anxiety or suicidal thoughts then you also need to find a psychologist to help you work through all of this as well. Please know that these mental and emotional conditions are very common in women with vulvodynia. This is due to many factors such as constant pain, loss of intimacy and all that goes along in a relationship because of it, including, a loss of self-sexual beauty and feeling damaged. Suffering in silence also causes distress. So, please if you take nothing else away from this article, just know you are NOT ALONE!

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Adhesions: Cause, Consequence and Collateral Damage

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David M. Wiseman, PhD, MRPharmS.

Dear Dr. Wiseman,

I have been living with adhesions for over twenty years since the age of 21. After five years of period pains I was diagnosed with endometriosis and had five laparoscopic surgeries to remove it. I had relief for some while and then the pain came back. I also had adhesions, which they tried to remove, but they just came back. I don’t know what is worse – the endo or the adhesions.

At 30 I had a hysterectomy which they said would cure my endometriosis and pelvic pain. The pain only got worse and I started to have bouts of painful constipation and diarrhea which I was told was IBS. My belly was and is often bloated with a painful “pulling” sensation and severe gas.

Eight years ago my first bowel obstruction was caused by my intestine wrapping around my ovary. They tried to clean this up with surgery but I had five more obstructions and adhesions surgeries.

For about five years I have had lower back pain. Burning pain started 6 months ago when my bladder is full and when I pee, is about 14 times a day and 5 times at night. Being intimate with my husband is out of the question. My pain daily is an 8-10 and I have no quality of life. Of course the ER thinks you are a drug seeker when you come in continually for pain, but I go when I can’t tolerate anymore. I have tried hypnosis, massage therapy and acupuncture. I lost my job because I was either always taking days off because I was so tired from not sleeping, or in the bathroom. My health insurance has run out. I am taking Vicodin and Ambien.

I need to find someone who will listen to me. PLEASE, Jane

Patient Suffering

Although Jane’s email is a composite, it typifies the many we receive from patients who are at the end of their rope, having experienced some or all of these conditions: painful periods, endometriosis, generalized pelvic pain with adhesions, hysterectomy, IBS, painful bowel movements, bowel obstruction, bladder pain, lower back (sacroiliac joint) pain, painful intercourse, possibly vulvodynia and interstitial cystitis.

Many patients have endured years of suffering with confusing diagnoses. They come to us either because they are finally told they have adhesions, or after doing their own research, suspect that adhesions may be the cause of their problems.

What are Adhesions?

Adhesions are made up of scar tissue. Think of a scar as a patch repairing a punctured bike tire. The patch, or scar certainly does the job, but the tire is never the same again. Imagine being so careless with the glue that the tire is now stuck to the bike frame. This is an adhesion, an internal scar that connects organs or tissues that should not normally be connected.

Most internal organs are covered with a “non-stick” coating, but when this is damaged, organs close to one another will stick and knit together by means of reparative scar tissue.

MRI, CT or ultrasound detect adhesions only in limited circumstances.

The only way to see adhesions is by direct surgical observation. There is no blood test for adhesions.

What Causes Adhesions?

Almost any kind of trauma can induce adhesions, the most common of which is surgery. Organs can be damaged by being handled by a surgeon or surgical instruments, or by drying out in the air of an operating room or the gases used in laparoscopy. Non-surgical injuries including knife or gunshot wounds can also lead to adhesions. Endometriosis, infection (e.g. from a burst appendix), high doses of radiation, peritoneal chemotherapy or surgical sponges left behind can also cause the kind of damage leading to adhesions. Too many, too large and too tightly placed sutures cause adhesions as do many meshes used for hernia repair or organ prolapse (e.g. transvaginal or pelvic meshes).

What Problems do Adhesions Cause?

Imagine one end of your garden hose sticking to the other and you can easily see why adhesions around the intestine can cause it to twist or kink and obstruct. Infertility will result when the same thing happens to the fallopian tubes, the channels through which eggs travel from the ovary to the uterus. Sometimes they can cover the end of the fallopian tubes and prevent eggs from entering in the first place.

Adhesions make operating more dangerous and lengthy, increasing the chances of bleeding and damage to tissues. Adhesions from a prior cesarean section, will cost the newborn baby precious seconds in an emergency c-section.

Adhesions and Adhesions Related Disorder (ARD) and CAPPS

Adhesions patients with severe, long-standing disease develop what we call Adhesions Related Disorder (ARD): chronic abdominal or pelvic pain, recurrent bowel obstruction and sometimes malnutrition. With many doctors unable to provide a diagnosis, or unwilling to tackle adhesions, psychosocial issues abound from unemployment, poor insurance coverage, lack of disability benefits and alienation by friends and family who only see a malingering, drug seeker. ARD patients with bladder, pelvic, bowel, genital or sacroiliac joint pain become practically indistinguishable from those with similar constellations of symptoms arising from initial diagnoses of IC, IBS, endometriosis, etc. We call this CAPPS: Complex Abdomino-Pelvic and Pain Syndrome.

How Common are Adhesions?

Over 90% of patients having any kind of surgery may form adhesions and problems, many occur only decades later. Who develops adhesion-related problems and why is not fully understood.

The over 400,000 annual adhesion-related hospitalizations in the USA rival those for heart, hip and appendix operations with annual direct costs to the health system over $5 billion. Fully 35% of women having open gynecologic surgery will be readmitted 1.9 times in 10 years for secondary operations due to adhesions, or complicated by adhesions (Ellis et al., 1999; Lower et al., 2000). There are similar risks in laparoscopy (Lower et al., 2004) and in men also, but for a variety of reasons the problems appear to impact women more devastatingly from an economic and social perspective.

Over 2000 people die every year from intestinal obstruction due to adhesions.

Do Adhesions Cause Pain?

While patients suffering with adhesions are quite clear about whether they cause pain, within the medical community there is great debate. Much of the debate stems from a flawed study and the recognition that surgical removal (adhesiolysis) of the adhesions doesn’t always work. The lack of effective or complete pain relief after adhesion removal has led some to suggest that adhesions do not cause pain. For a full discussion about the problems with adhesion research click here. Additional considerations confusing the relationship between pain and adhesions include:

  • Adhesions can form again after surgery, so pain may return.
  • Adhesion removal may not correct scarring below the surface of affected organs or tissues. Scarring can entrap and tether nerves, preventing them sliding around in tissue as they need to during normal movement. When nerves are stretched because they are tethered, pain often results.
  • Not all adhesions cause pain. Patients may have pain, and they may also have adhesions. One may not be the cause of the other, but may be the product of the same cause.
  • Adhesions pain, may be “referred” – sometimes the pain is felt in other locations and not where the adhesions are.
  • Chronic pain is different from acute pain. The mechanisms of chronic pain are not well understood but once pain has persisted, the system goes on auto-pilot and the biochemical and nerve changes induced by long-term pain become very difficult to undo with surgery. Furthermore, because of the interconnections between the nerves in the pelvic area, where many adhesions develop, pain or disturbances in function in one organ may “spread” to other organs.
  • Bowel pain, a common symptom of adhesions patients is difficult to diagnose. In some cases, it is related to constipation from chronic opioid use. In other cases, it can be related to an adhesion caused bowel obstruction. (Bowel obstruction caused by adhesions or anything else, is an emergency often treated with surgery. If you have a history of obstruction you should identify a general surgeon to work with and plan as much as possible for these sorts of events).
  • Long term use of opioids increases the sensitivity to pain which makes slight pain feel more painful and requires more medication to alleviate. It’s a vicious cycle that is very difficult to break.

What to do about Adhesions?

Prevention is the best treatment. If the only reason for surgery is pain, whether it is adhesiolysis (cutting of adhesions), hysterectomy or placement of an electrical neurostimulator (e.g. INTERSTIM®), be sure to exhaust all non-invasive options first and be aware that there are problems with each option.

  • Adhesiolysis (surgery) has helped some patients but there is the risk of no effect or recurrence.
  • Hysterectomy, in addition to incurring some long term health risks is likely to exacerbate the problems. Although it has helped some patients with pelvic pain, evidence concerning its efficacy, is minimal (Andrews et al. 2012). See here, here and here to learn more about the long-term consequences of hysterectomy.
  • Neurostimulators carry their own number of risks and may preclude you from using non-invasive treatments like therapeutic ultrasound.

There are no easy answers and there is no magic wand. We advocate a multidisciplinary approach. Start with a gynecologist, urologist or urogynecologist that specializes in pelvic pain and who works closely with a general surgeon and a physical therapist specializing in pelvic pain/pelvic floor dysfunction and visceral manipulation (e.g. the Barral method). The team should also include a pain management doctor, psychologist, gastroenterologist, and a dietician/nutritionist. Pain or other difficulty with intimacy is common – do not be ashamed of talking about this, preferably with someone who specializes in sexual medicine.

Many patients have been able to achieve some relief and avoid surgery with pelvic floor physical therapy and/or visceral manipulation, careful control of diet, well placed and timed nerve blocks (e.g. pudendal nerve) and judicious use of opioids. We have found that a wearable therapeutic ultrasound device has brought relief to patients suffering with adhesions and other painful pelvic, bladder and genital symptoms (Wiseman and Petree, 2012).

If Surgery is the Only Option

If you must resort to surgery, insist that the surgeon uses powderless gloves and humidifies and warms the laparoscopy gases using a device called INSUFLOW®. Insist that an adhesion barrier be used where possible. Think of an adhesion barrier is a degradable type of “internal Band-Aid” that is placed over organs at risk of forming adhesions. Once the tissue has healed, the barrier dissolves because it is no longer needed. Adhesion barriers are not 100% effective and cannot be used in all situations. There are three approved in the USA – INTERCEED® Absorbable Adhesion Barrier, Seprafilm® Adhesion Barrier, and ADEPT® Adhesion Reduction Solution, the last of which appears to have limited utility. Other materials are used “off-label” which you can read about here.

Whether your adhesions are the cause of the pain, the consequence of pain or just happen to be there, you are still in pain and you are suffering. Educate yourself and those close to you about adhesions. The International Adhesions Society and the International Society for Complex Abdomino-Pelvic & Pain Society (ISCAPPS) provide the most up-to-date information on these conditions. We’ve also found these books to be useful:

Stay active as much as possible. Walk, garden, and exercise lightly. Stop smoking. Watch old funny movies. As difficult as it may be, it is important that you maintain a circle of family and friends, through a religious community or other group.

Above all, remember you are not alone and this is not in your head.

The information provided here is not intended nor is implied to be a substitute for professional medical advice. Always seek the advice of your physician or other qualified health provider prior to starting any new treatment or with any questions you may have regarding a medical condition.

References

Andrews J et al: Noncyclic Chronic Pelvic Pain Therapies for Women: Comparative Effectiveness. AHRQ Comparative Effectiveness Reviews 41. 2012 Jan; 11(12):EHC088-EF. http://www.ncbi.nlm.nih.gov/pubmed/22439157

Ellis H et al. Adhesion-related hospital readmissions after abdominal and pelvic surgery: a retrospective cohort study Lancet 1999; 353:1476. http://www.ncbi.nlm.nih.gov/pubmed/10232313

Lower AM et al. The impact of adhesions on hospital readmissions over ten years after 8849 open gynaecological operations: an assessment from the Surgical and Clinical Adhesions Research Study. Br J Ob Gyn. 2000; 107:855. http://www.ncbi.nlm.nih.gov/pubmed/10901556

Lower AM et al. Adhesion-related readmissions following gynaecological laparoscopy or laparotomy in Scotland: an epidemiological study of 24 046 patients. Hum Reprod. 2004; 19:1877 http://www.ncbi.nlm.nih.gov/pubmed/15178659

Wiseman, D. M. Disorders of adhesions or adhesion-related disorder: monolithic entities or part of something bigger–CAPPS? Semin Reprod Med. 2008; 26:356. http://adhesions.org/Wiseman2008SeminreprodMed26p356CAPPS.pdf

Wiseman, DM and Petree, T. Reduction of chronic abdominal and pelvic pain, urological and GI symptoms using a wearable device delivering low frequency ultrasound. International Pelvic Pain Society; Chicago, IL. 2012. http://www.kevmed.com/resources/Wiseman2012-IPPSMeetingChicagoPainShieldCPP-Thumb.png

 

This post was published previously July 2013. 

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Uterus Interrupted: Endometriosis is not in my Head

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Katelyn Luciani

It was actually in my uterus, on the cul de sac, on my right lower ligaments, on my appendix, on my bowel stretching across to the right side of my rib cage as well as in the muscle lining of my uterus (adenomyosis). No, endometriosis was most definitely not in my head as so many doctors proclaimed.

As long as I can remember I’ve been living with pain, and it all started back when I was 11 years old when I had my first menstrual cycle. I would get so sick with vomiting and cramping, and be in so much pain I wouldn’t be able to leave my bed or the washroom for the first two days of my period. I never understood why my friends wouldn’t get as sick as me. This was the first time I felt isolated. Every month I would miss at least two days of school–I’d miss out on birthdays, holidays, special occasions (I still do).

My mom used to console me and tell me that she used to have the exact same thing when she was young. When I would go to my doctor she would tell me that this is “normal, everyone woman goes through this” and “it’s nothing a little advil can’t help.”

I have endometriosis. Actually, I have endometriois and adenomyosis, chronic back and pelvic pain, vulvodynia, pelvic floor dsyfunction and I also suffer from depression and anxiety.

It wasn’t until I started becoming sexually active that I also noticed something else seemed off. Sex wasn’t fun… it sucked actually. It was painful and it felt like I was being stabbed. I would be nauseous afterwards and always have horrible back pain and cramping for days.

At this point, I was living in Vancouver. I went to a doctor out there and told him what was happening. His initial reaction was “cervical cancer” and after that was ruled out, he threw the word “endometriosis” at me. This was the first I time ever heard about “endometriosis” but I didn’t think much of it since he insisted it wasn’t a big deal and that the Mirena IUD would be my lifesaver. Well it wasn’t! Insertion was horribly painful and I cramped and bled for about two years straight. I have never felt the same since!

Finally, I was told that my body was rejecting it and had an emergency removal. I was told to just stay off of any type of birth control for a bit and see what happens, since I had been on continuous birth control from the age of 14. I was 25 at this point.

I started experiencing multiple ruptured cysts resulting in over three hospital stays in the course of four months, and I was told this time that surgery was the answer. I was trying to pursue my dreams in Vancouver, where the surgery was performed. The outcome was that he couldn’t find anything: in his words “ I had a beautiful looking uterus and everything looked fine.” I was in SEVERE pain yet there were NO answers! The pain just got worse and worse to the point where I could not work any longer. I was forced to give up my dreams and move back home to my parents’ house in Ontario and wait patiently for my turn to get into one of the best pain clinics in Toronto. Waiting patiently… my Endo-warriors know exactly how that feels.

In the meantime, my gyno referred me to a pelvic physiotherapist who I would see weekly to help with my vaginal spasms as well as internal manipulation to aid in my pelvic floor dysfunction. I was excited knowing that I would have some of the best doctors working on my case. Finally, some answers and some help! It was many months before I was admitted, where in an effort to end my pain I would try anything they suggested.

Blind nerve block injections were suggested as a treatment to numb my pelvic pain. Two to four needles were inserted into my pelvis on two different occasions. This was another let down. I now suffer from chronic pain in that area and constant hip locking as a result of these injections.

Yet another specialist suggested hormonal therapy (Visanne). The side effects from this resulted in a brief breast cancer scare (which did wonders for my anxiety). I now have permanent agonizing cysts in my breasts (fibrocystic breasts) and have an even deeper hatred for my own body.

It was right around this time that I hit an all time low. I was completely discouraged and hesitant to try any other kind of hormonal treatment that was being offered to me for fear of the side effects to my body. I was tired of being a guinea pig, and I felt very alone. I was so tired of hearing that it was “all in my head” and that maybe “I just needed to take some anti-depressants.”

It was right around this time last year that I reached out and found this amazing support group! And after having met other people who had such similar stories to mine, I started to see things in a different light. Maybe I wasn’t crazy? It was so comforting to know that I was not alone in my pain. I started hearing from more and more people who said it was very common to have a number of surgeries before endometriosis was found, and that sometimes the surgeons aren’t necessarily trained to spot endo in all of its forms. I went to the Endometriosis Symposium last year hosted by The Endometriosis Network Canada and educated myself even more. I left feeling empowered. There WAS something I could do…

With the encouragement and financial support of my parents, as well as some generous donations from friends through an online campaign, I finally sent all my health records to a world-renowned endometriosis specialist in Atlanta, Georgia. For two years I had been bouncing back and forth from doctor to doctor who all kept referring to that original surgery, saying that it obviously could not be endometriosis because none had been found. Well, a week after sending my records in, this endometriosis specialist called and after reviewing my past surgery report from Vancouver he confirmed that I most likely had endometriosis and that it was possible that he could improve my quality of life by 85%.

So, I took the trip out to Atlanta. During the surgery he found endometriosis in my cul de sac, on my right lower ligaments, on my appendix, on my bowel stretching across to the right side of my rib cage as well as in the muscle lining of my uterus (adenomyosis). He removed all the lesions as well as my appendix and he performed a presacral neurectomy, which involves snipping the main nerve to your uterus/bladder/bowel area. This is said to work for 75% of patients who no longer feel pain in that area. I, unfortunately, was not one of the lucky 75% of patients this works for. I was told to give my recovery at least six months. I was devastated when there was barely any improvement. Since the PSN didn’t work for me because of my adenomyosis, I will most likely need a hysterectomy in order to get the pain relief I was hoping for, which I am not ready for at the age of only 28.  How bittersweet…I finally had an ANSWER, but still NO pain relief!

After constantly getting knocked down by this disease, I am standing up yet again. I am still in pain… I still fight to get through the days, today included. I want my voice to be heard. I am NOT crazy. The symptoms are NOT all in my HEAD. They are actually in my UTERUS!

In the spirit of The Endometriosis Network Canada’s #awishnoted campaign I’d like to share my three wishes.

I wish for more pain free days that I can spend laughing and making memories with my loving boyfriend, and with my incredibly supportive family that I am blessed to have (that includes my endo family too) and with my friends who thanks to this disease I don’t get to see as often anymore.

My second wish is for more funding for endometriosis research right here in Canada.

And last but definitely not least, I wish for the next generation to be educated about endometriosis in health classes at school. Knowledge is power, and together our voices will be heard!

To read more about my journey with endometriosis and adenomyosis, follow my blog at http://uterusinterrupted.blogspot.ca/.

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Pain After Endometriosis Excision Surgery

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Philippa Bridge-Cook

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.

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