Sari Botton contacted me on Saturday and generously sent me this article. She thought I would be interested in reading it since she struggled with adenomyosis. This wonderful piece was published in the New York Times on Friday, October 28, and it is an honest and heartfelt article on her ambivalent feelings on motherhood and her struggle through infertility and adenomyosis. Thank you so much, Sari, for sharing the details of your difficult journey…I know it will help so many women out there who are struggling with the same issues. The link to her article in the NY times is below – read it…you’ll be glad you did!
Tag Archive | severe uterine cramping
Emotional Aspects of Adenomyosis and Endometriosis
Today I would like to address some common misconceptions about adenomyosis/endometriosis and how these misconceptions dramatically impact the emotional/mental well-being of its victims. I have heard and read so many comments – ignorant comments – by those who don’t have the disorder that dramatically add to the depression and anxiety that these women have to endure. Here are some examples:
- You need to go to a psychologist. You just need an antidepressant.
- They’re just bad cramps. All women go through it. Why can’t you?
- You’re just being a baby about it. You’re weak.
- It’s all in your head.
- Just get more exercise. Go to the gym and it will all get better.
- Your diet is to blame. If you ate better, you would feel better.
- It’s all stress related. You just need to relax.
OK, so let’s address these comments one by one.
- Adenomyosis is not a psychological problem. Anyone who tells you that it is doesn’t know what they are talking about. Years ago, this belief was prevalent, but today we know that adenomyosis and endometriosis are NOT normal, and these disorders can be pathologically proven. Endometrial implants have actually been visualized in multiple places outside of the uterus in the case of endometriosis, and adenomyosis can be visualized as invading the uterine muscle. These disorders can be seen and are real!
- Adenomyosis and endometriosis are not just “bad cramps”. These disorders also cause very heavy menstrual bleeding with large clots, bowel and bladder issues, prolonged menstrual bleeding (many times up to 14 days), anemia, and infertility.
- There is absolutely nothing “weak” about dealing with adenomyosis and endometriosis. This comment many times is made by men, and they have absolutely no idea what it is like to live with an “angry” uterus. Until the day that a man is born with a uterus, the following comment by Rachel from the TV show Friends stands – “no uterus, no comment!”
- Adenomyosis is not in your head. Refer to #1.
- Adenomyosis involves endometrial tissue growing into the uterine muscle. Endometriosis involves endometrial tissue migrating outside of the uterus. No amount of exercise will change this process. This misplaced endometrial tissue will not magically return to its proper location just because you exercised for an hour. Don’t get me wrong – exercise is always a good thing. But exercise will not cure these conditions. In addition, during the height of an adenomyosis or endometriosis attack, women do not feel well enough to exercise. It is very easy to say “just exercise” when the person saying it doesn’t deal with either of these disorders.
- Now, this one has a bit of truth to it. Diet has been shown to reduce symptoms in some cases. However, diet is not a cure. Again, nothing dietary has been shown to definitely change the course of either disorder. Even so, there are some changes that can be made that seem to help some of the symptoms. Refer to my page, http://www.adenofighters.com, for more information.
- Again, relaxing may help reduce some of the symptoms, but it is not a cure. These endometrial implants will not just disappear just because a woman “relaxes”.
It is so important to understand that both adenomyosis and endometriosis are pathological processes, and the cause is currently unknown as is any cure. People who are around women who suffer from these disorders need to be acutely aware of this. Please don’t make these kinds of comments as they seriously impact their emotional and mental health. It is hard enough to deal with these disorders on a daily basis – the last thing they need is someone who doesn’t deal with adenomyosis/endometriosis to tell them how to “cure” themselves. There is no known cure at the current time except for hysterectomy in the case of adenomyosis. A hysterectomy will not cure endometriosis.
Learning to do some of the following relaxation techniques may help you to deal more effectively with the stress that comes along with having to deal with adenomyosis. I have added my own comments about which techniques worked for me during the time I was suffering from this disorder. Some of the techniques work better than others for different people, so just try them out and see which ones work best for you.
2. Visualization – when I was overly stressed, I would shut my eyes, focus on relaxing and picture myself on a beautiful white sandy beach, and the ocean was clear blue. I would listen to the sounds of the waves crashing on the shore, feel the breeze on my face, and feel the sun beat down on me. I was the only one there, so no other sounds were heard except for the waves and an occasional sea gull calling. This was very effective in calming me down. You can picture any setting – just think about whatever place you would want to be at that particular moment.
3. Deep breathing – I used this technique when I was in the middle of an attack. I would concentrate completely on taking deep breaths, and I think this actually kept me from passing out! But it also helps tremendously in calming yourself down.
4. Chamomile tea – in addition to the presence of phytoestrogens, chamomile has been shown to be a great relaxant herb.
5. Observe your surroundings – on nice sunny days, I make it a point to go outside and just look. Look at the trees, flowers, birds in the air. The world is a beautiful place if you take the time to just look.
6. Social interaction and physical contact – spending time with others is a wonderful way to raise your spirits. Physical contact doesn’t even have to be with another person – just petting your dog or cat has been shown to reduce stress levels.
7. Classical music – research has shown that listening to 30 minutes of classical music has the relaxation effect of 10 mg. Valium.
8. Think positive – a great idea that came from my counselor is a gratitude journal. Think of 5 things that you are thankful for everyday and write them down in a journal every morning. A great way to start your day!
9. Progressive muscle relaxation – I do this in bed at night as I’m falling asleep. Focus on one muscle group at a time. Tighten that muscle and then relax. Move on to the next muscle group. The thing that shocked me about this technique is that it made me very aware of how tense I was without realizing it. My shoulders and face muscles were already tight – I just had to focus on relaxing them!
10. Yoga/tai chi – yoga is a well known technique used to reduce stress and anxiety. It improves overall fitness and health, lowers blood pressure and improves heart function. Tai Chi is also know as “meditation in motion”. In addition to its ability to reduce stress and anxiety, it has been shown to help with many different medical problems such as heart issues and arthritis.
11. Acupuncture – this technique has been shown to reduce pain and nausea. It may be a useful tool for those who do not want to rely on pain medications for pain relief.
12. Soak in a warm tub
13. Use a heating pad on your abdomen
Tens, or trascutaneous electrical nerve stimulation, is a technique used to treat chronic pain by using electrical impulses to stimulate nerves. Although studies on its effectiveness are conflicting, it is generally accepted as a somewhat effective way to treat chronic pain.
TENS is often confused with EMS. EMS, or electrical muscle stimulation, stimulates nerves whereas TENS actually blocks nerve pain signals.
TENS has been shown to help all kinds of chronic pain, but most importantly for purposes of this website, it has been shown to help with dysmenorrhea (painful periods).
When using a TENS unit, make sure to read all directions and warnings. Skin irritation can possibly result from use. Also, its use is contraindicated if you are pregnant or if you have a pacemaker.
Helpful Diet Tips
During my struggle with adenomyosis and through my research, I have found that the following foods and supplements may improve symptoms of adenomyosis and estrogen dominance. This information may be particularly useful to those who do not want to undergo a hysterectomy.
Would you like to comment on your own experiences regarding diet and adenomyosis? See “My Blog” and tell your story!
1. Fiber – helps to rid the body of excess estrogen. Good sources include beans, nuts, seeds, oatmeal, and fresh vegetables.
2. Omega-3 fatty acids – an anti-inflammatory nutrient that has also been shown to balance hormone levels. Sources include anchovies, mackerel, wild salmon, herring, sardines, tuna, walnuts, chia seeds, and flaxseed.
3. Organic foods – because of the way they are grown, these foods contain less xenoestrogens.
4. Cruciferous vegetables – contain a substance called diindolylmethane that has been shown to help the body rid itself of excess estrogen. Sources include broccoli and cauliflower.
5. Phytoestrogens – weaker estrogens than that found in the human body and they compete for estrogen receptor sites. Good sources include flaxseed, sesame seeds, pistachios, sunflower seeds, almonds, beans, soy, multi grain bread, rye, and barley. Sunflower seeds also have a high vitamin E content which has aromatase inhibiting action. See “Treatments” for more information on aromatase inhibitors.
6. B vitamins – help to balance hormone levels. Sources include tuna, salmon, turkey, chicken, beans, potatoes, milk, bananas, and eggs.
7. Foods high in magnesium and zinc – these nutrients help to increase progesterone production. Sources include bran, dark chocolate, pumpkin, squash, edamame, molasses, roast beef, oysters,crab, and lamb.
8. Foods high in sulfur – help to detoxify the liver by binding to estrogen and eliminating it through the GI system. Good sources include onions, garlic, lemons, and leafy green vegetables such as kale, spinach, and swiss chard. Kale chips can be made at home by adding some olive oil and salt and baking it in the oven. Alternatively, I found some wonderful kale chips at Trader Joes. They are a nice alternative to regular potato chips.
9. Vitamin E – low levels of this vitamin are associated with high estrogen in the body.
10. White mushrooms – these have been shown to have some natural aromatase inhibiting action. Since aromatase synthesizes estrogen, eating food with aromatase inhibiting action helps to lower estrogen levels and may possibly help to reduce adenomyosis symptoms. See “Hormonal Imbalance?” and “Treatments” for more information.
11. Citrus fruits – contain d-limonene which helps in the detoxification of estrogen in the liver. Examples include oranges, tangerines, lemons and grapefruit.
12. Seaweed – an effective xenoestrogen detoxifier. Examples include dulce, kelp and nori.
13. Brazil nuts – contain high levels of selenium which is known to have aromatase inhibiting action. See “Hormonal Imbalance?” and “Treatments” for more information.
Herbs high in phytoestrogens and other useful supplements
Phytoestrogens are weaker estrogens and therefore may have a beneficial effect for those suffering from estrogen dominance. Please refer to “Different Types of Estrogen” for a full explanation. This subject is often misunderstood by the general public. Although research is pointing to the overall benefits of phytoestrogens in women’s health, there are conflicting studies. It is strongly recommended to talk to your physician before using the following herbs, especially if you have a family history of estrogen sensitive tumors (breast, uterine, ovarian).
This section has been updated as of May 5, 2016. I have done extensive research on phytoestrogens in preparation for writing my second book, and some of the previously advised herbs have been taken off this list. This list may be updated again as I learn more about phytoestrogens. I recently talked to another adeno sister who brought up an excellent point. Phytoestrogens are weaker estrogens, and in theory, if you increase your phytoestrogen intake, they will occupy the estrogen receptor sites in the body and will prevent the dangerous xenoestrogens from doing so. That sounds great, but it is also necessary to have a liver that is functioning optimally so that it can break down these dangerous xenoestrogens and get rid of them. Just as an example, let’s say a woman with adeno increases her phytoestrogen intake but still eats a lot of processed or junk food. Her liver may be sluggish, so the potent xenoestrogens are still in her body – the liver is not able to break them down efficiently, and they are not eliminated from the body. Eventually the phytoestrogens will disconnect from the estrogen receptor sites, and since the xenoestrogens are still in her body, these dangerous chemicals will then attach to the receptor cells. This, in theory, could lead to a very dangerous estrogen dominant condition. Again, this is just a theory. This topic is very complicated, and we are learning new things every day. I urge you to do your own research and talk to an expert before using phytoestrogens. I do believe they COULD help if, and only if, you change your diet and lifestyle as well.
For a more detailed discussion of phytoestrogens and herbs, please read my book, Adenomyosis: A Significantly Neglected and Misunderstood Uterine Disorder.
1. Milk Thistle – This amazing herb has been known for thousands of years to protect and nourish the liver. Silymarin is the active constituent of the plant, and this substance protects the liver from damage by toxins several ways. First of all, it is a strong antioxidant, and it has been shown to be more effective than both vitamin C and vitamin E. It also helps to prevent the depletion of glutathione which is needed for the proper functioning of the liver. Silymarin has been repeatedly shown to be beneficial in treating cirrhosis and hepatitis. Since estrogen is processed in the liver, it is vital to keep the liver healthy, so the addition of this herb to the diet of adenomyosis sufferers is an excellent idea!
2. Damiana – Known for its aphrodisiac properties, this herb may help with anxiety, depression, hot flashes, and night sweats. It may inhibit aromatase which is needed to convert androgens to estrogen. A 1998 study found that this herb had anti-estrogenic activity, and, according to Zava et al. (1998), this herb is one of the six highest progesterone-binding herbs. It has also been noted that this herb may contain compounds similar to progesterone. Damiana may interact with other herbs and supplements that alter progesterone levels.
3. Dandelion – Believe it or not, this little yellow weed is an invaluable herb. Dandelion, also known as “pee in the bed”, is a powerful diuretic which could be invaluable if you suffer from severe bloating due to adenomyosis. An additional benefit is this herb will reduce bloating without causing the body to lose large quantities of potassium, an unwanted side effect of diuretic drugs such as Lasix. According to Zhi et al. (2007), this herb may be useful “for the clinical treatment of reproductive hormone-related disturbances” (Abstract).
4. Royal Jelly – This nutritious supplement is made from bees. The major constituent is water (67%), but it also contains many nutrients such as protein, sugars, fatty acids, minerals, enzymes, vitamin B5, vitamin B6, and a little bit of vitamin C. It has been used for PMS, insomnia, menopause, and liver disease, and it has been reported to decrease inflammation and nourish the endocrine system. According to Hiroyuki et al (2012), this supplement appears to increase testosterone levels in men and also appears to have no effect on the conversion of aromatase in humans. Caffeic acid phenethyl ester (CAPE) is a substance that is found in bee propolis. Jung et al. studied CAPE in 2010 and found that it had binding affinity to ERβ. Also, CAPE did not increase the growth of MCF-7 estrogen receptor-positive breast cancer cells, and it did not increase the uterine weight.
5. Dong Quai – Zava et al. (1998) report that this herb did not inhibit the production of alkaline phosphatase, which means it does not block the activity of progesterone. In addition, this group notes that this herb has very little estrogenic activity. This herb may actually suppress estradiol synthesis since saliva levels in women who take this herb are very low.
6. Grape Seed Extract – Discovered in 1951 by the French scientist Dr. Jacques Masquelier, this amazing supplement has been shown to be a potent aromatase inhibitor. The ability of this supplement to inhibit aromatase may be very beneficial to women who suffer from estrogen dominance. In a study by Kijma, Phung, Hur, Kwok, and Chen (2006), grape seed extract was shown to possibly be a useful treatment in cases of hormone-dependent breast cancer. Grape leaves, especially the leaves of the red grape, have been shown to have astringent qualities, and this might be beneficial in treating heavy menstrual bleeding. In addition, the proanthocyanidins in grape seed extract are powerful antioxidants which can help keep the liver healthy. Although the data is insufficient, grape seed extract may also help in cases of premenstrual syndrome.
7. Melatonin – This hormone is produced in the pineal gland and is important in modulating our circadian rhythms. It is also a free radical scavenger, helps with the proper functioning of the immune system, and plays an important role in the regulation of sex hormones. Recent studies have shown this hormone may reduce binding to estrogen receptors while it increases binding to progesterone receptors. A study by Rato et al. (1999) showed melatonin interfered with the activation of an estrogen receptor by estradiol. Abd-Allah, El-Sayed, Abdel-Wahab, and Hamada (2003) showed a 59 percent reduction of estrogen receptors in rats that were treated with melatonin. In addition, this same group showed an increase in progesterone receptors of 53 percent in these same rats.
8. N-acetyl cysteine (NAC) – NAC is an excellent antioxidant and chelator of heavy metals. It is an excellent supplement as it aids in optimum liver function. It is derived from the amino acid cysteine and contains a good amount of sulfur.
9. Oregano – According to Zava et al. (1998), oregano is one of the six highest progesterone binding herbs. In addition, the volatile oils in oregano help to detoxify the liver.
10. Quercetin – Quercetin is a plant flavonoid and a strong aromatase inhibitor. A study done by van der Woude et al. (2005) showed that quercetin exerts phytoestrogen-like activity. The group states “the results point at the relatively high capacity of quercetin to stimulate supposed ‘beneficial’ [estrogen receptor] beta responses as compared to the stimulation of [estrogen receptor] alpha, the receptor possibly involved in adverse cell proliferative effects” (Abstract). Quercetin is found in red wine, green tea, onions, berries, and apples. It works best when taken with Vitamin C.
11. Rosemary – According to the Cleveland Clinic (2016), rosemary may lower estrogen levels. This herb is also anti-inflammatory, and its volatile oils aid in liver detoxification.
12. SAMe – Also known as s-adenosyl methionine, this substance is made in the body as a result of a reaction between methionine and ATP. Methionine must be supplied through the diet as it cannot be made by the body. SAMe is an excellent source of sulfur and helps to convert estradiol (E2) into the less harmful estriol (E3). SAMe has been used for PMS and premenstrual dysphoric disorder (PMDD), a more severe form of PMS. It has also been used to help with depression and may even be useful in liver disease. SAMe is an anti-inflammatory and used to relieve pain. An interesting study by Frezza, Tritapepe, Pozzato, and Di Padova (1988) looked at the use of SAMe in women who had a past history of liver disease called intrahepatic cholestasis of pregnancy (ICP). These women have an increased sensitivity to estrogen. They concluded “The data support the belief that SAMe acts as a physiological antidote against estrogen hepatobiliary toxicity in susceptible women” (Abstract).
14. Black cohosh – A member of the buttercup family, this wonderful herb has been used extensively by the North American Indians. It has a long history of use for premenstrual syndrome and menstrual cramping, and it may also be helpful with menopause symptoms such as irritability, hot flashes, and vaginal dryness.
15. Chasteberry – also known as Vitex, this herb is frequently advised for women who suffer from PMS. Chasteberry influences the pituitary to produce more lutenizing hormone (LH) which in turn signals the ovaries to produce more progesterone. So, this herb is especially valuable in women who are suffering from estrogen dominance.
9. Resveratrol – this wonderful supplement has numerous health benefits, one being an aromatase inhibitor. Since aromatase synthesizes estrogen, eating food with aromatase inhibiting action helps to lower estrogen levels and may possibly help to reduce adenomyosis symptoms. See “Hormonal Imbalance?” and “Treatments” for more information. Resveratrol can be taken as a supplement (usually extracted from the Japanese knotwood plant) or can be consumed by eating the following foods: red grapes, red wine, peanuts, or cocoa.
10. Good Quality Probiotic – this will support the gastrointestinal tract which will ensure proper elimination of estrogen from the body.
Try to avoid the following foods:
Excess saturated fats
Xenoestrogens are synthetic (man made) estrogens that mimic the effects of estrogen found in the human body. They disrupt hormonal activity and can be extremely dangerous. These xenoestrogens can lead to the condition of estrogen dominance in which there is “unopposed” estrogen present in a woman’s body (see “Hormonal Imbalance?”). This condition has been linked to adenomyosis.
Some examples of xenoestrogens include:
PCBs – banned from use in 1979
PBBs – can be found in plastics
Pthalates – provides durability and flexibility to plastics
Petrochemicals – byproducts of oil and gasoline
Organochlorides – dry cleaning products, chemicals used in the bleaching of paper
BPAs – used in the lining of food and beverage cans
DDT – pesticide banned from use in 1972; however still present in environment
Dioxins – released during pesticide manufacturing and combustion processes
Endosulfans – insecticide
Atrazines – herbicide
Bisphenol A – food preservative
Parabens – lotions
Ethinyl estradiol – component of birth control pills
In women with known or suspected adenomyosis, it is strongly suggested that exposure to these chemicals be reduced as much as possible. Although it is impossible to completely get away from these chemicals, a few things can be done to reduce exposure such as:
1. Do not store or heat your food in plastic containers. Use glass whenever possible for food storage and heating. Avoid drinking from plastic water bottles. To drive this point home, let me tell you a true story. I have worked in a medical lab for about 22 years as a lab technologist. At the beginning of my career, I ran the acetylcholinesterase test. Acetylcholinesterase is a very important enzyme in the body that plays a key role in the functioning of the nervous system. The test that I ran was used to pick up possible neural tube defects in unborn children (spina bifida and anencephaly). Sometimes the test worked fine, but at other times it did not. After trying to figure out the problem and getting quite frustrated, we were finally able to identify the problem. When we mixed the reagents in a plastic container, the acetylcholinesterase band did not show up on the gel and therefore the test failed; however, when we mixed the reagents in a glass container, the test worked just fine. So, something in the plastic container was reacting with the acetylcholinesterase! Kinda scary to think that a chemical in plastic can react with such an important enzyme vital to the nervous system!
2. Buy fresh and organic food whenever possible. Avoid as much processed food as you can.
3. Buy hormone free meats.
4. Avoid farm raised salmon because this can be a source of PCBs. Buy wild salmon instead.
5. Use natural/organic lotions or even make your own homemade lotions. Avoid lotions that contain parabens. Try to use makeup that is paraben and phthalate-free.
6. Use natural pesticides. I use a 50/50 mix of vinegar and dishwashing detergent, and it works beautifully!!
7. Try to stay away from birth control pills. This one is a hard one, though, since birth control pills do give some relief for patients with adenomyosis. Just keep this in mind as you go through your treatment. I did have to take birth control pills to control my symptoms during my 17 year struggle. You may benefit from taking other steps first before resorting to taking bcps.
8. If you are considering hormone replacement therapy (HRT) for menopausal symptoms, try using bioidentical hormones.
9. Invest in a good quality water filter.
Types of Estrogen
It is important to understand the different types of estrogen that we are exposed to on a daily basis. There are basically three types – xenoestrogens (man-made/synthetic), human estrogen (that our own body produces) and phytoestrogens (estrogen like substances found in plants).
These estrogens are powerful and very dangerous. They can increase the estrogen levels in the human body leading to the condition “estrogen dominance”. Steps should be taken to avoid these substances although complete avoidance is impossible because they are in the environment. They can be found in products such as plastics, gasoline and pesticides. I have devoted a whole page to this subject – please check out that page for more information.
Human (endogenous) estrogen
This is the natural estrogen produced by the ovaries. The levels in the body are regulated by the pituitary gland through the action of lutenizing hormone (LH) and follicle stimulating hormone (FSH).
These are weaker estrogen like substances that are found in plants. Please see “Helpful Diet Tips” for a list of foods that contain these substances. Phytoestrogens actually help to reduce the level of estrogen in the human body, and many studies have shown a link between these substances and a lower cancer risk for estrogen dependent tumors
So What Does This Mean?
Here is a very simplified explanation. Remember that this is basic – many more hormones are involved in the proper functioning of the reproductive tract!
Adenomyosis has been shown to be estrogen dependent meaning that it needs estrogen to grow. The body has a certain number of estrogen receptor sites and constantly “fills” these sites. If they are “filled” with too many xenoestrogens, the resulting condition is estrogen dominance. Too much estrogen can lead to adenomyosis or estrogen dependent tumors. If the sites are “filled” with a lot of phytoestrogens, the estrogen levels are lower. Not enough estrogen, adenomyosis can’t survive or at least won’t progress as fast.
There is no such thing as an absolute in medicine…..
Although many studies show that the phytoestrogens in flaxseed to be beneficial, a study done at the University of Pittsburgh has shown that the phytoestrogens in flaxseed oil actually stimulate the growth of breast cancer cells. Please keep in mind that studies on any disease/disorder can have conflicting results. Based on my research, I have found many more studies showing the benefits of phytoestrogens in reducing cancer risk. However, if you have a family history of estrogen dependent cancers (uterine, breast, ovarian), please keep this in mind and talk to your doctor before supplementing your diet with flaxseed oil.
In doing research for my book, I was particularly interested in the fact that adenomyosis had been linked to a condition called estrogen dominance. This term has been coined by Dr. John Lee. It refers to a condition where there is insufficient progesterone in relation to estrogen in a woman’s body. This results in “unopposed” estrogen which has also been shown to play a role in other gynecological conditions, particularly breast cancer.
Some of the symptoms of estrogen dominance include:
Polycystic ovarian syndrome
Fibrocystic breast disease
Irregular or heavy periods
Spotting between periods
Cold hands and feet
Headaches (including migraines)
Weight gain in the hips, thighs, and abdomen
ZRT Laboratories now offer an at home saliva test that measures estrogen and progesterone levels and also gives a ratio of estrogen to progesterone. I was intrigued by this, so I decided to have my levels tested. Sure enough, my ratio came back at 67 indicating estrogen dominance (normal range is 100-500). Others who are suffering from adenomyosis who are interested in ordering this test and learning more about Dr. Lee/estrogen dominance should refer to his website, www.johnleemd.com.
Adenomyosis and Endometriosis can be Pathologically Proven
After recently listening to Dr. Drew’s ill-informed comments on endometriosis, I find it extremely important to set the record straight. I suffered from adenomyosis, a condition somewhat similar to endometroisis, for 17 years before obtaining a correct diagnosis. I find Dr. Drew’s comments damaging to the cause of bringing more awareness and education to endometriosis and adenomyosis. It is vitally important for people to know the truth about these disorders.
So let me begin by giving you some background information for those of you who haven’t heard the actual call and remarks. A young man called in to Dr. Drew on his radio show, Loveline. His girlfriend had been diagnosed with several seemingly unrelated medical conditions, one of which was endometriosis. After listening to this guy talk about his girlfriend’s diagnoses that took him probably less than one minute to describe, Dr. Drew made the statement that she had a somatoform disorder and needed a trauma specialist. He called these pelvic pain disorders “garbage bag diagnoses” and said that they could not be pathologically proven. In addition, he made the comment that endometriosis is linked to sexual trauma.
Needless to say, many women were outraged by these comments. But even better, some nurses and doctors got in on the action. Dr. Drew really ended up taking a beating over these remarks. Most significantly, Dr. Tamer Seckin, co-founder of the Endometriosis Foundation of America called in to Dr. Drew’s show, and the two of them had about a 30 minute conversation about this topic. Dr Seckin did a beautiful job on setting the record straight, giving accurate facts about endometriosis in a very professional manner to Dr. Drew.
I have listened to both the initial call/remarks and the conversation with Dr. Seckin in full. Although Dr. Drew did apologize at the beginning of the call with Dr. Seckin, he still made some remarks that I find disturbing and inaccurate, so I would like to address these comments here.
Dr. Drew made the following comments:
“Everything you mentioned, EVERYTHING you mentioned are things that actually aren’t discernably pathological.” (This comment came after the caller told Dr. Drew that his girlfriend had been diagnosed with endometriosis, interstitial cystitis, lactose intolerance, and no stomach lining)
This is false. Endometriosis is very much a discernably pathological condition. Even more interesting, IC is commonly seen in women suffering from endometriosis.
“When people have unexplained pelvic pain, it’s called somatoform dissociation.”
Not necessarily. These two remarks are the ones I want to discuss further.
First of all, what he fails to understand here is that many women have had multiple diagnoses and are later proven to have endometriosis or adenomyosis. Many of these women have diagnoses that appear to be unrelated, as was my case. Any doctor can easily say that “endometriosis sucks”, as Dr. Drew so eloquently put it, if they have multiple visits to a doctor confirming pathologically that the woman is suffering from endometriosis. However, it takes a TOP doctor, and expert in his field, to be able to determine that a woman is actually suffering from this disorder after receiving multiple diagnoses that are seemingly unrelated. I would love to know if he has seen the Discovery Fit and Health program, “Mystery Diagnosis.”. The problem of receiving multiple diagnoses that are seemingly unrelated are evident in many different diseases, not just endometriosis!
Secondly, in my opinion, any doctor who thinks he can accurately diagnose a patient without ever talking to her or physically examining her is not one worth pursuing. No one, and I mean NO ONE, can accurately diagnose someone without doing a thorough exam on the patient. I have run into this problem during my struggle with adenomyosis, and the doctors that felt they were able to diagnose my condition without a thorough exam were unanimously wrong in their assessment of my condition. I realize that this is just a radio show, and there is limited time to respond to caller’s questions. However, in my opinion, and more responsible answer to this young man’s question would have been something to the effect of, “Well, it’s hard for me to say for sure, but there are several things that could be going on here. She COULD certainly have a somatoform disorder. However, some conditions do have seemingly unrelated diagnoses as the doctors are trying to determine the cause of the pain. My advice would be to pursue a top of the line gastroenterologist/gynecologist and see if they can narrow down a diagnosis. If they are still unable to find a discernably pathological condition, you may want to consider discussing the possibility of a somatoform disorder.”
Having been through the agony of adenomyosis, I know what these women are going through. You have no idea the number of these women who have not been able to get effective treatment for these disorders because of the lack of the medical profession to accurately diagnose these conditions. While going repeatedly to physicians over many years, a lot of these women, including me, have been told by doctors that it is “all in our head” when it, in fact, is not. This is a major reason why there was such an uproar over Dr. Drew’s comments. This is also one of the main reasons I started http://www.adenomyosisinformationnetwork.com as I want the general public to be educated about misconceptions about this disorder. Just because the doctors are unable to diagnose the cause of a woman’s pelvic pain DOES NOT necessarily mean it is a somatoform disorder. Could it be? Sure. Does it have to be? No!
In my case, I suffered from chronic severe pelvic pain for 17 years, and no, I have no history of sexual trauma. Over that time, I was put on antidepressants because I was so depressed about not getting a diagnosis and having to deal with chronic pain. I was treated many times as if the condition was in my head. But lo and behold, when my hysterectomy was finally done in 2007, I had a discernably pathological condition called adenomyosis. Once the uterus was taken, all of my pelvic pain stopped. During the years that I suffered from this condition, I had a slew of unrelated diagnoses, including peptic ulcer, irritable bowel syndrome, celiac disease, endometriosis, uterine polyp, and possible complication from a ruptured appendix. All seemingly unrelated – but I never even heard the word adenomyosis until after it was found during the pathological examination of my uterus.
Am I convinced that this girl has a somatoform disorder? Based on the call I heard, absolutely not. Again, I can’t say for sure what the problem is, but I am not convinced that Dr. Drew has the correct diagnosis because I’ve been down that road. Could she be suffering from endometriosis, a pathologically discernable condition? Absolutely.
Endometriosis and Suicide – an Excellent Article by Rachel Cohen
I wanted to die last night. There, I said it. Ugly thing to say, right? Might even make you want to inch just slightly away from me. Feel free to. Sometimes I want to inch away from myself as well. But before you judge, try to listen to what I have to say. Assess my words with an open, empathetic heart, and think about the way you would feel if you were in my shoes. It may sound as though I am trying to pull at your heartstrings, to make you feel depressed for me and my life, but I am not. I just want you to understand what it’s like to be a woman who suffers from endometriosis. I just want you to understand. These are the realities of living with endometriosis.
Dealing With the Physical Reality of Endometriosis
Pain. Imagine your abdomen and pelvis are encased in barbed wire so that the spikes of the wire are actually piercing them, stabbing them sharply every time you move. Now imagine that the barbed wire is actually attached to some sort of electrical current that shoots electricity through the spikes, increasing the intensity of each penetration. Next, add a machine that alternates shooting the electrical spikes into the body and pulling them out again in random intervals, thus adding a surprise and shock factor to the pain. Lastly, in addition to the shocking electrical stabbing pain, there are deep, underlying waves of pain that crush and release the muscles, causing a cramp so excruciating it takes your breath away. Imagine living with that agony on an everyday basis.
I live with a veil of pain draped over my body. Not stubbed toe pain, sprained ankle pain, or even broken heart pain. The pain that I feel every day is an all-encompassing event, specially formulated to break both my body and my spirit. It is a visceral and animalistic torture that brings me to my knees in surrender. That is the reality of living with endometriosis.
Fatigue. I want you to try to recall a night during which you slept very little. Maybe you had a party the night before, or perhaps you were up doing work. Now think about the way both your body and mind felt the following day. Did you function as well as usual? Were your movements as fluid, your mind as sharp? Or did it feel as though you were moving through quicksand, your brain wrapped in cellophane? How would you deal if you felt like that every day?
I live with a crushing form of fatigue that makes my every move devastatingly cumbersome. I often feel as though I am nine months pregnant with quadruplets, constantly carrying around an enormous weight that is attached to my body, sucking whatever strength I have left. My limbs feel like they are wrapped in lead, and my eyelids covered in cement. All my body wants to do is sleep, every minute of every day, but it can’t. My life doesn’t take a nap when I do.
The Emotional Reality of Endometriosis: Depression
I wish I could say the physical aspects of endometriosis are all that plague me. Unfortunately, this is not the case. You see, for every physical malady that plagues women with endometriosis, there is an emotional component that is equally, if not more, devastating.
Guilt. Guilt is like an itchy woolen sweater that is two sizes too small: suffocating, uncomfortable, and in desperate need of being shed. It permeates the many aspects of my life and makes me miserable. I feel guilty for having endometriosis to begin with, as I sometimes wonder what I did wrong to deserve it. I also feel guilty that I cannot give my husband the emotional or physical attention he needs. I feel guilty that my close friends and family have to spend their days taking care of me when I am incapacitated and that I spend my days idling around the house while they work hard. I feel guilty for canceling plans that I made weeks ago and the lack of ability to make plans to begin with. Guilty that I cannot be a good friend to others. And guilty when I think of my children who I cannot take care of the way they deserve to be taken care of. Finally, I feel guilty that I cannot give my husband any more precious children due to the hysterectomy I had that was not even successful.
Inadequacy. Due to the symptoms of endometriosis, I often feel inadequate and obsolete. I feel like I lack the ability to do anything important, like my job, or household work. Relationships with my spouse, kids, parents, siblings and even my friends are often placed on the back burner as I struggle daily to merely exist. This inability to maintain relationships, keep my job, take care of myself or family members or even be intimate with my spouse overwhelms me with the feeling that I am incompetent, useless, and valueless. Sometimes I even feel as though my existence on this earth is pointless if I can’t be a functioning member of society. These feelings of incompetence sometimes also lead to depression, embarrassment, guilt, and rage.
Anger. Imagine being told that the agonizing pain you feel every second of every day is not real, that you are making a big deal out of nothing. How would you feel? Anger? Rage? Imagine being told that you are a “druggie” when you ask your doctor for pain medication to ease the misery you are dealing with. Anger again? Or how would you feel towards “God” or “The Universe” if you let your mind wander to the opportunities you would have if you didn’t have endometriosis? It’s hard not to be furious when you think of everything you are missing or losing due to this disease. What if you’ve tried for years to get pregnant with no success or just miscarried the child you’ve wanted all of your life. And imagine being so debilitated by your symptoms that you are unable to perform your everyday activities. How would you feel? Frustrated? Angry? That’s exactly the way I feel.
Jealousy. For me, jealousy rears its ugly head when I see other people performing activities that I am too sick or fatigued to perform. It is hard not to be jealous of a healthy person when I am stuck in bed, too exhausted to move, or lying on the couch, writhing in pain. Just seeing someone go food shopping without discomfort causes jealousy within me, as I would do anything to be able to perform everyday activities without pain. Jealousy is also inevitable when we I see other women, basking in their pregnant glow, and I know that I will never again carry a living being inside of me.
Loneliness. Yes, I am extraordinarily lucky to have a wonderful support system in my life, and I am enormously thankful for that support, but there is a profound, hollow loneliness that sometimes overwhelms me when it occurs to me that despite their best efforts, my loved ones cannot fully understand what I am going through. Even my sisters with endometriosis cannot completely comprehend my individual suffering, as every person suffers uniquely. Therefore, I am sometimes led to feel as though no one understands me, and there is no thought lonelier than that.
Loss. Endometriosis is a disease that is full of loss and mourning. On a basic level, I mourn the loss of a “normal”, illness-free life. A life that is chock-full of boring, everyday activities and errands. I am no stranger to mourning or to loss. Having a miscarriage created a deep, inconsolable hole within me that will remain with me forever. But most of all, having a hysterectomy has caused a ubiquitous feeling of loss within me as I mourn, not only the loss of potential children, but the loss of a part of my womanhood.
Depression. Oh, depression. That dark, suffocating feeling when the world looks like it has no color in it and our futures seem murky and unclear. For me, depression is caused by many different things. Being alone all the time, not being able to spend time with family and friends due to pain, fatigue or other symptoms is depressing. Excruciating pain is depressing. Feeling like my illness is misunderstood is depressing. Feeling like I need to be embarrassed of my illness is depressing. And lastly, the thought that there might not be any hope for my recovery because there is no tangible hope for a cure, that I might have to deal with the incapacitating symptoms of endometriosis for the rest of my life, is the most depressing thought of all. That is why I wanted to end my life. Yes, I contemplated suicide. Like so many of my sisters with endometriosis, I hit bottom. I was tired of the pain, tired of the despair, tired of the guilt, and tired of being tired. But mostly, I was and am, just tired of the pain.
Living with Endometriosis is Horrendous
Now that I have exposed my vulnerable and aching heart to you, my friend, you have a choice to make. I will never blame you if you choose to stay away from my complicated and sometimes depressing life. Like I said, if I had the choice, I would probably do the same. But let me say one last thing before you make your decision. Life with endometriosis is horrendous, but women with endometriosis are not. We are strong, determined women who fight fiercely and love fiercely. We try our best. We are not lazy or pathetic and we don’t give up. We may not sugarcoat the painful emotions and terrifying symptoms that we deal with. Our honesty may even frighten you. But when you meet a woman with endometriosis, you are meeting a proud, indomitable warrior. A soldier who goes into the fire on a daily basis and emerges with a thicker skin time and time again. A woman who should not be pitied for her pain, but admired for her ever-present resilience and strength. That, my friend, is who I am. Take me or leave me. It’s up to you.
A Plea for Compassion
Recently as I was doing more research for my adenomyosis website, I came across a “support” site for endometriosis sufferers that caught my eye…..not because of great content, but because of a post by the site administrator asking members to stop complaining about their symptoms. She referred to member comments as “whining/pity party”. This upset me as I suffered from adenomyosis for 17 years and had to put up with comments like these constantly. Reading this after hearing Dr. Drew’s ill-informed comments on endometriosis just proved to me that we still have a long way to go as far as educating the general public about these two disorders.
Endometriosis and adenomyosis are not just physical disorders. They also dramatically impact the psychological health of these women as well. I encourage you to read a heart-wrenching story of a young girl named Kristi who committed suicide because she could not get effective treatment and could not take the pain anymore. You can access the article at http://www.kokomoperspective.com, and the name of the article is “So No One Else Will Suffer”.
Dealing on a daily basis with chronic, severe pain is tough enough. But to have to listen to others write you off because you can’t obtain an accurate diagnosis creates immense additional distress for the sufferer. When I began to have symptoms, I lived in a very small town with limited medical care. When the doctors in that town couldn’t determine the cause of my pain, people around me began talking behind my back, saying that I was making everything up. In the article I mentioned above, Kristi had to face this same attitude by her own doctors in the beginning of her endometriosis journey. These kind of comments might not seem like a big deal to people who have never had endometriosis…….just typical gossip. However, for the person going through the daily chronic pain of endometriosis, these comments are devastating and can break a woman’s spirit which may even lead to suicide.
On the website that I mentioned earlier, several women became upset by the comments. I completely empathize with these women. The site administrator backed off a little bit, but she advised that if they were having those kinds of issues, they needed to go to a professional counselor. Yes, I absolutely agree with that. Professional counseling can help immensely in dealing with the mental/emotional aspects of endometriosis. However, let me remind everyone that not all of these women have access to the best medical care, including psychological care. If they live in a small town like I did, they may not be able to find the help they so desperately need. Also, some of these women may not have the financial resources to go to counseling on a regular basis. I strongly believe that women should have some kind of other outlet where they can just vent and connect with other women who are going through the same thing. Just knowing that they are not alone is huge help to these women! I encourage venting on my facebook site – Adenomyosis Fighters. I will never, ever refer to comments as “whining/pity party” because I’ve been there. I know what it’s like. Your feelings are your feelings, and you should never apologize for that. Even professional counselors will tell you that.
To the general public: Please, please have compassion for these women who are suffering from these conditions. Please remember that undiagnosed chronic pelvic pain is not necessarily “in your head”. Please remember that the average time to diagnosis for endometriosis is 10 years, and that number is even higher for adenomyosis. Please watch your comments around these fragile women and remember that they are dealing with chronic severe pain every day. And finally, please give your full support as they are forced to travel a very difficult journey in life. Thank you.