Home » Posts tagged 'severe pelvic pain'
Tag Archives: severe pelvic pain
A very interesting article on endometriosis that was found in the psoas muscle. Just another case that shows endometriosis can be found in just about any area of the body. Recommended reading….thanks to Lisa at Bloomin Uterus!!
An article was published on October 30, 2016 in the International Journal of Clinical and Experimental Medicine, which caught my interest. We know that Endometriosis can grow in a lot of places ot…
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!
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.
The physical toll of adenomyosis is very clear – severe pain, heavy bleeding, infertility, etc. This is much easier to see than the emotional toll these women have to face on a daily basis. The following are some of the issues I was faced with during my 17 year struggle:
1. Co-workers and friends not supportive due to the fact that the doctors were unable to diagnose the condition.
2. My own doctors telling me I needed counseling/antidepressants because they were not able to come up with an accurate diagnosis. I was told that my condition was probably stress related.
3. Having to struggle with severe abdominal pain and not having an accurate diagnosis – wondering all the time if I had something deadly (such as cancer) and the doctors were missing it.
4. Being afraid to leave my house for fear that an attack would hit me at anytime. Being afraid to not have access to a bathroom.
5. Constantly trying to get people to understand that I was in severe pain. I could not get them to understand the degree of pain that I was dealing with.
6. Taking Midol or ibuprofen constantly even when I was feeling good, “just in case” an attack happened.
7. Going through medical tests to have the doctors tell me that they found nothing – so I still didn’t have an answer to the cause of my pain. Knowing that I was going home and nothing was going to change.
As you can see, all of this can severely impact the emotional health of those struggling with adenomyosis.
Since doctors cannot diagnose adenomyosis easily, some of them are likely to tell you that it is stress related and may be quick to try and prescribe an antidepressant. My suggestion is to get a second opinion….or third or fourth!!
I remember watching Montel Williams one day discuss the problems when getting his correct diagnosis. It took 9 doctors before finding out that he had multiple sclerosis!! We now know through the show Mystery Diagnosis that a diagnosis by a doctor can be wrong. Thank goodness for Discovery Fit and Health and this show for bringing this fact to the forefront!
As far as my experience, I was told that it was “all in my head”. I was told that I needed to go to counseling for stress management. I was given a slew of antidepressants over the 17 years that I struggled with this disorder. Actually I probably did need the antidepressants for the stress I was going through in not getting an accurate diagnosis!! Everyone who is involved with an individual who is sick and not getting properly diagnosed needs to remember this one vital piece of information: the person going through it is suffering not only physically probably on a daily basis but also mentally. Treating a real disorder such as adenomyosis as if it is “in their head” just compounds the mental suffering and leads that person deeper into depression!!
“When you hear hoofbeats, think of horses, not zebras”
This is a popular saying among physicians. It means that when diagnosing someone, look for the expected and not for the unusual. This may be true in most cases. However, there are “zebras” out there! If someone has been complaining about any kind of problem for an extended period of time and has been tested for the usual disorders with normal results, it is time to look for the zebra! It certainly should not take 17 years (as in my case). During my research, I have found that the average time to get a diagnosis of adenomyosis is 9 years. In my opinion, this is completely unacceptable. Under no circumstances should a woman have to undergo severe abdominal pain and very heavy bleeding for that period of time. I’m asking for the medical profession to start looking for those “zebras” sooner than later.
Currently, the most effective way to get a diagnosis prior to hysterectomy is either transvaginal ultrasound and/or MRI. In my case, I had many transvaginal ultrasounds, but I never received the diagnosis of adenomyosis prior to hysterectomy; however, that was many years ago and the technology has improved since that time.
The following is a list of the tests that may be necessary as you are worked up to rule out other causes of abdominal pain. I have been through some of these, and they aren’t nearly as bad as they sound. I will eventually add descriptions of the procedures and add my own personal details of my experience. Hopefully most of you will not have to go through all of these, but in case you do, I wanted to give you an idea of what to expect.
Pelvic Exam/Pap Smear
Notes from personal experience:
I have always hated getting a pap smear basically because of the position (legs in stirrups) and the insertion of the speculum (slightly uncomfortable). The actually swabbing of the cervix is not painful at all. The good news is that it can be completed very quickly and it is over before you know it.
Notes from personal experience:
This is a very easy and completely painless test. You will be required to have a full bladder so the technician will be able to get clear pictures of your reproductive organs. This can be somewhat uncomfortable especially if you drink a lot and have to wait at the office. If you have been waiting a while and are getting really uncomfortable, don’t hesitate to let the receptionist know that you are there for a pelvic ultrasound and have a full bladder!
Notes from personal experience:
I have had this test multiple times. It is not painful and takes only a few minutes to perform. It has been reported that adenomyosis will be picked up using this test in 50-70% of cases; however, adenomyosis was never picked up in my case.
Notes from personal experience:
I had my one and only colonoscopy close to 20 years ago, and I’m sure things have changed since then. However, even 20 years ago, this test was not painful, believe it or not. The worst part of the whole thing was the prep the night before the exam. At that time, I had to drink a giant jug of medicine that tasted like salt water – 8 ounces every 20 minutes until it was gone. The purpose of this drink was to clean out the colon, and it certainly did its job! I went to the bathroom constantly throughout the night and became very cold. By morning, I was a little nauseated. However, once they gave me the sedative, I was completely out of it and the rest was a piece of cake. I have since learned that they changed the procedure from the drink to taking a pill the night before the test. That sounds a little bit better!
Notes from personal experience:
Although this test sounds like it might be painful, I experienced no pain whatsoever during the actual exam. I was pleasantly surprised! However, about 30 minutes after the test (on my way home in the car), I began to have very bad abdominal cramping and some GI distress. It lasted for about 30 minutes and then passed. This apparently isn’t very common, so it could just be my individual case….not sure about that, though.
I did not have this test performed during my struggle with adenomyosis. During my research I have learned that this test may or may not be beneficial in women suffering from this condition. Since adenomyosis is seen in only sporadic areas of the uterus, luck would play a role in whether the actual biopsy site contained the adenomyosis. If it happens that the biopsy site did not contain the adenomyosis, a women may be told she doesn’t have it when she actually does. Keep this in mind if this test comes back negative but you continue to have severe symptoms. It has been reported that this procedure will only pick up about 45% of cases.
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