I built this page for the purpose of informing people of the disease Endometriosis and also to create an area on the web for women who suffer from Endometriosis to come together and share their story. A place where they don’t have to feel alone in their suffering. 
Endometriosis is a common medical condition characterized by growth of endometrial tissue, the lining of the uterus, beyond or outside the uterus.
Affecting an estimated 89 million women (usually around 30 to 40 years of age who have never been pregnant before, though it can occur in those that have) of reproductive age around the world, one in every 5 females get endometriosis. However, endometriosis can occur very rarely in postmenopausal women. An estimated 2%-4% of endometriosis cases are diagnosed in the postmenopausal period.
In endometriosis, the endometrium (from endo, “inside”, and metra, “womb“) is found to be growing outside the uterus, on or in other areas of the body. Normally, the endometrium is shed each month during the menstrual cycle; however, in endometriosis, the misplaced endometrium is usually unable to exit the body. The endometriotic tissues still detach and bleed, but the result is far different: internal bleeding, degenerated blood and tissue shedding, inflammation of the surrounding areas, pain, and formation of scar tissue may result. In addition, depending on the location of the growths, interference with the normal function of the bowel, bladder, small intestines and other organs within the pelvic cavity can occur. In very rare cases, endometriosis has also been found in the skin, the lungs, the eye, the diaphragm, and the brain.
Endometrial tissue residing outside the uterus responds to the menstrual cycle in a way that is similar to the way endometrium usually responds in the uterus. At the end of every cycle, when hormones cause the uterus to shed its endometrial lining, endometrial tissue growing outside the uterus will break apart and bleed. However, unlike menstrual fluid from the uterus, which is discharged from the body during menstruation, blood from the misplaced tissue has no place to go. Tissues surrounding the area of endometriosis may become inflamed or swollen. The inflammation may produce scar tissue around the area of endometriosis. These endometrial tissue sites may develop into what are called “lesions,” “implants,” “nodules,” or “growths.”
Physicians may use stages to describe the severity of endometriosis. Endometrial implants that are small and not widespread are considered minimal or mild endometriosis. Moderate endometriosis means that larger implants or more extensive scar tissue is present. Severe endometriosis is used to describe large implants and extensive scar tissue.
Symptoms
Most commonly, the symptoms of endometriosis start years after menstrual periods begin. Over the years, the symptoms tend to gradually increase as the endometriosis areas increase in size. After menopause, the abnormal implants shrink away and the symptoms subside.
The most common symptom is pain, especially excessive menstrual cramps (dysmenorrhea) which may be felt in the abdomen or lower back or pain during or after sexual activity (dyspareunia). Infertility occurs in about 30 to 40 percent of women with endometriosis. Rarely, the irritation caused by endometrial implants may progress into infection or abscesses causing pain independent of the menstrual cycle. Endometrial patches may also be tender to touch or pressure, and intestinal pain may also result from endometrial patches on the walls of the colon or intestine.
Some have related the pain of endometriosis to feel like labor pains.
The amount of pain is not always related to the severity of the disease-some women with severe endometriosis have no pain; while others with just a few small growths have incapacitating pain.
Endometrial cancer is very rarely associated with endometriosis, occurring in less than 1 percent of women who have the disease. When it does occur, it is usually found in more advanced patches of endometriosis in older women and the long-term outlook in these unusual cases is reasonably good.
Symptoms of endometriosis can include (but are not limited to):
- Painful, sometimes disabling menstrual cramps (dysmenorrhea); pain may get worse over time (progressive pain)
- Chronic pain (typically lower back pain and pelvic pain, also abdominal)
- Painful sex (dyspareunia)
- Painful bowel movements (dyschezia) or painful urination (dysuria)
- Heavy menstrual periods (menorrhagia)
- Nausea and vomiting
- Premenstrual or intermenstrual spotting (bleeding between periods)
- Infertility and subfertility. Endometriosis may lead to fallopian tube obstruction. Even without this, there may be difficulty conceiving. In some women, subfertility is the sole symptom, and the endometriosis is only discovered after fertility investigations.
- Bowel obstruction (possibly including vomiting, crampy pain, diarrhea, a rigid and tender abdomen, and distention of the abdomen, depending on where the blockage is and what is causing it) or complete urinary retention.
In addition, women who are diagnosed with endometriosis may have gastrointestinal symptoms that may mimic irritable bowel syndrome, as well as fatigue.
What Causes The Pain?
The way endometriosis causes pain is the subject of much research. Because many women with endometriosis feel pain during or related to their periods and may spill further menstrual flow into the pelvis with each menstruation, some researchers are trying to reduce menstrual events in patients with endometriosis.
Endometrial tissue reacts to hormonal stimulation and may “bleed” at the time of menstruation. It accumulates locally, causes swelling, and triggers inflammatory responses with activation of cytokines. It is thought that this process may lead to pain perception.
Endometriosis is thought to be an auto-immune condition and if the immune system is compromised with a food intolerance, then removing that food from the diet can, in some people, have an effect. Common intolerances in people with endometriosis are wheat and dairy.
Women with endometriosis frequently suffer from painful ovarian cysts, making ovulation quite painful. Sometimes, the cysts burst and can cause life-threatening infections in the pelvic cavity.
Women with endometriosis commonly have problems with extraordinarily painful periods and severe cramps. The bleeding can be profound and continue for weeks, leading some women to require iron supplements and even blood transfusions. These women are usually treated with birth control pills, hormone therapies, IUDs with hormones, drugs that induce menopause, or even hysterectomy to stop the dysmenorrheal symptoms.
While the menstrual pain itself can be quite excruciating, it is not the only time a person with endometriosis suffers. The lesions cause scar tissue to grow in the abdomen (and sometimes elsewhere), which bind internal organs to each other. Fallopian tubes, ovaries, the uterus, the bowels, and the bladder can be permanently damaged. This kind of pain is more debilitating on a daily basis and goes on for years, yet most sources of information seem to focus on menstrual symptoms.
Treatment
While the treatment for endometriosis has varied over the years, doctors now agree that if the symptoms are mild, no further treatment other than medication for pain may be needed. For those patients with mild or minimal endometriosis who wish to become pregnant, doctors are advising that, depending on the age of the patient and the amount of pain associated with the disease, the best course of action is to have a trial period of unprotected intercourse for 6 months to 1 year. If pregnancy does not occur within that time, then further treatment may be needed.
For patients not seeking a pregnancy where treatment specific for the management of endometriosis is required and a definitive diagnosis of endometriosis by laparoscopy has been made, a physician may suggest hormone suppression treatment. Since this therapy shuts off ovulation, women being treated for endometriosis will not get pregnant during such therapy, although some may elect to become pregnant shortly after therapy is stopped.
Hormone treatment is most effective when the implants are small. The doctor may prescribe a weak synthetic male hormone called Danazol, a synthetic progestin alone, or a combination of estrogen and progestin such as oral contraceptives.
Conservative surgery attempts to remove the diseased tissue without risking damage to healthy surrounding tissue. This surgery is called laparotomy and is performed in a hospital under anesthesia. Pregnancy rates are highest during the first year after surgery, as recurrences of endometriosis are fairly common. The specifics of the surgery should be discussed with a doctor.
Some patients may need more radical surgery to correct the damage caused by untreated endometriosis. Hysterectomy and removal of the ovaries may be the only treatment possible if the ovaries are badly damaged. In some cases, hysterectomy alone without the removal of the ovaries may be reasonable.
New surgical treatments are being developed that further utilize the laparoscope instead of full abdominal surgery. During routine laparoscopy, the surgeon can cauterize small areas of endometriosis. Other evolving techniques include using a laser during laparoscopy to vaporize abnormal tissue. This involves a shorter recovery time. Laparoscopy treatment is possible, however, only if the surgeon can see pelvic structures clearly through the laparoscope. These newer techniques should be performed by surgeons specializing in such delicate procedures. Although these techniques are promising, more study is needed to determine if they yield results comparable to conventional surgical management.
A Natural Healing Approach to Endometriosis
Now that you know what Endometriosis is and what causes it, you’ll know that there is no cure. Have you ever considered a natural process in healing it?
For me my Doctor has put me on birth control. I had a negative experience with birth control before (Trivora) but so far w/ this new brand (Yaz) everything has gone really well. No side effects like I had with the other one (Trivora — Rash up and down my legs that itched all day & all night). But what else could I do for myself and for my body if there is no cure for Endometriosis? I purchased a book called The Complete Encyclopedia of Natural Healing by Dr. Gary Null, Ph.D. .In it he goes over the symptoms of Endometriosis, what causes the disease and how you can help yourself in a Natural, Healthy way. Here is just a sampling of he shared in changing your diet to help heal yourself:
Diet
Since conventional treatments for Endometriosis have their drawbacks, it may be beneficial to explore natural solutions, starting with a dietary approach, to alleviate symptoms and reverse the problem. There are foods that may reduce estrogen levels, and thus diminish or slow the growth of Endometriosis. A mostly vegetarian diet is recommended, with an emphasis on soy products, alfalfa spouts, flaxseeds and legumes. Another dietary strategy is to consume foods that aid in excreting estrogen from the body through the intestinal tract. A high-fiber diet worksto this end; think in terms of whole grains and fresh fruits and vegetables. You want the diet to be low in fat; avoid, particularly, products high in saturated fat (such as dairy products and red meat), but make sure to get enough essential fatty acids (omega-3 and omega-6, in the form of flaxseed oil, fish oil, evening primrose oil or ground flaxseeds). Lastly, the liver may aid in lowering estrogen levels. Therefore, it is a good idea to eat foods high in the B-complex vitamins, such as whole grains and legumes, and avoid alcohol, fat and sugar, in order to promote a healthy liver.
He goes on to talk about Supplements, Herbs, Homeopathy, Hellerwork, Oriental Medicine, among other treatments. A VERY helpful book. So far I’ve attempted his method, though it’s only been a few days. I’ve already started this type of diet with a more Pescatarian approach — proving very hard to adapt to, but very worth it. I enjoy eating chicken, but I also have noticed I feel a lot… “lighter” when I don’t eat a lot of heavy meats. What have you tried, that has helped you?
Usually my pain during my cycle is 8-10.
Belle Browne’s Pain Scale Pain level 1-10
[0] No pain
[1] Slight annoyance, irritation or both; even a slight dull ache. The pain comes and goes, is very mild and slightly effects concentration. Still able to perform all tasks normally and pain is easily forgotten while attending to something else. No pain meds required.
[2] Slight pain which lasts a bit longer; still able to perform usual tasks and again, if concentration is shifted away from the pain, the pain is forgotten about. No pain meds required.
[3] Pain is more noticeable, twinges come and go. Still able to perform usual tasks, but with a bit of effort. Panadol or Tylenol usually will help with this type of pain.
[4] The pain lasts for longer periods, is much more noticeable and is starting to bother and interfere with concentration and tasks requiring more effort and concentration. Panadol or Tylenol taken should alleviate this type of pain; a 4th to 6th hourly regime may be required. A hot pack or ice pack may also help alleviate the pain.
[5] The pain is now very noticeable, it is interfering with everyday tasks and a pain reliever is now required at 4 to 6 hourly intervals. Depending on the patient, someone with acute pain may still respond well to Panadol or Tylenol 4th hourly, maybe with added codeine and even heat or ice may help with some relief of this level of pain. For the chronic pain sufferer, this may be the start of breakthrough pain and breakthrough pain meds may start to be thought about, especially if the pain continues to get worse.
[6] The pain level is medium…. heading towards strong now and it is becoming more constant and is not easily forgotten about. Pain relief is now required and it may need to be stronger than just Tylenol or Panadol, maybe added codeine may help with level of pain relief…this all depends on whether the pain is acute or chronic and on the patient’s actual level of pain tolerance. A chronic pain patient may be still at this level with strong pain relief. Heat or ice may still help lessen the pain.
[7] The pain level is now medium to strong and the pain is continuous. It is not relieved by Panadol/Tylenol with codeine, stronger narcotics are required for pain relief. Chronic pain patients may be at this level even with strong narcotic pain relief. Heat may also aid with relief. It is becoming harder to concentrate due to the strength of the pain and its getting harder to relieve the pain.
[8] The pain is becoming unbearable, strong narcotic pain relief is required. The chronic and acute pain patient will be irritable, hot and maybe flushed, perspiration maybe noticeable or may not. Blood pressure may also be elevated. Patient may start to shake a bit. If the pain has been going on for too long, then nausea may start to set in and the patient appears to be in a lot of pain and suffering.
[9] The pain now is unbearable, only strong narcotic pain relief for the acute patient will help with the pain. The chronic pain patient will be irritable, perhaps flushed and patient’s palms are usually sweaty. Blood pressure is usually raised; pain relief needs to be increased and reassessed. Nausea or vomiting may be present. The patient may be trembling or shaking due to the amount of pain, moaning and groaning may be present. Whether the pain is acute or chronic, the patient is usually unable to sleep or concentrate on the smallest task.
[10] The pain level is totally unbearable, the patient maybe vomiting or even lose consciousness. The patient may also become delirious, even moaning and groaning without making any sense. The blood pressure may still be elevated or by now may have dropped and the patient may go into shock. The patient must be treated symptomatically…if cold, then the patient should be kept warm; if hot, they should be cooled down. Pain relief is needed urgently. The patient may even become incontinent.
What are you?
If you’re interested in reading the same book where I got this information from, here’s the link to purchase it:
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Sources in their entirety:
WebMD (Facts about Endometriosis)/ Wiki (What is Endometriosis?)
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Submitted Endo Girl Stories
Share your story:
Stories:
Christine: Haven’t been ‘officially’ diagnosed yet, but I’m due to have a laparoscopy this Monday (EEK!) and they are pretty certain its endometriosis. Anyway, my experience so far has been: – Very heavy periods & long periods (usually the first two days of my period each month I have to stay very close to a bathroom and my periods usually last between 7-12 days. -Weird period cycles (last year I had a period that lasted two weeks and then three days after it ended I had another period that lasted another two weeks, so a month period!) -Abdominal soreness the week before and after my periods -Feeling bloated around my periods -Nausea & vomiting -Bad cramps including feeling achy in my entire body enough that all I feel like is curling up in bed! -Pelvic pain ( I get shooting pains on my pubic bone that make my lower back and leg hurt and it occassionally painful to walk) -Pain in my abdomen, sometimes lower–sometimes mid -I’m tired A LOT – Constipation randomly throughout the month -Uncomfortable or Painful sex or nausea & abdominal soreness afterwards -Prone to headaches -My glands hurt a lot after my periods (feel like I’m coming down w/a cold) for some reason The above varies each month, but thats generally what I’ve had to deal with. Haven’t noticed a problem with dairy or wheat as of yet. Although I should probably check if I have a food intolerance! What I’ve done which helps: -Making sure I talk things over w/my partner – YOGA, Oh my gosh this totally helps with pain control -eating well—they say endo is an autoimmune condition and reducing your intake of things that have been subjected to pesticides helps (i.e. organic where your budget permits especially organic meat—NO growth hormones!) *Flaxseeds and omega 3’s I heard helps with endo. Wheat grass shots are good too, cause it purify’s the liver. In Far Eastern medicine they believe that reproductive prob’s including endo is caused by stagnation of Qi or energy in the liver. If you can cleanse it with wheat grass shots then all the better! -Exercising: again helps regulate the hormones! -Meditation: Having quiet or pampering time. I personally love to switch off with a nice massage! -Having someone/someplace or some group to vent your frustrations. (Thanks becca for setting up this group!). There’s loads of other support forums out there too! Anyway, this is just my story so far! Would love to hear about what others may have dealt with in relation to endo!
Rebecca: My experience with Endometriosis thus far has been: Extremely painful menstrual cycles (periods) since the age of 15 with Labor-like pains. Not always, but some are so bad that I’m literally unable to move. HEAVY menstrual cycles. Not always, but I have had lower back pain during some cycles. REALLY bad back pain. When it’s not my back it’s my pelvic area, abdomen or where it feels like my intestinal area. Nausea 3 weeks out of each month Vomiting as my period gets closer. Extreme fatigue 2 weeks out of each month Not really painful, just irritating head-aches Diarrhea & Constipation randomly throughout the month.
Nikki: Hello ladies, I just went to google today and typed in endometriosis blogs and thankfully stumbled upon your blog. Thanks so much for posting information on endo. I was diagnosed with this wonderful disease at 18. I am now 30 and have been through a LAP surgery, Lupron and birth control. I just recently got off birth control (I was on it for three years, continuously with only a handful of periods) so that my husband and I could get pregnant. It has only been one month that I’ve been off the pill, but the pain is back. Misery!! I was diagnosed with severe endometriosis – which basically means that it not only spread into my uterus, it also covers my abdomen, bladder and bowel. My pain always starts right before my period. It always wakes me up in the middle of the night – almost feels like a UTI. I have a wonderful Doctor in Los Angeles that has been nothing but patient with my fears and questions. I am so thankful that my husband is very patient and supportive of my disability. Christine, I really think that you should get another opinion. I had to go through six OBGYNs before I found one that diagnosed me with endometriosis. All the other Doctors kept diagnosing it as a yeast infection! What!? Please keep this blog up. I could write a book on all the crap I’ve been theough!! p.s. – LOST was so amazing! It was worth 8 months of waiting! -Nik
Lori: Hi Ladies! This is a fabulous sight. I too was searching for more info on endo and was pleased to find the knowledge and just plain kindness on this sight! Hers’s my story, my husband and I have been trying to conceive for about 3 yrs now. About a year ago, I went to my ob/gyn and said I wanted to see what was the deal with my infertility. She did all the lab work, an hsg and abdominal/vaginal ultrasounds. Apparently everything came back normal but I did have a “small fibroid” in my uterus which she said was normal and not of great size to cause infertility and she also said one ovary was slightly larger than the other but she attributed this to the fact that I was probably ovulating on that side. Since everything was normal with both of us and my husband and I weren’t getting any younger, we decided to see an infertility specialist (back in March ‘07). Again, all my labs were normal and we did two IUI attempts, both unsuccessful and down right heart breaking! I decided to take a break for awhile and see if we could just get pregnant on our own using the ovulation kits. In december I went in for my annual exam and told my doc that I normally have a lot of cramping around ovulation and at my period but now I was cramping for the whole flippin’ month. She ordered another ultrasound and it came back that I had bilateral ovarian cysts. She said they wer not too large and wouldn’t affect my fertility but that I should have another ultrasound in two months to make sure they’ve gone away. She breifly talked about a laparoscopy but said it was surgery and “not fun”. Well, now that it’s a new year, me & hubby decided to find another infertility specialist closer to home and start treatment again. I brought in the records from my ob/gyn and told the new doc what I knew about my history with the fibroids, cysts, etc. She decided to do an ultrasound right then and there to check on the status of my cysts. She was kinda nonchalant but I could sense some concern. She did a great job explaining to hubby and I what we saw on the screen and then said we’d go back to her office and talk — not good, I already knew. The cysts in my ovaries were still there and the one on my right side now had three parts to it. It reminded me of the films in sex ed class where the egg is dividing – it looked just like that! From there she proceeded to tell me that these were very large and that my infertility was now the secondary problem. These cysts are called endometriomas. She thinks I have endometriosis and should have a laparoscopy done. She told me all the degrees of the disease, how it was treated at all the different stages and that I would definitely come out with smaller ovaries & less egg production and that in extreme cases they remove your ovaries and even do a hysterectomy! It all depends on what they find once they are in there! Keep in mind I went in thinking she would plan a date for artificial insemination and off we’d go. Now I am trying to find the best possible surgeon so I can keep my ovaries intact. This doc said she does about 100 lap’s a year which sounds good but she is not in my insurance network. I have an appointment in 2 weeks to go to see someone in network that is supposed to be a specialist and even does that new robotic surgery. Needless to say, I am scared to death and racked with guilt for being the cause of our infertility. I don’t know how I remained composed to finish meeting with the doctor. As soon as I was out of the office, I lost it. Has anyone out there experienced this type of edo scenario? Please share. Thanks!
mtbblog: Hey Rebecca, First of all, I’m so glad I stumbled upon your blog! Here’s my story with endometriosis. First I had a tiny lump that developed in my lower abdomen just above my right thigh. It felt like a hard little pea that sat right on my pubic bone, and it was painful around the area. Eventually it became swollen around the whole area as well. It hurt all the time, especially when walking. One general practice doctor and a nurse practitioner told me on two different occasions that it was a swollen lymph node and to take more hot baths to diminish it. Hot baths??? OK, so I took hot baths for months with no improvement. A second lump appeared above the first one, and I really knew it wasn’t right. Went to a third doctor who said one lump was the swollen lymph node that may have become chronically infected and the second lump he wasn’t sure. When a round of antibiotics did nothing to affect it, my doctor sent me to a surgeon to have them removed. Only after the surgery was done did I find out that both lumps were endometriosis cysts! I was shocked. Luckily, the top cyst was not attached to any organs, and the lower cyst was attached to connective tissue (which is why it hurt whenever I walked). I’m lucky to have found a very good gynecologist who is aware of my past history. I’ve been trying out different birth control methods and have recently settled on Mirena, which is a new IUD. It seems to be working well for me. My body is still getting used to it, but the heavy periods and spotting seem to be subsiding as my body adjusts. So I lived with the painful cysts for almost 2 years. It was such a hassle, having constant pain and not having any idea how to make it go away. It really became a hindrance for me in many ways; I’m naturally a very active person and sometimes I would not want to do anything active so as not to aggravate the pain any further! I had both cysts removed exactly a year ago. Just a month ago I started to feel some pain and slight swelling in the same area, and I am a bit concerned. My gynecologist suggested that I check in with her in 3 months time so we can keep track of any potential problems. I know I’ve been so lucky compared to many women who have been afflicted with endometriosis. But thanks for letting me vent anyways! And thanks for the great resource.
daianna: hi guys, i’m so glad I found this blog. this whole ordeal has been extremely frustrating. I’m 26 and for about 1 1/2 years I’ve had so many symptons and seen about 4 gynocologist and 3 gastroenterologists. I’ve had UTI, yeast infections every month for almost 1 year, extreme bloating naseau, diarreha, sometimes pain during and after sex, painful cramps during the first two days of my period, now I have bad lower back pain. Since I thought these were two different issues I went two different specialists. I’ve had an endoscopy and recently a colonoscopy. which has both shown nothing wrong. I was told it could be IBS or gastritis. I was prescribed Aciphex, but it has not helped with my stomach problems. Since I had the colonoscopy done 2 weeks ago, the bloating that was expected after it has gotten worse. I contacted my doctor and he said to see my gynocologist because the procedure might have worsen the endometriosis. The last gyno that I saw diagnosed me late last year and told me that the best solution was to have two treatments of lupron shots. it was less invasive. But when he explained the side effects I panicked. I left it alone and made up my mind that I did not have this condition. Now I don’t know what to do. I have an appt. on Thursday and I just want to find out for sure this is what I have. I’m tired of going from doctor to doctor and getting virtually no answers. It’s a relief that there are other women going through the same.
Timbre: Thank you for this, I had no idea this blog contained info about endo, I was just reading your great posts, I’m having an insomnia episode so as soon as I have time and am not so exhausted I plan on going through it more. I was diagnosed in 2006 after numerous misdiagnoses. I lost my insurance last year in the beginning of pelvic floor therapy and routine visits for pain management and “hormones” did the Lupron thing and have never been the same. this will be my first official summer in my new body. I have been avoiding writing about this on my blog, I can be informal and ridiculously candid on EVERYTHING else, but Endo still has a way of making me stop eberything and cry. I hate that, and I just want to be able to do it right, Once again, thank you for sharing your story so beautifully. I am still looking for options but I have a real bad time finding doctors to help without insurance. Last year was told need surgery and couldn’t do it because I couldn’t afford it. Beautiful right? Another thing…when did it feel okay to talk about it? Have you ever gone through the whole-Everybody thinks I’m being a drama queen or a liar anyway, I feel like people think I/m acting like a victim for attention, do you know where I’m coming from? still dealing with that. I gotta tell you this is probably the most I’ve written since my diagnosis. thank you for your inspiration, I apologize for my long-winded comment. take Care!
Allisyn: I have not actually been diagnosed with endo yet,however, from doing extensive research over my spring break I think it might be possible that I have it. I have many of the symptoms ranging from extremely painful menstrual cramps (often so bad I black out) to rectal pain and insomnia. Life isnt always easy for everyone, and everyone definitely had a burden to bear. But with God and faith anything is possible. Miracles do happen. I am supposed to be going to my gynecologist in the next two weeks to discuss my symptoms with her and possible treatment. Wish me luck! God bless!
Stephanie: Rebecca- Thanks for starting this blog. It’s a great place to vent and also learn from everyone else’s experiences. I have stage 4 Endo (I am 27). First I want to say that I am lucky. I have found a trustworthy and supportive doctor here in San Francisco who takes her patients seriously and never dismisses my physical or emotional symptoms. My endo was discovered through a Lap I had 9 months ago due to a ovarian cyst I had (the size of an orange). After the Lap my doctor told she thinks it will be extremely difficult for me to get pregnant. She immediately put me on hormones to stop my periods until I go through natural menopause. The hormones (birth control) were VERY hard for me. I was terribly depressed for 4 – 5 months. Suicidal thoughts. But, I had to stick with it if I wanted to stay out of an OR. And after about 5 months I finally adjusted and felt like myself again. 6 months after my Lap I had another cyst so she put me on Lupron. I take one shot a month with no add-back therapy and I’m done with 4 of my 6 injections. The drug’s side affects are horrible, but it will be worth it if I can avoid surgery. I am doing everything to minimize side effects (hot flashes multiple times a day, night sweats, insomnia and inability to stay asleep, bone pain, hair loss, appetite loss and weight loss). So, for those of you who have to endure Lupron- here are my suggestions: -Get a fan for the bedroom and your desk…it will help the hot flashes and night sweats (and help you sleep). Costco has a dual set, a small and large one. Make sure the fan for your room has a remote so you don’t have to get up to change the settings. -Wear shoes that don’t require socks. Your feet and head are the main avenues for heat to escape your body. -Take calcium supplements with magnesium to help bone pains. These supplements also improve your ability to stay asleep. (Lupron can severely limit your ability to fall into stage 3 REM) -Omega III Fish Oil is good for auto-immune diseases like Endo, and it helps with depression and joint pain that might be caused by Lupron. -Lastly, regularly exercising does wonders for the health of your body and mind. Thanks for the notes above on diet changes…I’m going to work on that next. I must say that the pain, cysts, surgery, Endo diagnosis, fertility sentence, hormones and now Lupron injections have resulted in a pretty trying experience. Don’t get me wrong. I know I am lucky- Endo doesn’t have the severity of other diseases, like cancer, and Lupron isn’t Chemo. But because I think like this I often have guilt over accepting support from friends and family because I feel like things could be worse and that I don’t deserve the attention. Regardless, a side effect, pain, call from the Dr., or even seeing a pregnant woman walking by are constant reminders of my situation. Ultimately I am coping with the fact I may never fully move on from this. All I can do is be positive and proactive. Thanks for letting me vent! I wish everyone the best. Do everything you possibly can to put up a good fight.
Joan: I have been to two gynos plus my gp. I am 29 and have already had 2 lap sugeries, now heading for my third. I have taken the Lupron, bc pills, Depo provera to no avail. I bleed constantly with all the hormone treatments. My gyno said they could do endometrial ablation but there is still no guarantee it will stop the bleeding(40% chance). Also, every surgery I have increases the chance of my kidney disease flaring up.I talked to my nephrologist and he says if I dont have the hysterectomy I’m probably just putting off the inevitable. Plus risking a flare up that could cause more kidney damage. At this point I’m trying to consider all the info and health risks and not rushing to make a decsion. I do know Im not willing to do anymore hormone treaments. I just cant handle the mood swings, additional migraines, and constant bleeding. Sorry to complain so much. I’m just at my wits end.
Erica Gregory: I stumbled onto this site and was fascinated by all of the stories everyone shared. I don’t have endo. but I know people who do. I have polly cystic ovarian disease. I don’t have any problems like you guys do, I am on the other end with rare and light periods. The biggest problem I have is fertility and I was one of the very lucky ones who could take medication and get pregnant and I have 2 beautiful daughters. But that is not why I decided to post a response, I wanted to let you know there are people out there who do read these blogs who are not affected by what you guys struggle with everyday, and we may not understand but we do try. I feel for each of you and understand the energy it takes to live with such a powerful disease everyday. I know that God gives us each a struggle to live with and this is yours, it sucks and I feel for you. But know that as you struggle you will be made stronger. I am thinking about you and pray for each of you as you continue your struggle to find out if you have endo, try to have babies, and decide weather or not to have hysterectomy. God bless you all, and Big Hugs. Hang in there and never give up hope!!!
Luciana: Hi everyone! I suffer from endo too… I’ve had 2 “chocolate cysts” removed so far in the last 4 months. -The first one was in mid november 07, it was inside my left ovary and was about 3.1×3.6 inches. It was torcing so they had to do the surgery immediately. The cramps were amazingly painful! omg i couldnt stop crying! (and believe me, I can handle pain). I was in Lima, Peru at that time (my insurance covered 90%) -The 2nd was last weekend (late march 08) and this time it was outside my left ovary (it was half size the 1st one), it wasnt torcing but I felt so much pain I had the laparoscopy done to see what was really going on. Besides the chocolate cyst, there was this endometrioma (little one) outside my uterus and it was bleeding into my tummy). That’s why so much pain. My doctor could not remove all of the cyst though. She said she took everything she could). This was in Houston, Texas. (No insurance. I havent gotten my bills yet, but I’m calculating around 35 grand). ouch! Is anyone rich here???? lol, just kiddin’! Anyways, my story begins when I was 18 (I’m 26 now). My ob/gyn found I had polycyst ovaries so I started taken the pill (”Femiane”). I took it for 7 years, my periods were pretty good, no more cramps and my bleeding was lighter than usual. After those 7 years, I decided to stop taking them (I was all worried I was gonna get infertile for taking it so many years…now I know it has nothing to do with it…. and besides I had just broken up with my then boyfriend). My periods became irregular (again!) and the cramps started all over again. Till that day in November 2007, I had a fever (104) and was feeling awful. Besides the regular menstrual cramps, I had stomach ache and had been constipated for the last 5 days I think. I called the hospital and they sent me an ambulance to pick me up. I got there and after a few exams I was lying down ready for surgery. As I said before, the cyst was torcing so it had to be done right away. Everything went ok. My wounds were just fine, they didnt hurt that much, but the gas they use to inflate you…. OMG!!!! SO PAINFUL!!!!! Thing is that when they do a laparoscopy, they inflate your tummy (as if you were 35 weeks pregnant) with CO2, so they have more space to be able to do what they gotta go… to see better, to move your stomach and intestines and everything… and feel more comfortable in there. I couldnt feel the shoulder pain everyone had warned me, instead I had it on my right side ribs. I couldnt even breath because it worsen the pain. After 2 days I was all good. I had to go to NY the following week, so I did. I tried not to walk that much but… who does not walk in NY????? Anwyays, I stayed there with my bfriend for 5 days. What a city!!! Right after my surgery, my ob/gyn recommended me to put this implant under my arm (”Implanon”: Progestogen Etonogestrel. It does not contain estrogen. Estrogens worsend endo) so my periods were lighter and lighter, with less pain and hopefully prevent more cysts. I was supposed to just stop bleeding after a month or so. Well, I didnt stop bleeding at all, I’ve had my period for the last 4 months (stoping maybe 1-2 days a month). When I called my ob/gyn in Peru… he told me to start taking Cezarette (desogestrel. No estrogen either). to reinforce the action of the implant. I started taking them 4 days ago (after my 2nd lap) and I can see a difference. I’m bleeding just a little bit. So far so good, I guess. But if it comes back, I’m gonna have to start with Depo-provera or Depo-Lupron… the bad thing is that you can only take it for 6 months max. So, what comes after that? Having my left ovary taken??? Or both??? (I dont have any kids yet…I was planning having my 1st one in 2 years). “Funny” thing is that, even after giving birth, and even after histerectomy, you can still develope endometriomas. (Ha!) So, this is me. The bad thing about hormones is that I feel a little bit depressed some times. I get angry and sad and happy, then sad then angry, etc etc etc. These mood swings!!!! I hate them!!!!!! I feel tired, too. My libido is just gone ( I have to wait 6 weeks though, because of my surgery)…and I’m so ANGRY there’s not that much I can do. This s#*t sucks big time!!!!!!!! It feels good, though, that we’re not alone. This blog is the best ever!
Karla: Hello Everyone, GREAT SITE! I suffered from severe menstrual cramps since the 1st time i got my period, I’m 25 now. I saw several OBGYNs and they all said it was “normal” and gave me pain killers. Finally I saw someone who had some interest in trying to find out what was wrong. After several paps and sonograms (all came out normal), I decided to get a Lap done (scheduled for 4/10/08). Im very nervous, eventhough everyone including my doctor says “its nothing” and i should be ok in a matter of 2 to 3 days…but still! Im an emotional wreck but i really just want to get this over with!
Kimberly: Hello Ladies, This is my first time to an Endo blog. I have to say I feel more at ease now than before. I guess it is finally time for me to share my story. I have first started my period the summer going in to my 5th grade year. It wasn’t until I hit middle school when things turned for good to bad. The first two days before my period I could not smell food or I would throw up. I had to have cool air blowing on my face at all times, and on top of that, someone from my family had to pick me up from school to take me to the dr’s or the ER, because I was in so much pain. This happened every single month!!!! In addition, during this time, I was having trouble with my thyroid; it would become inflamed for a while then go back down. Anyways to make a long story short I finally had a total thyroidectomy, in ’05. We thought that since the removal of my thyroid, things get better. However, that was not the case; I was then taking Motrin and T3’s around the clock with no relief. During this time, I started to develop more symptoms: sever headaches, stomach and bowel problems, fatigue, and weight gain, sever right shoulder pain all the way down to my fingertips. My new PCP decided to take action and find out why I was having sever periods. I went in and had an ultrasound and they discovered that I had a “chocolate cyst” that was 2 ½ inches long and extra fluid in my pelvic cavity. Oct and Nov ’07 both times I was in the ER because I had sever pain on my right side under my ribs. Their first thought, was that there was something wrong with my kidneys and or liver. Thank God that there wasn’t, upon more examination the ER concluded that their could be a possibility that there were Endo cells in that area. My GYN wanted me to get clearance for a general surgeon to rule out kidney or liver problems. Once I go the clearance, I had my first Laparoscopy, Hysteroscopy, D&C, and Chromtubularzation on Feb 29, 08. After I came to, I found out that both Dr’s doing the surgery were not prepared for what they saw. They said that my WHOLE uterus was covered with Endo cells. The only thing that they were able to clean some of the scar tissue where my uterus was pulled out of place and connected to my rectum. In addition to that, they did find a good amount of cells attached to my liver. After the surgery all the way to today, I feel completely DRAINED to the point I do not want to get out of bed. My hormones are way outta whack, sometimes I feel like crying, others rage, randomness, hopeless, you name it. So, as of the moment I have to have another surgery to go back and clean all that mess up. Today April 24, 08, I got my first injection on Lupron. My GYN and the other Dr. that assisted in the surgery, wants me to take this shot for 6 months. During the 6 months, they will be training a Colon rectal specialist to use the tools that they use in the Lap, so he can also go in there, clean, and do what he needs to do. If any of you ladies experienced any thing like this please share with me how you made it through. I know that God is not going to give me more than I can bear, however some times I feel that I can’t. Kimberly
Sophia: Rebecca and all my compassion goes out to you for what you go through. I am here to add yet another vote for Omega 3 supplements. While I do not have endo (thank the Lord) I have had horrific cramps since my first period at age 13. Heavy bleeding, lower back pain and cramps that force me to take the day off if I can afford to. Last year at the advice of my chiropractor (a very holistic one), I started taking two Omega 3 pills a day and the cramps have been much more manageable since (in addition to helping reduce inflammation in my hip joints where I generally get recurring bursitis). I also use those sticky heat pads that adhere to your pants or underwear and burn you, I mean warm you for 8 hours. And of course exercise helps too. Blessings, Sophia
Allison: Hello Rebecca- I’m sorry to see other sufferers, but, I’m glad that we have a place to share our experiences and thoughts. I was diagnosed back in Feb with Stage IV endometriosis. It has affected my colon-not invaded it (thank God), but, it is pressing down on it. I decided to start Lupron Depot to help (I HOPE) clear out my colon and other adhesions. We are also going to try to have a child soon, and, hope this brings a bit of normalcy, just for a little while, to the mess in my insides. I am also doing some life changes throughout this process to help better myself in the long run. I am trying to cut out most non-organic meats and dairy. It’s really hard sometimes, but, I have found it helps. I’ve also cut WAY back on caffiene and sugar (sugar causes inflammation, and we all know we don’t need any more of that!). I can tell that when I eat really sweet things now, it hurts!!! I hope by adapting these changes now I can further the effects of the lessened estrogen, and, I hope symptoms. I haven’t had time to read everyone’s comments, but, my heart goes out to everyone that suffers with this. I keep a blog on my endo journey-and-have some links to some other ladies sites. If we all band together, we can get through this!!! http://i-am-not-endo.blogspot.com God Bless!!!
Pauletta: Hi All, I came across this blog while looking for more information about this crazy disease. I am 45 years young this year and I have been suffering from Polycystic Ovarian Syndrome complicated by Endometriosis from the age of 16. I have had a D&C, age 22, and 3 laporoscopies. To many OBGYN/GYN’s to mention and still no change. Most of the doctors that I have seen have only tried to tell me that I need to see a head doctor. I have been diagnosed with depression from the very begining. Who would’nt be depressed when living with this. I have gotten as used to the pain and other symptoms as much as I can. It has been so long now that I try not to think about it anymore. The only thing that really bothers me to the point that I think I will go crazy is I have very bad vertigo. I recently watched a program on the Health Channel, Mystery Diagnosis, about a lady who had severe endometriosis and it had developed in her ears and made her have severe vertigo. This stuff is so strange that it can develop any where in your body. I have sarcoidosis in my lungs and I am beginning to think that maybe it have something to do with my Endo. I suffer from extreme mood swings and pain about 3 weeks before and during my cycle. I started my cycle when I was 16 and it was extremely heavy and lasted for months. I had my D&C because I almost bled to death. The doctor did not know what was going on and he just kept giving me pills to try to stop it but to no avail. After the D&C things did not really change I kept having heavy periods and sometimes they would last for months and then I would not have them for months. I tried so many birth control pills but I am highly resistant to most medications. I think that has something to do with the Endo also. I become so, I call it ditzy, that I can hardly function at times. My first laporoscopy revieled massive endometriosis and many, many cysts on my ovaries. I have had it removed three times but no one has ever said that I should have a hysterectomy but now I am seriously thinking about it. If I am rambling please forgive me. I have a hard time consentrating and it seems to be getting worse as I grow older. The vertigo is almost all the time and I have headaches at least twice a week. I am leary of doctors because I have seen so many who seem to not really want to listen to me but want to give me pills and send me to a phys. I do not think I am crazy and I do not wish to waste my time or theirs. Does anyone else experience the vertigo as bad as I seem to? Jessie: It amazes me how whenever someone speaks about their experience with endo, there is often one common theme. They go to doctor after doctor, they can’t find out what’s wrong, they are unsympathetic, the treatments are often worse then the disease. I am 27 and was diagnosed in January with stage 4 endo after going to doctor after doctor. I had a laparoscopy that lasted more than 4 hours, the dr said it was everywhere and suspects that it is in my lungs. She percribed 2 3month shots of lupron. The lupron is hateful! It’s made me see my body as a prison. After the lupron I get surgery to remove any of the disease she can find and then the IUD with hormone. From all that I have read of treatment plans I have read this seemed like a fairly holistic approach, but i’ve since encountered never-ending problems with accessability and reliability with the office. the doctor has like 3 times the patients she should, cancels appointments, contradicts herself and the office staff is about as helpful as punching myself in the head. I just got a new primary care doc and he referred me to a new doc and I have referrals from some other reliable sources. I’m so exhausted from going to doctors, I’m fortunate to have insurance but the co-pays alone are so costly. As the doc today put it you only get one chance with your body and you have to be your own advocate. Has anyone experience extreme siatica with the endo, I was told it was the casue but there has been no improvement, I’m going for an mri soon to see if it’s a herniated disc? This website is great, it’s nice to hear from people that understand, I feel like I am such a drain on the people I love sometimes.
Stephanie: Hey ladies, Just joining the blog! My story is as follows… I am 25 years old and for the last year and a half I’ve been having the worst pain. Ironically I do not suffer from abdominal cramps; however I have very bad rectal cramps and the worst lower back pain imaginable. In the last 4 months its landed me in the ER 3 times, and there I was diagnosed with Sciatica, which is compression of my Sciatic Nerve, which sends pain all the way down my left leg to my calf. Often times my leg is numb and weak. During my period I only bleed 3 days and it is VERY light. Yet, the pain lasts a good 5-7 days. During this time I have SEVERE rectal pain. I mean it feels as if my insides are going to fall out. I can’t even sit or have a bowel movement. I was on a regimen of Ortho triclyclin lo, B complex, multivitamins (women’s One a Day) and 800 mg of Mortin (every 8 hours starting when I got to the sugar pills of my birth control. That really helped!!!! But once the pain went away, I started forgetting to take my BCP’s, and it got really ugly. I had the lap surgery done, to no avail. Because of where the implants were, they could not be removed. I had a small cyst on my left ovary and cervix and a golf ball-sized cyst on my right ovary that was filled with blood and burst during the procedure. The procedure wasn’t bad. I had the surgery on friday and went to work on monday. I was told that my cervix is to the left, m uterus is tilted back, and my uterus is fused with my bladder. I also have some scarring. And let my doc tell it, the endo is all over. My doc injected dye and said that my tubes are open and that I should not have any problems conceiving. The only solution, per my doc, is Lupron, but I’ve decided to restart my other regimen since it worked wonderfully. I just have to remember to take those pills every day, lol. I also might try the new pill in which i’ll only have a period 4 times a year. Thanks to all!
Rachel: Hi guys, I’m 22 and have had endo for about a year and a half, have had 2 laps to burn off the endo but the surgeries didn’t help the pain–the only thing that has helped for me is the no wheat, no dairy diet. Just wanted to say to TRY IT–I had never done alternative therapies before, but this has actually worked. I went from excrutiating pain, constantly, to basically no pain (once in a while it will flare up if some wheat gets into food that I don’t know about, for ex). I went to many doctors and the last one that I saw, a specialist at a very good hospital in the chief resident’s clinic, wanted to start me on Lupron right away. I was very wary of the possible side effects, did more of my own research and found studies about the nutritional aspects. According to Dian Mills, a nutritionist who used to have endo and who has a book “Endometriosis: A Key to Healing Through Nutrition”, (it’s British and I ordered mine on Amazon Marketplace), the no wheat/no dairy (some women can keep dairy but wheat is the biggest culprit, I find that dairy also bothers me), works for 80% of endo patients. No doctor ever mentioned nutrition to me, but please try it! It might take a while to see effects, for me it took about 3 weeks for the wheat to get out of my system, but just in case it works for you too try it for a couple months! Good luck.
Devin Terry: I am 27 yrs old and have had trouble with my cycle since I started having one in 5th grade! At first is started off as an extremely heavy cycle, one in which you wore the “diaper” and changed five or six time before lunch because you had saturated it so fast. Then in Jr. High things started getting worse and I started having severe menstrual cramps with my cycle to the point I would stay at home for the first two or three days because I hurt so badly I was at home vomiting from the pain. After taking me to the doctor my family and I were very discouraged because the OBGYN told us there wasn’t anything he could do for someone my age and that I would have to learn to “live” with it. Of course you learn to “live” with not only the pain during your menstrual cycle but the “normal” pains of everyday life. At that age I was mortified to be going to an OBGYN in the first place so I did just that, I learned to “live” with it. I lived like this until right before my 27 Birthday in 2007 six months after getting married. I was suffering from such painful sexual intercourse that I didn’t even want my new husband to touch me any longer because I knew in the end I would end up crying due to the pain. In Sept. of 2007 I brought this up to my new OBGYN and after asking about my family history (a Mom w/ Ovarian cysts and an Aunt w/Endo.)he suggested a laparotomy. After finding my tubes in much array he stopped the surgery and told my husband he was sitting us up with a fertility specialist because he had never seen someone as young as I am with that much damage! I will never forget being in the recovery room barely able to open my eyes and my nurse talking to me when this other nurse walked up (thinking I was asleep) and asking if I knew how bad it was yet… At that point I didn’t know what to expect and my thoughts of course jumped to the worst possible scenario! A month later (Dec. 2007) we saw the specialist who thought he could clean up the endo. tissue and restore the function to both tubes. I had a second surgery in Jan. 2008. Since then I’ve been on continuous BC treatment to decrease the estrogen production so that hopefully my husband and I can get a house built before getting pregnant (we currently live in a three room loft apartment). I’m currently using Ortho Evra (The Patch) for my BC but since the second week of June I’ve had a continuous light period ever since that time along with horrible mood swings that I’ve never experienced before. I’ve called to get an appointment with the specialist but I still have a few weeks to wait. I am currently researching different treatment options but would like to hear from other Endo. sufferers to see what has helped you. Please let me know, I would love to hear from everyone.
Lindsey:There is hope!! I’m 26 now and have had severe endo since I was 14. Luckily my doc was famailiar with endo and my family history of it and put me on birth control pills right away, with that I was able to control the pain with Celebrex during my period. That was until I started trying to get pregnant… It has been a year and a half and it has been hell. Along with all the normal awful endo symptoms I was getting ovarian cysts monthly, the pain was unbearable and my legs would go numb. No painkillers would control the pain and I didn’t realize it but I had become very depressed and withdrawn. I finally had laproscopic surgery to remove the endo in May of 2010 and they found severe endo with my left overy completely stuck to the side wall and the tube blocked. They were able to fix the structural stuff and remove the endo but the pain was still there, just not quite as bad until July (only 3 months) and it was back with a vengence.
I had heard about the endo diet (no gluten, dairy, caffine, alcohol, sugar) but hadn’t commited to it because it seemed so extreme. Finally I decided if even surgery can’t help that I HAD to do something! I started the diet and taking some chinese herbs perscribed by a naturopath and with in 3 days felt like a new person!! I have so much energy, don’t feel very much pain (its getting less and less every day!)
All I can say is how many times have you been curled up in bed promising you’d do any thing to make the pain stop?? Well you can! Try the diet for a month or two, it WILL change your life!