surgery....and update

I went to my pelvic pain dr. on Wednesday. they did another ultrasound to check on a cyst that was on the ultrasound I had done in October, then I had to wait forever to see the dr. and while I was waiting, the pain was really bad. So, finally I got to see the dr. I still have a cyst on my left ovary, and it has grown, to the point where he wants to do surgery to remove it. The ultrasound showed it has some solid areas, which could be blood or endometriosis. He said that depending on what it looks like when he gets in there, he may have to remove the ovary. He will also look around to see if there is scar tissue, more endo, etc. and he actually was going to give me Percocet for the pain, but I already have some from when I went to the ER 2 weeks ago. I did get a shot of phenergan and toradol before going home since the pain was so bad.

Since it was so late when I got done seeing him, the person who schedules the surgery was not there. So he said that they would call the next day. He said that it was not an emergency situation, but not to wait too long either. I was hoping to get it scheduled for next Wednesday, so that I could go to my classes on Monday and Tuesday, and still have time to recover before finals.

The lady who does the scheduling called yesterday (Thursday). My mom took the call, as I was at school. They were going to look at the schedule to see if they could fit me in on Wednesday. They could not. So my surgery is scheduled for Monday at around 9am (central time). I had to go back today to do the pre-op testing.
Since it is 2 hours away, I will be going down Sunday night. Then most likely I will have to stay Monday night as well.

Starting Saturday, I can't have anything except for clear liquids and foods, like gatorade, jello, ginger ale, etc. Then I have to do a bowel prep on Sunday night. I'm going to save the gatorade for that, since that is the only thing that helps those nasty salty pills go down.

Hopefully this will take away most or all of the pain that I have been having lately.

I'm hoping that he doesn't have to remove the ovary, but if the cyst is attached in such a way that he has to, then it's whatever he feels is necessary for my health.

I will give an update at some point after I come home.

Please keep me in your thoughts and prayers.

UPDATE:

The surgery went well. It started around 9:45ish, and it was probably 2 hours. The next thing I know, I'm in the recovery room.

My dr. had to make 4 small incisions: one in my belly button, one down by the pubic area, and one on each side.

While I was in the recovery room, they kept asking if I was hurting, and what my pain level was. I probably got about 3 doses of morphine. Then I went to another room so my mom could come be with me, and so the nurse could give me discharge instructions, and make sure I could go pee. Then the dr. came in and discussed the pictures (pretty interesting). He said that the cyst was between 4 and 5 cm, larger than my ovary. If I had waited (not sure if he meant 2 weeks or a month), the cyst could have gotten even larger, and then he would have had to take the tube and the ovary. So, I'm glad that I got it done and over with.

I'm still pretty sore, and probably will be for a while.

I go back for my first post-op appointment on Dec. 22nd.

I can't believe it's already December...

Well, it's December, and that means that 2008 is almost over. A lot has happened this year, some of it I am thankful for, some of it I'm not.

January 2008

I was still experiencing a lot of pain from Endo and IC. My aunt, who also has IC, suggested that I get tested for food intolerances. So, I found a naturopathic doctor who said that she would do the testing. Instead of blood or skin test, she uses electrodermal screening. It's kind of hard to explain, so just google it. Anyways, she found all sorts of stuff...bacteria, small strains of viruses, etc. And she told me that I have intolerances to wheat, gluten, and dairy. So I immediately changed the foods that I was eating.

April/May 2008

My pain is almost completely gone, but not quite. I didn't know if it was because one of my meds for the IC had finally started working, or if it was because I had cut out wheat, gluten, and dairy. But really I didn't care what it was, as long as it helped lower my pain.

July/August/September 2008

In the middle of July, I started getting horrible headaches. No one could figure out what was causing them. I went to a neurologist who said that I had migraines, and he said that the best thing was to admit me to the hospital for a few days to receive treatment to try to get them to a manageable level. He then had me on Topamax for about 2 weeks, then decided that the headaches were mostly stress headaches, so he put me on some other med. In the meantime, I found another dr. who specializes in headaches. I went to see him, and he said that I definitely did have migraines. He put me back on Topamax, and said that 2 weeks is not enough time to see if the medicine would work.

October 2008

I went to Disney with my family and my dad's side of the family. It was a lot of fun. However, my pain was slowly coming back. At the end of October, I saw the pelvic pain specialist, and he said that it was too soon to do another surgery, since it had only been a year. and he didn't think that the Endo could have possibly come back that fast(that's another story for another post). They did an ultrasound, and found a cyst on my left ovary. He told me to schedule a follow-up ultrasound, and if it has grown, or if they find anything else, then he might do surgery.

November 2008

I went up to PA for my friend's bridal shower. Somewhere between leaving from the airport in AL, and arriving in PA, I caught a cold. I wasn't too worried when I was up there, I just thought that it was from traveling and the changes in temperature. When I got back home, I was still sick. I was sick on Thanksgiving:( I went to 2 dr's, both gave me an antibiotic and a cough med. However, I still have the cough.

On Wednesday, I go see the pelvic pain specialist for the follow-up ultrasound.

The rest of December is busy with finals, more appointments, and getting ready for Christmas.

a turn for the worse

well, the Baclofen only helped for a few days. then I went to my family dr. and she gave me Bentyl, thinking maybe it could be intestinal spasms. but that didn't help. so, I've been trying lots of Motrin and Aleve, and it would help for a little, but then I would have to take more, and that's not good for my stomach. This past Wednesday, I was at an appointment, and was in so much pain that I had to call my mom to come pick me up. I put my TENS unit on, and was able to go to work. Last night, I was in so much pain that I called my friend and asked her to take me to the ER. well, I had been texting with my mom about something, and I told her that my friend was taking me to the ER. so, my mom called and told me that there was some Percocet she had hidden away. and "all they are going to do in the ER is give you more Percocet." BS!!!!!!!!! they will at least do an ultrasound. I ended up taking a Percocet, using my EndoFemm pad, and watching tv. the pain is kind of less, but still there. I'm just pissed b/c I think that my endo is back and maybe other things, but my dr. just thinks it's muscle spasms. oh, and my mom said "why didn't you call me first and tell me about your pain?" and I told her that I didn't want to bother and disturb them (and I knew what her answer to taking me to the ER was - a big NO).

The Percocet made me feel awake, but also a little sleepy. I was awake until 5am: on the computer, watching tv, etc. then my dog woke me up at 9:30. the pain started to get bad again, so my mom told me I could take another half a percocet.

the pain is a little better, but I'm still not 100%...I don't know if or when i'll ever be....I need to find a new doctor though, one who will actually listen to me and understand me and believe me about the endometriosis

finally some answers

went to my pelvic pain specialist yesterday, he said that most likely it is muscle spasms, so he gave me a prescription for Baclofen. They also did an ultrasound, and found a cyst on my left ovary. He wants me back in 4 weeks to have another ultrasound to see if the cyst grows or shrinks. He doesn't think I need surgery again yet, unless the cyst grows or I have more pain, etc.

My bladder is also better, so the med that I am on for that (Elmiron), he told me I can go down to one pill a day.

I'm still in pain, but at least i have a few answers.


I hope that I will be able to keep up with everything going on this weekend: I have a doctor's appointment tomorrow, then Halloween stuff. Saturday morning/afternoon I am going to help weatherize homes for the elderly with people from church. I also have a lot of studying to do - I have 2 tests on Monday, and a paper due on Monday. Hopefully the pain won't get too much worse. If it does, well, I will just take it one day at a time.

more things I can't eat....

I went to my naturopathic doctor. She does electrodermal testing. It came up with so many things that could be causing my pain...problem with my gut, colon, thyroid. I also have mold and yeast in my body. Also, I don't know how this testing works, but it says that I can't have tuna, catfish, or shrimp. It also came up with gluten, so somehow there must be small amounts of gluten in stuff that I don't know about. But I've never liked tuna and haven't eaten much, just once or twice when I was younger. and I've never had catfish or shrimp. So, I'm now taking a bunch of supplements (I have been taking some on and off since January). Hopefully some of them will help clear up the mold and yeast and help my pain go away.

So, in addition to all the foods I have to avoid for IC and Endometriosis and triggers for migraines:

definite food intolerances: wheat, gluten, dairy

foods that I probably have some sort of intolerance to: tuna, catfish, shrimp

oh so lovely. It's getting to a point where I don't have much I can eat...it's really annoying.

need prayers....

I have not been feeling well the past week. Last Sunday, while I was at work, I got a major migraine. I had to lay down on the floor, curled up in the fetal position. Then someone had to drive me home. Then, two days before, my pelvic pain started getting bad again. I feel that it is either the endo or cysts or a combination of the 2. I have yet to get an appointment with my doctor. I really just want at least an ultrasound and/or CT scan. Maybe it's time for another surgery. At this point, I will do anything to get out of pain.

prayers are much appreciated......

more disney

Monday, we went to Epcot again. My sister and I rode Test Track and Mission Space. We also went around to the different countries to see what food they had. We went on the Norway ride :) My mom and sister went to the Magic Kingdom later, while my dad and I stayed at the resort (and watched the Epcot and Magic Kingdom fireworks from our balcony).

Tuesday we went to Animal Kingdom. The first thing we did was the safari ride. That was so cool to see all those animals. Then some of us did the Kali River Rapids ride (some did it twice, just to make sure we got soaked). Then some of us went on Expedition Everest. We then went to get some lunch. After that, my sister and her friend that also happened to be there, went on Expedition Everest again. Meanwhile, I was freezing cold, so I had to buy a shirt. I was going to get pants as well, but nothing really was worth the price (except for some cute pj pants, but it was hot out). Then we all met back up to go see The Festival of the Lion King. That was also amazing :)!!

Tuesday night, just my family (me, my sister, mom, and dad) went to see Cirque Du Soleil: La Nouba. Oh my goodness - what an awesome performance. I loved it sooooo much!!!!!!!!!!

Then yesterday (Wednesday) we came home. It was a good vacation.

disney continued...

We got there around midnight on Friday. The next day, we went to Epcot. We were there during the Wine and Food Festival, so there was tons of food. We did the "Behind the Seeds" tour at The Land, where you get to see how they actually grow their plants and other stuff that you don't see when you are on the ride. Then we did Soarin' which was awesome. After that, we went back to the resort for happy hour by the pool. We went to the restaurant at the Germany Pavillion in Epcot for dinner. We also stayed to watch IllumiNations:Reflections of Earth.



Sunday, we did Hollywood Studios. My sister and I went on Rockin' Roller Coaster. Then we met with the rest of our family at the Lights, Motors, Action! Stunt Show. It was amazing :)!! My dad and I then went on Star Tours. Then we went back to the resort to get ready for dinner. We went over to the Animal Kingdom Lodge and had dinner at Boma. The chef made me a special gluten-free dessert. Then we went back to Hollywood Studios, and watched Fantasmic. Again, amazing :)!! My sister, cousin, and I stayed for the Extra Magic Hours. My sister and I went on Rockin' Roller Coaster again, then Tower of Terror. Then all three of us went on Star Tours. After that, we got some ice cream, and headed to the boat to go back to the resort.

it's been a while....

sorry I haven't posted for a while...

The Women's Retreat was a lot of fun. We stayed up late doing crafts and watching movies Friday and Saturday nights. Sunday morning, I was ok until about 9ish, and then got a really bad migraine. I was sitting down on the floor, leaning against the wall. I tried the whole "2 advil and a coke" thing, but that didn't help. I ended up laying down on the floor, curled up in the fetal position, crying. When the other women got back from the little worship service, I took Phenergan, and they helped me get out to my friends car. So, other than that, the retreat was good. I can't wait until the next one.

I was busy with school and other stuff last week, so I didn't get a chance to post. Then, Friday, my family and I went to Disney World. We got back yesterday afternoon. We had so much fun. It was for a family reunion with my dad's side of the family. The resort we stayed at was the Beach Club, and we stayed in the Villas part of it. There was an amazing pool area, and there was also a beach. We could walk to Epcot from our resort!!! We could also see the fireworks from Epcot and Magic Kingdom from our balcony.

gone for the weekend

I will be leaving this afternoon to go on a Women's Retreat with my church. We leave a little later this afternoon, and come back on Sunday. The "theme" is prayer. I know that I, along with many others, need prayer a lot. Hopefully I will be able to get something positive out of this retreat.

An update: I am done with daily B12 shots. Now I do them once a week for a month. I start that next week. I already have a bruise from one of the shots, because I got the vein. I didn't know that I had a vein there...I pulled the needle out, and blood came out, ran a little bit down my leg, but I stopped it. I am sure that it will happen again at some point, since you can't see the veins on the tops of your legs...oh well.

So, I will be back sometime on Sunday. I will post how the retreat was and what I learned.

That's all for now.

Most Recent Stuff

I have been suffering from migraines since July 15th. I went to my doctor 3 times and tried several different medications, none helped much except for one of the pain meds. I saw a neurologist on August 20th, and he diagnosed me with "intractable migraines". He said that the best thing was to have me admitted to the hospital for 2-3 days for treatment with a medicine called DHE. So I went to the hospital Thursday morning (the 21st) around 8:30, but treatment did not get started until around noon. After getting the IV in, they did a trial dose, which seemed to be ok. The first real dose was torture: First they put Phenergan in (which apparently "burns" the vein), then flushed with saline solution, then the DHE, then flushed again. When the nurse was putting the stuff in, I did not mention that it was hurting ( I don't know if I was just "out-of-it" or what) but I mentioned it a little later. The second dose hurt the same amount, and I did tell the nurse that it hurt while she was putting the stuff through the IV. They tried to find another vein, but could not. So they put a PICC line in my left arm (the IV was in my right arm, in my wrist). They also let me take the Phenergan orally. My right arm was (and still is ) sore, and when they came in to take my BP, it only made it worse, but not as bad as when the meds were going through the IV.

The neurologist was that the DHE would get rid of my migraine, but it only got it reduced by 60%, which is still pretty good.

I had some blood work done on Tuesday morning to check magnesium, serotonin, Vitamin D, Vitamin B12, B6, and B2(riboflavin), and some other things. Well, some of the results came back on Thursday. I have a Vitamin B12 deficiency. I am now taking B12 shots ( daily for a week, then once a week for a month, then once a month). My dr. wants me on them for at least a year.

I then saw my neurologist on Thursday afternoon. He said that most of the headaches were stress headaches, with some migraines. So I am going off the medicine for migraines, and going on a medicine that is supposed to help with stress headaches.
I do have an appointment with a headache specialist a week from Monday. Maybe he will have some other suggestions.

Food Intolerances

So, I was diagnosed with Endometriosis and Interstitial Cystitis (IC). However, I was still having a lot of pain. In January of this year, I decided to get tested to food intolerances. It is different than food allergy testing. Both can be done by blood tests, but I had no clue what doctor to go to. I finally found a naturopath. She did something called electrodermal screening. You hold one magnet in one hand, and she has this other instrument thing hooked up to a machine, and it "spits out" what food(s) and other things you are intolerant to, and things you are deficient of. I have wheat, gluten, and dairy intolerances. After being off the wheat and gluten for a while, I have felt so much better.

I do take supplements for certain things, but probably need to go back and get retested for everything.

That's all for now.

What is Interstitial Cystitis? (continued)

What are the treatments for IC / PBS?

Scientists have not yet found a cure for IC / PBS, nor can they predict who will respond best to which treatment. Symptoms may disappear without explanation or coincide with an event such as a change in diet or treatment. Even when symptoms disappear, they may return after days, weeks, months, or years. Scientists do not know why.

Because the causes of IC / PBS are unknown, current treatments are aimed at relieving symptoms. Many people are helped for variable periods by one or a combination of the treatments. As researchers learn more about IC / PBS, the list of potential treatments will change, so patients should discuss their options with a doctor.

Bladder Distention

Many patients have noted an improvement in symptoms after a bladder distention has been done to diagnose IC / PBS. In many cases, the procedure is used as both a diagnostic test and initial therapy.

Researchers are not sure why distention helps, but some believe that it may increase capacity and interfere with pain signals transmitted by nerves in the bladder. Symptoms may temporarily worsen 24 to 48 hours after distention, but should return to predistention levels or improve within 2 to 4 weeks.

Bladder Instillation

During a bladder instillation, also called a bladder wash or bath, the bladder is filled with a solution that is held for varying periods of time, averaging 10 to 15 minutes, before being emptied.

The only drug approved by the U.S. Food and Drug Administration (FDA) for bladder instillation is dimethyl sulfoxide (DMSO, RIMSO-50). DMSO treatment involves guiding a narrow tube called a catheter up the urethra into the bladder. A measured amount of DMSO is passed through the catheter into the bladder, where it is retained for about 15 minutes before being expelled. Treatments are given every week or two for 6 to 8 weeks and repeated as needed. Most people who respond to DMSO notice improvement 3 or 4 weeks after the first 6- to 8-week cycle of treatments. Highly motivated patients who are willing to catheterize themselves may, after consultation with their doctor, be able to have DMSO treatments at home. Self-administration is less expensive and more convenient than going to the doctor's office.

Doctors think DMSO works in several ways. Because it passes into the bladder wall, it may reach tissue more effectively to reduce inflammation and block pain. It may also prevent muscle contractions that cause pain, frequency, and urgency.

A bothersome but relatively insignificant side effect of DMSO treatments is a garlic-like taste and odor on the breath and skin that may last up to 72 hours after treatment. Long-term treatment has caused cataracts in animal studies, but this side effect has not appeared in humans. Blood tests, including a complete blood count and kidney and liver function tests, should be done about every 6 months.

Oral Drugs

Pentosan polysulfate sodium (Elmiron)

This first oral drug developed for IC was approved by the FDA in 1996. In clinical trials, the drug improved symptoms in 30 percent of patients treated. Doctors do not know exactly how it works, but one theory is that it may repair defects that might have developed in the lining of the bladder.

The FDA-recommended oral dosage of Elmiron is 100 mg, three times a day. Patients may not feel relief from IC pain for the first 2 to 4 months. A decrease in urinary frequency may take up to 6 months. Patients are urged to continue with therapy for at least 6 months to give the drug an adequate chance to relieve symptoms.

Elmiron's side effects are limited primarily to minor gastrointestinal discomfort. A small minority of patients experienced some hair loss, but hair grew back when they stopped taking the drug. Researchers have found no negative interactions between Elmiron and other medications.

Elmiron may affect liver function, which should therefore be monitored by the doctor.

Because Elmiron has not been tested in pregnant women, the manufacturer recommends that it not be used during pregnancy, except in the most severe cases.

Diet

There is no scientific evidence linking diet to IC / PBS, but many doctors and patients find that alcohol, tomatoes, spices, chocolate, caffeinated and citrus beverages, and high-acid foods may contribute to bladder irritation and inflammation. Some patients also note that their symptoms worsen after eating or drinking products containing artificial sweeteners. Patients may try eliminating various items from their diet and reintroducing them one at a time to determine which, if any, affect their symptoms. However, maintaining a varied, well balanced diet is important.

Interstitial Cystitis Association of America
110 North Washington Street, Suite 340
Rockville, MD 20850
Phone: 1-800-HELP-ICA (435-7422) or 301-610-5300
Fax: 301-610-5308
Email: icamail@ichelp.org
Internet: www.ichelp.org

What is Interstitial Cystitis?

Interstitial Cystitis / Painful Bladder Syndrome

What is IC / PBS?

Interstitial cystitis (IC) is a condition that results in recurring discomfort or pain in the bladder and the surrounding pelvic region. The symptoms vary from case to case and even in the same individual. People may experience mild discomfort, pressure, tenderness, or intense pain in the bladder and pelvic area. Symptoms may include an urgent need to urinate (urgency), a frequent need to urinate (frequency), or a combination of these symptoms. Pain may change in intensity as the bladder fills with urine or as it empties. Women's symptoms often get worse during menstruation. They may sometimes experience pain with vaginal intercourse.

Because IC varies so much in symptoms and severity, most researchers believe that it is not one, but several diseases. In recent years, scientists have started to use the term painful bladder syndrome (PBS) to describe cases with painful urinary symptoms that may not meet the strictest definition of IC. The term IC / PBS includes all cases of urinary pain that can't be attributed to other causes, such as infection or urinary stones. The term interstitial cystitis, or IC, is used alone when describing cases that meet all of the IC criteria established by the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK).

In IC / PBS, the bladder wall may be irritated and become scarred or stiff. Glomerulations (pinpoint bleeding caused by recurrent irritation) often appear on the bladder wall. Hunner's ulcers are present in 10 percent of patients with IC. Some people with IC / PBS find that their bladders cannot hold much urine, which increases the frequency of urination. Frequency, however, is not always specifically related to bladder size; many people with severe frequency have normal bladder capacity. People with severe cases of IC / PBS may urinate as many as 60 times a day, including frequent nighttime urination (nocturia).

IC / PBS is far more common in women than in men. Of the estimated 1 million Americans with IC, up to 90 percent are women.

What causes IC?

Some of the symptoms of IC / PBS resemble those of bacterial infection, but medical tests reveal no organisms in the urine of patients with IC / PBS. Furthermore, patients with IC / PBS do not respond to antibiotic therapy. Researchers are working to understand the causes of IC / PBS and to find effective treatments.

In recent years, researchers have isolated a substance found almost exclusively in the urine of people with interstitial cystitis. They have named the substance antiproliferative factor, or APF, because it appears to block the normal growth of the cells that line the inside wall of the bladder. Researchers anticipate that learning more about APF will lead to a greater understanding of the causes of IC and to possible treatments.

Researchers are beginning to explore the possibility that heredity may play a part in some forms of IC. In a few cases, IC has affected a mother and a daughter or two sisters, but it does not commonly run in families.

How is IC / PBS diagnosed?

Because symptoms are similar to those of other disorders of the urinary bladder and because there is no definitive test to identify IC / PBS, doctors must rule out other treatable conditions before considering a diagnosis of IC / PBS. The most common of these diseases in both genders are urinary tract infections and bladder cancer. IC / PBS is not associated with any increased risk in developing cancer. In men, common diseases include chronic prostatitis or chronic pelvic pain syndrome.

The diagnosis of IC / PBS in the general population is based on

• presence of pain related to the bladder, usually accompanied by frequency and urgency
• absence of other diseases that could cause the symptoms

Diagnostic tests that help in ruling out other diseases include urinalysis, urine culture, cystoscopy, biopsy of the bladder wall, distention of the bladder under anesthesia, urine cytology, and laboratory examination of prostate secretions.

Cystoscopy Under Anesthesia With Bladder Distention

The doctor may perform a cystoscopic examination in order to rule out bladder cancer. During cystoscopy, the doctor uses a cystoscope-an instrument made of a hollow tube about the diameter of a drinking straw with several lenses and a light-to see inside the bladder and urethra. The doctor might also distend or stretch the bladder to its capacity by filling it with a liquid or gas. Because bladder distention is painful in patients with IC / PBS, they must be given some form of anesthesia for the procedure.

The doctor may also test the patient's maximum bladder capacity-the maximum amount of liquid or gas the bladder can hold. This procedure must be done under anesthesia since the bladder capacity is limited by either pain or a severe urge to urinate.

What is Endometriosis? (continued)

Why is it important to find out if I have endometriosis?

The pain of endometriosis can interfere with your life. Studies show that women with endometriosis often skip school, work, and social events. This health problem can also get in the way of relationships with your partner, friends, children, and co-workers. Plus, endometriosis can make it hard for you to get pregnant.

Finding out that you have endometriosis is the first step in taking back your life. Many treatments can control the symptoms. Medicine can relieve your pain. And when endometriosis causes fertility problems, surgery can boost your chances of getting pregnant.

How would I know if I have endometriosis?

If you think you have this disease, talk with your obstetrician/gynecologist (OB/GYN). Your OB/GYN has special training to diagnose and treat this condition. The doctor will talk to you about your symptoms and health history. Then she or he will do a pelvic exam. Sometimes during the exam, the doctor can find signs of endometriosis.

Usually doctors need to run tests to find out if a woman has endometriosis. Sometimes doctors use imaging tests to "see" large growths of endometriosis inside the body. The two most common imaging tests are:

• ultrasound, which uses sound waves to see inside the body
• magnetic resonance imaging (MRI), which uses magnets and radio waves to make a "picture" of the inside of the body

The only way to know for sure if you have endometriosis is to have a surgery called laparoscopy. In this procedure, a tiny cut is made in your abdomen. A thin tube with a light is placed inside to see growths from endometriosis. Sometimes doctors can diagnose endometriosis just by seeing the growths. Other times, they need to take a small sample of tissue, or a biopsy, and study it under a microscope.

What causes endometriosis?

No one knows for sure what causes this disease, but scientists have a number of theories.

They know that endometriosis runs in families. If your mother or sister has endometriosis, you are six times more likely to get the disease than other women. So, one theory suggests that endometriosis is caused by genes.

Another theory is that during a woman's monthly periods, some endometrial tissue backs up into the abdomen through the fallopian tubes. This transplanted tissue then grows outside the uterus. Many researchers think a faulty immune system plays a part in endometriosis. In women with the disease, the immune system fails to find and destroy endometrial tissue growing outside of the uterus. Plus, a recent study shows that immune system disorders (health problems in which the body attacks itself) are more common in women with endometriosis. More research in this area may help doctors better understand and treat endometriosis.

How is endometriosis treated?

There is no cure for endometriosis, but there are many treatments for the pain and infertility that it causes. Talk with your doctor about what option is best for you. The treatment you choose will depend on your symptoms, age, and plans for getting pregnant.

Pain Medication. For some women with mild symptoms, doctors may suggest taking over-the-counter medicines for pain. These include: ibuprofen (Advil and Motrin) or naproxen (Aleve). When these medicines don't help, doctors may advise using stronger pain relievers available by prescription.

Hormone Treatment. When pain medicine is not enough, doctors often recommend hormone medicines to treat endometriosis. Only women who do not wish to become pregnant can use these drugs. Hormone treatment is best for women with small growths who don't have bad pain.

Hormones come in many forms including pills, shots, and nasal sprays. Many hormones are used for endometriosis including:

• Birth control pills block the effects of natural hormones on endometrial growths. So, they prevent the monthly build-up and breakdown of growths. This can make endometriosis less painful. Birth control pills also can make a woman's periods lighter and less uncomfortable. Most birth control pills contain two hormones, estrogen and progestin. This type of birth control pill is called a "combination pill." Once a woman stops taking them, the ability to get pregnant returns, but so may the symptoms of endometriosis.
• Progestins or progesterone medicines work much like birth control pills and can be taken by women who can't take estrogen. When a woman stops taking progestins, she can get pregnant again. But, the symptoms of endometriosis return too.
• Gonadotropin releasing hormone agonists or GnRH agonists slow the growth of endometriosis and relieve symptoms. They work by greatly reducing the amount of estrogen in a woman's body, which stops the monthly cycle. Leuprolide (Lupron®) is a GnRH agonist often used to treat endometriosis. GnRH agonists should not be used alone for more than six months. This is because they can lead to osteoporosis. But if a woman takes estrogen along with GnRH agonists, she can use them for a longer time. When a woman stops taking this medicine, monthly periods and the ability to get pregnant return. But, usually the problems of endometriosis also return.
• Danazol is a weak male hormone. Nowadays, doctors rarely recommend this hormone for endometriosis. Danazol lowers the levels of estrogen and progesterone in a woman's body. This stops a woman's period or makes it come less often. Danazol also gives pain relief. But it often causes side effects like oily skin, weight gain, tiredness, smaller breasts, and hot flashes. Danazol does not prevent pregnancy and can harm a baby growing in the uterus. Since it can't be used with other hormones, like birth control pills, doctors recommend using condoms, diaphragms, or other "barrier" methods to prevent pregnancy.

Surgery. Surgery is usually the best choice for women with endometriosis who have a severe amount of growths, a great deal of pain, or fertility problems. There are both minor and more complex surgeries that can help. Your doctor might suggest one of the following:

• Laparoscopy can be used to diagnose and treat endometriosis. During this surgery, doctors remove growths and scar tissue or destroy them with intense heat. The goal is to treat the endometriosis without harming the healthy tissue around it. Women recover from laparoscopy much faster than from major abdominal surgery.
• Laparotomy or major abdominal surgery is a last resort treatment for severe endometriosis. In this surgery, the doctor makes a much bigger cut in the abdomen than with laparoscopy. This allows the doctor to reach and remove growths of endometriosis in the pelvis or abdomen. Recovery from this surgery can take up to two months.
• Hysterectomy should only be considered by women who do not want to become pregnant in the future. During this surgery, the doctor removes the uterus. She or he may also take out the ovaries and fallopian tubes at the same time. This is done when the endometriosis has severely damaged them.

How do I cope with a disease that has no cure?

You may feel many emotions—sadness, fright, anger, confusion, and loneliness. It is important to get support to cope with endometriosis. Consider joining a support group to talk with other women who have endometriosis. There are support groups on the Internet and in many communities.

It is also important to learn as much as you can about the disease. Talking with friends, family, and your doctor can help.

For More Information...

You can find out more about endometriosis by contacting the National Women's Health Information Center (NWHIC) at 1-800-994-9662 or the following organizations:

Endometriosis Association
Phone Number(s): (414) 355-2200
Internet Address: http://www.endometriosisassn.org/

The American College of Obstetricians and Gynecologists
Phone Number(s): (800) 762-2264 x 192 (for publication requests only)
Internet Address: http://www.acog.org/

Endometriosis Research Center
Phone Number(s): (800) 239-7280
Internet Address: http://www.endocenter.org/

coming soon: What is interstitial cystitis (IC)?, food intolerances, migraines

What is Endometriosis?

Endometriosis is a common health problem in women. It gets its name from the word endometrium, the tissue that lines the uterus (womb). In women with this problem, tissue that looks and acts like the lining of the uterus grows outside of the uterus in other areas. These areas can be called growths, tumors, implants, lesions, or nodules.

Most endometriosis is found:

• on or under the ovaries
• behind the uterus
• on the tissues that hold the uterus in place
• on the bowels or bladder

Endometriosis rarely grows in the lungs or other parts of the body. This "misplaced" tissue can cause pain, infertility (not being able to get pregnant), and very heavy periods.

What are the symptoms of endometriosis?

Pain is one of the most common symptoms of endometriosis. Usually the pain is in the abdomen, lower back, and pelvis. The amount of pain a woman feels does not depend on how much endometriosis she has. Some women have no pain, even though their disease affects large areas. Other women with endometriosis have severe pain even though they have only a few small growths. Symptoms of endometriosis include:

• Very painful menstrual cramps
• Pain with periods that gets worse over time
• Chronic pain in the lower back and pelvis
• Pain during or after sex
• Intestinal pain
• Painful bowel movements or painful urination during menstrual periods
• Heavy and/or long menstrual periods
• Spotting or bleeding between periods
• Infertility (not being able to get pregnant)
• Fatigue

Women with endometriosis may also have gastrointestinal problems such as diarrhea, constipation, or bloating, especially during their periods.

Who usually gets endometriosis?

About five million women in the United States have endometriosis. This makes it one of the most common health problems for women.

In general, women with endometriosis:

• get their monthly period
• are 27-years-old on average
• have symptoms for two to five years before finding out they have the disease

Women who have gone through menopause (when a woman stops having her period) rarely still have symptoms.

What can raise my chances of getting endometriosis?

You are more likely to develop endometriosis if you:

• began getting your period at an early age
• have heavy periods
• have periods that last more than seven days
• have a short monthly cycle (27 days or less)
• have a close relative (mother, aunt, sister) with endometriosis

Why do patches of endometriosis cause pain and health problems?

Growths of endometriosis are almost always benign or not cancerous, but still can cause many problems. To see why, it helps to understand a woman's monthly cycle. Every month, hormones cause the lining of a woman's uterus to build up with tissue and blood vessels. If a woman does not get pregnant, the uterus sheds this tissue and blood. It comes out of the body through the vagina as her menstrual period.

Patches of endometriosis also respond to a woman's monthly cycle. Each month the growths add extra tissue and blood, but there is no place for the built-up tissue and blood to exit the body. For this reason, growths tend to get bigger and the symptoms of endometriosis often get worse over time.

Tissue and blood that is shed into the body can cause inflammation, scar tissue, and pain. As the misplaced tissue grows, it can cover or grow into the ovaries and block the fallopian tubes. This can make it hard for women with endometriosis to get pregnant. The growths can also cause problems in the intestines and bladder.

next post: continuation of "What is Endometriosis?"

How I Got Diagnosed with Endometriosis and IC

I started my period at age 9, and things were fine until I got into 7th grade. I had horrible cramps; I would have to go to the nurse's office and be in the bathroom for a long time, going back and forth between sitting on the toilet and sitting on the floor with my head over the toilet, throwing up. I would have to go home early several days each month. I was started on birth control pills, and then everything calmed down, I just had some cramps, but no more throwing up.

Then, in June 2006, everything just suddenly changed. I was on a mission trip with my church, and one morning I woke up with terrible pain on my lower right side. No one believed how bad the pain was. They told me to take Tylenol, Advil, Ibuprofen, whatever I could to lessen the pain; nothing helped. The mission trip was to South Dakota, but we were staying in Nebraska, about 45 minutes from the border. We traveled from Virginia to South Dakota, stopping at churches along the way to stay overnight. It took 4 days to get there. The group was actually 2 mission teams, one youth and one for adults/families. When we first got to South Dakota, that is when the pain first started, and the chaperones told me to take the different medicines. When it was time for the youth team to go to Nebraska, I was still having a lot of pain. My pain kept getting worse. The chaperones told me not to talk to my peers about it, and they thought I was just looking for attention.

One day, after we got back from doing our mission work, which was painting a house, we had a rest time. I went to the bathroom, and there was blood in my stool. I went back to the room and lay down on my air mattress. I felt like I had a fever, and the pain was really bad. Some of the other girls were in and out of the room, and I asked them to feel my forehead to see if I felt warm. They said I did. (I kept telling my youth leader that I didn't feel well, that the pain was really bad, but he and the other chaperones didn’t know what to do and didn’t believe me). I then told the girls that I had gone to the bathroom and had some blood in my stool. So, b/c my youth leader and the other chaperones didn't believe me, some of my friends went to find one of the staff members. He called 911, and it was a police car that took me to the hospital. The doctor drew some blood, and did a rectal exam. Everything came back negative. They just told me to try to eat fruits and vegetables. Well, that was kind of hard to do b/c the place we were staying at, different groups had to cook the food, and sometimes there were fruits and vegetables, sometimes there weren't, and on the way home, we stopped at fast food restaurants.

When we got home, I was still in pain. I kept going to different doctors, had CT scans, ultrasounds, MRI's, etc. I went to my nurse practitioner, and she said that I had a small cyst on my left ovary. She also said that I could have endometriosis, but that my answers to her questions made her believe that it was not likely that I had it. I went off to college in PA, and went to the ER 2-3 times, more blood tests, ultrasounds, etc. When I was home for fall break, I had a colonoscopy done. That came back negative. I went back to school, and saw a gynecologist, he said it was possible that I had endometriosis, and said he could start me on Lupron, or do laparoscopy. Well, I decided neither.

When we moved to Alabama, we found a gynecologist who was willing to do laparoscopy. March 1st was my first lap. He diagnosed me with endometriosis, and removed the cyst (well, actually he punctured the cyst in the process of trying to remove it, so he drained the fluid and removed the cyst wall), and removed as much of the endo as he could. I went back to school, and the pain came back a week later. At my post op appointment in April, he said that I should try Lupron. I gave it some thought, and decided to give it a try. I had 3 injections, and during that time, I had grown another cyst. When I came home for the summer, I decided that I would stay in Alabama and go to community college for a year or two. I kept having lots of doctors' appointments and went to the ER 2 times.

Finally, in August, I went to a doctor that was recommended to me by a friend who lives about 30-45 minutes away from me. The doctor was great. He really listened to me about my pain, and what I wanted him to do. I had a 5cm cyst on my left ovary, so he said that he would remove that. I also wanted him to remove my appendix, just to be on the safe side. He also said that I possibly had a hernia, and a tilted uterus. He would also remove as much endo as possible. I was tested for IC, and I tested pretty positive. Originally, my surgery was scheduled for September 19th. Then, the following two weeks, my pain increased so much. I was able to get in to see my doctor again. They did an ultrasound to check the cyst, and to everyone’s surprise, it was gone. The doctor guessed that it had probably ruptured, and that was possibly a lot of the pain that I was having. I had been hoping that the surgery could be moved up sooner. Well, my wish came true. My doctor said that he could see that I was in a lot of pain, so he said he could try to move my surgery up to September 5th, and he was able to do that. So, I had my surgery, they removed my appendix, they removed as much endo as possible, they diagnosed me with mild IC, they also found Pelvic Congestion Syndrome. I indeed had a hernia, so they repaired that. They also repositioned my uterus. I stayed in the hospital overnight, partially b/c they did so much, and partially b/c it was so late in the afternoon and it is 2 hours away from where I live.

So, in short, I've had countless blood tests, ultrasounds, CT scans, MRI's, a colonoscopy, 2 laps, lots of bladder instillations. I was diagnosed with Endo at 18, IC and food intolerances to wheat, gluten, and dairy at 19. I've tried many bcp's, Provera, Lupron for the Endo, and Elmiron for the IC. I stopped taking Provera, and was put on Seasonique at the end of May. I am now 20, and began having migraine headaches about 3 weeks ago. I've tried Axert, Ultracet, Naproxen, but nothing has really worked. I'm now off of Seasonique and going back on Ovcon, which is the first bcp I was on. I really hope that the migraines go away soon, and that they don't continue on Ovcon, and that nothing else happens (like the Endo coming back, etc).


upcoming posts: what is endometriosis? what is interstitial cystitis (IC)?, food intolerances, migraines

September 10th, 2008

So, I though I would try this blogging thing out. I use Facebook and Myspace, but I kind of need to have a journal-type thing also.

Basically, there won't be much in this first post, just some general info. I will post more later.

I have endometriosis, interstitial cystitis, food intolerances to wheat, gluten, and dairy, and most recently diagnosed with migraines.

Traveling and going out to restaurants and picnics and other events like that are hard. With the interstitial cystitis (IC), I always have to know where the nearest bathroom is located. Eating out is hard not only because of the food intolerances, but also because of the endometriosis and IC. So, I usually end up ordering a salad, and perhaps plain chicken.

Well, that's all for now. I have to go eat dinner (which coincidentally is chicken) and then go to work. I work at a church nursery Sundays and Wednesdays. The kids are good, most of the time.

I will post again either later tonight or tomorrow, whenever I get a chance. I am also taking 4 college classes, so I have homework. I also take 3 dance classes. So, my schedule is pretty full. The only days I have "off" are Friday and Saturday.

More to come.....