Dealing with Chronic Pain

Endometriosis symptoms

Endometriosis is a condition that effects about 20% of women. It is a disease that causes chronic pain, emotional torment, and can also lead to infertility. There is no known cause or cure for endometriosis. Treatments are available that can temporarily provide relief, however, none are long term. With such limited resources, all that is left is coping.
When a woman is diagnosed with endo, she may find herself frustrated and angry. She begins to wonder what she did to cause this. The pain continues and she finds herself going through cycles of surgeries and medications. Meanwhile, she is becoming a mental and physical wreck- full of anger, frustration and chronic pain. This cycle keeps repeating and eventually leads to anxiety and depression. The body can only handle so much stress before it wears down the spirit causing depression. The cycle has to be stopped.

There are several ways women cope with endometriosis. You will find that some may work for you while others may not. Experiment and build a “get well” program for yourself.

– Stop feeling like a victim. Realize that you did nothing that caused you to acquire this disease and that you are not responsible for what it has done to your life. It is the endo, not you, causing it.

– Find an outlet to release all of your negative emotions and feelings. Write in a journal, talk to someone, create poetry or art. Find a way to turn bad energy into good.

– Surround yourself with inspirational thoughts. Hang up your favorite poem or quote and read it when you need encouragement.

– Search for support. Find others to talk to that have the same condition. This can be found in a support group, web-site, or official association.

– Learn to focus on you. Treat yourself to a massage, take a bubble bath, meditate- learn to try new things.

– Become an active participant in your health care. You will feel better emotionally when you realize that you are in charge of your health.

– Become an advocate. Educate others about endometriosis. The more awareness about the condition, the better.

– Be optimistic. Visualize good things and do not focus on the bad. Of course you should be realistic, but try reversing the focus of your thoughts.

– It is unhealthy to hold tension in. If you need a good cry, you need a good cry. It is better to let it all out than to allow it to build up.

There is no easy way or a prescription for coping. Each person is different and will deal with chronic pain and emotional distress in their own way. As with any condition, some days will be better than others will. If you start implementing some of the ideas above, you just may find that you are having more good days than bad.

Author’s name omitted by request

Title: Endometriosis symptoms
Description: Endometriosis symptoms:a disease that causes women chronic pain and sometimes infertility. With no cure, women must learn to cope.

ENDO 101

“ENDO 101:”
The Basics

You’re laying in the recovery room after having a laparoscopy and your head is spinning. Your world is a foggy place and all you know is, you hurt. In the midst of this confusion, your doctor pops in and says, “great news! We found the reason for your pain. You’ve got Endometriosis. See you next week at post-op!” When the groggy feeling lifts and you start to regain your strength, you wonder, “what on earth is Endometriosis?!”
The Basics
Endometriosis is a disease affecting an estimated 77 million women and teens worldwide(1). It is a leading cause of infertility, chronic pelvic pain and hysterectomy. With Endometriosis, tissue like the endometrium (the tissue inside the uterus which builds up and is shed each month during menses) is found outside the uterus, in other areas of the body. These implants respond to hormonal commands each month and break down and bleed….

However, unlike the endometrium, these tissue deposits have no way of leaving the body. The result is internal bleeding, degeneration of blood and tissue shed from the growths, inflammation of the surrounding areas, expression of irritating enzymes and formation of scar tissue. In addition, depending on the location of the growths, interference with the bowel, bladder, intestines and other areas of the pelvic cavity can occur. Endometriosis has even been found lodged in the skin and at other extrapelvic locations like the arm, leg and even brain.

The presence of disease can only be confirmed through surgery like the laparoscopy, but it can be suspected based on symptoms, physical findings and diagnostic tests.

Often, younger women and teens who present to their healthcare providers with symptoms are dismissed and told they have PID or that they are too young to have Endometriosis. This is not the case. Endometriosis has been found in autopsies of infants(2) and in menopausal women. Endometriosis has even been found in men!(3)

Contrary to common misconceptions about the disease, there is no cure. There are, however, several methods of treatment which may alleviate some of the pain and symptoms.

Symptoms include: chronic or intermittent pelvic pain
dysmenorrhea (painful menstruation is not normal!)
infertility/ miscarriage(s) / ectopic (tubal) pregnancy
dyspareunia (pain during intercourse) / pain after intercourse
backache
leg pain
painful intercourse
nausea / vomiting
abdominal cramping
diarrhea
rectal pain
constipation
painful bowel movements
blood in stool
rectal bleeding
sharp gas pains
bloating
tailbone pain
blood in urine
tenderness around the kidneys
painful or burning urination
flank pain radiating toward the groin
urinary frequency, retention, or urgency
hypertension
coughing up of blood or bloody sputum, particularly coinciding with menses
accumulation of air or gas in the chest cavity
constricting chest pain and/or shoulder pain
shoulder pain associated with menses
shortness of breath
collection of blood and/or pulmonary nodule in chest cavity
deep chest pain
pain in the leg and/or hip which radiates down the leg
painful nodules, often visible to the naked eye, at the skin’s surface…can bleed during menses and/or appear blue upon inspection
fatigue, chronic pain, allergies and other immune system-related problems are also commonly reported complaints of women who have Endo. Remember, it is quite possible to have some, all, or none of these symptoms with Endometriosis.
Because Endo symptoms are so inconsistent and non-specific, it can easily masquerade as several other conditions. These include:

adenomyosis (“Endometriosis Interna”)
appendicitis
ovarian cysts
bowel obstructions
colon cancer
diverticulitis
ectopic pregnancy
fibroid tumors
gonorrhea
inflammatory bowel disease
irritable bowel syndrome
ovarian cancer
PID (pelvic inflammatory disease)

What does it look like?
Endometriosis can present in almost any color, shape, size and location. This includes clear, microscopic papules that can lodge themselves on the underside of organs or beneath the skin. Unfortunately, physicians who are less trained to recognize all manifestations often miss diseased areas, instead searching for visible, common “powder-burn” type lesions on the reproductive organs. In reality, the lesions can be black, red, blue, brown, clear, and raspberry colored, and microscopic in size. The lesions can be spread throughout the entire abdominal region, bowels, bladder, and other areas, and may not be visible without proper magnifying equipment.

Is it Fatal?
The disease itself is classified as “benign.” However, recent studies indicate that women with Endometriosis may have a slightly greater risk of developing cancer of the breast or ovaries and a greater risk of cancers of the blood and lymph systems, including non-Hodgkin’s lymphoma. Researchers caution that the cause of the relationship is unclear. The association may be due to drugs or surgery used to treat the condition rather than Endometriosis itself, and only women with the most severe form of the disease may have the excess risk, according to a report in the American Journal of Obstetrics and Gynecology(4) .

According to lead study author, Dr. Louise Brinton of the Cancer Epidemiology and Genetics Division of the National Cancer Institute in Bethesda, Maryland, the results are “provocative in suggesting that women with Endometriosis may experience elevated risk of certain cancers.” In the study of 20,686 Swedish women hospitalized for Endometriosis, the women had a 20% greater risk of developing cancer overall, particularly of the breast, ovaries and the blood and lymph cells, during an 11-year period. The women actually had a lower risk of cancer of the cervix. “The Endometriotic tissue and its surroundings will be enriched in growth factors and cytokines that might have a deleterious effect on the growth regulation of other cells, some of which may be in distant organs – for example, breast tissue,” Brinton wrote. The growth factors might act as carcinogens, thus promoting cancer.(5)

There are other possible explanations as well. Women with Endometriosis are also more likely take certain drugs, such as Progestagens and are more likely to have had their ovaries or uterus removed, another factor that influences hormone levels, and possibly cancer risk. It is also possible that women with Endometriosis may be screened more often for breast cancer and therefore be more likely to be diagnosed with the disease. Endometriosis has also been linked to a lack of physical activity and to exposure to the environmental contaminant, dioxin. These two factors might be to blame for the cancer risk, rather than Endometriosis.

Findings of one of the largest surveys conducted of over 4,000 Endometriosis patients in the United States and Canada(6) have indicated possible links to other serious medical conditions, including a 9.8% incidence of melanoma, compared with 0.01% in the general population, a 26.9% incidence of breast cancer, compared with 0.1% in the general population; and an 8.5% incidence of ovarian cancer, compared with 0.04% in the general population. Women with Endometriosis who participated in the survey also had a greater incidence of auto immune conditions and Meniere’s disease.

What are “Stages?”
Your surgeon determines the extent and severity of your disease once confirmation of diagnosis is made through both sight of the lesions as well as biopsy results(7). Staging has been defined by the American Society for Reproductive Medicine (formerly the American Fertility Society), with criteria based on the location of the disease, amount, depth and size. These factors are all graded on a point system and classification is thus determined. The first classification scheme was developed in 1973, but since then it has been revised and refined 3 times for a more precise method of documentation. As of 1985, the stages are classified as 1 though 4; minimal, mild, moderate, and severe. Stage of the disease is not indicative of level of pain, infertility or symptoms. A woman in Stage 4 can be asymptomatic, while a Stage 1 patient might be in debilitating pain.

How is it Treated?
Endo can be treated in many different ways, both surgically and medically. Most commonly, surgery will be performed during which the disease will be excised, ablated, fulgarated, cauterized or otherwise removed, and adhesions will also be freed. When adhesions are present, a women’s organs are literally bound together.

It is extremely important that a woman with Endo obtain treatment from a highly trained Endo treatment provider. There are many inexperienced physicians out there, sadly enough, who will a.) miss the disease altogether and not perform biopsies on tissue samples to confirm the diagnosis; b.) will confirm the presence of disease but make no attempt to remove it during surgery; or c.) will make the diagnosis, but will remove it in an incomplete or ineffective manner (such as ablation, which has been shown to be relatively ineffective on deep lesions). Doing so will unfortunately (as has been my experience and that of other survivors of the disease) allow the disease to flare again in a relatively short time. This vicious cycle only requires more surgery thereafter to once again lyse adhesions and treat the disease. Starting disease management with an Endo expert in the beginning of treatment can prevent repeat surgeries and ineffective treatment measures.

Surgeries include but are certainly not limited to: the laparoscopy; the laparotomy; presacral and uterosacral neurectomies – primarily done to lessen pain associated with Endo, where the nerves transporting sensation to the uterus are cut; and various levels of hysterectomies, where some or all of the reproductive organs are removed. It should be stressed that this method will only relieve the symptoms associated with growths on the reproductive organs, not the bowels or kidneys and related areas where Endo can be present.

There are several drugs utilized either alone or in combination with surgery. These include contraceptives, GnRH agonists, and/or synthetic hormones. GnRH agonists are commonly used on women in all stages of the disease and may sometimes have serious side affects. Be sure to inform yourself about all aspects of any drug before undergoing therapy with it.

GnRH (gonadotropin releasing hormone) analogues are classified into 2 groups: agonists and antagonists. Agonists are commonly used in the treatment of Endo by suppressing the manufacture of FSH and LH, common hormones required in ovulation. When they are not secreted, the body will go into “pseudo-menopause,” stalling the growth of more implants. However, these are again only stop-gap measures that can be utilized only for short term intervals, and the key word here is suppression. Once the body returns to it’s normal state, the Endo will again begin to implant itself.

Commonly Prescribed medications include: Leuprolide Depot – “Lupron” (Leuprolide Acetate) – administered as subcutaneous injection
Synarel (naferalin acetate) – administered as a nasal spray

Zoladex (goserelin acetate) – a subcutaneous implant placed into the abdominal wall
Suprefact (buserelin acetate) – also administered as a nasal spray
Danazol, a synthetic male hormone commonly marketed as Danocrine or Cyclomen
Depo-Provera (medroxyprogesterone acetate)-injectable form of progestins
Provera (same as above; administered in pill form)
Any combination estrogen/progesterone oral contraceptive recommended by your doctor

For treatment updates, please see “Endometriosis 2000 & Beyond: the Future of Research & Treatment.”

Living with a Chronic Illness:
While it cannot currently be cured, it is important to understand that Endometriosis is a disease that can be managed. It does not have to own you. Finding the right surgeon and choosing the right approach to treat your disease is crucial. Whether it be excision surgery, medical therapy or alternative healing that appeals to you and works to relieve your symptoms, the answers are out there. And remember…you are not alone.

For more information and support, please visit the Endometriosis Research Center on the web or call the ERC toll free at 800/239-7280.
Copyright (c) by Heather C. Guidone. All Rights Reserved. Do not Reproduce Without Express Permission From Author.

Dorna’s Story – Coping with Lung Endometriosis

It was about 4 years ago and me and my then boyfriend (now husband) were play fighting when all of a sudden I started to cough up blood, We thought nothing of it at the time but exactly 4 weeks later the same thing happened again, when I went to see my GP he told me that I was too young to have anything serious and to go home and stop being so silly.

Every month the same thing happened I coughed up blood, and every time I did I went to A&E they treated me for blood clots which meant a week in hospital and that didn’t stop it they then got so fed up with me turning up in A&E they started treating me in the waiting room in front of the usually Saturday night drunks and druggies.
I eventually managed to get an appointment with a chest specialist after 8 months of coughing up blood and as soon as I sat down his first question was did I cough up blood during my periods, until that point it hadn’t registered in my head that to two ends were connected in any way.

It then took several months and several different scans from radiation to Iodine to try and track this endo, unfortunately it could only be done on the first day of my period and the NHS the way it is you cannot ring up on the day to arrange a scan, so it was all down to guess work and we never managed to get it on the exact day, so I was referred to a gynaecologist who did a laparoscopy and followed up with Danazol.

I had a massive allergic reaction to Danazol and was put onto Zoladex. I only managed 4 months on the Zoladex as it made me ill and what I didn’t realise until I spoke to my brother (who makes Zoladex) I was being given the male version of Zoladex without any hormone treatment to prevent osteoporosis. After a few months respite from treatment I realised I was still in excruciating pain and went back to the gynaecologist to be told that as far as he was concerned I had received treatment and was cured if I was still in pain I should have a baby !!

I went back to my GP to ask for a referral as I was not happy with his attitude or diagnosis, this is when she broke the news to me that the gynaecologist had left the endo on my left tube as it was too difficult to remove.

This is when I was referred to Miss Rose who is a specialist in Endometriosis, and within months she had me in for a laparoscopy and removed everything she could see with a laser and then put me on a continuous course of the pill, unfortunately this did not agree with me and about 12 months ago I was put onto Provera, which I have to say is a miracle drug in as much it has been the first time in years that I have lived without constant pain, unfortunately the downside is I have piled on the weight gaining 3 stone, and it would appear that the pain is returning. I am due to go and see Miss Rose next month but I am not holding out much hope.

As far as surgery goes for endo on the lung, I think they try to treat the cause rather than the effect so they eliminate the endo in other areas first and then I think if I had continued to have chest pain and coughing up of blood then they would have had to re think about the lungs, unfortunately the endo in the lungs only appears on scans on the first day of your period so unless you are as regular as clockwork it is hard to locate.

I have to say though that my husband has been a God send he’s been there throughout and has stood by me when a lesser person would have walked away, and in answer to your question of information unfortunately this seems so rare that I have not found any information or anyone else in my situation.

An Update on Dorna: October 2001

I have since returned to Miss Rose and am now back on the Zoladex but this time I am taking the three monthly injections and HRT (unlike last time when I was not given HRT !!) so the side affects are a lot less very few hot flushes etc. And hopefully next year after my February injection Clive and I are hoping to start a family I will keep in touch as to what happens and will have some good news by the end of next year.

Dorna

What is Endometriosis?

Endometriosis is when the endometrium, tissue that lines the inside of the uterus, is found outside of the uterus in other ares of the body, except the spleen. The growths respond to normal hormonal surges, to grow or shed, but the blood generated has nowhere to go, so causes pain, inflamtion, and adhesions.

Endometriosis tissue also generates small amounts of hormones themselves thereby meaning they continue to grow very slowly fuelling themselves – even after treatment for hormones etc..

Pulmonary Endometriosis Contributed by debi9topaz

I was diagnosed with endometriosis in 1991. I had suffered many years before I had my surgury. I then had three children immediately after the laparoscopy. Since then, I have had pain only the first two days of my menses. A heating pad and Advil would help get me through.

Around 5 months ago, I started to cough up blood. I was really scared. I smoke and assumed that something was terribly wrong with me. I went to see my MD and he told me to see a pulmonologist. (please don’t mind the spelling). I started to notice that I would only cough up the blood during the menses. I mentioned it to the doctor and he said that it is rare and he felt it must be something else. After a CT and two broncscopy’s, he has determined that I have Catamenia Hemoptysis (which means….endometriosis bleeding in the pulmonary area). He was unable to find anything wrong with my lungs.

Over the next month, I am going to have another CT (with contrast) and he wants me to get samples of my blood that is coming from the lungs. He will have these tested for endometriosis tissue.

He also would like me to go to a hospital in PA. University of PA Hospital. I have spoken with two other GYN’s and the all say the same thing. I must go to a learning Hospital. They would be able to help complete the diagnosis and find a solution.

Based on what I have been able to find; meds or a hysterectomy are the only choices.

If anyone out there is going through this or knows anyone else who is, please email me DNegri@aol.com or leave me a messege on this site. Thank you.

My story Contributed by Pingu

When I was 14 and had started my periods I had projectile vomiting and had to have at least 2 days off school each month. My mum then took me to the doctors and I was put on the contraceptive pill and I was still 14.

10 years later my GP thought it would be a good idea for me to come off the pill just to clear my system out because I was put on it at such an early age. Within 2 months I was admitted to hospital with severe abdominal pain. They decided to do a lap, I had now had 3 months off work, I had my lap and was diagnosed with endo. I was then put on the contraceptive pill. From the time I was in hospital to when I was diagnosed was 4 months, work were not very good about the time I had off and by november which was 2 months after I was diagnosed but the pill was not working. I had to go to a tribunal and my employment was stopped and this was with a goverment run company and I had been with them 8 years, I had no energy to fight so I let it go.

The consultant kept changing my pill but nothing worked so they decided to put me on zoladex for 6 months, the first 2 months were so painful but after that it seemed to ease I was on the floor in pain as much which was good.

But I still had a pain on my right ovary, but my consultant kept saying it was in my head because the zoladex have stopped my periods.

I kept going back and after the zoladex I was put on depo-provera, the contraceptive injection, that was in August 2000.

The consultant said that all the pain I was getting was in my head and in January 2001 I was discharged, they said they could do no more for me.

April that year I was rushed into hospital and I had my appendix removed but there was nothing wrong with it, so I had the pain I went in with and the appendix pain I went in with to cope with.

They decided I should see the gynae again and I was put on a list for a laparoscopy.

I went in for day surgery and had my pre-med and they decided that they were not going to operate because they wanted to laser the endo out if there was any and that day they didnt have the equipment.

So i went back 6 weeks later and was at my pre-assessment and I said exactly the same and they decided not to do it again but refer me to a bowel specialist again, because it could be irritable bowel.

I then moved away from the area, and had to start all over again. I moved October 2001 and by June 2002 I had seen the consultant 4 times and had diathermy. I went through a rough time getting well but even though I went through all this I had found a consultant that listened and that was great because even though it was hard work I felt better because I had found a consultant on my side, I go back on the 19th August and decide which way to go from there.

What I’ve learn’t from this is that there are good consultants out there and they do make all the difference, and yes I still get pain but inside my head I feel a lot better, because someone is finally listening and believing

Chapter one: The beginning Contributed by AdrianaM

Hello,

My pain started last April 2001.

I woke up one morning with severe pain on my side unable to get up from bed. Pain sooo severe that i grind my teeth just able to get to the phone to call work that i won’t be in. After an hour or two massaging my side i was able to get aspirin and pain relievers. Only that it helped for awhile. after three days in pain i got my paycheck and was able to go to my doctor where infact i pay in cash. (making this story short) (click for more)

My doctor prescribed muscle relaxers and upped my anti-depressants. a week later i went back. pain still persisted. I cried in pain and showed her(doctor) exactly where my pain is. she looked at me asked a couple questions and shook her head and said “I don’t know what it is”. from there i knew she couldn’t help me anymore and went to OBGYN.

There, i was tested, with blood tests, pap smears, abdomen ultrasounds and pelvic. only to find out that i had a fatty liver. (din’t help relieve the pain) She got me on meds (darvocet, tylenol 3, Vicodin). Only one that did help is vicodin.

(my pain is located on my right lower pelvic side. Pain running down my right leg, like needles or lightning running up and down. And lower back pain and some groin pain too.)

Now of months of pain and missing work part of the time i got fed up with taking many pills. So i stopped. Also becuase i couldn’t afford it anymore (no insurance). I was seeing a chiropractor for treatment but even that got expensive. Then on November 2001, i lost my job. no income, no meds, but still pain on my side that no one could tell me what it is.

Going back too my obgyn in January 2002, she recommended lapcrospy (?), neurologist, cat scan, other test done but with no funds coming in i couldn’t afford it. She recommended it could posibly be endometriosis. but with out the test she can not make a diagnosis.

After seeing another OBGYN, once on trial dissability, i was able to afford meds and asked to up the dosage to Vicodin es. After the exam he suggested laprocrospy(?) that it can be Endometriosis. But test should be done. I’d asked him what can i expect? What are my options?
1=basicly more pain that can be treated with medication.
2=Surgery, but no garuntee that the pain will go away.
3=Wait til menopause.

But a good chance of being infertile…..being 29 years old and no children. I would at least like to have a child. (he then recommends no surgery).

It’s July 15, i only have 2 pills left, saving them for when i do need it. With no job, no money, barely paying my bills with one day jobs.

I am tired of this pain that starting to get to me again. I feel like chopping off my right leg and bangin it to floor in order to feel another kind of pain.

It’s frustrating when your family thinks that i am being lazy or faking it.

It’s frustrating when i am with my friends and i can’t sit for long time or can’t run and play or when i get moody. Sure they understand but i don’t know as to…. why me?

As i sit here in pain only thinking of lying down which helps sometimes. Only thinking that tomorrow is another day of pain and how would i handle that. Dreading it.

Thank you for reading my story. As it will continue…..

until then good night!
Adriana

Conclusions that may be drawn from the Endosupp 2002 Questionnaire results

The majority of women who suffer from Endometriosis and are diagnosed with it or seek online information or support for Endometriosis are between 20 years old and 39 years old.
It should be noted that this age-range is affected by the age of

the majority of Internet users – studies show that men and women above the age of 35 tend not to utilise the Internet as extensively as those ages before 35 (this figure is improving all the time).

The majority of respondents were from the UK, this is due to many factors, the questionnaire was publicised both in the UK and in the USA on official message boards and mailing lists, however the UK community tend to have a more focused approach with many sites available for messaging, live chats etc. This led to a faster and more widespread response from the UK than from any other country. We are seeking ways of publicising the next questionnaire further.

The majority of women have been diagnosed for 1 to 5 years, this may be because women who have been diagnosed for less than a year are still learning about Endometriosis and have not yet found online resources to help them and so they haven’t learnt about the questionnaire. The drop in numbers for people diagnosed above 6 years may be because these people fall into the over 35 range and may not use the internet.

On the subject of other medical condition people suffer from several conditions stand out as having a good possibility of being closely linked to Endometriosis. Ovarian Cysts formed a massive 39 percent of other conditions that exists with Endometriosis; this may indicate that any woman who has been diagnosed with Ovarian Cysts may have Endometriosis, especially if the woman suffers from one or more of the other frequent conditions. Migraines feature highly, this is probably due to the pain and stress induced in many women by Endometriosis and probably cannot be taken as a condition linked to Endometriosis as in today’s lifestyle so many aspects can trigger off migraines. On the other hand IBS and Depression do seem to be symptoms that many women suffer from with Endometriosis. Many Endometriosis sufferers were initially diagnosed with IBS, this would indicate that Ovarian Cysts, combined with IBS – both of which can lead to depression being diagnosed – are strong indications that Endometriosis may be involved.

The symptoms that women have with Endometriosis was by far the largest ranged, but some results stand out. These symptoms could(or should) be taken as indications that a women may have Endometriosis and that potentially more diagnosis should be undertaken to ascertain if this is the case.

Fatigue is the biggest symptom; unfortunately it can be brought on my many aspects of modern life and on its own cannot be taken as a good indication. However what is apparent is that the community could benefit in help in dealing with fatigue.
Back Pain is present in a surprising number of women with endometriosis, this is another area that more information needs to be made available to Endometriosis sufferers in order to help people cope with it.
Headaches are present in many women, this is probably due to the indirect effects of Endometriosis. Fatigue and Back Pain coupled with Depression are most likely major contributors to this.
Many women suffer from bloating, from the results of the questionnaire this appears to be a good indication of Endometriosis with over 75 percent of responders suffering from it. Along side this Pelvic Pain and Painful Bowel movements along with constipation appear to be linked to Endometriosis.
A strong link is apparent between painful sex and Endometriosis, the figures may be higher than reported due to the personal nature of the question.

For more information look at the results page on www.endosupp.com.
If you want more detailed information about the results you can send an email to webmaster@endosupp.com asking for the information you requires, if you can tell us why you want the information we will respond as soon as we can.
N.B. All information divulged would be without any information that could identify the respondents in any way.

Endo and the Bowel

BOWEL ANATOMY 101

The intestines (bowel) are made up of two basic parts, the small intestine and the large intestine. The small intestine is about 9 feet long and the large intestine is about 3.5 feet long. The small intestine connects the stomach to the large intestine. The small intestine fills the area from the from the bottom of the ribs to the top of the uterus. It has no set course and looks a bit like a bunch a spaghetti. The large intestine connects the small intestine to the anus. From the anus the large intestine follows a course behind the vagina, cervix and uterus, and makes an upside down “U”, up the left side of the body, across the upper abdomen just below the ribs and down the right side of the abdomen ending near the hip bone on the right. The appendix is a small worm like structure projecting off of the large intestine close to where the large and small bowel connect. The contents of the small bowel are primarily liquid while those of the large bowel are primarily solid. The bowel wall is made up of three basic layers; (1) the serosa, (2) the muscle wall and (3) the mucosa. The serosa is outside lining of the bowel wall. It is very thin, similar to saran wrap. Most of the bowel wall is made up of muscle. This is the middle layer. The inside lining of the bowel is called the mucosa and is also quite thin…


ENDOMETRIOSIS OF THE BOWEL

Endometriosis has been reported to grow in almost every organ in the body outside of the reproductive organs. The bowel is the most common non reproductive organ involved with endometriosis.

INVASION

The degree of invasion of the bowel wall by endometriosis is one factor that will determine the type of symptoms that the patient will experience. If the bowel endometriosis is superficial, involving only the outside serosal surface, the most common symptoms are bloating, nausea and loose stools with menses. At the other extreme, if the endometriosis has invaded all the way through the bowel wall including the inside mucosa, then the patient will usually experience rectal bleeding with her period. While it is common for the endometriosis to invade through the outside serosa and the middle muscle wall, it is unusual to invade through the inner mucosal layer. This probably accounts for the high failure rate of barium enemas and colonoscopsies in diagnosing bowel endometriosis. The location of the bowel will be the primary determining factor of the type of symptoms when the muscle wall of the bowel is involved with endometriosis.

LARGE BOWEL

The pelvic portion of the large bowel (the rectum and the sigmoid colon) is the most commonly involved part of the intestine. The close proximity of this portion of the bowel to the vagina and cervix often results in painful intercourse. Bowl movements can also be very painful since the bowel contents are solid in this portion of the bowel. The portion of the intestine where the large and small bowel connect is located in the area between the belly button and the right hip bone. This is in the same area as the appendix. Involvement of the bowel in this area or the appendix can result in right sided pain. Bowel endometriosis can also result in adhesions (scar tissue). These adhesions can involve other loops of bowel resulting in a partial obstruction (blockage), the ovary, fallopian tube or even the ureter. These adhesions can also result in pain. Endometriosis of the large bowel rarely results in obstruction of the bowel.

SMALL BOWEL

Endometriosis of the small bowel usually results in bloating and pain which is associated with eating. Often patients with small bowel endometriosis have restricted the amount and type of foods that they eat. The symptoms are slowly progressive over time and the patient may not even realize the extent to which she has altered her diet. Small bowel endometriosis often results in a partial bowel obstruction. As the bowel swells following a meal the bowel kinks, and like a kinked garden hose the contents do not get through until enough pressure builds up to push by the narrowed portion.

TREATMENT OF BOWEL ENDOMETRIOSIS

All patients undergoing surgery should have a preoperative bowel preparation. It is impossible to tell preoperatively if bowel endometriosis is present. The microscope and the laser are wonderful surgical instruments for treating bowel endometriosis. This combination provides the magnification and precision necessary for me to remove the endometriosis from the bowel, without having to perform a bowel resection in the vast majority of cases. Situations in which the crude electrosurgery would result in the need for bowel resection are easily handled by microscopic laser surgery. This is true for both the large and small bowel. In the rare cases that the endometriosis has completely replaced a section of bowel, the diseased segment of bowel is removed by one of the bowel surgeons of my team and the normal ends of the bowel are reconnected.

THE TEAM APPROACH TO THE TREATMENT OF ENDOMETRIOSIS

Endometriosis is a dreaded disease which has no respect for the boundaries of the various medical subspecialties. For example: The urologist may help if the endometriosis involves the bladder or the bowel surgeon may help if the bowel is involved or the thoracic surgeon may help if a thoracoscopy is needed to diagnose and treat endometriosis of the lung. Proper preoperative evaluation and preparation in conjunction with the team approach should result in the complete treatment of the individual with endometriosis.

NON SURGICAL TREATMENT OF BOWEL ENDOMETRIOSIS

At this point in time there is no non surgical treatment of bowel endometriosis. Lupron, birth control pills etc, may slow the growth of endometriosis, but they will not get rid of the endometriosis nor the associated fibrosis or adhesions. Invasive bowel endometriosis is a serious condition which can lead to an acute surgical emergency (bowel obstruction).

CONCLUSION

In summary, you probably are looking at another surgery to treat the endometriosis of your intestine. Using microsurgical laser treatment, the vast majority of bowel endometriosis can be treated without having to perform a bowel resection.

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Endometriosis Treatment Danger

Drug Commonly Used to Treat Endometriosis Linked to Ovarian Cancer
By Liza Jane Maltin

March 19, 2002 — A drug used to combat endometriosis may increase a woman’s risk of developing ovarian cancer. Researchers have found that women taking danazol are three times more likely to get the disease than if they take an alternate drug.

The team from the University of Pittsburgh Graduate School of Public Health presented their findings March 17 at a gynecologic oncologists meeting in Miami.

Endometriosis is a painful condition in which pieces of the uterine lining — the endometrium — migrate outside the uterus and grow abnormally.

Roberta B. Ness, MD, MPH, associate professor of epidemiology, and colleagues reviewed pooled data from two studies including more than 1,300 women with ovarian cancer and nearly 2,000 similarly aged healthy women. They looked at the relationship between endometriosis, endometriosis treatments, and ovarian cancer.

In all, 195 of the women with cancer and 195 of the healthy women had been treated for endometriosis. Women with endometriosis were one and a half times more likely than those without endometriosis to have ovarian cancer.

The researchers found that women with endometriosis who’d taken danazol were nearly three times more likely than were women who’d taken another drug to have ovarian cancer. This link held even after taking into account various factors known to influence the risk of getting ovarian cancer including having been on the pill, having had a baby, and having a family history of the disease.

“Our previous studies have found that women with endometriosis are already at a 50% increased risk for ovarian cancer, and treating them with danazol appears to further increase their risk. This new result, even though it is preliminary, may factor into the equation when [doctors] and their patients with endometriosis are deciding on the best treatment,” says Ness in a news release.

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