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Endo Returned, cysts, help me out please Endo Returned, cysts, help me out please

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  #1  
Unread 06-17-2003, 02:05 AM
Endo Returned, cysts, help me out please

Hi

Im 35 and had a LAVH 22 January this year.

Today being 17th June and I am still having a discharge, in fact it has never stopped!!!

Last weekend I had the most horrendous pains which they feel were a Kidney stone on my right side...... Had a CT scan last week to check for stones and they found no stones but a fluid filled mass in my pelvic area. Apparently I had crushed the stone to gravel and had passed it.

Today had a Ultrasound and the operator said she didnt think it was cancer because it had no blood supply, she feels it is a pocket of endo. She also couldnt find my right ovary and said the mass could be the ovary......

Im just so sick of all this, im 35 and life seems to have stopped, its just one medical problem after another.......

Anyone else experienced this continually since there surgery???





Lisa in Australia
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  #2  
Unread 06-17-2003, 05:53 AM
Endo Returned, cysts, help me out please

Lisa!

I think you will find several here that have suffered with one health problem after another since their hyst. I had a TAH/LSO 8 months ago today. I was diagnosed with MPS/FMS and DDD shortly before that. Then at 9 weeks post op my right ovary was found to have multiple cysts on it so, I was put on the bc pill. I have continued to have pain and severe PMS-like symptoms through out this time. I finally gave up on the pill helping anything and stopped taking it 2 weeks ago. At that time, I wrote a letter to my gyn explaining in detail what was going on....I'm still waiting on a response from her. It is very frustrating and many days I wonder if I'll ever be normal again. So, I do have an idea of how you are feeling.

What does your want to do about this? Does he/she have an ideas as to what it might be? Hang in there and do let us know how it goes.
  #3  
Unread 06-17-2003, 08:26 AM
Endo Returned, cysts, help me out please

From another sister who is still dealing with Endo....

I'm sorry you are in so much pain. I had my hyst., in Nov/00 due to extreme pain/bleeing due to Endo (34 yrs old). I had a few laps, and tried Lupron before the hyst., and the Endo just kept on coming back at record speed.

I had a lap done approx 7-8 months after my hyst., and my new Gyn found quite a bit of active Endo everywhere. She removed what she could, but had to leave quite a bit behind due to it's location. I have gone off all HRT (Tried the patch briefly - but found that it increased the stabbing pain in my ab).

I often feel that I am PMS'ing/ovulating...which is truly odd because I no longer have my ovaries. My docs have not ruled out an ovarian remnant...but things are moving very slowly up here due to SARS.

Since my hyst., I have been diagnosed with many diseases/syndromes. Sometimes I feel that there isn't one inch of my body that is healthy. I also believe that I still have Endo. I will probably have another lap within the year, but want to make sure that I have an excellent group of specialists present during my surgery...ie. A Urologist/ Gyn and perhaps even my Neurologist. I have had CT scans, MRI's and many ultrasounds. I have had mysterious growths show up on some of the tests...but they haven't been able to pinpoint exactly what it is. I think that what they saw were probably cysts....

Sorry to go on and on...But I wanted you to know that you are not alone. You have come to the right place. Many of us have been on this road for years. You'll find great support here.

I would suggest that you seek out the opinion of a Gyn who specializes in Endo. Please let us know how you are doing....

S
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  #4  
Unread 06-17-2003, 07:09 PM
Endo Returned, cysts, help me out please

Hi there!
I am sorry that you are having to go thru this. Remember, though, that endo can only be accurately diagnosed by lap, so don't panic because of what the U/S tech said.

Hang in there!
  #5  
Unread 06-17-2003, 08:49 PM
Endo Returned, cysts, help me out please

((Lisa)),
Unfortunately, there are several ((Sisters)) suffering recurring Endo Post-Hyst I do not have a + dx of this but experience many of the symptoms..I have done tons of research on this issue & wanted to share some info I thot might be of some help

Endometriosis Conquering The Silent Invader:
http://www.ivf.com/ch17mb.html

Recurring Endo at the Center For Endometriosis Care:
ttp://www.centerforendo.com/news/recurrance/recurrance.htm

Endometriosis-Dr. Stanley West:
http://www.repmed.com/endo.html

Endometriosis Treatment Program @ St. Charles Medical Center-Bend, OR-Dr. David Redwine:
http://www.endometriosistreatment.org/

Hysterectomy & Endometriosis Questionnaire:
http://www.angelfire.com/fl/endohystnhrt/quest.html

Post-Op Ovarian Suppression:
http://www.centerforendo.com/news/ov...n/ovarysup.htm

Endometriosis Research Center:
http://www.endocenter.org/

  Quote:
Endometriosis
November 14, 2002
2002 NOV 14 - (NewsRx.com & NewsRx.net) -- A majority of women who suffer from chronic pelvic pain have been told that their pain is "normal" or even exaggerated despite their own perception of it as severe and debilitating.

Ironically, these comments are coming from the people they rely on most for support - their physicians, families and friends - according to a survey conducted by the Endometriosis Association and released at the 58th Annual Meeting of the American Society for Reproductive Medicine in Seattle.

The survey found that 40% of women who suffer from chronic pelvic pain due to endometriosis or the formation of postsurgical scar tissue have been told they exaggerate their pain. More than half (52%) were told this by their ob/gyn and 43% by a friend or family member. Nearly 60% of these women have been told that their pain is normal. Of these, 56% were told this by their ob/gyn and 29% by family or friends.

"The results of this survey are concerning given the impact pelvic pain can have on a woman's life," said Mary Lou Ballweg, president and executive director of the Endometriosis Association, who announced the data. "On a regular basis, we see women completely alter their lives because of the debilitating effects of pelvic pain. The frustrating part is that it often takes years for women to receive a diagnosis, and by then, many are unable to work or fully participate in normal activities."

In fact, 43% of women surveyed describe their pain as constant. More than half describe the intensity of pain as severe to unbearable (26% say it's severe, 18% say very severe, and 9% say unbearable). At this level of pain, it's not surprising that more than 80% say they have been unable to work at times due to pelvic pain, and 45% say they have been debilitated for 2-3 days or longer each month.

"Chronic pelvic pain accounts for 12% of hysterectomies and 40% of laparoscopic surgeries. The total costs of treating chronic pelvic pain are more than $2 billion each year," said Dr. Charles Miller, reproductive endocrinologist, gynecological surgeon and medical director of Specialists in Reproductive Health in Arlington Heights and Naperville, Illinois. "As I've seen with many patients and with this survey, chronic pelvic pain also exacts a significant emotional toll, which makes it even more important that women speak to a doctor at the first signs of pelvic pain."

The survey of 968 women ages 15 through 59 with endometriosis and/or postsurgical scar tissue was designed to uncover specific information about women's experiences with chronic pelvic pain. The survey, conducted by The Endometriosis Association, was cosponsored through a restricted educational grant by Gynecare, the women's health division of Ethicon, a Johnson & Johnson company, and Purdue Pharma L.P.

Two of the leading causes of chronic pelvic pain are endometriosis and the formation of post surgical scar tissue, also called adhesions. Of the women surveyed, 89% had endometriosis, and nearly 40% had been diagnosed with adhesions.

Endometriosis is an immune and hormonal disease that affects 5 million women and girls in the U.S. It occurs when tissue similar to the lining of the uterus (called the endometrium) is found outside the uterus, usually in the abdomen, on the ovaries, or on fallopian tubes.

Postsurgical adhesions are abnormal bands of scar tissue that form inside the pelvis after gynecologic surgery. Endometriosis can also cause adhesions.

As many as 90% of the 3 million women who undergo gynecological surgery each year to treat common female health problems such as ovarian cysts, fibroids and endometriosis, will develop adhesions.

Ironically, women who undergo pelvic surgery to correct endometriosis or to remove adhesions (a procedure called adhesiolysis) are at risk for developing pelvic pain from new formations of pelvic adhesions.

However, new treatments are available to help stop the recurring cycle of pelvic pain. A variety of treatments can help treat pain due to endometriosis, and doctors now have tools to help reduce the risk of adhesion development after surgery to treat endometriosis or remove adhesions. Women should proactively talk with their physicians about chronic pelvic pain, its underlying causes and how it can be treated, or even prevented, in some cases.
http://www.obgyn.net/newsheadlines/w...0021114-22.asp
Here is some info on Ovarian Endo~symptoms,treatments ect...
  Quote:
There may be no significant symptoms of implants on the surface of your ovary unless there is the formation of adhesions. You may, however, experience pain on the side of the pelvis where the implants are present. The pain might be a continuous ache or burning, usually worse during menstruation. Additionally, you may feel pain deep in the pelvis or inside the vagina during sexual intercourse, this pain also will intensify during menstruation. During pelvic examination, your physician can likely reproduce some of the pain when he or she palpatesand move the affected ovary.
Treatment: Laparoscopic CO2 laser vaporization or harmonic scalpel destruction of the implants is the optimal surgical treatment for you because neither of these causes significant damage to the ovary itself.If you do have adhesions between the ovaries and the surrounding organs, they should be resected by use of CO2 laser, harmonic scalpel, or laparoscopic scissors with only minimal use of electrocautery. In some cases Lupron Depot suppression for six to nine months may be effective, but you should be aware that it will not affect already formed adhesions. As an additional option you may want to consider suppression using Danazol vaginal suppositories.

Endometriosis inside the ovary:
Description: Endometriosis inside your ovary is usually transformed into the cystic structure within your ovary called endometrioma (chocolate cyst).The endometriotic implant within your ovary or the surface implants burrowing into your ovary are surrounded by ovarian tissue. A small amount of fluid and blood produced by the implant during each menstrual cycle cannot escape that enclosure and it will accumulate within your ovary, forming a cyst (fluid filled space) called endometrioma.The inside of the cyst provides the surface for the endometriosis to spread and grow. This in turn makes the volume of fluid produced with each menstrual cycle greater and makes the cyst grow larger.There are occasional breaches of the wall of the cyst, which allows some of the bloody fluid to escape into your abdomen and pelvis. This in turn causes an inflammatory reaction (irritation) within your abdomen and the formation of scar tissue around the leak as your body tries to prevent wider spread of this irritating material.
You should note that endometriosis of the ovary is almost always a benign condition, and only very small number of endometriomas will show malignant changes.

Symptoms: Pain in your lower abdomen is a common symptom of endometrioma. It is usually chronic and more pronounced on the side of the cyst, sometimes it will radiate to your lower back. You will find that the pain is usually worse around the time of menstruation and on occasion it will become quite severe.There also may be deep pain during sexual intercourse.If you have this condition pelvic examination will usually reveal an enlarged ovary, which may be quite tender and often times is immobile.

Diagnosis: While the combination of your symptoms and a pelvic examination, are often enough to make a diagnosis, you should likely also get an ultrasound in order to identify the cyst within the ovary.Vaginal ultrasound usually provides significant detail as to the appearance of the cyst and aids toward fuller diagnosis of endometrioma. Ultimately, only Laparoscopy and surgical removal of the cyst wall provide a definite diagnosis as to the kind of cyst. Note that CT scan and MRI scan can usually identify cystic masses in your pelvis but they are not as helpful as ultrasound in providing details of its internal appearance.

Treatment: Aspiration of the bloody or chocolate fluid from the cyst is not an effective treatment because the entire lining of the cyst, including all of its endometrial implants, is left behind and ready to form a new cyst.

Laparoscopic resection of the endometrioma is the most effective minimally invasive method of treatment.Because most of your ovary and its function, including all of its eggs, is located on the surface of your ovary, your physician safely proceed to the inside of the cavity of the cyst and remove the entire wall of the cyst, leaving your ovary and its function preserved. Laparotomy alternately and resection of the endometrioma does remove the entire lining of the cyst, but it adds the element of an open abdominal procedure that may be associated with increased formation of new postoperative adhesions and longer recovery.

There are other methods of treatment; these include destruction of the lining of the cyst with CO2 laser, argon laser, YAG laser, electrocauthery, harmonic scalpel and heat probes.It is also possible that a combination of aspiration of the endometrioma followed by Lupron Depot suppression of the endometriosis can be effective in treating endometriomas.

Removal of the ovary containing endometrioma is quite a radical approach and you should consider this if you are not contemplatingfuture pregnancy, if you have massive adhesions around the ovaries that failed previous attempts of conservative surgical treatment or if there is a possibility of ovarian malignancy.
http://www.endometriosisusa.com/endodetails.html
An Endo Specialists thots on recurring Endo:

  Quote:
This can be one of the most difficult situations encountered with endometriosis. It can be difficult from the patient's standpoint, because, not uncommonly, she is dealing with a medical profession, family etc. who is really starting to question the legitimacy of her pain. From a physician's standpoint, this can be the most difficult type of surgery encountered by a gynecologist and thus the most likely not to be correctly or completely treated resulting in "treatment failure" with recurrence of symptoms.

There is no question that endometriosis can be present in a woman who has undergone a hysterectomy and removal of both ovaries (even more likely if the ovaries remain). Performing a hysterectomy does not in itself treat endometriosis. It may reduce the chance of future recurrence of endometriosis, reduce non-endometriosis related cramps, bleeding etc. The key point is that endometriosis, for the most part, does not grow on the uterus, it grows behind the uterus, on the bowel, in the rectovaginal septum, in the pararectal spaces, under the ovaries, around the ureters, on the bladder, etc. If a hysterectomy is part of the agreed upon treatment plan between you and your physician that is fine, but ONLY AFTER the endometriosis has been completely removed from all of the areas which will not be taken out with the uterus. If you have undergone a hysterectomy alone for the treatment of endometriosis (the endometriosis was not treated just prior to the hysterectomy) there is a good chance you will have persistent or recurrent symptoms. The most common symptoms include constant pain, pain with bowel movements, pain with intercourse (usually deep penetration, like he is hitting something inside) and occasionally mid back pain (secondary to ureteral involvement). You can also experience the emotional changes we have seen with endometriosis including moodiness, depression, etc.

Now, assume for a minute that everyone understands your situation (your doctor, significant other, employer etc.) and your gynecologist surgeon is standing there ready to go after the endometriosis. What are the pitfalls? In my experience, by the time a patient has gotten to this point she has undergone so many surgical procedures that is impossible to tell what is and what is not endometriosis. The anatomy is distorted, fairly extensive scar tissue and fibrosis (tough leathery tissue) is present, and often endometriosis is buried out of sight in a patient who has had a hysterectomy performed. The endometriosis gets buried when the surgeon clamps, cuts and ties the tissue during the hysterectomy. The endometriosis that is present get wadded up and buried in this process. After this area heals following the surgery it can be impossible to see endometriosis without dissecting the areas in which endometriosis is known to grow. Another common area for residual endometriosis is the vaginal cuff. Unless all of the endometriosis is removed from the rectovaginal septum prior to the hysterectomy, it can be easily sewn into the vaginal cuff.

We have seen and treated more than 200 women with residual endometriosis after undergoing a hysterectomy. If you are experiencing this situation, you are not alone. In my experience there are several key factors in successfully treating this type of case. First, this is probably the most technically challenging surgery a gynecologist will face. It is important to seek out a surgeon who is technically good and has experience in dealing with this situation. Second, since it can be impossible to determine what is and what is not endometriosis, all abnormal tissue must be removed and the areas in the pelvis where endometriosis is know to grow must be dissected out. It is not uncommon for an area to look normal on the surface, but to have deep endometriosis when opened up. In my experience, all areas need to be dissected down to normal tissue (endometriosis until proven normal). Depending on the specific situation a small portion of the vaginal cuff may need to be resected.

In summary, you can have endometriosis and the associated symptoms and pain even if you have had a hysterectomy. Treatment of this condition is technically challenging and requires the ability, expertise, and equipment to dissect and laser all of the pelvic areas deep down to normal tissue. In my opinion, a surgeon can not get all of the endometriosis and scar tissue by just spot treating or selectively excising lesions. In my experience, once all of the pelvic area is explored and all the abnormal tissue is laser out, the patient feels better.

Post-Hyst Cysts:

An endometrioma is usually found in the ovary, which raises the question if there is a piece of an ovary left inside. This is actually easier than you might think. The ovary can look a lot like scar tissue and it lays on top of a fairly large blood vessel. Women with Stage III or IV endometriosis often have the ovaries stuck to the pelvic sidewall (with adhesions) and endometriomas in the uterus. When the ovary is removed a portion can be left behind, looking like scar tissue attached to the underlying blood vessel. The surgeon will often not clean the "scar tissue" off of the blood vessel thinking that it is not causing the patient any harm and not worth the "risk" of operating that close to the blood vessel. If the endometrioma and cysts or on the left side this is probably the cause of your pain. If you had stage III or IV endometriosis it is very possible that you could have endometriosis on your bowel (most common site of "recurrence" after a hysterectomy), bladder or vaginal cuff. Operating on women with endometriosis who have had a hysterectomy can be very different than that on a woman that is undergoing her first laparoscope.

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. This is why it is so important to use a team approach in the treatment of individuals with endometriosis. 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).
http://www.drcook.com/
I'm sure the others will be along shortly ((Lisa)) to share their personal experiences w/ this nasty disease..Good Luck & pls know your many ((Sisters)) are here folr you
((((hugs))))
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