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returning endo? IBS? returning endo? IBS?

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Unread 03-03-2003, 03:47 PM
returning endo? IBS?

thanks so much, for the hugs, support and good info. I particularly appreciated the link to

it made me feel like I am not going nuts!

DH is home, I just picked him up from the airport - really fun driving there in PAIN and rain! but I made it LOL It is a big relief to have him back to talk it all over. We both agree tis crazy to have to wait a month to be seen when I hurt so I shall call again today and see what I can do to hurry it all along.

thanks again everyone

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Unread 03-04-2003, 02:12 PM
Going through same thing

I thought I was reading my own post. I'm having what feels like menstrual cramps lately. My lower back is hurting me also. I had diarrehea so bad the other day that I thought I was going to faint. It did not last long. The gas pains were awful. I've never been diagnosed with IBS but I'm beginning to wonder if that is part of it. Or , I can be having a reoccurrence of the endo. My hysterectomy did not show any endo though. My doctor prescribed birth control pills in December. I have not tried them yet. I probably should. It is good to know that I am not alone. I will be going back to see my doctor next month for a recheck. I probably need to go see a gastro. I also feel like my remaining ovary is hurting. This is the pits!
Unread 03-04-2003, 02:20 PM
Would like to share a resource...

for those with IBS. _Eating for IBS_ by Heather van Vorous, published by Marlowe and Company. I got mine through Amazon. She is not a doctor but writes this book based on her own lifetime experiences. It is an easy read with some simple suggestions for handling this condition. Got some great recipes as well. In particular, I always have sour dough or french bread around. Seems to help me. You might check it out.
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Unread 03-04-2003, 06:18 PM
returning endo? IBS?

SO sorry to hear you guys are having troubles too *hugs* back to you all!

My better news is that I called my TOTALLY WONDERFUL general doc and told him I didn't have an appt with the gyn for a month - he said nononono not acceptable and told me to call again and tell them he'd be calling too. So now I got an appt on Friday. Not only that but Chris the wonder doc even called me again today to check the appt was sorted out and ask how I was feeling. Is that good service or what!!

I'll let you know what I find out in case it helps anyone else

Unread 03-04-2003, 08:25 PM
I don't understand....

I just had a TAH/RSO on 2/21 for endo. My DR told me that as long as all the lesions that were on other parts of the body (ligaments supporting uterus, etc) were removed that the chance of my endo coming back was "very unlikely" even with one ovary remaining. This sounds logical to me. If there is no remaining endo, with no uterus, you do not have a lining to shed anymore. Thus, no more endo.

Did you all have lesions that were not lasered off during your hyst or are your DR's saying these are new growths?

I would hate to think I've gone thru all this only to have it return.
Unread 03-04-2003, 08:34 PM
returning endo? IBS?

Hi Christi, I don't have any answers yet as to whether I have endo back (but I know how I feel and strongly suspect I do) I wish I did know.

Sheri posted a good list earlier in this thread about returning endo - the one I found most relevant to me was at

it is not terribly reassuring to read but it helped me to understand more about it.

Sounds like your doc has done a thorough check for endo in other places so I hope you'll be just fine

Good luck with your recovery and take good care of yourself,

Unread 03-05-2003, 05:59 PM
returning endo? IBS?

((((Steph))))) I'm so sorry you're still in so much and might be facing, once again, the endo monster

I'm really happy that you managed to get an earlier appointment. What a doll of a general surgeon you have he's a keeper for sure.

BTW, you might be dealing with a combination of issues that might explain why the doctors never figured on the possibility of returning endo. IMO (remember: I'm a not a doctor) you might be dealing with a combination of endo and gastric issue. As I mentionned before, my IBS symptoms are worse whenever I'm ovulating. It seems to make sense that endo flare-ups might make the gastric problems worse

Sending tons of healing s your way. Hopefully it's not endo and your medical team will be able to find some relief for you.
Unread 03-06-2003, 05:32 AM
returning endo? IBS?

Good for your Dr Pls let us know how your appt on Fri goes

It is when the Surgeons remove only the organs & leave the implants behind, such as in the cul-de-sac, pelvic sidewalls, ureter, bladder, bowels, which can be *hidden* or too difficult to remove Some will withhold HRT, or use meds to suppress Ovarian function in hopes that the remaining will die off.. here is some other good info I found concerning this:

Endometriosis Conquering The Silent Invader:

Recurring Endo at the Center For Endometriosis Care:

Endometriosis-Dr. Stanley West:

Endometriosis Treatment Program @ St. Charles Medical Center-Bend, OR-Dr. David Redwine:

Hysterectomy & Endometriosis Questionnaire:

Post-Op Ovarian Suppression:

Incisional Endometriosis:

Endometriosis Research Center:

Radical Endometriosis Surgery:

Causes of Persistence and Growth of Endometriosis:

There are two basic mysteries surrounding the persistence and growth of endometriosis:
Why do endometrial implants survive the attack by the immune system, which is typically launched against any foreign presence in the body?

How do these endometrial travelers develop new blood vessels and implant themselves in other locations? Impaired Immune System. Some research is focused on possible immune disorders in women with endometriosis. One theory proposes that women with endometriosis have fewer natural killer (NK) cells, which are factors in the immune system important for surveillance. In their absence, the immune system is weakened and may allow endometrial tissue to invade and take root.

Growth Factors and Angiogenesis. Macrophages also produce growth factors, which are of particular interest because they play important roles in angiogenesis, a natural process by which new blood vessels form.

Vascular endothelial growth factor (VEGF) is secreted by endometrial cells, and so is of special interest. Under normal conditions, VEGF is secreted within the uterus. When oxygen levels drop following menstruation and blood loss, VEGF levels rise and promote the growth of new blood vessels. This process is important for repairing the uterus following menstruation.

When endometrial cells land outside the uterus, however, investigators theorize that this same process occurs with unfortunate results. The cells secrete VEGF when they are deprived of blood and oxygen, which in turn stimulates blood vessel growth. In this case, however, blood vessel growth serves to promote implantation outside the womb.

Other growth factors involved in angiogenesis that may play a role in endometriosis include transforming growth factors (such as TGF-beta), platelet-derived endothelial growth factor (PD-ECGF), and tumor necrosis growth factors.

Inflammatory Response. The damage, infertility, and pain produced by endometriosis may be due to an over-active response by the immune system to the early presence of endometrial implants. The body, perceiving the implants as hostile launches an attack. Of particular note, levels of large white blood cells called macrophages are elevated in endometriosis. Macrophages produce very potent factors, which include cytokines (particularly those known as interleukins) and prostaglandins. Such factors are known to produce inflammation and damage in tissues and cells.

Pelvic Pain (Dysmenorrhea)

Pain at the time of menstruation ( dysmenorrhea) is the primary symptom and occurs in nearly all girls and women with endometriosis. Studies suggest that endometriosis is the cause of about 15% of cases of pain in the pelvic region in women. (This is the area in the lower trunk of the body.)

Timing of Pain . In addition to during menstruation, endometrial pain can occur at other times of the month. A survey published by the Endometriosis Association reported the following findings on the timing of endometrial pain:
71% of women reported pain within two days after their periods started.

47% reported pain in the middle of a cycle. (A sharp pain during ovulation may be due to an endometrial cyst located in the fallopian tube that ruptures as the egg passes through.)

40% reported pain at other times of the month.

20% reported continual pain.

7% said there was no pattern.

Many women experience pain during intercourse.

Adolescents are more likely to experience pain that occurs both during their periods and at other times in the cycle, while in older women endometrial pain is more likely to occur during menstruation. Location of Pain . Nearly all women with endometrial pain experience it in the pelvic area (the lower part of the trunk of the body). The pain is often a severe cramping that occurs on both sides of the pelvis, radiating to the lower back and rectal area and even down the legs.

Occasionally, however, pain may also occur in other regions. Implants can also occur in the bladder (although rare) and cause pain and even bleeding during urination. Also rarely, implants form in the intestine and cause painful bowel movements or diarrhea. Large cysts can rupture and cause very severe pain at any time in various locations.

Severity of Pain . The severity of the pain also varies widely and does not appear to be related to the extent of the endometriosis itself. In other words, a woman can have very small or few implants and have severe pain, while those with extensive endometriosis may have very few signs of the disorder except for infertility.

Other Symptoms In addition to pain, patients may experience additional symptoms, which include the following:
Heavy menstrual bleeding
Depression and malaise (feeling generally low)
Sleep problems

In choosing between hysterectomy (with or without oophorectomy) and conservative surgeries, age and the desire for children are important factors. One study reported a greater sense of loss, more residual symptoms, and more pain in younger women (under 30) who have undergone hysterectomy than in older women. In one study, 37% of such younger women regretted their decision to have a hysterectomy.

Once careful instruction is given for all the risks and benefits of the different surgical options, the physician must then respect any decision a patient makes to retain as much of her reproductive system as she wants, even if she is past menopause. Both the patient and the physician should also be clear about the possibility of changing procedures once the operation has begun, depending on what the surgeon may observe. For example, the surgeon may find abnormalities that require more extensive surgery.

Much of the success of any procedure relies on the experience of the surgeon. A woman should always ask for a doctor's track record, or the number of times he or she has performed the procedure in question. The more, the better. Asking for complication rates may be helpful, but a patient should realize that an experienced surgeon may have a higher number of high-risk patients, and therefore, a higher complication rate than a less experienced surgeon with fewer serious cases.

Indications for Hysterectomy Hysterectomy is the surgical removal of the uterus. By age 60, 25% of American women have had this procedure. More than 500,000 hysterectomies are performed each year in the US, which is the highest rate among any nations with published data on this procedure. It is twice the rate of hysterectomies in English women and four times the rate in French women.

Studies report that between 11% and 19% of all hysterectomies are performed to treat extensive endometriosis. Having endometriosis plus severe symptoms is, in fact, a major risk factor for eventually requiring a hysterectomy. It should be noted that hysterectomy does not necessarily cure endometriosis. One study reported that endometriosis reappeared in 13% of women within three years of a hysterectomy and in 40% after five years.

Most women are satisfied with the procedure. A major analysis of evidence on hysterectomies reported that symptoms related to menstrual problems decline significantly in most women, although none completely disappear for all women. The majority of women also experience improved quality of life and emotional functioning, although 8% of women who were not depressed and 12% of women who were not anxious before the procedure developed these emotional states afterward.

Still, one study suggested that 70% of recommendations for hysterectomies did not meet the standard of care as determined by expert groups. In such cases, patients were not given alternative choices or adequate diagnostic evaluations. Any woman, even one who has reached menopause, who is uncertain about a recommendation for a hysterectomy for fibroids should certainly seek a second opinion.

Surgical Procedures for Intestinal or Urinary Tract Endometriosis Implants affect the urinary tract in up to 20% of patients. If deep endometriosis causes severe symptoms in the intestines or urinary tract, surgical excision of these implants may be necessary. Sometimes the surgeon will need to remove adhesions that have joined pelvic structures, such as the vagina and rectum. If a surgeon is experienced, laparoscopy may be used to remove urinary tract or bowel obstructions caused by endometriosis or adhesions, but conventional laparotomy is often required for complete surgical removal of endometriosis in the intestine or urinary tract. Almost any intestinal surgery is major and requires careful preoperative preparation to avoid infection. The operations take a long time, are technically difficult, and pose a risk for bleeding and infection. The recovery period is often lengthy


Several medical management options are available for the treatment of Endometriosis. The treatment for Endometriosis and Adenomyosis are virtually identical. However, it must be noted that many women diagnosed with Adenomyosis do not respond to traditional treatment. In the majority of cases, hysterectomy is the only cure for Adenomyosis.

These include:

NO TREATMENT, which can lead to more serious health problems.

Limited use of ANALGESICS and nonsteroidal anti-inflammatory drugs (NSAIDs).

ORAL CONTRACEPTIVES can be given cyclically (the patient has a monthly menses) or continuously (the patient has no menses during treatment).

PROGESTINS (Provera 10 mgm every day) or Depo-Provera injections will incompletely suppress ovarian function, but can be associated with breakthrough bleeding; they may be useful in a few women who cannot tolerate oral contraceptives.

GnRH AGONISTS are synthetic decapeptides. The GnRH agonists initially stimulate the pituitary gland to release follicle stimulating hormone (FSH) and luteinizing hormone (LH). Al a consequence, blood estrogen levels initially rise, then fall to menopausal levels within a few days. After 7 to 10 days, these drugs produce a menopausal state which is fully reversible. This produces amenorrhea (no menses), which permits regression of endometriosis and relief of symptoms. The GnRH agonists do not have any known direct effects on the ovary.

Leuprolide acetate (LUPRON DEPOT) is usually given as a single monthly 3.75 mgm intramuscular injection.

Nafarelin acetate (SYNAREL) 200 Fg nasal spray used twice a day, is a superactive, hydrophobic stimulatory analog of GnRH that is 200 times more potent than naturally occurring GnRH, and is delivered in a metered nasal spray pump.

Note that GnRH Agonists may be used for the Treatment of Adenomyosis, but recent studies have found that the GnRH Agonists do not provide adequate long term relief for the pain and bleeding associated with Adenomyosis.

SURGERY - In the infertile patient, laparoscopic therapy is almost always conservative, consisting of excision, laser vaporization, or electrosurgical desiccation of endometriosis.Every attempt should be made to conserve as much ovarian tissue as possible in these patients.

Patients who have completed childbearing often undergo more radical laparoscopic therapy, including hysterectomy and/or bilateral salpingo-oophorectomy (removal of the ovaries). Simple removal of the uterus and\or ovaries is not necessarily the appropriate operation, however. If the surgeon removes the uterus and ovaries, but leaves implants of endometriosis behind, the patient may continue to have pain very similar to that she experienced prior to the operation. Remember, symptoms may be as much a result of the implants of endometriosis as from the uterus or ovaries.

Adequate laparoscopic treatment of endometriosis requires a surgeon who is familiar with the pathophysiology of endometriosis and its various appearances. They must possess the skills to treat implants on or near vital structures in the pelvis, and have access to the proper laparoscopic equipment necessary to perform these procedures.

Hope this was of some more help in better understanding
Unread 03-06-2003, 09:04 AM
returning endo? IBS?

Thank you, Sheri!
I am starting a list of questions for my 2 week checkup next week!
Unread 03-06-2003, 09:13 PM
returning endo? IBS?

Well I am just back from seeing Pete the gyn surgeon who did my hyst. He told me I look as tired and bad as I did pre hyst hahaha, very flattering! I told him I had hoped I never ever to set eyes on him again after my hyst so we are even on the insults

He thinks I do probably have new/returning endo with the possibility that my left ovary is embedded in scar tissue.

So he has scheduled lap for next friday and will remove ovary or ovaries if necessary. He is also going to look for endo between vagina and rectum (which he says is one of the hardest places to get to but he promised he'll be careful!).

He called my gastro surgeon while I was there and they agreed to postpone the gastroscopy I was due to have that day - I suggested - half kidding - they do both together while I was asleep but apparently thats not possible!

His nurse is sending me the paperwork - but I forgot to ask if it will be day surgery or if I'll have to stay in - anyone have a clue? If they remove ovaries I am guessing I'll have to stay overnight maybe?

I am nervous about yet another surgery of course but glad to think I will finally get some answers and hopefully some relief!

Christi - I really hope this all isn't making you feel anxious, I am probably a freak so it doesn't mean everyone gets it back. Hope you are resting and feeling better everyday


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