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endo growing with no oral estrogen? endo growing with no oral estrogen?

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Unread 04-23-2003, 02:24 PM
endo growing with no oral estrogen?

Dear Sisters,

I struggled with endometriosis with for 3 years and went through laparoscopy and Lupron and all those things trying to stop it. It was on my bowels and all over everything else and it seemed to be getting worse in spite of treatment. I had a hysterectomy in May of 2002. I was then put on 1mg Estrace for four months because the hot flashes and dryness were traumatic, but endo achiness came back, so I went off oral estrogen (though I added Estrace vaginal cream) and added norethindrone, a strong anti-endometrial-growth progestin (plus a tad of topical testosterone cream for libido). Five months later, the achiness is back again. It's been getting worse over the past couple of weeks. Today I feel as I used to feel the day or two before my period (not horrible pain or anything, just achiness, tender belly and lower back, and fatigue). I have an appointment with my gynecologist and surgery on Monday, but I have trouble believing that this stuff could STILL be growing! I'm taking barely any estrogen (and it's just topical) and I'm taking a large amount of progestin - how could this happen?!

Has anyone had a similar experience? Any suggestions? I know endometriosis is common, but I haven't heard of it being this persistent!

Thanks for any advice you may have.

-Christie in Chandler, AZ
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Unread 04-24-2003, 07:06 AM
endo growing with no oral estrogen?

First, let me send out a hug to you. It seems there are a few possiblities here. First I wonder if you need to stop all hormone activity for awhile. I did that. I was even paranoid about eating any soy in my diet because I wanted to be completely hormone free.

It also could be that adhesions have developed.

It seems that since you mention that the pain fluctuates with the hormones that it may be endo and it may be being activated by the hormones you are taking.

I'm clearly not a doctor. I'm just someone who had the endo return when I was taking hormones. The pain stopped after I quit taking all forms of estrogen. Later I went back and started using Vagifem for vaginal dryness. Still fine.
Unread 04-24-2003, 08:12 AM

Thanks for the hug! I have stopped eating any sort of soy and I'm starting to consider getting hormone-free meats, eggs, and dairy products, as well.

It's been surprising how sudden this pain has been. Last week I was pretty much fine, and this week I want to stay home with my heating pad! My hormone dosages have been pretty much the same every day, so I don't understand how it would get so much worse - and so quickly.

Thanks for the advice and compassion. I see my doctor tomorrow, though I'm not sure he'll have any great advice. We really have tried everything that either of us could think of. I probably will stop using the Estrace and Testosterone creams for a while . . . but I don't want all those sex problems again! Grrr - this is frustrating.

Thanks again.

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Unread 04-24-2003, 10:26 AM
endo growing with no oral estrogen?

I understand about those. Although if you are in pain you don't really want to have sex either!

When my endo grew back, I noticed little signs of it coming back and then all of a sudden it was totally out of control. Stopping the hormones lessened the pain and within two weeks I was pain free. I hope you get answers and feel better.

I wonder if we always have to be off hormones or if there is a certain time period where it will die off and then we can slip a little into the system.
Unread 04-24-2003, 02:39 PM
endo growing with no oral estrogen?

I'm sorry you are having such a hard time finding some relief There are studies that have been done concluding that Endo can produce it's own Estrogen Here is some excellent info on Endo & treatments that might help

HRT and special situations: Endometriosis and post-hyst HRT:
It is now becoming accepted that a hysterectomy/oophorectomy does not “cure” endo, although it may remove some of it. The most realistic expectation of the surgery is that subsequent use of HRT may provide a more stable hormonal environment with less endo stimulation. Because estrogen stimulates endo growth (just as it stimulates proliferation of the uterine endometrium) and progesterone inhibits it, current post-hyst endo management theory calls for the addition of progesterone to estrogen HRT. This is to avoid the stimulation of endo proliferation and the risk of converting that endo to a cancerous state. Many endo specialists also call for a post-op period (varying from 6 weeks to 6 months to “as long as you can stand it”) without HRT, in order to encourage any remaining bits of endo not removed during surgery to shrink away. Some take that a step further and prescribe the use of progesterone alone to directly squelch that endo growth. This has the additional benefit of helping ease some of the transitional menopause symptoms experienced during the wait for estrogen.

Not all doctors espouse this theory, of course. Some surgeons are highly indignant at any suggestion that they might not have cleared all traces of endo; others freely admit that microscopic bits of endo are virtually guaranteed to remain and require other treatment. We're not going to argue with your doctor's take on the situation, other than to suggest that if your doctor insists that all endo is gone and you continue to experience post-op endo-like pains, you might want to research this part of the question further. We aren't endo specialists, but we have a few links on our links page that may be useful in your researches. Endo is a long, grim battle, and it's sadly not one that seems to be over after a hyst.

In addition to progesterone, you may want to look into other measures to help with your estrogen deficit. You will need to work very hard on maintaining your bone density and keep an eye on your overall cardiac measures such as cholesterol and blood lipids. Both of these profiles see their most rapid rate of change in the year after ovarian hormones decline. Many of the symptomatic relief measures may also be helpful. In particular, use of an SSRI or St. John's Wort may be required if depression and hot flashes become debilitating. It's important to bear in mind that some of the herbal estrogen-alternatives are fine to use and some can totally undermine the point of going without estrogen. As a rule, black cohosh is considered effective in relieving symptoms without having effects similar to estrogen. Red clover's picture is not as clear, and it is also not as clearly demonstrated to be effective. Soy, which is often used as an estrogen supplement or alternative, should be avoided in endo suppression just because it has some of the same capacity for endometrial stimulation as estrogen. Taking the adrenal precursors (DHEA, pregnenolone) is a little questionable as they can ultimately be converted to estrogen; testosterone supplementation during this period will probably also be hijacked for estrogen production, so may not be wise. Even caffeine, as noted at WebMD, stimulates elevations of circulating estrone, an estrogen, and may be implicated in the exacerbation of endo. Check all this with your doctor, of course—but remember the bottom line: if any of these do stimulate further endo, you are the one who suffers. And you know what that's like. http://www.geocities.com/NoLinks/def.htm
recurring Endo-Q&A:
Surgical Procedures for Endo:

Endo Specialists & Resources:


Dr Cooks homepage:



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:
  • Fatigue
    Heavy menstrual bleeding
    Deppression 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.

Good Luck ((Christine)) I hope you are able to find some relief soon..pls keep usposted...(((hugs)))
Unread 04-24-2003, 07:18 PM
thanks again

Thanks, ladies, for your encouragement and the information you posted. I am feeling tired and achy tonight and I'm lonely, too, because my sweet husband had to be gone for the evening (though he'll be home in a few hours). Sometimes I feel a little sorry for myself, though I'm very thankful I don't have a fatal disease or one that affects my life even more. I'm thankful, too, that God gave me a fabulous, supportive, and kind husband; that I am able to work part-time; and that I have a doctor I trust.

I meet with my doctor tomorrow and I'm not even sure what to say . . . I've been almost without endo-simulating hormones (just was taking vaginal estrogen - a tiny dab each day) for about four months and I thought I was killing the stuff off during that time because I wasn't taking oral estrogen! Now I've stopped using the vaginal estrogen and the testosterone I was on. I stopped using the progestin, too, because I've noticed some side-effects (difficulty maintaining regular blood-sugar, weight gain) Those things don't help me feel better, of course! This is a long journey.

Is it possible that after stopping HRT altogether that the endometriosis could STILL grow? My doctor is baffled - I'm starting think I'm a mutant! Hehe.

I appreciate your advice and the information. Thanks for taking the time to take care of me a little.

Unread 04-24-2003, 08:36 PM
endo growing with no oral estrogen?

It could be adhesions. That is scar tissue that grows. I think it is similar to the feel of endo and unfortunately it just grows without estrogen.

I'm so sorry you are having these pains.

You mentioned it was a recent situation. Maybe you just pulled too hard on some tender tissue when you were doing something physical. It is so hard to know. Time will tell.
Unread 04-25-2003, 11:40 AM
Info on Adhesions....

Adhesions Explained:

Adhesions begin when tissues that should be separated grow together and adhere to each other. Adhesions are very common in the peritoneal cavity. It is important to have an idea about the peritoneal cavity in order to understand adhesions. We all know that our bodies are hollow inside and divided in two compartments. The upper body compartment contains the heart and lungs and is called the chest. Its scientific name is the thorax. The lower compartment contains the stomach, the intestines, liver, spleen and the internal female reproductive organs. (Uterus, fallopian tubes and ovaries). This compartment is known as the tummy. Its scientific name is the abdomen. In our present discussion we are only interested in the lower cavity , the one containing the female organs. The stomach and intestines are in constant movement and should be able to glide over themselves, to glide over the side wall of the body and to glide over the other organs without any friction. In order to obtain organ movement without friction the side wall of the body and the organs are covered with a special layer or membrane known as the peritoneum. Fluid is present between the peritoneal layers and thus friction is decreased. The peritoneum is reflected from the side walls of the peritoneal cavity onto the organs. |It surround the organs and are then reflected back to side wall. The next drawing will explain it. Note the peritoneal fold that is formed as the peritoneum passes from the side wall onto the organ and than back from the organ onto the side wall.
What are Adhesions?

Adhesion formation is a natural consequence of surgery, resulting when tissue repairs itself following incision, cauterization, suturing or other means of trauma. Even the most careful and skilled surgeon will inevitably effect tissues inside the abdomen during a surgical procedure. At the places where a surgeon has had to cut, handle, or otherwise manage parts inside the body, tissues which normally should remain separate will sometimes become "stuck" together by scar tissue, defined as adhesions. This process begins immediately and continues for up to 7 days following surgery.

The Problem of Adhesions?

The incidence of adhesions is overwhelming. Adhesions develop in 93% of patients following abdominal and pelvic surgery.

Following surgery, adhesions may form, for example, between the incision in the abdominal wall and the small bowel, often causing small bowel obstruction. This obstruction can lead to vomiting and debilitating pain. In extreme cases, the bowel may rupture, necessitating emergency surgery for the patient.

How Adhesions Effect a Patient:

Adhesions can lead to serious complications including small bowel obstruction, female infertility, chronic debilitating pain and difficulty with future operations.

The consequences of adhesions can be substantial. Postsurgical adhesions cause up to 74% of bowel obstructions.3 Postsurgical adhesions are responsible for 20-50% of chronic pelvic pain cases.3 Adhesions also are a leading cause for female infertility, causing 15-20% of cases.
Quality of life is also potentially impaired.

Quite often a patient will undergo surgery to lyse (cut) adhesions, only to have them re-form. Once a patient has undergone a colorectal procedure, the incidence of re-operation within two years is high - up to 20% of patients will have a subsequent colorectal procedure in that time.4 Many of these surgeries are to remove adhesions. Between 2.3 and 5% of patients will have to undergo adhesiolysis for bowel obstruction within two years of colorectal surgery.

Re-operations are also complicated by adhesions. Surgeons have to spend a considerable amount of time, anywhere from 10 minutes to several hours, lysing adhesions before the new procedure can begin. This can prolong the patient's recovery time and increase the risk, cost and complexity of the surgery.

Seprafilm Adhesion Barrier: Proven Adhesion Prevention:

Adhesions can range from filmy to dense, with dense adhesions proving to be the most difficult for a surgeon to treat. The use of a physical barrier to separate the traumatized tissue from other tissues will decrease the risk of all adhesion formation.

Seprafilm Bioresorbable Membrane from Genzyme Biosurgery is an absorbable adhesion barrier that separates the traumatized tissue surfaces while the body's normal tissue repair process takes place. In a randomized, double-blinded, multi-center clinical study, Seprafilm prevented adhesions in 51% of patients. In the same clinical trial, only 15% of Seprafilm patients had dense adhesions.

The Safety of Seprafilm:

Seprafilm has been studied in two clinical trial involving 310 patients. No statistically significant differences were observed in the incidence of adverse events comparing Seprafilm treated patients with control patients for a periods of 53 weeks following their initial surgery. Safety studies concluded that Seprafilm is nontoxic, biocompatible, nonimmunogenic, and that it does not interfere with normal would healing, nor does it promote sepsis.

Seprafilm is both safe and effective. Ask your doctor about Seprafilm, and for more information visit the clinician section of this Web site.


"If the adhesions are extensive, and the patient has undergone previous adhesion surgery that failed, I have taken an unorthodox approach to such individuals. Because adhesions begin to form almost immediately, along with the healing process involving the raw anterior abdominal wall, I have in special situations recommended a repeat laparoscopy in one week. At this point, the "new" adhesions are flimsy, soft, do not contain a blood supply, and can be swept away with minimal tissue injury, compared to a conventional adhesiolysis (freeing the adhesions surgically) of old adhesions that are dense, very adherent, and bloody. This is performed in an outpatient setting, and usually takes but a few minutes, compared to the time involved dealing with extensive, dense old adhesions."
Unread 04-28-2003, 01:56 PM
thanks to all (& update)

Thanks, ladies, for your input and for sharing your experience and knowledge with me.

I saw my doctor (gyn and surgeon) Friday, and he suspects that I am sensistive to even the teeny amount of vaginal estrogen cream I was using and that the cream was stimulating the endometriosis. So now we've decided that I will not take HRT at all for a while. I will see my doctor montly until we decide that the implants have decreased in size and firmness (he can feel the big one in my cul-de-sac region) enough that we could perhaps try a little estrogen again (though maybe not). I am using natural progesterone cream, but no other hormones. My doctor also prescribed Effexor (typically used as an anti-depressant) because it has been found to be very effective against hot flashes (I had very severe and long-lasting ones before I started HRT) and sleeplessness. It just seems to help regulate things (including mood!) and it is not a hormone, so it won't stimulate the endometriosis. I'm no longer feeling tense and anxious about this situation and I'm thankful I was able to see the doctor so quickly. God had His hand in that! I hope this resolves things.

Thanks for your help and compassion.

Unread 04-28-2003, 07:42 PM
endo growing with no oral estrogen?

Just a word of warning. I have read on this website that other hormones, such as progesterone can turn into estrogen. I have not ever had this experience, but wanted to pass this along in case you continue to have problems, you may want to discontinue the progesterone.

It sounds as if you have a good doctor. I wish you good health.

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