Six years. That's how long it took for me to conceive my only child.

I don't like to talk about it, because I feel guilty. Yes, it took six years, but there are some in the Endometriosis community who still haven't conceived their own yet...and some of them never will.

Unfortunately, infertility is a sad reality for those with the disease. Indeed, Endometriosis impairs fertility in up to 40% of women with the disease. Thankfully, this devastating symptom is often treatable.

I am thankful every day the skilled hands of my surgeon, who treated my disease so successfully that I was able to get pregnant within "an unheard of" four weeks after my extensive excision surgery. Six months to the day after my son was born, I underwent a total hysterectomy and bilateral salpingoopherectomy to treat adenomyosis and multiple fibroids. Divine intervention notwithstanding, that pretty much rules out all chances of a sibling for my son. Still...I am one of the lucky ones.

Society does not seem to grasp the concept that some women either cannot - or choose not - to have more than one child, or any at all. I cannot count the number of times I have been at doctor offices, supermarkets, community events or just out with my son, and I am approached by strangers who think they have cornered the market on parenting.  "Ohhhhh, what a cute boy!" they say. I say "thank you" and try to move on, only to be stopped by such inquiries as, "is he your only one?" When I offer my standard response of, "yes, first and last!" they smile knowingly and nod their heads. "Sure, you say that NOW; wait and see!" In the beginning, I was polite and simply gritted my teeth and walked away. Now, it's gotten to the point where I can't help but respond to their condescension with, "NO, I KNOW HE'S MY ONLY ONE...I CAN'T HAVE ANY MORE!!" It turns into an embarrassing for everyone and I go home angry for the rest of the day.

We shouldn't have to explain ourselves to society at large, but there seems to be some sort of social stigma attached to those who do not have children in tow. For those of us whom Endometriosis-related infertility plays a role, here is some information I hope helps you - and those around you - understand a little better.

Endometriosis can cause infertility through several different methods of action:

• Distortion of anatomy - Endometriosis can cause chronic tissue inflammation, which in turn leads to adhesions and scars. These adhesions and scars can distort the delicate surrounding organs and even be so extensive that they literally freeze the tubes, ovaries, and uterus into place. The eggs themselves can also be trapped in the scar tissue surrounding the ovaries, in what is known as luteinized unruptured follicle (LUF) syndrome. Endometriosis is found in 63% of those patients reported to have LUF.⁽¹⁾
  
  
• Hormonal factors - In his book, "Miracle Babies and Other Happy Endings for Couples with Fertility Problems," world-renowned fertility expert Mark Perloe, M.D. wrote: "it is hypothesized that the prostaglandins (hormones) secreted by the active, young endometrial implants or other chemicals secreted by white blood cells may interfere with the reproductive organs by causing muscular contractions or spasms. The tube may be unable to pick up the egg, and the stimulated uterus may reject implantation. In addition, sperm motility may be adversely affected along with the ability of the sperm to penetrate into the egg. Although the mechanisms are not fully understood, Endometriosis may also result in anovulation (17%), cause a luteal phase defect interfering with implantation, or cause a luteinized unruptured follicle. Some researchers suggest that the woman's body may form antibodies against the misplaced endometrial tissue. The same antibodies may attack the uterine lining and cause the high spontaneous-abortion rate: up to three times the normal rate. Fortunately, removing the disease with medication or surgery will reduce this risk to normal. The normal tissue surrounding the Endometriosis implant becomes puckered and ischemic (suffering from lack of oxygen), causing pain similar to that from a heart attack. Attacked over a prolonged period, the fallopian tubes may become inflamed and swell shut. Blocked by adhesions, the tubes can no longer provide safe passage for egg, sperm, and embryo. Ectopic pregnancies become a real danger: up to 16 times more likely than the normal population (16% vs. 1%)."
  
  Dr. Perloe goes on to discuss follicular phases in patients with Endometriosis, noting that "the follicular phase may be shorter in patients with the disease. Subsequently, the estradiol (most powerful form of estrogen) levels may be lower, and a blunted LH surge may be seen. Progesterone levels and luteal phase endometrial biopsies, however, are normal." Interestingly enough, Dr. Perloe notes in his book that "women with subtle ovulatory dysfunction are more likely to have infertility, and it may be that infertility or an abnormal hormone profile increases the likelihood of Endometriosis."⁽²⁾
  
  
• Peritoneal Effects - in women with Endometriosis, studies have shown there is an increased volume of peritoneal fluid, and peritoneal macrophages (scavenger white blood cells) are increased both in number and activity. Cytokines (white blood cell chemical messengers) are also all increased. These may adversely affect sperm oocyte interaction, sperm mobility and survival, and oocyte pickup. In addition, serum samples obtained from women with Endometriosis were found to be embryotoxic in mouse embryo cultures 78% of the time, versus 20% in women without Endometriosis.⁽³⁾
  
  In a recent study in Fertility and Sterility, Dr. Bruce Lessey and his colleagues took peritoneal fluid from women with infertility related to Endometriosis, as well as from women without the disease, and injected the fluid into female mice. The mice that had received fluid from healthy women had a normal pregnancy rate. However, the mice that had received fluid from infertile women with Endometriosis "had a much lower pregnancy rate," Dr. Lessey said. In previous research, investigators had found that some women with Endometriosis are missing proteins known as alphav-beta3 and leukemia inhibitory factor. These proteins, found on the uterine lining around day 20 to 28 of the menstrual cycle, seem to play a role in helping the embryo stick to the womb, explaining why women without the proteins have fertility problems, noted Dr. Lessey.⁽⁴⁾
  
  
• Immune System - patients with Endometriosis may show decreased nature killer cell function, and decreased reactivity to transplanted endometrial tissue. In addition, Complement, an immune component that breaks apart abnormal cells, is elevated in patients with Endometriosis.⁽⁵⁾
  
  These are just common findings in Endometriosis-related infertility research. There is, of course, as with "All Things Endo," the "unknown" reasons as well. There is, fortunately, much research being done into this realm.  As in my case, infertility is often treatable in Endo patients, and there is hope!! Approaches include:

• Surgery - surgical destruction of the disease has been shown to improve fertility rates in all stages of disease.
  
  
• Medical therapy - Dr. Perloe reports that "multiple studies have reported a 4-5 times improvement in fecundity (monthly chance of conception) with empirical treatment, super-ovulation with either clomiphene or injectable gonadotropins (Humegon, Metrodin, Pergonal) combined with intrauterine insemination." Dr. Perloe further went on to say that "birth Control Pills, Danazol, Lupron, Synarel, Zoladex, Depo-Provera and Norplant have not been proven effective as either primary or adjunctive therapy (combined with surgery) for Endometriosis related infertility. While the use of medical treatment may decrease inflammatory reactions making surgical correction easier and reduce Endometriosis-related pain, use of these medications in patients with minimal disease is of no proven benefit in treating infertility."⁽⁶⁾
  
  
• Medical Therapy Combined with Surgery - in women with more severe Endometriosis (stage III or IV), medical therapy may be combined with surgery to provide even better results. Frequently physicians prescribe the medication prior to surgery to reduce the number and size of the lesions. Surgery following medical treatment is much less likely to destroy healthy tissue and cause adhesions. To reduce inflammation and clear up any remaining Endometriosis, medical treatment is also prescribed following surgery. Reportedly, this approach increases the chances for women with severe Endometriosis to become pregnant. Some physicians, however, feel that since the highest levels of fertility immediately follow surgery, postponing ovulation with postsurgical medical treatment may rob you of your best chances for pregnancy.⁽⁷⁾
  
  
• IVF and ART - some women may decide to go the route of assisted reproduction. Talk to your physician about what options might be best for you.

• Aromatherapy: lavender, geranium or rosemary for stress and tension; rose and lemon balm for their affinity with the female reproductive organs; cinnamon, peppermint and ginger for their "tonic" effect and increasing circulation to the organs.  Can be massaged in a carrier oil, inhaled or added to bath.
  
  
• Acupuncture:  see your acupuncture practitioner for your specific acupoints.
  
  
• T'ai Chi Ch'uan: ask your teacher for the specific exercises best suited to your situation.
  
  
• Herbs:  Agnus Castus, said to stimulate ovulation.  False unicorn root, to stimulate the ovaries themselves.  Wild Yam for regulation of hormone; rosemary for liver function. DO NOT TAKE WILD YAM OR FALSE UNICORN IF YOU ARE OR SUSPECT YOU MIGHT BE PREGNANT.
  
  
• Naturopathy:  avoidance of caffeine and ingestion of only organic fruits and vegetables.  Restrict alcohol and smoking, which reduce blood flow to the cervix and increase prolactin.  Stimulate circulation by alternately splashing hot and cold water on the genital area to stimulate circulation; no hot baths before intercourse (sperm needs cool temperatures to survive).
  
  
• Homeopathy:  Sabina 6c for miscarriages before 12 weeks; Sepia 6c for irregular periods and mood swings.
  
  
• Ayurvedic:  Shatavari root.  Also: asparagus fenugreek, garlic, onion and licorice (DO NOT TAKE LICORICE  IF YOU ARE OR SUSPECT YOU MIGHT BE PREGNANT) are said to invigorate the reproductive organs.
  
  
• Nutritional Support:  You will likely be told to avoid, as above, smoking and alcohol, as well as red meat and tea.  Foods rich in vitamin E may be suggested, to protect fatty tissues.  Also seeds, legumes and oily fish are also recommended, as well as evening primrose oil, starflower oil, linseed oil, borage seed oil, and blackcurrent oil.  Folic acid and B12 supplements are suggested, since anemia can be associated with infertility.
  
  
• Also ask a trained specialist about massage, Yoga and Qigong.

Other resources:

RESOLVE - Resolve is a wonderful non-profit organization with Infertility Fact Sheets and support groups all over the nation. Fact sheet topics include "getting started," "infertility myths and facts," "preserving your fertility," and other current issues affecting the infertility community.

Fertilethoughts - offers forums for different topics such as general infertility, donor egg/sperm issues, IVF and other high-tech treatments, male factor infertility, over 35, step-parents dealing with infertility.

Child of My Dreams - offers Infertility information, resources and support for people facing the challenges of infertility.

Infertility Nook - has collections of articles, FAQs, and links about infertility.

References:
(1), (2), (3), (4), (6), (7) Excerpted from "Miracle Babies and Other Happy Endings for Couples with Fertility Problems," Copyright © 1986 Mark Perloe M.D. and Linda Gail. Visit Dr. Perloe online at www.ivf.com
(5) Fertility and Sterility 2000;74:1-8.
(8) "Encyclopedia of Healing Therapies," Copyright © 1997 by Dr. David Peters and Anne Woodham

Copyright ©2000-2002 by Heather C. Guidone. All rights reserved. Do not reproduce without express permission.