Welcome to the Wisconsin Fertility Institute, and thank you for your interest in our endometriosis and pelvic pain treatment program. This document is designed to act as a resource for you as you begin the journey through the complex world of endometriosis treatment options. We have attempted to provide as many answers to your questions as we could anticipate. However, this is not a stand-alone document meant to answer all your questions and concerns; rather, this packet is meant to provide an overview and to supplement information obtained from your doctor, other members of the Wisconsin Fertility Institute, and other members of our Endometriosis Treatment Team.
Here at WFI, we are firm believers in the partnership between our medical team and you, the patient, to achieve a goal that is decided upon in a collaborative manner. We do not practice paternalistic directives; nor do we pretend to necessarily know what is always in your best interest. Instead, we will do our best to explain what we prefer to do and why we do it. If you feel confused or pressured, please speak up and let us know as this is not our intent. We strive to create an atmosphere of trust and cooperation, and we can only do that if you are an active member of the team voicing your concerns if you feel your needs are not being met.
We realize that endometriosis and pelvic pain are very difficult life issues that are often not well understood by those you regularly interact with. We also understand how anxiety-provoking and frustrating the process of diagnosis and treatment can sometimes be. To this end, we have attempted to minimize the stress by providing a safe, comfortable environment. Our partners on the Endometriosis Treatment Team feel similarly, and please know that we are all working together to try to meet your needs.
Once again, thank you for your interest in and support of the Wisconsin Fertility Institute. We sincerely hope to help you successfully deal with the discomfort that you now experience, and we are honored to have the privilege of working with you.
When choosing surgery for endometriosis, there are a number of decisions that must be made. The first such decision point is whether conservative surgery or hysterectomy is desired. If the approach is conservative, there are choices in the method of access, the method of treating implants, and the type of surgery done for endometriomas. Finally, there may be a need for other actions to be taken at surgery such as cutting and removing scar tissue, removing the appendix, and interrupting key nerves that transmit pain from the pelvis. Your surgeon should review all of these issues with you prior to the surgical procedure.
(1) Conservative Surgery vs. Hysterectomy
Most surgeons performing surgery for endometriosis must choose one of two possibilities: conservative surgery, where the patient’s future fertility remains an option, or hysterectomy (generally with removal of the ovaries). The general perception is that hysterectomy is more effective over time than conservative treatment, but it must be reserved for patients in whom fertility is no longer desired.
Unfortunately, hysterectomy and removal of the ovaries do not ensure that you will obtain relief: the incidence of continued or recurrent pain is still about 10%.
(2) Method of Access
When conservative surgery is desired, there are options for how to access the inside of the body. Traditionally, surgery was performed through large skin incisions (laparotomy or open surgery). More recently, though, gynecologists have been able to perform surgery through small incisions with the use of specialized instruments and a telescope (laparoscopy). This latter approach, using laparoscopy, is best for the patient because it is less invasive, less painful, and leads to a more rapid recovery. It also generally results in less scar tissue forming as a result of the surgery. Also, the magnification of the telescope allows the surgeon to see better during surgery and be more accurate in removal of disease. Finally, it is usually far less expensive.
However, laparoscopic surgery is technically much more difficult to perform than open surgery. When the surgery for endometriosis becomes difficult due to the amount or location of disease, many surgeons will opt to perform the surgery through a large skin incision. However, surgeons who have received special training in advanced laparoscopy will generally be able to perform most, if not all, surgical procedures for endometriosis through small incisions. The surgeons at the Wisconsin Fertility Institute have such training as well as considerable experience in performing even the most difficult endometriosis surgeries through the laparoscope.
A recently developed tool that aids significantly in the performance of surgery for endometriosis through the laparoscope is the robot. Robotically-assisted laparoscopic surgery has advantages in that vision is three-deminsional, instrumentation is easily operated within the confines of the pelvis, and magnification is much greater. This allows us to perform a more thorough yet safer surgery to eliminate the disease.
(3) Method of Destruction of Implants
Surgical destruction of endometriosis lesions can be accomplished in one of two ways: ablation and excision. Ablation of the disease means that the endometriosis is not removed from the body but rather destroyed where it lays. The method of destruction may be by electrical heat or laser. The advantage of this approach is that it is much easier for the surgeon. Also there is much less danger to surrounding structures such as bowel, bladder, ureter, and large blood vessels. However, there is considerable danger that the entire endometriosis implant may not be removed, as such lesions are frequently deep (so that only the top is destroyed) or wider than the surgeon thinks (as the edges are sometimes difficult to see). If endometriosis is left behind, the chance of pain after surgery is much greater.
By contrast, excising the endometriosis is a much more complete procedure. To do this, the surgeon must make an incision around the entire area of endometriosis and dig out all the disease, no matter how deep. This requires considerable skill, as endometriosis frequently lies close to other very important structures in the pelvis that are easily damaged. Thus, there is considerable risk with this type of surgery, and even the world’s best endometriosis surgeons have serious complications on occasion. However, there is no doubt that better pain relief is obtained by excision of disease; unfortunately, there is also a risk of more scar tissue than with ablation, which may damage future fertility.
Surgeons at the Wisconsin Fertility Institute are highly experienced in performing both types of surgery through the laparoscope, and thus are capable of tailoring the surgery to your needs for pain relief and future fertility.
(4) Method of Treating Endometriomas
Endometriomas are cysts of the ovary formed by endometriosis and they can grow quite large and become very painful. A common approach to the treatment of these cysts is to remove the ovary (sometimes even the ovary and fallopian tube). However, this is rarely necessary. The goals of treating ovarian endometriomas are (1) to remove all endometriosis in the ovary, (2) to minimize damage to the ovary, and (3) to minimize post-operative scar tissue.
When operating on endometriomas, the ovaries should first be freed of all scar tissue. The endometrioma is then carefully removed from the rest of the ovary. It is not acceptable to simply drain the fluid from the cyst and leave the lining behind, as the chance of the cyst reforming is very high. Instead, the entire cyst wall is removed, and the ovary carefully repaired. When repairing the ovary, sewing it closed is preferred to using electrical energy, as the electricity can damage the normal tissue of the ovary.
(5) Other procedures frequently performed
a. Lysis of adhesions (cutting and removing scar tissue)
When scar tissue is present in the pelvis it can result in pain and fertility problems. Removing this abnormal tissue is important in endometriosis surgery. Also, it is important to try to prevent the formation of new scar tissue after surgery. This is best accomplished with careful surgical technique, but is aided by using special materials that decrease the formation of scar tissue. Most commonly used is a material called Interceed.
b. Appendectomy (removal of the appendix)
The appendix has endometriosis in it in as many as 1 in 6 cases. It should always be carefully inspected and removed if it appears abnormal, as there is little risk to the procedure and substantial gain if endometriosis is present. Furthermore, in women with pelvic pain, it is advisable to remove the appendix so that future bouts of pain are not confused with appendicitis. Also, if it is left in a future appendicitis might be written off by your doctor as the “usual” pelvic pain with disastrous results.
c. Nerve interruption procedures
Two surgical procedures are designed to help reduce pain transmission in the patient with endometriosis-associated pain: the uterosacral nerve ablation/resection and presacral neurectomy. Both involve interruption of the nerves that send pain from the uterus to the spinal cord. Of the two, the presacral neurectomy is far more successful and more difficult to perform. The difficulty lies in the location of the nerves, just below the aorta and vena cava (the largest blood vessels in the body). Surgeons at the Wisconsin Fertility Institute are quite experienced at performing these procedures through small incisions. Our team members at Advanced Pain Management are able to determine if you are likely to get substantial pain relief from these complex but valuable procedures.
(1) Oral Contraceptives (Numerous brands)
Birth control pills (oral contraceptives or OCPs) have been used to treat endometriosis for more than 40 years. The treatment was based on the early observation that pregnancy, with high levels of both hormones, produces improvement of pain. Today, oral contraceptives are the most commonly prescribed treatment for endometriosis symptoms.
Side-effects of OCPs are multiple, but not terribly frequent. Estrogens may cause nausea, high blood pressure, blood clots, and enlargement of the uterus. The progestogen portion of the pill may cause effects such as acne, hair loss, increased muscle mass, decreased breast size, and deepening of the voice.
Oral contraceptives have been documented to improve endometriosis-related pain symptoms in about 80% of women, making this the first-line drug for treatment of the disease due to the low cost and few side effects. Unfortunately, many women will have symptoms that progress to the point that OCPs no longer provide relief.
(2) Danazol (Danacrine)
Danazol is a derivative of the male hormone testosterone. It was originally thought to work by medically producing a hormonal state similar to menopause, but subsequent studies have revealed the drug to act primarily by causing a shutdown of ovulation. It may also work to interfere with the production of the body’s hormones and increase the amount of male hormone in the blood, resulting in an antagonism of the effects of female hormones. The recommended dosage of danazol for the treatment of endometriosis is 600 to 800 mg/day; however, these doses have substantial side effects such as increased hair growth, mood changes, deepening of the voice (possibly irreversible), and rarely, liver damage (possibly irreversible and life-threatening) and blood clots in the arteries. Studies of lower doses as primary treatment for endometriosis-associated pain have been small and there is limited information. However, there is a suggestion that very low doses such as 50-100 mg/day can substantially reduce the pain of endometriosis without the hormone’s side effects. The usual course of therapy lasts 6-9 months, but there is considerable variation from patient to patient.
Pain relief has been well demonstrated with danazol, with 84 to 92 percent of women showing improvement. Recent evidence suggests the average time to pain recurrence following discontinuation of the medication is 6.1 months. Thus, the drug does seem to produce pain relief, but for a limited duration in many. There is no evidence that danazol will enhance rates of conception in women with endometriosis-associated infertility.
(3) Progestogens (Provera, Aygestin, Mirena IUD)
Progestogens are a class of compounds that act like the natural hormone progesterone. These drugs have been shown to decrease pain associated with endometriosis.
The most extensively studied progestogen is medroxyprogesterone. The drug was originally used orally for the treatment of endometriosis, with doses ranging from 20mg to 100mg daily. However, the injectable form has also been used, in a dose of 150mg every three months. This injectable form, called Depo-Provera or depot medroxyprogesterone acetate, has recently been approved for use to treat endometriosis-associated pain by the Food and Drug Administration. Side effects of medroxyprogesterone are multiple and varied. A common side-effect is vaginal bleeding, which occurs in 38% to 47%. This is generally well tolerated and, when necessary, can be adequately treated with a small change in hormone dose. Other side effects include nausea (0% to 80%), breast tenderness (5%), fluid retention (50%), and depression (6%). All of the adverse effects mentioned here resolve upon discontinuation of the drug.
Norethindrone acetate (Aygestin) has also been utilized as a treatment for endometriosis in doses of 5mg to 20 mg daily. Side effects are similar to those seen with medroxyprogesterone.
Levonorgestrel has also been utilized recently, via an intrauterine device delivery system called the Mirena IUD. It has been touted as an excellent treatment for deep pelvic endometriosis and particularly pain with intercourse, although there are few studies to support this. Nevertheless, many patients get considerable relief from the IUD, and enjoy its ease of use (it lasts for up to 5 years). However, in some the discomfort occasionally associated with the device may lead to early removal.
Studies of the effectiveness of these agents in combating pain suggest that progestogens are as effective as other medical treatments in easing the pain of endometriosis, but with a different side-effect profile. Thus, over 80% can expect to get some relief. There is no evidence that progestogens can improve fertility rates in women with endometriosis.
(4) GnRH-agonists (Lupron, Synarel)
Gonadotropin releasing-hormone agonists (GnRH agonists) result in a low estrogen state similar to that of menopause. It does this by preventing the production of hormones that stimulate the eggs in the ovary. This causes the ovary to produce very little estrogen, just like in women after menopause.
This drug can be given intranasally, subcutaneously, or intramuscularly depending upon the specific product, with frequency of administration ranging from twice daily to every three-months. The side effects are vaginal bleeding, hot flashes, vaginal dryness, decreased interest in sex, breast tenderness, insomnia, depression, irritability and fatigue, headache, brittle bones and decreased skin elasticity.
A recent modification of GnRH-agonist treatment is to “add back” small amounts of hormone in a manner similar to that used in the treatment of post-menopausal women. Add back therapy results in an equivalent rate of pain relief with far fewer side effects than GnRH agonist alone. The add-back regimens found to be of value are combinations of small doses of estrogen and progestogen (Prempro, FemHrt) or progestogen alone (Aygestin). Estrogen alone is not effective as add-back, as pain quickly returns in patients so treated. The same is true for using birth control pills as add-back, as the dose of estrogen is too high in these pills (even the low dose pills).
The effectiveness of GnRH agonists in the treatment of endometriosis-associated pain has been shown time and again in many studies. While it may be no better than other therapies initially, it is the “go to” drug when patients have failed the easier, less expensive therapies. Its use with add-back therapy is now the standard of care; there is no reason today to take these medications without add-back therapy and suffer the side effects of menopause.
Treatment of endometriosis-associated infertility with GnRH-agonist has not proven to be of value.