Wendy’s Story: Wendy, a thirty-one-year-old manager of a Florida boutique, has been married for three years. She has been trying to get pregnant but has encountered many difficulties. Wendy described her crisis: ‘After doing a laparoscopy on me, my doctor told me 1 didn’t have endometriosis. He said I was okay, yet I’m in pain two weeks of every month. I want a baby, but its hard to fed sexy when you feel so bad. Even so, I’ve been pregnant three times in the last two and a half years, but I have miscarried each one. What could be wrong with me?”

Wendy’s plight is one many women with undiagnosed endometriosis understand all too well: pain, infertility, and no adequate explanation tor their symptoms. In the past, it was felt that endometriosis in a more advanced stage prevented pregnancy because cysts and massive adhesions set up a hostile environment for conception. Most recent research into the subject, however, has revealed that a one-to-one correlation between infertility and endometriosis exists at earlier stages, too. (A chapter devoted to this will explicate further.) This research on earlier-stage endometriosis is particularly relevant to Wendy’s case.

A team of doctors at the University of Kentucky Medical Center’s Reproductive Endocrinology Department in Lexington concluded, in their 1985 study, that women with mild endometriosis suffered twice the number of spontaneous abortions, or miscarriage, that women with the disease at a more serious stage suffered. In examining this phenomenon, Michael Vernon, Ph.D., and his colleagues speculated that early or milder endometriotic lesions might be more “metabolically active” and produce prostaglandins, the hormones that have been implicated in the activity of endometriotic tissue. Prostaglandins might be partially responsible for infertility and miscarriage, since they cause uterine and tubal cramping, thus making conception and full-term pregnancy more difficult.

In further testing, they examined various types of implants, from very mild to serious. These implants have, in fact, been classified on a rating system to standardize their description for doctors. Devised by the American Fertility Society this system charts and describes implants by color and degree of growth, and rates them on a scale of severity from I to IV. (See the illustration on page 66.) Implants may be red, reddish brown, dark brown, or black (also known as powder bum). The Kentucky team also discovered that the “mildest” implants produced and synthesized twice the amount of prostaglandin F that implants at an intermediary stage produced, which in turn produced more of the hormone than the powder-bum variety, (In some expertments, powder-burn implants produced no such hormone.) This explains why women with minimal endometriosis sometimes experience more pain than women with massive growths. (Massive growths arc simply easier to identify.)

Wendy’s doctor clearly suspected endometriosis—no doubt this reason for performing a laparoscopy. That he was unable to find any obvious trace of the disease led to his conclusion that she was free of it. My advice to Wendy is to return to her doctor to begin a program of Danocrine to halt endometriotic growth, and to start on a diet high in complex carbohydrates and rich in B vitamins—the vitamins that are important in combating stress and favoring conception.

*38\43\4*

Most endometriosis sufferers have felt depressed at some stage for one reason or another. Suddenly you have to come to terms with having a chronic illness. There is the constant tiredness and the frustration of feeling lethargic. Sexual relations are put under enormous stress if you suffer pain during intercourse. Pain may also interrupt your lifestyle.

Treatment may not be effective and you worry about what alternatives you may be faced with. So many of your questions seem to go unanswered and at times you really feel as though you are unable to get on with your life.

For those who have fertility problems there is the concern that perhaps you may never have a child. And if you are lucky enough to get pregnant will you miscarry? Will the disease hinder a normal delivery?

Many of us become depressed thinking about the future management of the disease. Will you be faced with more hormone treatment? Will you require more surgery?

*108\83\2*

Diagnosed with endometriosis at the age of 2 7,1 was told that the best treatment was to take the male synthetic hormone, Danazol. I had to take 600 milligrams a day for nine months. I was a little apprehensive about taking Danazol but realised that not all women suffered the side effects that I had read about. I decided that if the Danazol was going to get rid of the terrible period pain I was suffering every month then I was prepared to take the tablets.

Every day whilst on the medication I looked for side effects from the drug. I jumped on the scales every morning to see if I had gained weight. I peered in the mirror to see if I was growing a beard and I inspected my skin to make sure

I wasn’t developing acne.

I was surprised that I actually felt good during the time I took Danazol. For the first time that I could remember my whole life didn’t revolve around my menstrual cycle. No periods and no pain for nine months was sheer bliss. I did develop a few side effects, but the relief I obtained from the pain far outweighed the side effects.

I gained about six kilograms in weight. This gain appeared to be more a body building, muscular weight increase which didn’t bother me. I experienced some nausea and occasional vomiting but it wasn’t a major problem.

The only other side effect I experienced which, unfortunately, has been irreversible was a deepening of my singing voice. My upper range decreased four tones. Luckily, I am not a professional singer but I still get frustrated occasionally at the change. At the end of the Danazol treatment, a laparoscopy revealed no evidence of endometriosis and I subsequently had two children. Seven years later I had another laparoscopy and was again diagnosed as having endometriosis.

This time I took the trial drug Buserelin, one of the GnRH agonists. It was in the form of a nasal spray. I took the drug for six months and during that time had no side effects. I had been told by my doctor that I might experience hot flushes, dry vagina, depression or headaches. Luckily, I didn’t experience any of them. Another laparoscopy at the end of the Buserelin treatment revealed that apart from one endometrial cyst, the endometriosis had disappeared.

Six weeks after this laparoscopy I was back in hospital having the cyst and left ovary removed. Although I was a registered nurse and familiar with hospital environments, I was still nervous at the prospect of major surgery.

I need not have worried — everything went according to the plan my doctor and I had discussed. I had a continuous morphine infusion for the first 24 hours after the operation — it was great, I experienced very little pain. I was up walking around the day after surgery and drinking and eating the day after that.

I was discharged from hospital five days after the operation and was back at part-time work and playing sport six weeks after the surgery.

Three years later I feel great. I still get some ovulation and period pain every month, but nothing like the severe, debilitating pain I experienced before I had treatment.

*50\83\2*

Making the decision about which treatment you will have is often difficult. You should allow yourself time to explore the options to make the decision that is right for you. Do not allow yourself to be pushed by others into making a decision.

In order to make the best decision you need to consider your lifestyle, goals, values and feelings, as well as the severity of your disease and its symptoms, and the purpose of the treatment. You also need to weigh up all the potential advantages and disadvantages of each of the treatments against the possible relief that it will bring.

Get as much information as you can. Make an appointment with your gynecologist to ask any questions that you may have.

Do not hesitate to get a second opinion if you have any concerns or doubts.

It helps if you discuss the issues with your partner, a friend or another woman with endometriosis.

No treatment offers a magical or permanent cure for endometriosis.

It is not possible to give reliable figures for the success rates of the different types of treatment because few large-scale studies have been carried out. Gynecologists believe that, overall, success is related to the severity of your condition: the milder your disease the more likely that your treatment will be successful. Nevertheless, there is a wide variation in the way women respond to treatment and it is not possible to predict how you will respond.

Women react differently to each treatment and you may find that you need to try two or three treatments before you find one that works for you.

Regardless of the type of treatment used, some women will have a recurrence of their symptoms. It seems that approximately 20% of women will have a recurrence within 12 months and as many as 50% will have a recurrence within five years.

Anne’s story

Diagnosed with endometriosis at the age of 2 7, 1 was told that the best treatment was to take the male synthetic hormone, Danazol. I had to take 600 milligrams a day for nine months. I was a little apprehensive about taking Danazol but realized that not all women suffered the side effects that I had read about. I decided that if the Danazol was going to get rid of the terrible period pain I was suffering every month then I was prepared to take the tablets.

Every day whilst on the medication I looked for side effects from the drug. I jumped on the scales every morning to see if I had gained weight. I peered in the mirror to see if I was growing a beard and I inspected my skin to make sure I wasn’t developing acne.

I was surprised that I actually felt good during the time I took Danazol. For the first time that I could remember my whole life didn’t revolve around my menstrual cycle. No periods and no pain for nine months was sheer bliss. I did develop a few side effects, but the relief I obtained from the pain far outweighed the side effects.

I gained about six kilograms in weight. This gain appeared to be more a body building, muscular weight increase which didn’t bother me. I experienced some nausea and occasional vomiting but it wasn’t a major problem.

The only other side effect I experienced which, unfortunately, has been irreversible was a deepening of my singing voice. My upper range decreased four tones. Luckily, I am not a professional singer but I still get frustrated occasionally at the change. At the end of the Danazol treatment, a laparoscopy revealed no evidence of endometriosis and I subsequently had two children. Seven years later I had another laparoscopy and was again diagnosed as having endometriosis.

This time I took the trial drug Buserelin, one of the GnRH agonists. It was in the form of a nasal spray. I took the drug for six months and during that time had no side effects. I had been told by my doctor that I might experience hot flushes, dry vagina, depression or headaches. Luckily, I didn’t experience any of them. Another laparoscopy at die end of the Buserelin treatment revealed that apart from one endometrial cyst, the endometriosis had disappeared.

Six weeks after this laparoscopy I was back in hospital having the cyst and left ovary removed. Although I was a registered nurse and familiar with hospital environments, I was still nervous at the prospect of major surgery.

I need not have worried – everything went according to the plan my doctor and I had discussed. I had a continuous morphine infusion for the first 24 hours after the operation – it was great, I experienced very little pain. I was up walking around the day after surgery and drinking and eating the day after that.

I was discharged from hospital five days after the operation and was back at part-time work and playing sport six weeks after the surgery.

Three years later I feel great. I still get some ovulation and period pain every month, but nothing like the severe, debilitating pain I experienced before I had treatment.

*32 /41/5*