Question:
I have had very much the same symptoms as you.I had a left ovarian cyst rupture only to find I had endometriosis. I went on800mg ofDanocrine for 6 months only to lose my singing voice and spoke like a man. Iwas a vocal performance major and could not finish my studies. I was not toldthis could possibly happen and was devistated, as I still am. I then hadanother laser surgery with good results. Several years later due to pain Iwent to the University of Kentucky Reproductive Medicine and Dr. Emory A.Wilson performed laser surgery. I was diagnosed with Stage 4 endometriosis.After this surgery I felt better than I had in years and remained this wayuntil I became pregnant. I did not know I was pregnant because I had nosymptoms. We were so excited, but soon after I miscarried. A week later Ihadsevere cramping pain and had to have a D&C and additional laser surgeryonly tofind a cyst on my right ovary the size of a grapefruit which they drained andfound multiple adhesions on my ovaries, tubes, intestines, and bowels. Istarted taking injections of lupron depot, only to get off of this because Iwas afraid it too might damage the new voice I had been told I could neverhaveagain. (It's still very hard and emotionally stressing) I used to havediahreabut now I'm lucky if I have a bowel movement once a week. The pain in myabdomen and right ovary is excrutiating. Sometimes I'm down for days. Istillhave a right ovarian cyst the size of a large tangerine. It cannot be removedbecause it is embedded in my ovary (I am told) due to adhesions and I had athird of my left ovary removed. I want to have a child so, so bad. But, thatisn't an option right now unfortunatly. I am in so much pain daily and I amscared this cyst might rupture. I don't want to go back on male horomones. Ihave very recently started seeing as medical doctor who practices holisticmedicine in Nashville, TN. He has started me on several herbs, hassuggested Igo off birth control, and suggests colonic irrigations. I am concerned forthesafety of this ovary. Does anyone know if this is safe? Susan, pleasetell memore information about your surgeon Dr. Redwine or anyone else out there whocan refer me to a specialist who is meticulous. I know I have written a bookbut, I felt the need. I'm desperate for help and my health back.

Answer: One of many things that I don't like about hormone suppressivetreatment is that the medications are often dispensed withoutwarning the patient of possible adverse effects. As youare painfully aware, a vocal performance major would chosesomething other than danocrine as her treatment if she knew inadvance about the voice-deepening effects of this drug. Sowhy don't they tell us about the effects of different treatmentsso we can make informed choices?!?

I have not heard of lupron causing any adverse voice effect,but I personally don't like lupron and would never advocateits use in endometriosis treatment (this is of course anindividual choice). There is a valuable resource, The NationalLupron Victims Network, which may be able to provide moreinformation on this. The NLVN has a web site:http://www.voicenet.com/~nlvn/index.html

Of course I'm not a doctor, but I would think that with a cystembedded in an ovary, going off birth control pills couldbe dangerous. I would be worried about this. Birth controlpills suppress ovulation and might be keeping this cystfrom becomming too irritated. I think it would be a goodidea to get a second (third, fourth) opinion on this.

Herbs are medicine, and I'm glad that a doctor is supervisingyour use of them. Some people think that herbs are harmlessbecause they are natural, but some of them are very potent,and the effects are sometimes unpredictable. As for thecolonic irrigations, they might (or might not) help you feelbetter but they certainly won't do anything about the cystor adhesions or the endometriosis lesions.

The only way to kill endometriosis is to surgically remove it.Also, I had wedges of tissue cut out of each of my ovariesto remove cysts. It's important to get the wall of thecyst so it doesn't return. Although I lost some ovariantissue in this way, I am still ovulating and producingnormal hormones.

I firmly believe that the best thing we can do aboutendometriosis is a thorough surgery to remove the lesions.Tracking down and removing every visible trace of endometriosistissue is tedious and time consuming. It may require theefforts of a gynecologist and a general surgeon workingas a team. I am very happy with the results of the surgeryI had with Dr. Redwine. He has a web site:http://www.scmc.org/endo.shtml

Another doctor closer to you who has a good reputationas an endometriosis surgeon is Dr. Dan Martin. I believehe is in Nashville.

I don't want to sound alarmist, but if you hope to becomepregnant, it's important to have the endometriosis treatedwithout delay. When endometriosis is allowed to persistfor years causing damage to pelvic tissue, an immunesystem problem may be created which can interfere withpregnancy.

It is so devastating to have this illness destroy allour dreams.

It may take some time to find an excellent surgeon.In the meantime, you might want to ask your doctor aboutusing Citrucel to regulate your bowel function.Constipation only makes the pain worse, and youalready have plenty of pain!