Scott Sills, MD, presents "Endometriosis, PCOS,
and Recurrent Pregnancy Loss"
Sunday, March 7, 1999
Mary "Hello Dr. Sills. Welcome!"
Barbara "Good evenbing Dr. Sills"
Stacey_b "Hello Dr Sills. I am Stacey. I am new to the chat. I have endo and I have a few questions for you."
Crescent "Hi Dr. Sills"
Dr Sills "Thank you for the kind welcome..and thanks to Bruce for tech/support !"
Stacey_b "I was wondering how I could treat my endo without using hormone drugs due to other health problems and I believe those drugs would affect. I was first diagnosed 2 years ago but I believe I have had it for 14 years."
Dr Sills "This is a difficult goal. Endo is hormonally sensitive, so most treatments rely on that. What is your concern?"
Stacey_b "I have a family history of osteoarthiritis in my family and I also have arthritis. I am currently taking Darvacet for the pain and they quit working for me. Any suggestions as to what I can do or take? I have tried herbs also."
Stacey_b "I am currently thinking about having my uterus removed because that seems to be where all the pain is. Do you think this will work?"
Dr Sills "I would think about asking your doc about bone density studies, with a view to eventually using lupron or other GnRH-a agents. Would reserve hysterectomy for last resort."
Stacey_b "Right. Doesn't lupron have serious side effects?"
Dr Sills "serious is rather strenuous. I have used it a good deal and most patients are happy with it or synarel. It all depends on the details..."
Stacey_b "My doctor wants to put me on the pill but I have tried it twice and have gotten very sick off of it. I have a high rate of allergies to alot of drugs."
Dr Sills "I see. There are 2 basic options. Either under go a "desensitization" process via allergist, or explore surgical cure (ie Hysterectomy)."
Stacey_b "What is desensitization? I have never heard of it before."
Dr Sills "You have no doubt heard of allergy shots. This is the same thing. When someone has a penicillin allergy, but that is the only drug possible to remedy the disease, "desensitization" is done. Then pcn may be safely given."
Stacey_b "Okay. Thank you for your help."
Robinmk "How common is having endo IN the bladder? How is it treated if that is my problem? I do have a history of enxtensive endo on the urinary tract, not to mention everywhere else. I am going to be scheduled for a cysto as soon as my UTI clears up. I'm also"
Barbara "Dr. Sills what is the reason hormones work for endo patients?"
Robinmk "told I could have a band of adhesions around the outside of the bladder...can this be seen at all from the inside??"
Dr Sills "They work because the very same hormones that trigger normal cycles are believed to cause the painful symptoms of endo. Blockage of hormones then cut down on those symptoms."
Dr Sills "About the bladder endometriosis....I would adopt the same strategy as outlined above. It would likely require hormonal supression, and that would be my initial choice."
Robinmk "I have already been on Lupron and developed osteoporosis from it."
Dr Sills "Were you on estrogen add-back therapy?"
Robinmk "yes"
Robinmk "I was getting .625 of premarin and 2.5 of Provera"
Dr Sills "That dose of estrogen may not have been sufficient, particularly if you are very young."
Robinmk "How common is endo *in* the bladder?? I am 32....I feel like I am 90 many days though ;o)"
Dr Sills "Endo there is relatively common. Was that diagnosed via cystoscopy?"
Robinmk "Is there anyway that if I had a band of adhesions around the bladder that it can be seen from inside, or would it really have to be strangling the bladder (meaning showing indentions..if that is possible even)"
Robinmk "I am waiting for a UTI to clear and then going in, they are basing the probability on it from my symptoms as well as previous history of it being ON the bladder and the rest of the urinary tract"
Dr Sills "You are correct, in general. Those type of constrictions would be best seen via laparoscopy."
Dr Sills "Another disagnosis to consider is interstitial cystitis; like endo--a mysterious disease process."
Robinmk "The doctor said he is going to take several biopsies as well...."
Dr Sills "Good. Biopsy-proven endo really is the only proven endo."
Robinmk "The ditropan stopped working....waking up 10 times a night to urinate but usually only go maybe 3 times if that......this is almost more frustrating than the endo!!!!"
Dr Sills "But remember, yours is only a provisional diagnosis of endo at this time. Infection has been ruled out, I presume."
Robinmk "I do have a UTI....yes, it is provisional, but I am obsessing over here...the doc feels since I had such a severe case of endo and with the blood and the other symptoms, it is a real possibility......"
Robinmk "I want the answer yesterday!! Can't do anything until the infection has cleared he said!"
Dr Sills "The infection must be treated first, of course. Yet one question remains...how was the dx of endometriosis made in your case? have you had laparoscopy?"
Robinmk "Yes, I have had two laps....most recent was in June 1998..prior to that was Feb. 1998.....My last lap was with Dr. Albee"
Dr Sills "And were biopsies done confirming the diagnosis?"
Robinmk "yes, I had 8 biopsies and all but one came back with endo.....I was covered..."
Robinmk "I also may have adeno....so it is a challenge"
Dr Sills "So then you went on lupron (or equivalent), only to develop osteo. What was the extent of your lupron tx? Have you had a recent bone density study?"
Mary "Dr Sills, there was a piece on the local news this past week about insulin levels being lowered if a person had 2 teaspoons (or was it tablespoons ?) of apple cider vinegar before meals. Any truth to that? If so, would this help someone with PCOS who cannot take Met or Rez (because they are breastfeeding)?"
Robinmk "I had Lupron therapy with the prior to and during my first lap for seven months...going for a follow up bone density this Thursday at Northside Outpatient."
Dr Sills "Category B agents (including tylenol) are not contraindicated during lactation. I am not familiar with the spoon remedy, however."
Dr Sills "So the dx of osteopenia has yet to be made, in any case?"
Robinmk "I had a bone density done last year and was diagnosed with osteoporosis.....this is the follow up from being on Fosamax"
Dr Sills "I see. Have you considered progesterone therapy? For patients where GnRH-a is not possible, this may present another way to escape symptoms."
Robinmk "No, I have not thought about that, but that is something to definitely discuss with my doctor......"
Robinmk "Thank you Dr. Sills so much for all of your help.....I apologize for taking up so much time......."
Dr Sills "Let me know how it goes! And I hope it proves satisfactory for you. I had many endo patients in NYC who were very happy with progesterone."
Mary "Dr.Sills, my OB/GYN and RE won't finish PCOS testing while I am breastfeeding."
Robinmk "I am quite impressed by your thoroughness. I will definitely let you know how it goes. May I email you??"
Mary "So I was wondering if the vinegar thing would help out in the interim."
Dr Sills "That is wise. I usually defer any testing until after breastfeeding is complete. The changes are simply too numerous to account for with current laboratory testing."
Mary "I previously, 2 yrs ago, only had one hormone level that was high, DHEAS."
Barbara "Robin I will forward your email to Dr. Sills"
Dr Sills "As far as the vinegar therapy goes, it is highly acidic and not likely to affect insulin metabolism. If it did, then the metformin folks would be telling us to use vinegar to wash down the glucophage pills."
Dr Sills "Did you have a fasting insulin level measured prior to pregnancy?"
Mary "That makes sense. My OB/GYN insists DHEAS is made exclusively in the ovaries and everything I have read and heard says it is the adrenals. So I'm not sure how accurate his info is. No, the only thing other than various hormone levels was an ACTH Stim Test."
Mary "Which was negative."
Mary "I did have the 1hr glucose screen and 3 hr GTT during pregnancy. But that is different, right?"
Dr Sills "That is amazing, indeed. DHEAS derives only from adrenal tissue--other theories should be published in the medical literature for the benefit of mankind!"
Mary "LOL! I guess I need to take *proof* in to him."
Dr Sills "Your case of PCOs must have been mild, in any case...since a conception occurred. Was that spontaneous, or did you require medication?"
Mary "Both of my babies are clomid babies. I used to have 1 or maybe 2 periods a year."
Dr Sills "I see. is there a history of diabetes in your family?"
Mary "Nope."
Dr Sills "With the exception of high DHEAS, did you display any other features of PCOs?"
Mary "Unfortunately yes. Most symptoms."
Dr Sills "Have you taken metformin yet?"
Mary "But not as severe as others I have met. No, I have not because the RE wants to *officially * diagnose PCOS after I am done breastfeeding my daughter. My OB/GYN said I had PCOS based on the high DHEAS."
Mary "He never did an exam or asked about the other symptoms."
Mary "The GYN, that is. The RE did a thorough exam and the ACTH Stim Test and said come back when not pg or bfing."
Mary "So, I am waiting and all my PCOS symptoms are surfacing again."
Dr Sills "So you will need to have a fasting insulin included as a component of that work-up when the time is right."
Mary "Fasting insulin is also not advised while bfing?"
Dr Sills "Agree. I would not recommend that. What are your symptoms now (vis-a-vis PCOs)?"
Mary "They are mild: acne, hair loss, excess hair growth, deepened voice, and a few extra pounds."
Mary "And anovulation but I'm sure the bfing accounts for that."
Dr Sills "The hormonal roller-coaster of the post partum period can produce some of those same symptoms, but I agree that a full work-up is appropriate."
Mary "Thank you. I am not a patient person so the waiting is hard. However, bfing my baby is a higher priority."
Dr Sills "Do not deviate from that perspective!!"
Stacey_b "What is the classification of endo (cancer has a classification...Etc.)"
Dr Sills "Staging of endometriosis...that's what interests you, right Stacey?"
Stacey_b "no. Cancer is a disease that attacks the body in a certain way. Endo attacks the body in a certain way as well. Have they figured out on a cellualar level how endo attacks the bodies organs?"
Stacey_b "These drugs that you talk about don't kill the endo they just put it in a type of remission state."
Dr Sills "That remains a mystery, as it does with malignant disease. There may be an immunological role for both, however."
Dr Sills ""remission" would be fine for most patients....if that meant the pain were in "remission" too."
Stacey_b "Do you know how they figured out what drug would help decrease the endo? Would chemo work on endo if I was done having children?"
Stacey_b "Can endo be treated as a type of cancer?"
Dr Sills ""Yes", and "no way" Anti-estrogen agents work by removing a growth signal to endo. Anyone trying to conceive should never take this type of medication."
Robinmk "How do you define "remission"? Is it one day, one month, five years...when talking about Endo??"
Stacey_b "forever if possible"
Robinmk "I have heard some women say that they did not have any pain for two days and felt they were in remission...."
Dr Sills "I define remission as when the patient says, "I've got my life back" Remember, there is no 5-year survival data on endometriosis, because no one has died from it."
Crescent "Should everyone who is diagnosed with PCOS have their insulin level checked?"
Robinmk "Thank you very much Dr. Sills. You have been an extreme help tonight!!!!! I hope you come back more often."
Dr Sills "In my opinion, yes. Otherwise a patient trying to conceive may be refractory to clomid, be placed on that medication, and waste time & money."
Stacey_b "Thank you doctor. I didn't mean to rack your brain."
Crescent "thank-you"
Dr Sills "I hope it was helpful, and feel free to contact us here if you think of additional queries."
Kourtney "What other treatment could someone try when all others have failed cont. BCP's, provera, aygestin . The lupron worked but I cant be one it forever. I have no children."
Dr Sills "In these cases, I regroup to make sure the dx is correct. If it is, then ablation of endo implants via laparoscopy may be very helpful. I would also look at lifestyle issues, because it is important not to "medicalize" all pain."
Kourtney "I've had laparoscopy to remove some of it"
Dr Sills "Kourtney, you may need another procedure if your pain is severe"
Barbara "Thank you from all of us at OBGYN.net for being here tonight Dr. Sills."
Stacey_b "Thank you Dr Sills for all your patience."
Kourtney "Thank you"
Robinmk "Thank you again very much Dr. Sills for being so helpful!!!"
Dr Sills "You are most welcome...and Captain Mark Perloe MD will be back here SAME BAT TIME,,,same BAT CHANNEL"
Mary "Thank you Dr. Sills, it was nice to meet you!"
Crescent "Thank-you"
Barbara "Same BATMAN!"
Dr Sills "I suppose I should say Admiral Perloe, when he returns from the high seas. Signing off now...."
Barbara "Good night everyone."