Q & A : September 27, 2007. A case of PCOS

Dear Dr. Lee,
I was wondering if I could run my situation by u and get some advice or possibilities on what my prob. could be. I have been happily married for over 10 years now. I got preg about 10 years ago when we were first married and miscarried. I have not been preg. since. My periods were always irregular sometimes absent for months sometimes lasting for 3-4 weeks. I had an ultrasound and was diagnosed with PCOS - I have been on metformin for 5 months now and did 2 months of clomid and 3 months of letrozole with nothing. Now I am waiting for my husbands insurance to kick in to have laparoscopic surgery. My husband has been tested and he is fine so the prob lies somewhere within me - what could this be and do u think I could ever even become pregnant. I am 26. Yes, I got married young. I am desperate because my mother and all three of her sisters ended up having to have hysterectomies before they were in their thirties. Any advice would be appreciated. Thankyou.
"B", from Arkansas

Dear "B",
Can you provide some additional information?
Did you grow any follicles on the Clomid or Letrozole?
Did you ever try injectable fertility medications?
What is your approximate height and weight?
Did you have an HSG already to see if your tubes are open?
Dr. Lee

Dear Dr. Lee,
Just within the past two years we have decided to look into this and after a consultation and an ultrasound, I was diagnosed with PCOS. We also had my husband's sperm tested which came back fine. The doctor put on metformin and clomid. I did both for two months with no results. I then continued the metformin and did three months of letrozole. This too ended with no results. We are now at a holding point waiting for my husbands medical insurance to go into affect to take the next step in having laparoscopic surgery to find out more. Being that this was all paid out of pocket and we had no insurance, ( I would imagine this is the reasoning ), I was never told about any follicles growing while on clomid or letrozole. I did recently give a blood test to see if I was even ovulating but have yet to hear the results. I have not tried the injectable fertility treatment because after discussing it with my doctor, decided to start with a less expensive approach again until the insurance takes affect. I am not sure what a HSG is to see if my tubes are open and suppose if I had had one I would know so I guess I have not had that done. My mother and all three of her sisters all had to have hysterectomys in before or in their early thirties so at 26 I am getting more anxious. I am racking my brain trying to figure out what could possibly be keeping me from becoming pregnant especially since I was able to get pregnant 10 years ago.I am 5'4" and weigh 190 although before starting the metformin I weighed 211. As far as symptoms other than infertility, I have literally every symptom of PCOS in addition to migraine headaches, inability to sleep and when I do I have to have atleast 12 hours and even then it is difficult to wake up, and mood swings where I just get so depressed I cry (even tho I am normally a very happy fun person). A cat scan ran during one of my migraine trips to the hospital came back normal. The metformin seems to be working as I have been having normal, regular periods and little pain. Any information on what I need to do and what this could be would be greatly appreciated. Thankyou.

P.S. I have been nausiated and vomiting some the past two days and realized that this occurs without reason maybe twice a month and lasts 3-4 days. I did some more research on the internet and because of the pcos and being insulin resistant, do u think I could be diabetic? I noticed this amongst my "mood swings" and "hunger" and others were symptoms. Sometimes I wake up in the morning and cant make it to the cupboard fast enough for something sweet. Anyway, just a thought - I have been trying to put all this together for years now and I want to thankyou for all your help. I will be watching for your answer. Thankyou again.

Dear "B",
    You have been brave to endure such a long time suffering from PCOS, especially in the context of the frustration of not knowing why you were teased with a brief glimpse of being pregnant way back then. I do congratulate on your having been happily married all this time despite the obvious great stress of infertility. As, always, please accept this feedback in the context of my not knowing more about you and not having the opportunity to examine you. I would suggest you take the following information as potential topics of discussion.
    Many reasons would lead any RE to agree with you having the diagnosis of PCOS (Polycystic Ovarian Syndrome). This is a disease that is not entirely understood, even today. However, we do know that it is somehow related to faulty insulin metabolism. You likely inherited a bad gene that makes your body unable to respond to insulin normally (I wonder if there is diabetes in  your family). Because of this deficiency, you end up having high levels of insulin, which can interfere with egg development. It can also cause a host of other problems, including weight gain, menstrual abnormalities, hairiness, acne and increased miscarriage risk. Your doctor wisely gave you metformin (Glucophage) to address the insulin issue. It is not surprising that you have lost 20+ pounds since starting it. Keep up the good work of taking your metformin, watching your carbohydrate intake and gradually increasing your exercise level.
    I have seen patients start ovulating on their own after losing weight on metformin. I truly hope it happens for you. In the event that you do not ovulate soon, then it's time to consider ovulation medications such as Clomid, Letrozole or best of all, injectable gonadotropins. Unfortunately, when you failed to get pregnant on these medications in the past, we do not know if you grew follicles and ovulated well, but just didn't get pregnant OR if you failed to ovulate even with the medications. If it's the first case, meaning you ovulated consistently and still didn't get pregnant, then I would suggest an evaluation of your tubes. This is best done with a non-surgical x-ray procedure called an HSG. The surgery that your doctor proposes is a reasonable option, but not the best one, in my opinion. Now, if it's the second case, that back when you were on the Clomid and Letrozole, you didn't even ovulate, then the obvious best plan at this point is to work harder at getting you to ovulate.
    So how do we do that? In your situation, it would be reasonable to try injectable gonadotropins with close monitoring to see that you actually are ovulating! If there are no problems with your tubes, you should get pregnant with a high percentage chance once you are ovulating. As for your nausea, obviously you know to do a pregnancy test first. The relationship between diabetes and PCOS goes something like this. A normal person is one whose body uses a little bit of insulin to successfully bring the blood sugar levels down easily. An insulin-resistant PCOS person is one whose body frantically uses a lot of insulin to successfully bring the blood sugar down. A Type II diabetic is someone who despite frantically producing a lot of insulin still can not bring the blood sugar levels down. So while it is possible that you are at risk of becoming diabetic or that you are already diabetic, most likely you are not yet. A combination of diet, exercise and metformin can hopefully delay your development of diabetes until you are 100 years old! Your vivid description of your sugar-craving is classic for PCOS patients. However, you are already on the metformin, so I would have expected improvement in that area. Perhaps a combination of a higher dose (ask your doctor), more will power and REGULAR fun exercise can get those craving under better control so that you can keep losing even more weight.

KEY POINTS TO CONSIDER:
- Ask your doctors if they can focus on helping you ovulate in a proven documented fashion first before resorting to the laparoscopic surgery. If you ovulate, but still don't get pregnant, then go ahead and evaluate your tubes and uterus, either with an HSG (preferred) or with the surgery.
- Continue your great progress regarding weight loss and getting healthier.
- Based on the limited information you have given me, I would be very optimistic about your chances of having a baby within the next few months, provided you make the right decisions regarding treatment.
- Once you get pregnant, keep on the metformin as many believe it can help combat the higher risk of miscarriage that PCOS patients have when they don't take metformin.
GOOD LUCK!

Comments

[Tina Snarr]

Thankyou so much for going into such depth in describing what I am experiencing especially the insulin resistance - my doctors have pretty much been telling what is wrong but not describing them so I have been confused as to what exactly is happening. When people ask me "what is insulin resistance" or "what is pcos" - I can only give them minimul answers because until now I could not even explain it. I did get my blood test results back on wheteher or not I had been ovulating and the doc said that with such low numbers he doubts I even ovulated. He said he would have expected to see much higher levels especially because at the time the blood was taken, I was actually due the day before to start my period, (on the 6th) - I ended up starting on the 9th. After discussing the nausia and vomiting with him and it was determined that this happens for 3-4 days on what seems to be a monthly basis- his answer to this was that because it is happening at a timed rate, monthly, it is most likely due to my hormones which are ever changing due to the metformin and that it will prob keep happening until my hormones get under control. Does this seem like an acurate diagnosis to you? Based on my experience a second opinion never hurts. Also he did a blood sugar test and said the numbers were completely nurmal - I think he said a 96. This was done first thing in the morn before I ate anything and had only drank a small cup of water. Basically, I guess the info I got was that the symptoms I have been feeling are directly related to the pcos. As far as the chronic headaches - he finally actually diagnosed me with migraines and offered me imatrex - I told him my mother was given samples of that drug for her headaches and after me trying it only once I never wanted to try it again - it made me feel very odd and out of control - I would feel very thirsty with dry mouth but couldnt get myself to drink anything - I would feel the need to lye down and be still but couldnt stop myself from moving around and be still - I would feel very tired but was wide awake - amongst many other conflicting symptoms. It was very odd and my mother also after sampling the drug refused to take it anymore. I dont know why he did not prescribe me anything for the headaches and instead told me that if they continued to come back and see him - even though I have told him of the horrible headaches every visit and told him I constantly have some form of headache. This morning I woke up with one of the worse I have had in the past month or so. I could barely open my eyes and the pain stretched my eyes to my forehead and the sides by my ears. The worse pain being behind my eyes. It could most likely be described as a "freeze headache" that would not stop. Luckilly I took one of my hydrocone which relieved the burning effect - then a second hydro an hour later stopped the actual pain - I can still tell the ache is there but the pain has been relieved. This is the last prescript of hydrocodone the doc said he would prescribe because my cramping has greatly eased and he does not want me to become dependant on the med. This worries me because I am afraid no other med will be able to relieve the headaches like the hydro does. What do you think would be a good pain reliever that would replace the hydro for the headaches? The doc also said that because I have constant headaches it would not be good to use hydrocone for this because I would constantly be taking them - agreed, but discouraged for the fear nothing else would work as well. Anyway, I just wanted to touch base and let you know the newest results and information I was given. Thank you again so much for taking the time to help me in figuring out this mess. Tina S.

[IVF-MD]

Tina, your situation has become quite complex and beyond what I can address in a few paragraphs. There are a few points I might not agree with in your description, but I certainly don't know you as well as your own doctor does. In the future, I hope to post more information about PCOS. Good luck!