Revisiting PCOS

[ChiefExec]

Hello there, strangers. :) I have been MIA from the monthly TTC threads, mainly because I am so overwhelmingly despondent over my situation that reading about it just started to add to the stress and frustration. I still think I may refrain from posting on that thread for awhile, but I wanted to start one of my own. Even though I know we have hashed out PCOS several times on this board, i wanted to share my experience and ask for insight from anyone else who has maybe been in my shoes.

I have recently been diagnosed with PCOS, but find that I am getting almost no support or information from my doctors. SInce I last visited you all, I have been seeing a fertility specialist and not just my regular OB/GYN. He has basiclaly just told us, as of this morning, that we most likely have no option for cpnception but IVF. As you can imagine, this news was rather devastating.

Now, my PCOS questions. I am thin, have no noticeable hair growth, and don't have any insulin problems that I am aware of. Yet I have PCOS, simply because of all the cysts on my ovaries. How does one go about treating this form of PCOS? So far, my docs haven't really recommended ANY kind of treatment for it. Basically, they have just put me on clomid to try to get me to ovulate, and it hasn't worked. :(

Basically, what seems to be happening is that I develop a follicle each cycle, but then no egg gets released. Anyone else ever dealt with this? Anyone know of any treatment options? Should I trust my doc that IVF is basically our only option (besides injectables, which we may decide to skip)?

Sorry if this is incoherent and rambling. As you can imagine, I am still pretty devastated by today's news about the IVF.

Oh, FYI, I am in my mid-to-late 20's, have been off the pill since January. Thanks.

[MinEaston]

((((ChiefExec))))

I'm sorry you're having a rough time, we have missed you but can understand your wanting to lurk for a while.

I did a quick search for "pcos" and scanned the threads, which had a lot of information. One thing I did read over and over was the importance of getting a provider that understands it. You might want to start there, as there are BBers who offered support and advice via PM.

It is possible to conceive with PCOS, I read, and there's living proof in one of the BBers who just had a baby this past June.

Best of luck, and when you feel you need to, rant away here - we're here for your support!

[jphilg]

((CE)) I don't have any information, but I just wanted to send you a little hug.

Jen

[RebeccaT]

CE, I am so sorry you are going through this. I have to admit that reading your post gave my stomach a little lurch, because, if I remember correctly your journey began with you not getting AF for many months after going off BCP. I went off BCP in June, and am still waiting for AF myself. :(

I wish I had advice for you. But I do offer you my support. I am glad to see you around. (((CE)))

[ChiefExec]

Thanks, guys. :)

Sorry I have been too busy a weenie to post and follow everyone's progress. :( That is selfish of me, and I truly do apologize. I am jsut so ridiculously sensitive to everything right now.

Yes, Rebecca, it all started when I went off the pill in January and did not have a period for several months. Now at least I am getting a period, but not ovulating apparently.

As a side note, has anyone ever felt pressure from their doc to go the IVF route? Almost as though he were trying to "sell" you on his product?

[ktg0930]

Hi ChiefExec. I'm sorry that you are in this situation and feeling stressed. I have mild PCOS, but the more traditional type. I agree that you should look for a doctor who specializes in PCOS. I'm just wondering, did they base your diagnosis simply on the presence of cysts? From what I've read, the presence of cysts alone doesn't mean you have PCOS. It's the constellation of symptoms that you mentioned. Did your doctor do hormone tests at Day 2-3 of your cycle and a glucose tolerance test? There are a couple of websites that have information...I'll look for the addresses and get back to you.

Our only option is IVF as well, but that's due to my husband's low sperm quality and count, not due to my PCOS.

Hugs to you and I hope that you can get more information from a different doctor. I'll get back to you with the PCOS websites.

[ktg0930]

Chief Exec, we were posting at the same time. I think that's a bad sign that your doctor is trying to sell you on IVF. I saw a new doctor last week and told him that we didn't want to do IVF and he was great. It's a lot of work to do IVF (from what I've read) and just isn't the right choice for everyone.

[gertdog]

((((Chief))))

Glad to see you here, but I understand why you've been off the TTC thread for awhile.

When I had my fertility workup, the results came back pretty much normal. I said to the dr. "So I don't have PCOS, then?" (I had suspected I did). He said "There's no evidence that you do, but that doesn't mean you absolutely don't have it either." :confused: He went on to explain that PCOS there are few critical factors for ruling out or diagnosing PCOS. It's really just a collection of symptoms, and doctors focus on treating the symptoms that are problematic for the patient.

(I do NOT have any evidence of ovarian cysts- I have the long irregular cycles, I am heavy, and I appear not to ovulate every cycle. So my symptoms are very different from yours.).

I would find a specialist who is experienced with and comfortable treating PCOS, or who is experienced at treating your specific symptoms (namely, the cysts and the lack of release of an egg). At the least, you might consider making an appointment just to get a second opinion on the diagnosis and treatment plan.

There are other drugs besides Clomid that can induce ovulation; perhaps you can ask your doctor about alternatives that might be appropriate for your situation before moving straight to IVF? If you are not ovulating at all, it makes sense that IVF would be a viable treatment approach in that an egg is directly retrieved from your ovary- but I don't know if that's the only option.

Again, I'm sorry you're going through this. Please do turn here for support and an outlet for venting if you need it.

[mbrogier]

ChiefExec, I'm sorry you're having to go through this. I am not ready to start having a family yet, but I have had problems with my ovaries. I had multiple cysts on one ovary, so I was put on birth control in high school. That helped for a while, but my abdomen always was tender where my ovary was. I was put on Depo Provera when I got married, to try to treat them better. I still got cysts that would come anyway. Sometimes, the ultrasound would show a tiny cyst although I was in a lot of pain. I lived with it for a while. I had a stroke last fall when it was determined that I had a blood clotting disorder that I was unaware of. (I'm adopted, and it was genetic) Hormones made the clotting worse, so I had to stop. My periods were horrible. I got a cyst in late April that would not go away. It did not show up on an ultrasound, but the ovary didn't move, either. The surgeon suspected scar tissue. I had gone to the ER because of the pain, so the Cat Scan they did showed that my other ovary was ovulating. Having this knowledge solidified my decision to get that ovary out. When the doctor went in, he did a pain mapping. He pressed around my abdomen...nothing hurt. He touched the ovary, and I told him it hurt and to get it out of there. (I remember none of this). The ovary was all nasty and gray. The pathology report on it said that it had a current cyst in the ovary between the ovary and the fallopian tube. It was hard for the doctor to feel it because of where it was. All those years, I had cysts INSIDE the ovary. My periods are now normal and I feel great. I'll deal with any fertility problems as they occur. I'm not thinking that ovary was very productive, anyway. I have a perinatologist because of my stroke. He gave me good advice about the meds I was taking, and what to do to prepare for a family. He also helps couples that are trying to conceive. You might be able to consult with one, and he could give you referrals to specialists for PCOS and infertility. The doctors that my doctors have referred for me have been wonderful. There are doctors and there are great doctors. I wish you the best, and I hope you can find some great doctors.

[DocAgocs]

Here's a "reprint" of an herbal protocol I've posted before. The specific product and dosage information pertains to MediHerb's products only because herbs are not standardized like some things, so one company's "licorice" is not the same as another's. You can't buy this stuff from me because I'm sharing information, not trying to sell things, but if you contact me I can probably put you in touch with a doctor who can help you.

_____________
othing but good things using an herbal protocol that was developed by two Australian herbalists: Kerry Bone (arguably the top herbalist in the world, author of half a dozen herbal textbooks used in schools around the world and lead researcher at MediHerb) and Angela Hywood, an Australian naturopath who specializes in female health and pediatrics. The goal of herbal "treatment" for PCOS is two-fold: establish a regular menstrual cycle and help a couple conceive. Consult your regular doctor before you use these in case you're on medications, etc. Also, these protocols are designed for MediHerb products specifically, which are extremely high quality. I personally don't use anything else, so if you try to go on your own with whatever you can find at the health food store then best of luck but I wouldn't do it!

For more info on these herbs and the protocol below reference:
Principles and Practice of Phytotherapy by Simon Mills and Kerry Bone
A Clinical Guide to Blending Liquid Herbs by Kerry Bone

1) Are you overweight, diabetic or pre-diabetic? Are you a carb-junkie? An underlying problem in PCOS is hyperinsulinemia (too much insulin in the blood) secondary to insulin resistance from being a carbojunkie. Insulin will dirupt normal sex hormone balance in women, so it can be the main thing in many cases. If you fall into this category, you need to reduce refined and simple carbs (sugars, refined pasta, bread, soda, etc etc) as much as you can in your diet and choose only moderate amounts of whole grain products. Also you can support proper sugar handling with 2-3 tablets of Gymnema per day and 2 tablets of Silymarin (Milk Thistle) per day.

2) To jumpstart a normal menstrual cycle look at what the Japanese have been doing for a long time. For 6-12 weeks they will use 4 mL (under a teaspoon) of Licorice High Grade and 8 mL of White Peony per day. Generally, within 12 weeks a normal menstrual cycle will be established. If so, then...

3)... To support normal menstruation and help with conception, stop the licorice and white peony and start using 2 tablets of Chaste Tree in the morning and 3-4 tablets of Tribulus to maintain normal progesterone/estrogen balance. Controlling hyperinsulinemia is super-important in this stage, too.

According to Kerry, this protocol has helped a lot of Australian PCOS women have successful pregnancies.The more androgenation the patient exhibits the harder the case, so be aware of that.

Of course, you need to do some homework or talk to a doctor who knows their way around herbs to make sure this is safe and appropriate for you to do.
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[funniegrrl]

PCOS is still an under-diagnosed, under-treated syndrome, even though it's more commonly recognized than it used to be. (It took me more than 10 years to find doctors who would listen to me and treat my symptoms seriously rather than just chalking it up to me being overweight.) Run, do not walk, to the web site www.pcosupport.org. There you will find all the info you need, including ways to search for a doctor who is willing to deal with the PCOS rather than just throw up their hands.

[Fig]

Wow, ChiefExec, I could have written your post. I also was diagnosed with non-traditional PCOS - I am thin, no apparent insulin resistance, no hirsutism, but polycystic ovaries. I was also anovulatory for three years prior to seeing my current dr. I had been on serious doses of fertility drugs, with still no results. Finally in December, my new RE did ovarian drilling, along with laparoscopy, hysteroscopy, and D&C. The ovarian drilling really seemed to do the trick. I was put on BCP for one cycle after the surgery to induce a period, then was put on high doses of fertility drugs (Follistim and Repronex). I ovulated that cycle, and fortunately, also became pregnant that cycle (not by IVF, just insemination). My RE feels that the reason the fertility drugs did not work before surgery is that my baseline e2 levels were slightly elevated due to all the cysts. Once they did the drilling, that level was lowered and the drugs kicked in. I will be curious to see if I start having periods after the baby is born, but I am just thrilled that they figured out what to do and that I am pregnant. Please let me know if you would like any more info. Best of luck to you!

Sarah

[ChiefExec]

Sarah! I love you! Finally someone has given me some hope (um, sorry if it creeps you out thaat someone on an anonymous internet BB loves you :)).

My OB/GYN suggested the drilling. My new doc (the fertility specialist) has been adamantly opposed to it, saying it will result in scar tissue and will kill "good" eggs. Did you ever hear of these as concerns? May I ask if you were producing a follicle but the follicle wasn't rupturing? That seems to be the case with me. Thanks SO much for giving me hope!!!! I wish there were a little dancin' man emoticon. :)

[mst]

Just wanted to send you some good thoughts. Sorry you are going through all this.

[rinsav]

I just wanted to say hi too. I'm so sorry you're having such a tough time. I'm really happy to see Sarah's story...it should definitely give you lots of hope!!! Take care of yourself!

[ChiefExec]

Thanks!! Love your new avatar, rinsav. :)

[rinsav]

Thanks! Yup, they're my babies for now!:)

[Fig]

ChiefExec,

I haven't heard of the issues with damaging good eggs with ovarian drilling, but then again it was only my last RE that suggested it, and she obviously was in favor of it. She did wrap my ovaries in a special material (I will have to look up the name) to help prevent scar tissue following the drilling. I did some research online about the surgery, and it seems there is a pretty good success rate, although it is not always clearly understood why it does work. Although I had some reservations, my thought was, nothing has worked so far, so what do I have to lose? I couldn't even consider IVF because I was not developing follicles at all. So, in that area, my story is different from yours, but strangely enough my anovulation started after the birth of my dd. I always had irregular cycles, and actually did Clomid and insemination to conceive dd, but I was at least ovulating. My problem at that time was recurrent miscarriages (a whole other story!). Anyway, my RE thinks the PCOS could have been latent, and not manifesting in the anovulation until my estrogen levels dropped after the birth and during breastfeeding. Then the cycles were never able to kick back in.

If you are developing a follicle, have they done the HCG trigger shots to try to stimulate rupture? That's what they did with me when I finally did develop follicles, then they monitored progesterone levels to make sure I did actually ovulate.

I'm so glad my story has given you hope - before I went to my current RE I was told that I had the ovaries of a 45 year old (I am 31) and I should consider donor eggs or surrogacy. So, again, I figured I had nothing to lose and I'm so glad I gave the surgery a shot.

Hope this isn't TMI for anyone reading!

Sarah

[ChiefExec]

Once again, you've given me so much hope. After doing some research, I have decided to see a new doctor who does perform the ovarian drilling (methinks the reason my current doc did not recommend it is b/c well, he doesn't do it, and therefore that would mean no money in his pocket if that were the route I chose. How sad is that. :rolleyes: )

This cycle, we plan to do the trigger shot for the first time. Unfortunately, it looks like the time for that may coincide with a Labor Day girls' beach trip. :( Oh, well--you gotta prioritize, right? :D I don't think it would make my doc too happy if I told him I couldn't come in for the trigger shot because I wa stoo busy mixing margaritas by the pool. :cool:

[buffygirl]

CE, Here is my take. I haven't read all of the posts, but the one where you asked about "selling" strikes a bit of a chord with me.

I also have PCOS. Undoubtedly that makes things harder when trying to conceive. I also go to a fertility specialist. I think that a fertility specialist *is* in the business of "selling" their procedures. I know that I've felt pressure to go to the next step. I also understand that the doctor does not want me to come back and sue him when I'm 45 with no baby. (I wouldn't, but I'm sure there are some who would try.) So I think the fertility specialists have to walk a fine line.

I think it is really odd that they've offered you no treatment at all for the PCOS. In my doctor's office, he will at least prescribe a low dose of Glucophage for PCOS patients, even if they are normal weight and don't exhibit the other "classic" symptoms. The Glucophage can help regulate cycles which in turn can regulate or cause ovulation.

You need to go to a doctor who is sympathetic to the PCOS patients. I might think about changing docs if I were you.

Kim

[Fig]

I totally agree with Buffygirl's post, and I have to add, that my original RE did try glucophage for 6 months along with a low carb diet and it did not do anything for me. But, it does work for a lot of women so that is worth a try before surgery if you haven't tried it yet!

Sarah