Can I be an AW? Qs about PCOS, Clomid, etc...

[jags8]

I'm going to C&P what I wrote in the WTO thread today, and then add more. A little background: We are currently in our 12th month TTC and weren't going to do any fertility testing until this fall if it came to it. But I've been spotting and passing small clots throughout my entire luteal phases. It's gross, annoying, sex-drive killer, ruined countless underwear...I'm sick of it.

{CP} So I had my appointment with my OB yesterday to find out why I bleed so much throughout my luteal phase and go over my diagnostic ultrasound [that I had last week]. Turns out I have cysts. So they are continuously growing and bursting, creating extra fluid in my uterus. Because of my cycles, she also believes I have too much estrogen and not enough progesterone (which is likely what also caused my miscarriage). So basically, my OB believes I have PCOS as well as luteal phase defect due to hormone imbalance. After talking with her we came up with a plan, and I went to the lab to have SEVEN vials of blood drawn for different tests. I will find out more within the next week or so when the test results come back.

{new} My OB said that even though I'm ovulating, the cysts are blocking the egg from getting through. My OB's plan is to get the blood tests results back, and most likely start Clomid next cycle (max of 3 cycles), as well as progesterone supplements in my luteal phase. I've been doing so much research and googling the last 24 hours, and now I only have more questions. If you can answer even just one, I would be so grateful!

ETA- If Clomid is, in fact, what is best, I won't start it until this fall.

1) Why Clomid instead of Metformin (what's the difference, etc.)?
2) Why Clomid if I'm already ovulating?
3) I've read that Clomid can cause cysts. So how would it help if I already have cysts?
4) What EXACTLY does it mean to be properly monitored on Clomid?
5) I'm not overweight (4'11'', 115 lbs), I don't have excess facial or body hair, and I haven't gone longer than 39 days between periods (average of 33). Aren't those major parts of PCOS?
6) DH has gotten me pregnant before (m/c)...should he still do an SA before I would try Clomid?
7) Any other tests I should have done before trying Clomid?

[Daikoku]

These are awesome question, but I can only answer one.

I think it's worth it to have H do a SA. MH also got me KU and it also resulted in mc. After tons of invasive tests on my end, with a simple SA we found out the issues are on his end. It's at least worth ruling out.

[wanderingheart]

I'll answer what I know - hopefully others will jump in and answer what I'm leaving blank

1) Why Clomid instead of Metformin (what's the difference, etc.)?
Clomid is a fertility drug to help you ovulate. Metformin is a diabetic medication that was found to also be helpful for women with PCOS. Metformin can help women get more cycles or ovulate, but Clomid is the tried and true drug for ovulating. Metformin also is useful for women with PCOS because they are at increased risk for diabetes.

From what I understand, some OBs will prescribe Metformin to see if your cycles regulate since the side effects are minimal compared to Clomid.

4) What EXACTLY does it mean to be properly monitored on Clomid?
All the testing before hand (HSG, CD3 blood work, SA, vaginal ultrasound, etc.) would be a starting point. How it works with my RE is I would call on CD1, take Clomid or Femara from CD 5-9, then come in for a vaginal ultrasound to see how I'm responding, check the lining, etc. If it's good to go, then I would trigger with Ovidrel. My RE also wants to do ultrasounds at the beginning of every other cycle in addition, but I'm not sure if that's required.

5) I'm not overweight (4'11'', 115 lbs), I don't have excess facial or body hair, and I haven't gone longer than 39 days between periods (average of 33). Aren't those major parts of PCOS?
Yes and no. There are women with PCOS who are not overweight. PCOS is a 2 out of 3 diagnosis. For instance, I don't have cysts and my ultrasound was normal. But I had irregular cycles and elevated blood work. Have you had any blood work done to look at your testosterone?

6) DH has gotten me pregnant before (m/c)...should he still do an SA before I would try Clomid?
Yes.

7) Any other tests I should have done before trying Clomid?
I pretty much addressed those earlier - but the SA, HSG, CD 3 blood work. It sounds like you have already had the vaginal ultrasound, so you should be good there.

ETA: words are hard, yo.

[jags8]

May 27, 2015 21:48:13 GMT -5 wanderingheart said:

5) I'm not overweight (4'11'', 115 lbs), I don't have excess facial or body hair, and I haven't gone longer than 39 days between periods (average of 33). Aren't those major parts of PCOS?
Yes and no. There are women with PCOS who are not overweight. PCOS is a 2 out of 3 diagnosis. For instance, I don't have cysts and my ultrasound was normal. But I had irregular cycles and elevated blood work. Have you had any blood work done to look at your testosterone?

They took seven vials of blood for seven different tests, so maybe/probably? I won't get the results til end of the week/early next week.

[wanderingheart]

May 27, 2015 21:56:07 GMT -5 jags8 said:

May 27, 2015 21:48:13 GMT -5 wanderingheart said:

5) I'm not overweight (4'11'', 115 lbs), I don't have excess facial or body hair, and I haven't gone longer than 39 days between periods (average of 33). Aren't those major parts of PCOS?
Yes and no. There are women with PCOS who are not overweight. PCOS is a 2 out of 3 diagnosis. For instance, I don't have cysts and my ultrasound was normal. But I had irregular cycles and elevated blood work. Have you had any blood work done to look at your testosterone?

They took seven vials of blood for seven different tests, so maybe/probably? I won't get the results til end of the week/early next week.

Ah, yes I forgot you mentioned that, ha. My bad. That will tell a lot when you get your results back. 3T's newbie blog has the blood work all spelled out, with what is considered "normal" and what is symptomatic of PCOS. That helped me a lot when I got my results back, because it helped me see exactly where I fell on the range, rather than just my OB saying "elevated levels". 

[madamewaffles]

wanderingheart and Daikoku answered your Qs awesomely, but what CD are you on, if they took blood today? Some of your bloodwork needs to be done on CD 3 and 7 DPO to be able to properly assess and diagnose.

2) Why Clomid if I'm already ovulating? It may help you produce more follicles (aka more targets), and with monitoring, helps control the cycle more than a natural cycle.

3) I've read that Clomid can cause cysts. So how would it help if I already have cysts? I think my drug fact sheet when I picked up my Clomid RX at the pharmacy said that 10% of users may develop cysts. It may be trial the first cycle you take Clomid - as a PCOS-er I never got a cyst and I took it for 5 cycles (/anecdote). If monitored properly they should do a CD 3 ultrasound to make sure you don't have cysts before starting the prescription.

[ghostmonkey]

May 27, 2015 21:39:48 GMT -5 jags8 said:

I'm going to C&P what I wrote in the WTO thread today, and then add more. A little background: We are currently in our 12th month TTC and weren't going to do any fertility testing until this fall if it came to it. But I've been spotting and passing small clots throughout my entire luteal phases. It's gross, annoying, sex-drive killer, ruined countless underwear...I'm sick of it.

{CP} So I had my appointment with my OB yesterday to find out why I bleed so much throughout my luteal phase and go over my diagnostic ultrasound [that I had last week]. Turns out I have cysts. So they are continuously growing and bursting, creating extra fluid in my uterus. Because of my cycles, she also believes I have too much estrogen and not enough progesterone (which is likely what also caused my miscarriage). The progesterone being low might be the cause, but she has no way of knowing that. Low E can be easily diagnosed properly, not just guessed. So basically, my OB believes I have PCOS This requires blood work. as well as luteal phase defect due to hormone imbalance This requires an endometrial biopsy. After talking with her we came up with a plan, and I went to the lab to have SEVEN vials of blood drawn for different tests. I will find out more within the next week or so when the test results come back.

{new} My OB said that even though I'm ovulating, the cysts are blocking the egg from getting through. My OB's plan is to get the blood tests results back, and most likely start Clomid next cycle (max of 3 cycles)Hold the mother fucking fuck. You have CYSTS and you OB wants to stimulate your ovaries? HELL FUCKING NO. Cysts mean no stims until they are gone, as well as progesterone supplements in my luteal phase. I've been doing so much research and googling the last 24 hours, and now I only have more questions. If you can answer even just one, I would be so grateful!

ETA- If Clomid is, in fact, what is best, I won't start it until this fall.


3) I've read that Clomid can cause cysts. So how would it help if I already have cysts? It doesn't. It can make them worse and cause them to grow exponentially. Stimming with cysts is fucking idiotic.
5) I'm not overweight (4'11'', 115 lbs), I don't have excess facial or body hair, and I haven't gone longer than 39 days between periods (average of 33). Aren't those major parts of PCOS? PCOS is a 2/3 diagnosis. You need two of the following for a diagnosis. 1. Irregular periods 2. Hormonal Imbalance 3. Microcysts/ high antral follicle count
6) DH has gotten me pregnant before (m/c)...should he still do an SA before I would try Clomid?Yes. If he has an issue it could be contributing and may not be a factor with you at all. 
7) Any other tests I should have done before trying Clomid? You need to get the hell away from your OB. They don't have training in this.

I don't doubt that it sounds like you have something going on that warrants looking into (even if you weren't on month 12), but your OB making plans and diagnosis without waiting for the tests is scary and dangerous because they tend to stick to their original line of thinking even if the tests suggest they are wrong. 

[jags8]

madamewaffles I had blood drawn yesterday and it was either CD2 (most likely) or CD3.

[pismoduo]

May 27, 2015 22:56:10 GMT -5 ghostmonkey said:

May 27, 2015 21:39:48 GMT -5 jags8 said:

I'm going to C&P what I wrote in the WTO thread today, and then add more. A little background: We are currently in our 12th month TTC and weren't going to do any fertility testing until this fall if it came to it. But I've been spotting and passing small clots throughout my entire luteal phases. It's gross, annoying, sex-drive killer, ruined countless underwear...I'm sick of it.

{CP} So I had my appointment with my OB yesterday to find out why I bleed so much throughout my luteal phase and go over my diagnostic ultrasound [that I had last week]. Turns out I have cysts. So they are continuously growing and bursting, creating extra fluid in my uterus. Because of my cycles, she also believes I have too much estrogen and not enough progesterone (which is likely what also caused my miscarriage). The progesterone being low might be the cause, but she has no way of knowing that. Low E can be easily diagnosed properly, not just guessed. So basically, my OB believes I have PCOS This requires blood work. as well as luteal phase defect due to hormone imbalance This requires an endometrial biopsy. After talking with her we came up with a plan, and I went to the lab to have SEVEN vials of blood drawn for different tests. I will find out more within the next week or so when the test results come back.

{new} My OB said that even though I'm ovulating, the cysts are blocking the egg from getting through. My OB's plan is to get the blood tests results back, and most likely start Clomid next cycle (max of 3 cycles)Hold the mother fucking fuck. You have CYSTS and you OB wants to stimulate your ovaries? HELL FUCKING NO. Cysts mean no stims until they are gone, as well as progesterone supplements in my luteal phase. I've been doing so much research and googling the last 24 hours, and now I only have more questions. If you can answer even just one, I would be so grateful!

ETA- If Clomid is, in fact, what is best, I won't start it until this fall.


3) I've read that Clomid can cause cysts. So how would it help if I already have cysts? It doesn't. It can make them worse and cause them to grow exponentially. Stimming with cysts is fucking idiotic.
5) I'm not overweight (4'11'', 115 lbs), I don't have excess facial or body hair, and I haven't gone longer than 39 days between periods (average of 33). Aren't those major parts of PCOS? PCOS is a 2/3 diagnosis. You need two of the following for a diagnosis. 1. Irregular periods 2. Hormonal Imbalance 3. Microcysts/ high antral follicle count
6) DH has gotten me pregnant before (m/c)...should he still do an SA before I would try Clomid?Yes. If he has an issue it could be contributing and may not be a factor with you at all. 
7) Any other tests I should have done before trying Clomid? You need to get the hell away from your OB. They don't have training in this.

I don't doubt that it sounds like you have something going on that warrants looking into (even if you weren't on month 12), but your OB making plans and diagnosis without waiting for the tests is scary and dangerous because they tend to stick to their original line of thinking even if the tests suggest they are wrong. 

I was thinking the same thing about Clomid and cysts.

The other thing I'm not understanding is if the OB thinks your eggs are having trouble getting through because of the cysts, why would she stimulate? It seems like what really needs to be addressed is the cysts, then figure out if you're ovulating or not.

[jags8]

ghostmonkey that's what I really don't understand about Clomid. Everywhere I read about PCOS, it says it's treated with Clomid or Metformin. Yet some sites say Clomid causes cysts, so it just doesn't make sense!!

I'm definitely not eager to jump on the Clomid train. That's why I have so many questions and concerns. Not only do I not want to fuck up my reproductive system, but I also am terrified to have multiples.

Do any medicines get rid of cysts?

[jags8]

pismoduo I'm definitely ovulating. I have a year's worth of charts with clear shifts.

[ghostmonkey]

May 27, 2015 23:22:21 GMT -5 jags8 said:

ghostmonkey that's what I really don't understand about Clomid. Everywhere I read about PCOS, it says it's treated with Clomid or Metformin. Yet some sites say Clomid causes cysts, so it just doesn't make sense!!

I'm definitely not eager to jump on the Clomid train. That's why I have so many questions and concerns. Not only do I not want to fuck up my reproductive system, but I also am terrified to have multiples.

Do any medicines get rid of cysts?

If they are severe enough birth control is the usual method. 

If they get large enough, surgery may be required. 

[pismoduo]

May 27, 2015 23:24:58 GMT -5 jags8 said:

pismoduo I'm definitely ovulating. I have a year's worth of charts with clear shifts.

I know nothing about this stuff except what I've read around here. It seems odd to jump to Clomid when you a)know you're ovulating and b)have cysts.

Then again, OBs looooove to go straight to Clomid for "treatment" of pretty much any issue.

[rivers and roads]

I'm still learning about all of this myself, but much of that "plan" even sent red flags to ME, especially the part that says you're ovulating, but they're not getting through, so clomid.
That's like complaining about bad traffic patterns and then just putting more cars on the highway as the solution.
Just no (to your OB- you're asking great questions).

The other ladies have dropped more knowledge already, so I'm just echoing their thoughts and also offering creepy hugs, because anytime this stuff gets thrown around in regards to yourself, it's stressful/scary/sad.

I say wait for your bloodwork and then take it somewhere with more experience.

[lifesaverz]

I agree with ghost monkey about the concerns. Also I would recommend seeing an RE if possible, instead of an OB. They are much better trained in this.

[twocents6708]

You have great advice here already. I agree that jumping to Clomid sounds a little off since you are having cysts rupture at this point, if I understand correctly. Seeing an RE is a much better idea for treatment planning!

[mustloveerica]

May 27, 2015 23:22:21 GMT -5 jags8 said:

ghostmonkey that's what I really don't understand about Clomid. Everywhere I read about PCOS, it says it's treated with Clomid or Metformin. Yet some sites say Clomid causes cysts, so it just doesn't make sense!!

I'm definitely not eager to jump on the Clomid train. That's why I have so many questions and concerns. Not only do I not want to fuck up my reproductive system, but I also am terrified to have multiples.

Do any medicines get rid of cysts?

I would also like to point out that the risk of multiples is still fairly low. My Re told me it was an 10% chance of multiples which is really not that much higher than if you were not on clomid. It's still a rare occurrence but they are obligated to warm you that it CAN happen.

[jags8]

May 27, 2015 23:27:53 GMT -5 ghostmonkey said:

May 27, 2015 23:22:21 GMT -5 jags8 said:

ghostmonkey that's what I really don't understand about Clomid. Everywhere I read about PCOS, it says it's treated with Clomid or Metformin. Yet some sites say Clomid causes cysts, so it just doesn't make sense!!

I'm definitely not eager to jump on the Clomid train. That's why I have so many questions and concerns. Not only do I not want to fuck up my reproductive system, but I also am terrified to have multiples.

Do any medicines get rid of cysts?

If they are severe enough birth control is the usual method. 

If they get large enough, surgery may be required. 

For what it's worth, I've never had any pain in that region, so I'm guessing they are small. Would it makes sense to go on BC over the summer to get rid of them, then if it's all clear, try Clomid in the fall?

[butlerfan]

Just saying that it sounds like good advice from everyone here. I was worried when I heard Comid as well based on what I here from everyone here. I would be questioning it as well.

Hugs.

[jags8]

May 28, 2015 6:28:24 GMT -5 mustloveerica said:

May 27, 2015 23:22:21 GMT -5 jags8 said:

ghostmonkey that's what I really don't understand about Clomid. Everywhere I read about PCOS, it says it's treated with Clomid or Metformin. Yet some sites say Clomid causes cysts, so it just doesn't make sense!!

I'm definitely not eager to jump on the Clomid train. That's why I have so many questions and concerns. Not only do I not want to fuck up my reproductive system, but I also am terrified to have multiples.

Do any medicines get rid of cysts?

I would also like to point out that the risk of multiples is still fairly low. My Re told me it was an 10% chance of multiples which is really not that much higher than if you were not on clomid. It's still a rare occurrence but they are obligated to warm you that it CAN happen.

I believe the occurrence of multiples naturally is 1-1.5%, and with Clomid is 10%. To me that is a huge jump. I am a very small person so carrying more than one baby sounds so uncomfortable, not to mention twice the work once they're out. A 1/10 chance of that is terrifying to me!!

[britterrss]

Hope I'm right, but having cysts ON your ovaries and having polycystic ovarian syndrome are 2 different things. It doesn't sound to me like you have PCOS for sure. I'd get a second opinion and definitely leave this OB.

[renbee]

May 28, 2015 7:27:31 GMT -5 britterrss said:

Hope I'm right, but having cysts ON your ovaries and having polycystic ovarian syndrome are 2 different things. It doesn't sound to me like you have PCOS for sure. I'd get a second opinion and definitely leave this OB.

This. Definitely find an RE. Your situation has surpassed the expertise of an OB.

[ghostmonkey]

May 28, 2015 6:53:33 GMT -5 jags8 said:

May 27, 2015 23:27:53 GMT -5 ghostmonkey said:

If they are severe enough birth control is the usual method. 

If they get large enough, surgery may be required. 

For what it's worth, I've never had any pain in that region, so I'm guessing they are small. Would it makes sense to go on BC over the summer to get rid of them, then if it's all clear, try Clomid in the fall?

Chances are good that they are small, and saying that there are a lot leads me to also lean towards you have the "string of pearls" going on and not major cysts.

If they aren't large and painful, the best course of action would be to wait it out and see what they do on their own unless you really want to go on BCPs. Many will resolve themselves in a cycle or two without any intervention, so doing Clomid in the fall if that is what your bloodwork indicates is a good option is not out of the picture.

[ghostmonkey]

May 28, 2015 6:57:50 GMT -5 jags8 said:

May 28, 2015 6:28:24 GMT -5 mustloveerica said:

I would also like to point out that the risk of multiples is still fairly low. My Re told me it was an 10% chance of multiples which is really not that much higher than if you were not on clomid. It's still a rare occurrence but they are obligated to warm you that it CAN happen.

I believe the occurrence of multiples naturally is 1-1.5%, and with Clomid is 10%. To me that is a huge jump. I am a very small person so carrying more than one baby sounds so uncomfortable, not to mention twice the work once they're out. A 1/10 chance of that is terrifying to me!!

2.9% to 7-10% for twins is a pretty damn big jump to me as well. And multiples are more likely with IUI/TI because of the lack of controls that there are with IVF.

Proper monitoring is extremely helpful in reducing some of that risk. Most Clomid multiples I know are either unmonitored or monitored that didn't listen when told to abstain.

[jags8]

Thank you everyone SO much for sharing your knowledge! This has been extremely informative. I'm going to wait on the blood results, and kind of go from there. But definitely not using Clomid while these cysts are there, and definitely with proper monitoring.

[bocaburger]

May 28, 2015 8:03:58 GMT -5 renbee said:

May 28, 2015 7:27:31 GMT -5 britterrss said:

Hope I'm right, but having cysts ON your ovaries and having polycystic ovarian syndrome are 2 different things. It doesn't sound to me like you have PCOS for sure. I'd get a second opinion and definitely leave this OB.

This. Definitely find an RE. Your situation has surpassed the expertise of an OB.

THIS. I saw 3 OBs before switching to an RE. They all wasted my time, including diagnosing me incorrectly with PCOS (which I don't actually have) and missing my thyroid condition. Two out of three offered me unmonitored Clomid. REs are much better trained for this and their offices are better equipped for the kind of monitoring you need.

[FDL]

I'm lurking, I hope you don't mind me jumping in.

I did want to reinforce the need for an SA. We had two prior chemical pregnancies with male factor infertility. Sperm quality is just as important when considering treatment options.

I feel like your doctor is assuming a lot without enough information to back it up. Including the cause of your miscarriage.

I really hope you get some real answers and proper treatment soon. Good luck!