Dx with a blood clotting disorder, can't take bcp's, how do I control the cysts?

PCOS Chick · 01-16-2006, 06:53 AM

I was dx with PCOS 8/04. Was taking Met. Had to stop for an upcoming surgery to check out my right ovary which is bi-lobal and to possibly remove my gall bladder. Blood work for the surgery showed I have Factor Five Lieden which is a blood clotting disorder. They have taken my off my BCP's. I was only taking them for the PCOS symtoms. My DH has had a vasectomy which we will have reversed once I am done with surgery and can afford it. I would just like some help with some other drugs or remedies to help me from forming more cysts. I also was enjoying how the BCP's kept me from having such dramatic mood swings ( so was my DH) I was aslo under the impression that they were helping me with the cysts. What do I take now? Hormones? I am awaiting this surgery on the 25th to get back to the Met and what ever else I can take to help with the mood swings and more importantly the ovarian cysts since one day hopefully soon we to start ttc. Thanks for any info. God Bless all of you.

StarMaiden · 01-16-2006, 09:23 AM

Quote:

Originally Posted by PCOS Chick

I was dx with PCOS 8/04. Was taking Met. Had to stop for an upcoming surgery to check out my right ovary which is bi-lobal and to possibly remove my gall bladder. Blood work for the surgery showed I have Factor Five Lieden which is a blood clotting disorder. They have taken my off my BCP's. I was only taking them for the PCOS symtoms. My DH has had a vasectomy which we will have reversed once I am done with surgery and can afford it. I would just like some help with some other drugs or remedies to help me from forming more cysts. I also was enjoying how the BCP's kept me from having such dramatic mood swings ( so was my DH) I was aslo under the impression that they were helping me with the cysts. What do I take now? Hormones? I am awaiting this surgery on the 25th to get back to the Met and what ever else I can take to help with the mood swings and more importantly the ovarian cysts since one day hopefully soon we to start ttc. Thanks for any info. God Bless all of you.

Birth control pill, while they help control the symptoms, don't address the root cause of PCOS. Your best bet is to use metformin, diet and exercise, to get your hormonal levels under control. You do that sucessfully and you will probably have good luck conceiving when you're ready to.

amayzd · 01-16-2006, 04:42 PM

Hi PCOS chick! I understand what you are going thru. I too have a clotting disorder but from a blood cancer. I'm not ttc but wanted to control my pcos.
My cancer hematologist said that I cannot take any type of hormone including bcp,due to the clotting factor. My only option was met and it has worked wonderfully. However, there is also actos or avanida or you can try natural alternative cure. Many women ttc have had great success with met, look at the ttc board. My only other question would be will this disorder cause problems during pregnancy/birth? You might want to find a hematologist (blood dr.) to discuss this with because I've found endo's and gyno's and pc's do not have those answers. Goodluck!

SABTeacher · 01-16-2006, 06:35 PM

I am also positive for Factor V Leiden (FVL). I just got the diagnosis after 2 miscarriages. Your doctor will need to work in conjunction with a hematologist on this one. If you haven't seen a hemo yet, you should. They may decide that you need to be on some sort of hormones to help your symptoms, but if so, you will need to be on blood thinners concurrently to avoid clots. They may also decide that you don't need hormones or BCP's, but may give you other meds (like met) or adjust your diet or make other lifestyle changes to help your symptoms.

If you plan to TTC now or later, make sure your doctors are all aware and that they start you on an aspirin/blood thinner regimen either before you are pregnant or right when you find out. The most common plan for people with FVL is baby aspirin plus 40 mg of lovenox (low molecular weight heparin) injected daily.

Good luck,
Shari

PCOS Chick · 01-16-2006, 09:06 PM

SABteacher- thank you so much for the info. I just got off the phone with my OBGYN. We have been discussing whether or not to put me on a blood thinner after surgery next week. I can't believe the different opinions all my Dr.'s are giving me. One says no Bcp's and that there is nothing else to help me with the symptoms of the PCOS. I am normally on met. but had to stop till after surgery. I am sorry to hear of your misscarriages. Talk about having everything working against us. Having FVL and PCOS. My husband and I are trying to decide whether or not to have his vasectomy reversed because of all the factors I have working against me. We want so desperately to have a child together but are worried we may be asking for more headaches and saddness along with lots of expenses. But how can we not try?
Are you still ttc? If so, you are in my prayers, actually you are in them either way. Keep me informed and I will do the same. Thank you again for the info.

SABTeacher · 01-17-2006, 02:34 AM

PCOS chick--Definitely, it's great to meet someone else with the same problem. Did they tell you if you were heterozygous or homozygous? I am heterozygous meaning that I only have one copy of the mutated gene. I think it's from my father since he did have a clot in his 40's. I'm grateful that I'm hetero, so at least my chances of clotting are less.

I know what you mean about getting different opinions from different doctors. It's so frustrating. We are currently still on a TTC break. We had the last m/c last April. It took from June through October to complete all the recurrent miscarriage testing and find out what my problem was (FVL was all they found, so they think that my body produced small clots in the uterus that led to miscarriage, but they don't know for sure). We were going to get to trying right away after the testing was done, but I decided to take a little break to pull myself together. We had many months of heartache with TTC, being pregnant, then miscarrying, and then going through invasive tests. Now, we're ready to get going again. I am meeting with a perinatologist next week (a high risk OB) to discuss FVL and TTC. I'm hoping he'll agree with my hematologist's idea which is to start me on Lovenox as soon as I want to start trying and keep me on it until 6 weeks after I have the baby. The good thing about this is that I'll now have a team of doctors working with me (my regular OB, the perinatologist, the hematologist, and my reproductive endocrinologist). I'll be treated as a high risk case, so I'll get lots of monitoring. Hopefully, that'll put my mind at ease a bit. We are on our last attempt. If this one doesn't work out, we're going to move forward with adoption. I'm praying it works out for us, but I know that we'll be parents soon one way or the other.

As for you, I wish you the best as well. It sounds like you have a tough decision ahead of you regarding whether or not to have DH's surgery reversed. I know that PCOS and FVL are bummers, but there are women who have had much worse problems and had successful, healthy pregnancies. There are a ton of us out there who have these problems who are TTC or pregnant. In fact, I belong to a Yahoo message board of women who are pregnant with FVL. There are at least a few who also have PCOS. I can give you that info if you want it.

PM me or e-mail me if you'd like. We can be partners in crime fighting off our PCOS and FVL together!

My thoughts and prayers are with you.

Shari

SABTeacher · 01-17-2006, 02:37 AM

I forgot to mention that there's a group of us here on SoulCysters who are TTC with clotting disorders. If you want to find us, come to the TTC section. There's also a group who are pregnant with clotting disorders. There are plenty of us around!

PCOS Chick · 01-17-2006, 07:12 AM

SABTeacher- I am heterozygous, I got FVL from my mother. About 8 mos. ago, her brother, my uncle suffered a stroke and was dx with FVL, my mom was then tested and dx. I just found out this past week.

PCOS Chick · 01-17-2006, 07:29 AM

SABTeacher I have now written three long replies to you and have had problems. I would love to chat more. I didn't see your email address but mine is emeireis@kc.rr.com

newfiecyster · 01-17-2006, 12:31 PM

I also can't take any bcp or provera for my pcos due to the fact i had a stroke while i was on provera back in 1992. But i am on metformin and is doing great on that.

SABTeacher · 01-17-2006, 03:55 PM

PCOS chick--I'll send you an e-mail shortly. Sorry you lost your long reply!

Newfie--I'm so sorry for your stroke. I hope that it didn't cause any long term problems for you. Did they test you to see if you have any blood clotting problems? I just heard that when people have clots at a young age they often have some sort of specific clotting problem upon testing. I'm glad you're now watching yourself closely and staying off hormones.

Take care,
Shari

Kayiena · 01-17-2006, 06:13 PM

PCOS Chick, you're totally ont he right page. there are plenty of folks around to help you out!

I had a dvt as a teenager, but after TONS of bloodwork, only found to have mildly elevated levels of antiphospholipid antibodies. Not even anything to worry about treating. I just have to reamin aware that I'm naturally at a higher risk for clotting problems.

If you ever venture west of your area, I'm in Topeka

newfiecyster · 01-18-2006, 12:17 AM

Quote:

Originally Posted by SABTeacher

Newfie--I'm so sorry for your stroke. I hope that it didn't cause any long term problems for you. Did they test you to see if you have any blood clotting problems? I just heard that when people have clots at a young age they often have some sort of specific clotting problem upon testing. I'm glad you're now watching yourself closely and staying off hormones.

Take care,
Shari

Shari i was lucky that i don't have any long term side effects of the stroke the only thing is my hand writing is not as neat as it was before the stroke but i can deal with that. I am not sure if they tested me for a clotting disorder all i remebers is that i had loads of bloodwork done back when it happened. Don't worry there is no way i am going to be putting any hormones in my bosy. I was even nervous about going on metformin.

guineapig · 01-18-2006, 04:39 AM

My RE told me to get rid of the cysts I had, it was bcp or Lupron (the FSH/LH antagonist). What about doses of high NATURAL progesterone (not provera, bcp, or depo)?

acrowe · 01-18-2006, 05:18 PM

I almost died from severe blood clots to my lungs at the age of 18, needless to say I cannot take BCP's either! I have controlled PCOS symptoms through diet and exercise and metformin. Im afraid neither of us will ever be able to take anything with estrogen because the risk heavily outweighs the benefits. Its hard to get my doctor to figure out that I CANNOT TAKE BCPS! My gyno recommended it several times but doesnt seem to understand the fact that I was on a ventilator for two whole weeks because of blood clots. Ugh, its frustrating!

Anyway, you CAN do it, it just may take a bit more dedication and hard work. I lost only 25 lbs and started getting my periods like clockwork. Still do, expecially since Ive now lost 75 lbs. YAY! Good luck on your journey!