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PCOS, Metformin and Crohn's

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Posted 2/14/2011 9:50 PM (GMT 0)
I was just recently diagnosed with PCOS, polycystic ovarian syndrome. The strange thing is, all of my blood work has come back normal, but on my ultrasound there were several small cysts on my ovaries. I used to be very regular with my periods until I got sick with Crohn's. Since the initial diagnosis about a year and half ago, I've only had 3 periods (2 which were forced by birth control).

Does anyone know if there is a link between PCOS or cysts on your ovaries and Crohn's? It seems really strange to me that I was regular before Crohn's and now my cycle is completely out of whack. I do have Crohn's-colitis if that makes a difference.

Also, has anyone here taken Metformin? I'm afraid to take it, because one of the main side-effects is GI upset and diarrhea. I'm not that excited about the thought of just adding to my GI issues. I'm afraid of how this may upset my Crohn's disease and I was hoping someone could tell me their experiences.
Posted 2/14/2011 10:34 PM (GMT 0)
Octobergirl, can you elaborate on what "normal blood work" means to you? I'm not sure what they're looking for in a PCOS diagnosis, but if you're not menstruating normally, how are they getting baseline hormones?

Have you had an insulin resistance test? (I think that's what they call it)

Why does your OB want you to take metformin?  Are you trying to get a regular cycle so you can get pregnant?

Many of my friends with PCOS were able to normalize their ovarian function with a low carb diet and did not need Metformin.  I would agree with you - from what I've heard the gut problems with Met can be pretty bad.  Can you try a low carb diet first?  Talk to a nutritionist who specializes in PCOS.

Posted 2/15/2011 12:42 AM (GMT 0)
I have never read anything connecting PCOS with Crohn's.

I agree with kazbern, try the low carb diet if you can. I was diagnosed with PCOS about 15 years ago and went low carb for a few years. I easily lost over 50 pounds and many of the PCOS symptoms disappeared and never returned. I am still hypoglycemic and I control it with diet, eating some protein carbs and fat every 2-3 hours.

The problem I have now with low carb is that sometimes I have a lot of trouble eating protein and vegetables. My guts feel better when I eat carbs but the rest of me feels worse.
Posted 2/15/2011 1:00 AM (GMT 0)
I have PCOS, but have never taken anything for it, aside from Clomid while trying to get pregnant.
Posted 2/15/2011 1:52 AM (GMT 0)
Kazbern- They tested my FSH, LH, Free T4, TSH, Total Testosterone, Free Testosterone and fasting glucose. Everything was in the normal range, though if you're asking how they come up with normal ranges, I don't know. I don't have any of the typical symptoms of PCOS (high testosterone, obesity, excessive body hair or acne), I just have polycystic ovaries and am not ovulating.

I had my fasting glucose done, which I'm not sure if it's the same as the insulin resistance test. Mine was normal, though I do think I probably have some insulin resistance, because if I do gain weight, more of it is in my abdominal area than other areas.

I am trying to do low carb, but do you know how long your friend's had to be on low carb to ovulate again? I'm of a healthy weight, and so I don't necessarily need to lose weight.

My OB wants me to take Metformin because both the fact that I would like to get pregnant, and also because there is a higher risk of getting diabetes.

Dagger- How many carbs do you eat a day? I'm wondering how low I need to go. How long after you started low carb did your cycle become normal? I'm wondering how long I need to give low carb a shot to see if it will work. I'm not fond of taking medications anyways, so if I can control it through diet, that would be awesome.

Chrisnsteph- Were you ovulating at all without the Clomid? I'm afraid of taking Clomid for the fear of making my Crohn's flare. Also, I just read today that if you're of a healthy weight or "thin PCOS" that Clomid actually doesn't work well for that situation, because it reduces estrogen. Did you have success with Clomid?
Posted 2/15/2011 3:13 PM (GMT 0)
Octobergirl, Clomid is the first fertility drug docs try, but if it doesn't work after 3 cycles then it is not going to work (it does change your estrogen levels, messes with the uterine lining and besides makes many women feel emotionally overwrought - not pretty!). It doesn't work for most patients. How old are you? A reproductive endocrinologist might be a more appropriate specialist to see if you are struggling with getting pregnant, having PCOS and dealing with Crohn's (although no RE I ever met knew a whit about bowel disease). If you are over 30 I would head to the RE's office and let your OB/Gyn know you'll be back when you're pregnant.

I don't know how long low carb has to go on to normalize ovulation. The women I know who did it usually followed Atkin's, if that gives you any clue as to the amount of carbs they ate. I totally understand your dilemma about pleasing your gut vs. addressing your ovarian dysfunction! And by the way, I think my Crohn's affected my endocrine system - I had a heck of a time getting pregnant (before my CD diagnosis) and the only thing that came up about my hormones was that my FSH was high and my estrogen lowish. Perhaps PCOS is not the right diagnosis for you????
Posted 2/15/2011 3:30 PM (GMT 0)
I haven't got PCOS but have got cysts on my ovaries which is linked to all the scar tissue from the Crohn's. All my blood tests came back normal as well and even when went through IVF they said should have no trouble getting pregnant as blood work perfect but IVF drugs didn't work at all and no one could explain why. I had to have IVF as Crohn's has been so aggressive that it has basically melted everything together and the fallopian tubes are stuck together with scar tissue and no hope of rectifying this. The only symptom I get is when I ovulate I get very sharp stabbing pain on side I am ovulating on for about 12 hours which is the cysts filling with fluid and pulling on the scar tissue.
Posted 2/15/2011 4:53 PM (GMT 0)
tsitodawg,
I don't have diabetes, and actually my fasting blood sugar was normal, but I guess I could possibly still be insulin resistant. Since your diabetes is steroid induced, does that mean you don't have it if you're off steroids?

Kazbern,

I'm 32, so I'm getting anxious about getting pregnant as I feel I don't have that much time. I am trying to get in with a Reproductive Endocrinologist, and I'm hoping he can help.

Were your friends who did low carb overweight? I've read on a few PCOS websites about some women starting to do low carb and it helping their cycles when they lost weight, but I don't really need to lose weight, I suppose a few vanity pounds, but I'm in the healthy range, so I wonder if it will still help me to go low carb. I'm still going to, I just wonder if it will affect my situation the same way.

Stripey- I'm sorry that you are going through all that. Is it the inflammation from Crohn's that has affected your ovaries? Is it just that everything in that area is inflamed?


I suppose there may not be a link between Crohn's and PCOS, but I have read a few places that PCOS is related to inflammation, so I guess that the inflammation from getting Crohn's disease was enough that it affected the PCOS enough that I finally had symptoms- no ovulation. I don't know what else I could have, but I would like to get a second opinion, and I don't understand why I'm not ovulating at all when before Crohn's I was regular. It's just frustrating.
Posted 2/15/2011 5:37 PM (GMT 0)
Octobergirl. Yes it was the inflammation from the Crohn's and from the surgery to remove colon and lots of small bowel that has caused all the scar tissue and when the Crohn's is very aggressive it can affect the organs and structures near the bowel. Hope you manage to get things sorted and answers to your questions. I know loads of people with Crohn's and all those that wanted to have children have gone on to have them, so don't give up hope. I was just very unlucky.
Posted 2/15/2011 6:57 PM (GMT 0)
Octobergirl, not all of my friends with PCOS were overweight. I thought it was amazing that a simple dietary change could affect their ovulation, it was really something new to me. I believe an RE will be able to explain this all to you much better - the endocrine system is quite complicated and I don't think the whole picture is clear yet as to why ovarian function is connected to insulin resistance, etc. In my personal case, my ovarian dysfunction was thought to be an autoimmune problem (like Crohn's). It could be that PCOS is an autoimmune thing too - PCOS is definitely an inherited trait, though.

PCOS tends to worsen as the woman ages. That's why it gets passed down - women who had children in their 20s were still ovulating normally then... in previous generations these women might not have been able to conceive in their 30s and 40s but they already had their families. Nowadays many women don't start trying to conceive until they're in their 30s and I think that's why PCOS has become such a frequent diagnosis. Perhaps that's why you noticed this change in your cycle - if it is PCOS, it is changing as you age.

I started trying to conceive at age 32 also. I first saw an RE when I was 32.5, and my first daughter was born when I was 37. The process was gruelling but ended well. There are many, many support groups online for people trying to conceive, and you may find some help that way. You should absolutely go see an RE. Ask around, visit your local RESOLVE chapter, and see which REs in your area are well-liked.
Posted 2/15/2011 9:56 PM (GMT 0)
Stripey- I'm really sorry you had such a hard time. Thanks for sharing your story with me.

Kazbern- Well, that's good to know that the low carb can help ovulation in of people of a normal weight. I'll definitely stick to it, and I'm hoping it helps.

The whole PCOS thing is interesting to me. I don't know anyone in my family who has it, but I do know diabetes runs in our family. It's just really strange to me that I had no issues really at all before Crohn's and once Crohn's hit, my period stopped. I initially thought it was from losing so much weight. It came back and then once I flared again it went away. My period seems to go away whenever I flare, which was really most of the time I've been diagnosed. I do think there is some sort of connection, possibly my Crohn's inflammation influences my hormones.

Did you have your baby before your Crohn's? I was wondering how fertility drugs have affected Crohn's patients. It doesn't seem like a good combination. I'm hoping just a low carb diet will be enough to help me to ovulate again and possibly get pregnant.
Posted 2/15/2011 10:23 PM (GMT 0)
Octobergirl, there is so much going on in our bodies when Crohn's is flaring. My 2nd cousin has pretty serious IBD and he sent me info a while back saying: "One thing that really helped was DHEA supplements. I take 200 mg every morning. If you haven’t had a full set of steroid hormone tests done since your diagnosis (progesterone, estrogen, DHEA-S, cortisol, etc.) it’s worth pushing for. First, people like us with disease in the ileum tend to have low cholesterol, which is the basis for all those hormones. Then the body tends to lower levels of all the other cholesterol-based hormones to keep cortisol levels up. If your DHEA-S levels turn out to be low, it would be well worth talking to an endocrinologist about it."

Perhaps this is why your periods stop when you're flaring.

My IBD diagnosis came about because I had rectal bleeding after the birth of my first daughter. I'm sure that I had bowel disease before that, just not serious enough to send me to the doctor. The changes in the immune system during and after pregnancy can trigger an autoimmune disease flare, which is why I think my condition got so bad right after her birth.

The fertility drugs I took had no effect on how my bowels behaved. I didn't know I had IBD then and I can't say that things were better or worse in that regard when I was taking all that stuff.
Posted 2/15/2011 10:45 PM (GMT 0)
I had the symptoms of PCOS for years before I was diagnosed. For most of that time I was at a decent weight for my build, less than 135 lbs at 5'5". My hormones were so screwed up that I didn't even know I was pregnant until I was about 19 weeks along. I gained a lot of weight about 2 yrs before diagnosis.

I went low carb using a combination of everything out there. I read the different diets and designed something that would work for me. I did 25g/day for about 2 weeks and it was absolutely awful, I felt worse than ever, craved carbs, couldn't think. I increased to about 60 g/day and felt better. I ended up at less than 100g/day after that. I ate about 5 - 6 times /day so I kept the carbs to about 15-18/meal. I didn't eat any grains or starchy vegetables. I got my carbs from cooked vegetables and berries. It took a few months before my hormones and cycles became regular. I don't think it had anything to do with losing weight because I was not regular when I was really skinny.
Posted 2/15/2011 11:23 PM (GMT 0)
Octobergirl, you are more than welcome. I think as doctors and scientists learn more about how our bodies work and how things are interlinked then it may prove what you are saying about CD and hormone related issues.

Good luck for your future treatment.
Posted 2/19/2011 7:07 PM (GMT 0)
Octobergirl,

I have been ttc for 2.5 years, I am 28, and I also have Crohn's and PCOS. I was diagnosed with Crohn's about 15 years ago and my PCOS was diagnosed this month. I have been going to infertility clinics for well over 1.5 years and my new clinic finally figured it out!

I have been on fertility meds in the past and they didn't seem to bother my Crohn's, although it is active right now. I have been on Clomid, progesterone, Follisitm, and ovadril for the fertility-all before I was diagnosed with PCOS. Now I am just on Metformin and I will be starting progesterone 3 days after ovulation. I was also told to diet and exercise but I am having a hard time with the diet because of the active Crohn's. I am also a "skinny" PCOS. I am 5'2 and weigh 110. My infertility specialist said that the metformin, diet and exercise will all help with regulating how much insulin I am producing and using. I am hoping that this will do the trick and I won't have to go on any other fertility meds. I actually don't have a problem getting eggs to grow big enough, they just don't always "release" when they are suppose to and then I get cysts from that. I am the only one in my family with this too.

The Metformin has not increased my diarrhea, but I did feel nauseated when I went from 500mg to 1000mg. My doctor told me to go back to 500mg for a couple more weeks and then try to increase again. I have heard good things about the extended release Metformin if I continue to feel nauseated.

I am wondering if you are on the low GI diet, and if so, how are you doing it? I have a hard time eating whole grains and vegetables. I have a stricture in my terminal ileum so that makes things a bit difficult.

I have not heard of any correlation between PCOS and Crohn's but I am going to ask my GI doc about that. I have an apt with him March 1st.

I have been feeling very alone with all of this so I am really excited that there is someone who can relate.
Posted 2/20/2011 3:44 AM (GMT 0)
I was diagnosed about 8 years ago with PCOS. They wanted me to take Metoformin, but once they started telling me how I had to eat with it, or I'd get diarrhea, I decided to pass. More diarrhea was the last thing I needed!

I had our son when I was 20 years old. As someone else said, seems to get worse as we age. At 24 I had a miscarriage and couldn't get pregnant after that. Saw a specialist and they found all the cysts. My periods had been a complete mess up until then too. So between my high blood pressure, Crohn's, and PCOS I kinda gave up on having any more kids. I've taken the birth control pill to stop the symptoms of and messed up periods from the cysts (I skip all my periods, and have one or two a year tops).
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