Crohn's and Menstrual Cycle?

[Sunderlands]

Hello, I'm not diagnosed with Crohn's (although that's what my family and I think I have-- I've written up a formal post about my symptoms and situation here!) and I would have asked this in my other post about my symptoms but I felt more comfortable asking this here as this is a section only for female members of the site... I hope this is alright!

Can Crohn's cause you to stop having a period, or cause you to have irregular periods as in missing months and then having a period? Hopefully I am not wording this too confusingly... I haven't had a period since December, and my period in December was very light, lasting about two days. Is this normal with Crohn's? I told my mom about this, and she wasn't too surprised due to how I've become malnourished and very thin.

 

[fuzzy butterfly]

Hi I am not sure but I believe that it could affect your periods as when you are malnourished it does affect things like that. I have been on the implants for contraception for years and have had no periods in the time on them.I was on the implants before I was diagnosed. So the general effects of crohn's on periods I'm not sure of. Ask your IBD nurse if you can, she should be able to help you with that. Best wishes

 

[theOcean]

I've definitely had mine affected by Crohn's flares, as well as surgeries! So I think it's definitely possible that it's been affected.

 

[Sunderlands]

Thank you both so much for your advice and opinions on this! I really appreciate it, especially since when I brought it up with my primary care doctor (and her nurse), neither one of them really knew of any type of cause. I'll be sure to bring it up to my new gastroenterologist.

I wonder if I'll start having one again once I'm out of this flare-- of course, not having one is kinda nice (albeit a bit weird once you've had them for so many years!). You've both set my mind at ease about this, thank you so much!

 

[Cat-a-Tonic]

Physical or emotional stress, malnourishment, or sudden weight loss/gain can all definitely cause periods to become irregular or just stop, yes. It sounds like you've been experiencing all of the above! Being undiagnosed on top of it all is just another added stress and I'm sure that's not helping matters either. I hope you can get a proper diagnosis soon so that you can get on some good treatment and get feeling better! I read through your other thread, and wanted to answer one of your questions from there - no, having a normal colonoscopy does not rule out Crohn's. Crohn's can manifest anywhere in the digestive tract, literally anywhere from mouth to anus, and sometimes will hide out in the small intestine where the scopes can't reach. I definitely encourage you to pursue further testing (the pill cam could be useful as it can see the entirety of the small intestine). You know your body best and you know something is wrong, so keep fighting for answers! Good luck!

 

[fuzzy butterfly]

Your welcome hun . Hope you get to feel better soon.

 

[Sunderlands]

Thank you, mandyk! Sending hugs!

Physical or emotional stress, malnourishment, or sudden weight loss/gain can all definitely cause periods to become irregular or just stop, yes. It sounds like you've been experiencing all of the above! Being undiagnosed on top of it all is just another added stress and I'm sure that's not helping matters either. I hope you can get a proper diagnosis soon so that you can get on some good treatment and get feeling better! I read through your other thread, and wanted to answer one of your questions from there - no, having a normal colonoscopy does not rule out Crohn's. Crohn's can manifest anywhere in the digestive tract, literally anywhere from mouth to anus, and sometimes will hide out in the small intestine where the scopes can't reach. I definitely encourage you to pursue further testing (the pill cam could be useful as it can see the entirety of the small intestine). You know your body best and you know something is wrong, so keep fighting for answers! Good luck!

Haha, I most certainly have! I've definitely been experiencing a "wild time", so to speak. Yes, being undiagnosed is such a huge cause of my stress... together with all my symptoms, it's a nasty combination! That's so kind, thank you so very much! I really do appreciate it, I hope so as well. I'm really banking on a CT scan I'm getting of my abdomen (soon, I'm not sure of the exact date yet) to show something.

Thank you for taking the time to read my other thread! It was a bit long, haha. I'm going to actually write down what you're saying here-- I hope you won't mind if I use your words and tell them to my doctor because you've worded that very well and I feel like it could be helpful in a diagnosis. I've written some other things to that effect, but I've gotten pretty unorganized lately so I've lost the papers unfortunately. I've wanted to get the pill cam done ever since I've read about it. I didn't know it existed until some weeks ago, but I'm hoping that maybe my new gastro will recommend it. I'm sure he will want to re-scope me (fun, right!) but I don't know what else will happen. Really hoping for the best... at the very least I figure he cannot be worse than the gastroenterologist's I last saw.

I'll definitely keep fighting for answers, and I'll continue to research all I can and listen to all the information and advice given to me! I really do appreciate it. Thank you so much!

 

[fuzzy butterfly]

:hug:

 

[Cat-a-Tonic]

You're welcome! For what it's worth, I've been undiagnosed for 6 years and counting myself (my doctors agree that it must be IBD, but what type and where exactly it's located, they still don't seem to know). So I understand very well how frustrating and exhausting it is to be undiagnosed. I really feel for you and I hope you do get some answers very soon.

Yes, feel free to write down whatever you'd like! Keep in mind that I'm not a medical professional by any means, I'm just a professional sick person at this point. Writing things down is great, though. My mind always goes blank when my GI walks into the room, and when he asks how I'm doing I have to stop myself from automatically saying "fine". Having notes with me helps a lot! So absolutely, I encourage you to write down whatever you think may help, I do the same thing myself.

Best of luck with your CT scan! I hope it gets you the answers you're looking for! And if not, I hope your new GI is open to the idea of further testing besides just another scope - you had mentioned dark stools and blood in your other thread, and typically the darker the color, the higher up in the digestive tract the bleeding is. Meaning, another scope likely wouldn't be able to get to the source of the bleed. Make sure your new doctor knows about the bleeding and the dark stools.

 

[Sunderlands]

You're welcome! For what it's worth, I've been undiagnosed for 6 years and counting myself (my doctors agree that it must be IBD, but what type and where exactly it's located, they still don't seem to know). So I understand very well how frustrating and exhausting it is to be undiagnosed. I really feel for you and I hope you do get some answers very soon.

Yes, feel free to write down whatever you'd like! Keep in mind that I'm not a medical professional by any means, I'm just a professional sick person at this point. Writing things down is great, though. My mind always goes blank when my GI walks into the room, and when he asks how I'm doing I have to stop myself from automatically saying "fine". Having notes with me helps a lot! So absolutely, I encourage you to write down whatever you think may help, I do the same thing myself.

Best of luck with your CT scan! I hope it gets you the answers you're looking for! And if not, I hope your new GI is open to the idea of further testing besides just another scope - you had mentioned dark stools and blood in your other thread, and typically the darker the color, the higher up in the digestive tract the bleeding is. Meaning, another scope likely wouldn't be able to get to the source of the bleed. Make sure your new doctor knows about the bleeding and the dark stools.

Oh my gosh, that's awful... 6 years of being undiagnosed but knowing that you've got IBD has to be so frustrating. I can't believe the doctors can't figure out where it's located or what type! Well I can unfortunately believe it, but it's just so terrible! I'm so sorry about that, I'd ask if you've seen many different GI's to try and identify which type you've got, but I'm sure you have. Thank you, I really appreciate the support-- from one undiagnosed person to another hehe! :thumleft: Have you considered going to the Mayo Clinic, one that's near your state? I know the Minnesota one has the best digestive facilities. I hear such great things about the Mayo Clinic's digestive health services, it makes me so tempted. I wonder if they could be of any help to you...

To be honest with you, I'd take a professional sick person's advice/words to heart more than a medical professional's at this point haha! But I'll definitely keep that in mind. At any rate, it's still helpful regardless! Yes, I hope so too... my primary care doc has mentioned how she thinks I'll like my new GI, so I'm really hoping she's right. I hope he'll pay attention to all my past labwork and such too because that could possibly indicate something. Who knows, right!

Gosh, I'm the same way with writing things down and forgetting, and all that... it's kind of embarrassing, huh! I totally forget everything I meant to ask by the time my GI or any specialist walks into the room, and then as soon as I leave it's like-- "oh, I meant to ask [insert really obvious problem here that I cannot believe I forgot]!". I feel your pain! Yeah, the "how are you" question is always a tricky one. Do I just politely smile and nod to avoid the awkward reaction from being honest or do I be honest and actually say I'm not fine? It shouldn't be so tough but gosh is it!

I didn't know that the darker the color meant the higher up in the tract the bleeding is... that's very informative, thank you! I'll make sure to let him know when I see him. Thanks so much! You've been a wonderful help.

 

[Cat-a-Tonic]

I've thought about going to Mayo, but I don't think my insurance would cover me there and I'm sure it would be crazy expensive to pay out of pocket, so I haven't seriously pursued being seen there. And thanks, I guess the good news for me is that because my GI and GP both take me seriously and they both feel that it must be some type of IBD, they're at least willing to treat me with the milder IBD meds. They won't put me on anything strong, my GI doesn't even want me on prednisone, but he has me on Lialda (mesalamine) as a maintenance med and I get Entocort (a milder steroid than prednisone) for my flare-ups. That's been working well for the most part and I've spent about half of the past 6 years in remission, and seem to currently be in remission, so it hasn't been all bad! I know 6 years sounds crazy, but it hasn't been horrendous (well, at times it has, but definitely not for the whole 6 years).

And yeah, with forgetting the really obvious questions, I definitely do that too! I'm a massive introvert and I tend to sort of live in my own head when I'm alone, but when I have to talk to someone it's like I have a hard time accessing what's in my head, I sort of freeze up and become very awkward. Writing things down is a lifesaver! I usually take 3 lists with me to every doctors appointment: A list of my current symptoms with the worst ones at the top, a list of all the medications and supplements I'm currently taking, and a list of all my questions with the most important questions at the top. That seems to be the best system for me - that way I don't leave anything out, and when I glance at my lists, I see the most important stuff listed first and I can make sure that gets addressed.

Yes, the general rule is that if you're passing bright red blood in your stool, then it's very likely coming from the rectum or somewhere near the rectum. And that type of blood tends to be less worrisome, as it's likely coming from something like a hemorrhoid or a fissure. Those causes, while painful and annoying, aren't super worrisome by themselves. The darker the stool/blood is, the older it is and the longer it's had to travel through your digestive tract - it's no longer fresh and bright red. And that darker blood/stool could be caused by something like an ulcer, which is a more worrisome cause than a hemorrhoid or fissure. There are other things that can cause dark stools, like certain medicines (I know pepto-bismol is one) and certain foods (spinach or certain food colorings), but you said you've seen blood as well as dark stools, so for you I'm presuming the dark color is indeed coming from blood and not from food nor medicine, so the cause really needs to be investigated. Hopefully your new GI is good enough to understand that!

 

[teeny5]

I had lost my periods when I was flaring badly. My GI said it was due to stress on the body and the extreme loss of weight. It all came back when I had gotten better and gained some weight back.