Ladies- How did you find a gynecologist?

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Octobergirl
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Date Joined Aug 2009
Total Posts : 377
   Posted 7/13/2010 6:40 AM (GMT -7)   
I've had Crohn's for a year now and only had my period once since getting sick and that was last October. I went to my gynecologist (who I asked if first if she had experience with Crohn's and she said yes- turns out that she considered having a nurse whose husband has Crohn's and 1 previous patient was considered expereince) and did a dose of Provera. It didn't work to start my period. She then gave me birth control she wanted me to take for a month to see if it would kick start things.

I talked with my Rheumatologist, and she suggested not to take the birth control until I was fully in remission (which, who knows how long that may be), because with her other patients with autoimmune diseases the hormones can make things worse. My GI said he has seen it go both ways, better or worse. I had blood tests done and my gynecologist said everything was normal.

I'm not having much faith in my current gynecologist since she doesn't have any experience with my medications and didn't even know half the symptoms of Crohn's. I'd like to try and get pregnant soon...anyways, any advice on how to find a gynecologist who has experience with Crohn's? I've already asked my GI and my primary care doc and neither know.

Also, for those of you who have lost your period, did it eventually come back on it's own, or did you have to take some course of hormones to kick start it again? If you did, how did the hormones affect your Crohn's?

Thanks in advance!

ZenaWP
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Date Joined Aug 2007
Total Posts : 884
   Posted 7/13/2010 7:31 AM (GMT -7)   
My periods stopped when I was in my very early twenties and the doctors didn't know why.  We eventually found endometriosis (which often makes the periods worse) and did two surgeries for that.  Since switching OBGYN's, I have been on Depo Provera for about 4 or 5 years and that has kept my periods from coming back.  The hormones do not seem to effect my Crohn's any, we just check my bone density every so often since prednisone, crohn's and the depo can weaken your bones.  None of my doctors seem to have any concern re: the depo and actually said it is very reliable (which is important with some of the meds my rheumy has put me on...not supposed to get pregnant while on them).  My rheumy has no problem with the depo and my arthritis has been flaring for a year and a half straight now.  She has never mentioned to me that the hormones could affect that.  I have no idea if my period would come back if I were to stop the depo...it has been so many years now without a period.   

Crohn's Disease, Acid Reflux/Gastritis, Hashimoto's Thyroiditis, Endometriosis, Arthritis, Depression/Anxiety.  Too many meds to list them all.  =) 


Octobergirl
Regular Member


Date Joined Aug 2009
Total Posts : 377
   Posted 7/13/2010 9:25 AM (GMT -7)   
Hi Zena,

Thanks for your reply. Did you already have Crohn's when your period stopped?

I'm wondering why mine haven't come back. My GI said with my period not coming back it just signals to him that my Crohn's is active, but I thought I read here about women who still have periods while their Crohn's is active. I thought it could be because of my weight fluctuations, but my weight has been stable again for a while and it still hasn't come back. It's just frustrating.

Thanks for your info. on the hormones though. I'm glad they don't bother you.

ZenaWP
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Date Joined Aug 2007
Total Posts : 884
   Posted 7/13/2010 9:31 AM (GMT -7)   
Octobergirl, I suspect that I had Crohn's when they stopped, but it wasn't diagnosed for a few years after that.  I started having problems when I was 17, so I think I did already have Crohn's for a few years when the periods stopped.  My first OBGYN told me they stopped because I was too thin (he was old and needed to retire...I was skinny but not THAT skinny that they would have stopped because of it).  While doing tests to figure out what was causing my problems, some fluid showed up in my pelvic region, which they suspected was endometriosis.  They did surgery and he told me the periods would then start back up.  They didn't.  I switched to a female OBGYN and she went in and saw that he hadn't gotten all of the endometriosis, so she cleaned me out again.  She put me on the Depo Provera instead of the birth control pills that he had me on and I've been on it since.  I think she believes that my period would come back if I stopped the Depo, but she doesn't want to take the chance on my endometriosis coming back. 

Crohn's Disease, Acid Reflux/Gastritis, Hashimoto's Thyroiditis, Endometriosis, Arthritis, Depression/Anxiety.  Too many meds to list them all.  =) 


sr5599
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Date Joined Aug 2007
Total Posts : 1202
   Posted 7/13/2010 9:39 AM (GMT -7)   
I also stopped having my period about 7 years ago, after dx of Crohn's. I was only about 35, and they were nearly stopped for a year or so before that. They have done tests to see if I am menopausal, but I am not. I just don't have periods.

When I got pregnant with my daughter, pre-Crohn's, I used infertility meds (clomidx3pills) to achieve pregnancy. I had been on the pill for years and years so they tried to kick start my periods by giving me a shot of progesterone. The pills did not induce a period (progesterone pills to induce withdraw bleeding), but the shot did. (I guess, if I remember correctly, the pills are synthetic and the shot natural.)

When I chose a GI now, it was just through faith in the clinic with which he is associated. I'm not trying to have more kids, so I guess my response on that part isn't very helpful. But, since you were talking about trying to induce a period, I figured I'd share my experience.

Good luck!
1 fistula, crohn's colitis, limited to large intestine
Compounded budesonide 3mg/daily, Cimzia. Dx Osteoporosis 10/08 started Forteo 1/27/09


Octobergirl
Regular Member


Date Joined Aug 2009
Total Posts : 377
   Posted 7/13/2010 12:37 PM (GMT -7)   
Zena, thanks for clearing that up. I'm sorry you've had to deal with all that. I'm glad you're better regulated now.

Thanks, sr5599. I appreciate your input. I wish we could figure out why our periods stop, maybe it's just from Crohn's?

Does anyone have any input on how to find a gynecologist that has experience with Crohn's? I wouldn't worry about it if I didn't want to get pregnant. How about you ladies that had pregnancies after your Crohn's diagnosis. Did you find a gyno that dealt with Crohn's pregnancies?

kazbern
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Date Joined May 2010
Total Posts : 8375
   Posted 7/13/2010 2:14 PM (GMT -7)   
Octobergirl, I cannot think of why Crohn's would affect your ovarian or pituitary function.  If you are malnourished from Crohn's, then perhaps that would be why.
 
On the other hand, I do believe that the hormonal cycles a normally ovulatory woman goes through wreaks havoc with bowel disorders.  It is a good thing (from the point of view of minimizing your bowel discomfort, joint pain, etc.) that you are not cycling.  Maybe that's what your rheumy meant by saying you should stay off hormones (like BCPs) until you have achieved remission.
 
Pregnancies with autoimmune diseases can go one of three ways.  Your autoimmune disease can get worse, it can get better, or it can be the same.  There is an equal distribution of these responses to pregnancies among people with autoimmune diseases (like asthma, arthritis, crohn's, etc.).  For me, my asthma got much, much worse.  But my bowel disorder got much better.  Probably because I no longer had weekly changes in my hormonal status, just a constant dose of estrogen, progesterone, etc.
 
There are a myriad of reasons why some women don't menstruate regularly.  If you are serious about getting pregnant soon, you should see a reproductive endocrinologist and explain everything you're going through.  A regular OB/gyn who doesn't pursue amenhorrea in a young woman should be left in the dust, IMO.
 
 

cupcakespinkgal
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Date Joined Jun 2010
Total Posts : 1277
   Posted 7/13/2010 3:49 PM (GMT -7)   
Well not sure on how to find an obgyn with Crohn's experience because none of mine have ever really had a clue about it. But I have had trouble with my period since my Crohn's and no other female issues were ever diagnosed. After I was first diagnosed and had my first severe flare my period stopped. It never came back, they gave me some progesterone pills that restarted it and then started me on the bc pill for awhile. I have recently stopped the bc pill because we are thinking of trying to get PG in the next year. My period came right back, which is weird because before I started the pill I hadn't had a period in 2 years, even when my Crohn's went into remission.

I will say this though, since I am back to having a regular cycle every month my Crohn's has not been happy. Every time I have my period now my Crohn's gets mad and it takes me a couple weeks to get it calmed down. On this last flare I have lost quite a bit of weight (my skinny clothes are now baggy) and my period is still regular. The body and hormones are a mystery, it seems they are linked but there is never a pattern!
Diagnosed with Crohn's in 1998, father has UC we were diagnosed at the same age.

Currently on 10 mg Prednisone, 4g Sulfasalzine, VSL#3, Vitamin C, Calcium, Magnesium, D3, Chlorophyll, and LDN. Previously on Remicade, just stopped Humira after 9 months, wasn't working.

No surgeries so far.


kazbern
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Date Joined May 2010
Total Posts : 8375
   Posted 7/13/2010 7:06 PM (GMT -7)   
Cupcakes and Octobergirl, you got me thinking! I had difficulty conceiving and was finally diagnosed with an ovarian dysfunction...my periods have never been regular and my FSH was trending high when I was 35 (not a good thing). There were other endocrine oddities that no one could explain, but all of this came about before I had any diagnosed bowel disease.

Your experiences and the others that posted here got me googling. Here's an interesting finding: in Table 1 of this page (http://www.merck.com/mmpe/print/sec18/ch244/ch244b.html), one of the main causes of secondary amenorrhea (you started menstruating at the right time, then stopped later in life for no obvious reason) is hypothalmic dysfunction associated with chronic GI disorder like Crohn's.

Anyway, it's a great page to read. At the bottom is a flow chart that shows what kind of testing should be done for women who miss more than 2 periods and aren't pregnant. You should go through this process if you plan to get pregnant, so you don't wait too long to get started. It took me 5 years and many tens of thousands of dollars to conceive my first daughter.

Post Edited (kazbern) : 7/14/2010 10:06:36 AM (GMT-6)


Octobergirl
Regular Member


Date Joined Aug 2009
Total Posts : 377
   Posted 7/14/2010 1:00 PM (GMT -7)   
Kazbern- Thanks for the link. I'm starting to get really worried about not having my period come back. :( Maybe I should just suck it up and try the birth control. I know that most women would probably be thankful that they're not having a period, especially if they have issues with their cycle and Crohn's, I'm just sad, because I worry I may not be able to have kids. We'll see. Interesting link though.

Cupcakes- Sorry you have issues with your Crohn's around your cycle. I have heard that before. I know, it's frustrating that there doesn't seem to be a logical pattern with hormones.

kazbern
Veteran Member


Date Joined May 2010
Total Posts : 8375
   Posted 7/14/2010 1:25 PM (GMT -7)   
Octobergirl, don't panic about not being able to have kids. What I was trying to communicate is that if you're not menstruating you need to know why, beyond "well, it's typical of Crohn's patients." When you are ready to get pregnant you will know exactly what problems need to be solved. How long it takes to solve those problems, and what the costs might be, is not predictable. What is generally true, however, is that it gets harder to get pregnant with every year you age.

I would say that hormonal fluctuations and Crohn's have a lot of logic. There's two sides to that coin, though. On the one hand, if you're menstruating, it is probably true that your hormonal cycles make your bowels unhappy and you'll probably have other issues, like joint pain or fatigue that you'd associate with a flare of your IBD. On the other hand, there's apparently a link between chronic GI disorders and a hormonal dysfunction that makes some people's periods stop. Maybe that's a good thing - while the gut is inflamed I'd rather not have my period.

I'm in perimenopause and I've had really short cycles for about 4 years. REALLY short. Like every 17 days. Just recently they've begun to stretch out and this last cycle was 2 months between periods. That was very nice for my bowel.
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