Females and fisulas...odd question? Warning: Guys might want to avoid!

[Cookie]

Ok, sorry if this is a strange question. Has anyone every had a fistula that connected to your uterus or other internal female parts (other than vaginal)? What were the symptoms and how did you find out? I have a history of rectovaginal fistulas and often wondered if there could be anything happening higher up. Here are some strange things I have noticed that make me wonder:

1. Cloudy pus-like white discharge from my vagina after urination (constant for about the last year)
2. Heavier than normal periods, coupled with painful cramping and increased bowel activity during this time (somewhat normal for Chronies though)
3.Never had blood in my stool until today and it is the first day of my period. Stool was covered with bloody mucus like threads.
4. Frequent lower back pain

I am in a bit of a flare, so this could explain most of these symptoms, so I guess this my appear to be a little alarmist, but I have been trying for several years (unsuccessfully) to get pregnant and this is one of my biggest fears! Does anybody have any input on this? It's much appreciated!

 

[mizgarnet]

Cookie- I actually had your symptoms back in '91 when I was diagnosed with the lovely Crohn's. I had an hysterectomy due to endimetriosis (sp?) and they found the Crohn's. I found out a couple of years ago that C&E can and will pair up... I do not know if it was the E causing that group of symptoms or the Crohn's. No mention of fistula back then.
Hugs,
Wendy

 

[Cookie]

Thanks Mizgarnet. Did you have the vaginal discharge? It's my most puzzling symptom. I've written it off as yeast, but I don't have the classic symptoms of a yeast infection and I have tried Monostat which did not stop it. If you don't mind, what other symptoms did you have? How did you discover the endimetriosis? Thanks for you info!

 

[mizgarnet]

I had the discharge in '91 and strangely enough when I was very anemic in '07. My other symptoms were EXTREMELY heavy bleeding lasting 3 weeks out of every 4, terrible cramping, and back pain. I had a bloody stool with mucuos once in '91. That occurred right before my surgery. My flow was clotted and stringy. The GYN I was seeing based the diagnosis on instinct and family history. My current GI says that some of the problems I have now are residual endimetrial problems. The endimetrial tissue was/is growing on the outside of my intestines. Go figure.

 

[Terriernut]

Cookie, I had a fistula through my left fallopian tube. Symtoms, major pain (and I have a very high pain tolerance), fever, night sweats, heavy periods lasting longer than normal, discharge, spotting.

But, I was in a crohn's flare. They did 3 CT scans on me and didnt spot the fistula. It was only during surgery that it was found. :yfaint:

HTH,
Misty

 

[Cookie]

Wow. Sounds scary I hope things are better for you now. Funny you say that about the flow. My flow is VERY clotted and stringy, almost like it is full of mucous. My family history is not too good in that area either. My mom had a complete hysterectomy after I was born. She was only 22 at the time. She said it was due to cysts on her ovaries and uterus, but medical technology was not as good back then in the early 70s, so who knows exactly what was up. Do you think that I should talk to my GYN or my GI about my concerns.

Thanks again for sharing your experience! It makes me feel a little less crazy!

 

[Terriernut]

I think you should speak to your GI, as you now have blood in your stool. Never ever a good sign. And I wouldn't wait to speak to him/her either!

Good luck and keep us posted...and take care of yourself!

(ps...my family history same...not a female on my mom's side had all her 'parts' after about the age of 30...except me...I'm 48)

Misty
:hang:

 

[Cookie]

Thanks Misty. I have a check up on the 29th with my GI, so I will mention it to him. I think I may also make an appt with my GYN. It's almost that annual time anyway. Thanks for sharing your story. It sounds to me like a lot of internal fistulas go undiagnosed without exploration. Seeing as I have a history of fistulas, that really scares me. If you don't mind my asking, what was your surgery for when they found the fistula? I hope things are doing better for you now.

 

[Terriernut]

Glad you have an appt booked! Yeah, the gyno too.

I was having my sigmoid removed and getting the bag to go with my matching shoes!!! Anyway, when they opened me up for that they found the fistula. Apparently it's quite rare. Since I am rare, I wasnt surprised!

But with your history of fistulas, they sure need to keep an eye on you!

Misty

 

[Cookie]

An update on this thread...

It is now the third month in a row that I have had blood in my stool during my period. And I am talking clots of blood now. That is the ONLY time I have it. I had a colonoscopy in April which showed Crohn's in remission. I have been having horrible cramping with my periods and shooting pains in my rectum and vagina. Both my GI and OBGYN seem to be blowing this off. This is not right. Feeling very helpless and don't know what to do. Any advice please???

 

[StarGirrrrl]

Would it be possible for you to seek a second opinion for both GU and OBGYN?

 

[Cookie]

My GI's nurse just called me back and wants me to come in for an exam today. I had called and left a message this morning. Not sure what they can find through a physical exam, but I will keep you posted. Until now I have been lucky in that I usually have clear cut symptoms, clear cut diagnosis, clear cut treatment. I feel like maybe my docs are a litlle hesitant because they don't know what to do. And I really wish I knew what was going on.

 

[Terriernut]

Cookie, I hope you get answers. You may have a fistula, and you will certainly need treated immediately for that. Bless you!!

I hope you get help this afternoon, please keep us posted and good luck!

Misty

 

[Cookie]

Thanks Misty and Star for your thoughts. I will keep you posted.

 

[Jennifer]

Let them know what YOU think it is and ask them to check you for a fistula. Mention that its happened in the past as well. If they still do nothing then you may need to check out the ER (they can do tests there, let them know what you think it might be) and get a second opinion from another GI and GYN.

 

[Cookie]

So apparently this is nothing to worry about. My GI is out this week, so I saw his associate. He was so nice and so calming, he convinced me that this is completely normal. My blood work looks great, my colonoscopy looked great. I left there feeling completely reassured...nothing to worry about. Then I get home and start wondering all over..."Why am I bleeding from my butt?"

 

[Terriernut]

Did they check your CRP level in case you are starting to flare?

Misty

 

[Cookie]

Yes. My CRP was 0.3. I had a colonoscopy the first week of April. It only showed scarring in my colon, indicating my Crohn's is in remission. I am starting to worry that this may be related to female issues more so than IBD.

 

[ThatBeerGuy]

Awww im a guy and might be able to help with this one. My wife has a rare skin condition called HS, in our research on it we stumbled on several medical journal's that are showing about 85% of Crohn's patients develop HS. Im a nutshell HS is tunneling boils that can become huge and painful. They normally develop ( in Crohn's patient's ) in the vaginal, or penis area, the peri - anal area's ( taint ). There really isnt anything they can do for HS other than excise the affected area. Do a little research on the connection between the 2 and talk to your Doc about it. I really hope it isnt this, and that you get answer's soon. Your in my prayers.

 

[Terriernut]

Very sweet of you ThatBeerGuy. But what is HS for us folks not in the know?
Misty

 

[Cookie]

Thanks for the info, Beer guy. Didn't mean to exclude you from the thread :wink:
Are the boils caused by HS similar to fistula? I have had rectovaginal fistula in the past. No fun.

I actually just returned from an appointment with a fertility specialist since my husband and I are trying to conceive. He is quite sure that I have endometriosis that has invaded the bowel, which is what I suspected. He does not want to do laparoscopy since my crohn's is in remission and he is afraid to stir the sleeping giant. We are going to proceed with fertility treatments. His thoughts are that pregnancy will help with the endo symptoms. I am all on board. Excited and scared at the same time. Keeping my fingers crossed!

Does anyone have any experience with endo and infertility? I would be interested in hearing your story.

 

[ThatBeerGuy]

Hidradenitis Suppurativa is the true name I am adding links to picture's but beware they are nasty. It is basically tunneling boils. Warning this link will bring you to a pic of a small HS lesion ... http://www.google.com/imgres?imgurl...dsp=20&ved=1t:429,r:15,s:151&biw=1366&bih=669.

Here is info on what it is .......... http://en.wikipedia.org/wiki/Hidradenitis_suppurativa

Here is one on some of the known causes.................... http://www.mayoclinic.com/health/hidradenitis-suppurativa/DS00818/DSECTION=causes

Fistula and Hs lesions are very similar