Wondering if this is Crohn's, or maybe endometriosis?

[SarahBear]

Hmm, not sure what the best title for this thread would be.

Anyway, I often have some mild pain / discomfort in my lower abdomen while using the bathroom. Usually no big deal. That's where my Crohn's pain usually is, although it feels more similar to cramps. I've just been writing it off as Crohn's. However, the other day it got fairly severe. Sharp, shooting pains in that area. Nothing more after that, but it happened again (less severe, but more so than typical) a few times today. I should also mention, my period started two days ago (day before the severe pain).

I asked my friend about this, and she said it's probably just ovulation or cysts on my ovaries. A CT scan showed some small cysts, which they assured me was normal. However, after doing a bit of googling, I see that this is a fairly common symptom of endometriosis - and that having Crohn's would increase my risk.

I don't typically have bad cramps, just somewhat mild, if I have them at all. So, that makes me think I'm probably over-reacting. However, I see that UTI-like symptoms are also symptoms of endometriosis, and I have those frequently. Not necessarily pain, but urgency is very common with me. Sometimes for weeks at a time, and sometimes just for an hour or so a day, and then it's gone. Also, I used to have a lot of lower back pain with my period. Now, it actually happens almost every morning when I wake up - also, all my insides kind of hurt, but I have no ideas on that one. It's probably also worth mentioning that I have had a lot of pain and fatigue in the past six months or so, but a blood test and pill cam actually showed no evidence of Crohn's (although tests done in 2008 were fairly clear on the matter), so my GI is slightly confused as to why I've been so miserable.

I already have an appointment with the gynecologist scheduled for October 3rd, and I plan to mention to him what has been going on and see what he says. As of now, I'm only slightly concerned - I don't see that I've been showing enough symptoms to actually get worried. I'd just like to check.

So basically, what I'm asking is, what do you all think? For those of you with endometriosis, is this similar to anything you've experienced?

Thanks!

 

[prplkow]

I had endo and I had a lot of the symptoms you are having. I started with the ovarian cysts before my period in my teens and it just got worse as I got older with the pain never going away. I had a hysterectomy in 2008 and now I am having some of the symptoms again. I just got dx with CD a couple of months ago. My GI wants me to follow up with my gyn to make sure the endo has not come back as well and my appt is on Monday. I had a lot of endo on my bladder removed, so I understand the urgency and pain issues. I seem to have those again as well as pain in the places where my endo pain was....but my Crohn's is there in that area as well. It is very nerve wracking. I am glad you are following up with you gyn on these issues. I hope you get some answers and feel better soon.

 

[SarahBear]

Thanks! Thus far it hasn't been extremely painful (just that one time, and only for a couple minutes), but since it used to be less, I am worried that it's going to get worse. Like I said, I typically don't have bad cramping or anything, but I used to never cramp - although I was on birth control. I've been off of it for about a year now, and at first I had no problems. But in probably the past six months or so, I've been having mild cramps every once in a while, and my period has become a little bit less regular, it seems.

Thank you very much, and I hope all goes well for you, too!

 

[SarahBear]

Just an update:

I saw the gynecologist today and he thinks endometriosis is a possibility. He said I'm extremely tender, so he sent me for an ultrasound immediately after the exam. I should be hearing back about that within a few days. If it shows nothing, we'll move on and try the next thing!

 

[prplkow]

Good luck. Keep us posted. =)

 

[SarahBear]

Thanks!

The ultrasound showed nothing abnormal, only a small cyst that the doctor said was from ovulation and completely normal. If the pain persists after I start back on birth control, he wants to refer me to someone to open me up and check it out.

:/

 

[prplkow]

That is great news about no abnormalities! Just keep an eye on it. Hope things keep on the mend and there is no "opening up" needed. =)

 

[SarahBear]

Thanks! I'm really hoping for that! I'd like to keep myself closed up if at all possible, haha!

 

[Crohnie86]

I used to have the same exact thing. I still do, just not as often. I saw my OB/GYN and has an ultrasound, but the only thing they saw was a tilted uterus (which is common). They said it shouldnt cause that much pain, and thats when they sent me to my GI Doc. I hope you find something out. Keep me updated cause I'm not sure what it is either.

 

[SarahBear]

Thanks for responding!

Did either of your doctors mention endometriosis?

I will, and you do the same!

 

[SarahBear]

Also, does anyone know of anything else that could cause these symptoms? Thanks!

 

[prplkow]

My mom had endometriosis, so my gyn pretty much assumed with my symptoms that I had it too. My mom had her hysterectomy when she was 24 because it was so bad. I had mine at 41. The endo was confirmed with ultrasounds (one on the abdomen and one vaginally). I had very irregular periods, anywhere from 5 - 8 weeks. Then the bleeding would not stop and I had to have a couple of ablations. I could not have sex and she could not exam me because of the pain from the endo. That is why I finally had to have the hysterectomy. Unfortunately, like Crohn's, it doesn't necessarily go away and can come back with a vengeance. Oh, and I could not take birth control pills because all of them made my blood pressure sky rocket. Sorry if that was all TMI. Not sure what to tell you except for stay on top of the symptoms and keep in touch with your gyn and GI. I sure hope the birth control pills help. Oh and endometriosis is fed by estrogen. Not sure how that info can help, but thought I would throw that out there. I had majorly high estrogen levels.

 

[SarahBear]

Don't worry about TMI, it's all helpful information!!

That all sounds awful, and I'm sorry to hear you had to go through that! Thanks very much for the help and support!

 

[Cpeta]

I have experienced very similar symptoms which lead to transvaginal ultrasound, urine tests for UTI, and a cystoscopy to look at the lining of my bladder and make sure that there were no bladder abnormalities. Everything came back clear. For me, very luckily, in general it appears just to be the inflamed gut pushing against everything. However, my last transvaginal ultrasound showed an ovarian cyst, and this was not long before I found out that I was pregnant with my baby boy who is due this Saturday. Maybe take a pregnancy test too?? Might not be the case. Good luck, I'll be thinking of you.

 

[SarahBear]

Thanks for your response!

I'd say it's fairly unlikely that I'm pregnant. Wouldn't that have shown up when they did the ultrasound? They didn't give me a test when they prescribed birth control, which is kind of odd (I thought they always did?!) so I might take one before I start the birth control, just to be safe.

I'd assume it was the inflammation pushing on stuff, but my pill cam and colonoscopy showed no inflammation.

Again, thanks! And congrats on your baby boy!!

 

[SarahBear]

Update:

Two days before my period began this month, I started getting very dizzy, tired and nauseous in the afternoons. Two days in, it's still happening. I haven't started the birth control yet (it says to wait until your chosen start day after your period begins - I figured Sunday would be easiest, since it's what the packets have printed on there, so why fiddle with the stickers if the day makes no difference to me?) but I plan to start it today to get things moving faster.

Yesterday, I was in pain all day. Pain in general, pain when using the bathroom, and pain when sitting down (if I had been standing for more than ten minutes or so). I was kept awake for several hours last night by the pain and nausea.

I called the gynecologist today. He isn't in, but his office staff directed me to, "Take the birth control for a few months." I told them it's interfering with my life, even asked if I should go to the GP to make sure there's nothing else going on, and they said it shouldn't be necessary.

Before I have the laparoscopy done, I feel like I should probably consult with my GI. I have an appointment with him in early December. However, I feel like I should probably be having this checked out, whether the birth control works or not - because if endometriosis is NOT causing this, I need to be looking for something else (since my Crohn's is seemingly inactive). And who is to say that whatever else it could be won't stop after I take the birth control, for that or other reasons?

Thoughts? Advice? Kind of frustrated with this.

 

[Mattannika]

Hi Sarah, For years I have been treated for endometriosis. It was always an assumption and my periods were excrutiatingly painful and there was tissue growing in places it shouldn't. Which it does with endo and then when you ovulate your body tries to flush it all out and that's where the pain comes from. That's how it had been explained to me. however, I had never been officially diagnosed with it, the only way to do that is by having the surgery. I never did, but they treated it by having me on low birth control, 6 months at a time so I wouldn't have my period and not so much tissue would grow in places it shouldn't. It's helped a lot, but it has not made it disappear. But it had been a long road until I had it somewhat controlled. I had to try a ton of different birth controls before I found one that really helped. You will need patience and don't let any doc tell you that they are all the same! I switched gynos 5 times (!) before I found my current doc that was willing to try and try again with me. Then I got diagnosed with Crohn's just this past summer and it's been a roller coaster for me. All my docs, general/GI/naturopath agree that I shouldn't have a period while on a flare. SO it's been about a year. Now, we've done a lot of reading and research, especially in the gynocology department...and we are wondering if I really do have Endo or, and all docs say this is posible, this has always been related and a symptom of Crohn's?! I just found a new and wonderful gynecologist, because I had a lesion that just appeared (most my symptoms unfortunately are in the private areas :-( ). He insisted that I come back and see him, ones this lesion issue clears up, and said that is very possible that what until now has been assumed to be Endo, may be a Crohn's thing actually. But he also did say, it is not impossible that it is Endometriosis after all. So anyhow, I thought it might help you to hear this. If it is Endo, they will have to do the surgery to diagnose it as such. Hope you get better