Looking for information about Crohn's and endometriosis.

[nitty]

Hi!

I'm looking for any advice or experience from anyone who has endometriosis as I'm wondering if I may have it. I am aware of a connection between endometriosis and CD, and the difficulties of the two conditions sometimes being mistaken for each other.

I was diagnosed with CD just over two years ago after experiencing fairly rapid onset of rectal bleeding and diarrhoea. It was diagnosed after a colonoscopy which showed separated patches of inflammation in at least three areas of the colon. It has been well controlled for over a year now, with Mezavant and azathioprine.

Over the last 18 months or so my periods (still regular) have changed (from a few light days to 2/3 heavier ones), but so far I had put this down to my age and heading towards the menopause years. My doctor agreed when I mentioned this about a year ago. However, I have also developed an increasing level of right-sided back/pelvic pain which can also radiate down my right leg when it gets bad, I have recently had an MRI to check out my sacroiliac joints, which appear to be OK.

The pain is generally only mild, but then when I get my period it has got worse each month, to the point where I spent last weekend crying and shaking and unable to do anything for 24 hours. My husband thought I could have appendicitis or an obstruction, it was so bad, and it was only his medical experience that stopped us going to A&E. Only Tramadol and hot packs were able to help. As soon as the main period flow stops, so does the pain. There is no change in my bowel habits, so I don't think it is CD related.

I just wondered if this is familiar to anyone, or if anyone knows anything about these type of symptoms.

Is there any chance my CD could have been misdiagnosed and that other symptoms are coming to the fore which could change that? Could I have endometriosis as well as CD (oh joy!!)? Could it be something else that I haven't thought of (I'm open to any suggestions)? Is this just a flaming awful sign of the menopause?

I have an appointment to see my GP next week, but in the meantime I'm trying to find out as much as I can.

I'm living in dread of my next period in case it is worse again than the last one :frown:

 

[lizbeth]

Hello.

I'm sorry I can't help you buy in very interested in what replies you receive as you have described exactly how I feel.

I recently spent a night in casualty in excruciating pain only to be told the Dr didn't think I was having a flare cos I had no diarrhoea and quizzed me about endometriosis, though he didn't look into it any further, he said that a planned mri I was having to check my small bowel would also tell if there was any endometriosis. I have had very similar pain like you described were I couldn't move it was so bad, then it settled after the first couple of period days, I've also had scans to check my si joints which are fine (apparently but try telling that to my joints! Lol). Oh and I'm having the menopause too at the age of 44, yay lucky me!

I hope you get some useful replies that will help you find some relief at that time of the month, good luck.

 

[nitty]

Thanks lizbeth,

That's really interesting that you sound so similar in your experiences, and that your doctor mentioned endometriosis, too. I'm a similar age to you (43) and, although it's still quite early for the menopause, my Mum had an early menopause and my sister is starting hers at the age of 45. I'm not sure what diagnosis I would prefer if I had the choice!!

If it's OK with you, I'd be really interested to hear what your MRI shows.

I will let you know what happens when I see the GP on Tuesday, and hopefully it can help two of us at the same time:thumleft:

 

[CrohnsChicago]

I know SaraBear has done a little research on endometriosis. Maybe she can help shed a little light on your query?

 

[SarahBear]

Thanks for the tag, Chicago!

It does sound like you could have endometriosis. It has not been confirmed that I have it - unless the condition is severe enough to show up on a CT scan / MRI, surgery has to be done to definitively diagnose. However, my GYN is proceeding as if I do have it and we're attempting to control the symptoms with birth control. Are you on any sort of birth control? Were you previously?

I have made an Endometriosis Overview thread, which you can find here.

 

[nitty]

Thanks for all the info.

I saw my GP and then had an ultrasound scan two days ago. Although the radiographer was not officially meant to let me know what she saw, she did let me know that there is an endometrial polyp and two small fibroids there. From what I have read up since, the polyp could explain the change in period flow, but not necessarily the pain. The lady said that the position of the fibroids would not explain heavier bleeding, but again my research suggests that even small fibroids can cause considerable pain depending on their location.

So I need to wait for a gynae referral to discuss whether both of these things are causing the problem. The bleeding itself is not a problem as it really isn't that heavy, just different. It's the pain that I'm fed up with.

I think that they remove polyps anyway, as there is a small risk of them becoming cancerous, and perhaps if they do that and the pain persists then they may have to tackle the fibroids.

Hopefully it won't be too long before I get some answers from the doctors.

Thanks again,

Nitty

 

[Kero]

I was diagnosed with endo back in Jan 2000. I only had a few spots of it when I has a laparoscopy done the first time, and has some actual adhesions the second time. Your periods sound like mine were. By the time that I had my hysterectomy in Jan 2011, when I had my period I was completely disabled. My cramps were so bad that 2 Tylenol 4 and a torodol would take the edge off. I feel for you, I know what the bad cramps are like Hope you get answers sooner than later.

 

[nitty]

Thanks Kero,

I've had an ultrasound which showed a possible small polyp and two tiny fibroids, so it's possible these are causing the problem. At the moment, as they are so small, I'm on a watch and wait plan, and if it happens again or things get worse they may investigate further.