Please Help:Would like to hear from those with bowel endometriosis

[Cookie]

If you have been diagnosed with bowel endo, I would love to hear a bit of your story. For the last 6 months I have experienced rectal bleeding (clots of blood along with my bowel movements) along with my period and it is getting progressively worse. My doctor believes I have bowel endo, but does not want to do anything about it for fear of exacerbating the Crohn's, which appears to be in remission. Fine with me, but my concern is what can happen if this goes untreated. Can it worsen to the point where surgery is the only option? Is this the normal course of action? just wondering if I should push for another opinion.
On a side note, I am 39 years old and have been trying to get pregnant for 5 years. I have undergone 3 months of fertility treatments including two artificial inseminations with no success. I also have a history of rectovaginal fistulas for which I have had two surgeries.
Any advice or information is apprectaited!

 

[Astra]

Hiya Cookie

All I know is that I had them on my uterus, bladder and bowel (where about I don't know) like barnacles on the bottom of a boat!
I was in so much pain every month with it, didn't know why tho. Even ovulating hurt.
The gynae surgeon removed the endos via laparoscopy and did a clean sweep. It worked for a while. I ended up with a hysterectomy, my choice, everything removed. Surgeon called it 'a car crash' in there!
But.. I still had pain in LRQ. Decided a different route, the gastro one, Crohn's was dx.
Long story short. ^
So, you need a specialist, a gynaecologist who specialises in this.
Endometriosis is where fragments of the endometrium (uterine lining) are found in other parts of the abdominal cavity, or on organs within it.
These displaced patches of the endometrium respond to the menstrual cycle as if they were inside the uterus and so bleed every month.
Because this blood can't escape, slowly growing cysts form and these can cause intense pain along with severe and abnormal internal bleeding. This in turn causes scarring, and where internal organs become joined together with scar tissue.
30% - 40% of sufferers are infertile, altho surgery can/may work for some.
So, yeah surgery is your best option, these won't go away on their own, if anything they will keep growing. And with it, the exacerbation of Crohn's
You'll have a better chance of getting pregnant if they are removed from the reproductive organs.
If you have a dx of Crohn's it's important to tell gynae about this, and vice versa, tell your gastro about the endos.
Two separate areas, two separate specialists, one corellation!
Please read 'Endometriosis can mimic Crohn's' in the ForumWiki
And good luck
xxx

 

[Cookie]

Thanks for the post Joan. I know from previous posts that you have dealt with this issue, so I appreciate the info you gained from your experience. I am debating if I should go for one more round of fertility treatment or if this is a waste of time and money. I know there are people with endo that do get pregnant, but I did not know the infertility rate was that high. Although I'm fairly certain that this is what's going on, it's never really be definitively determined, so i feel like I am in limbo. My fertility doc also said that getting pregnant will help with the endo, so that is another thing pushing me forward in that direction. (I don't mean for that to sound like I want to get pregnant to stop the pain, i desperately want a child...stopping the endo would be a bonus).

But, maybe a specialist is the way to go. I guess my biggest fear is that I will end up in a situation where there will have to be a decision about a hysterectomy and I will never have a child. I know this is highly unlikely (you said yours was by choice), I just can't get over that fear. I was hoping that all of these fertility treatments would do the trick, damn it!