I don't even know where to start explaining what I have been through... but I think those of you on here have a better understanding than almost anyone else I talk to. I am a 31 year old female, and feel healthy in every way except for whatever is going on with me.
I haven't been diagnosed with Crohn's yet- although it is on the table- my doc looked me in the eye recently and said he had no idea what is wrong with me. I used to be a vibrant happy person, and an athlete before all this happened, now I feel mostly like lying on the couch and can burst into tears for no reason.
My brief history - 3 1/2 years ago I developed horrendous pain- at the time I couldn't tell if it it was rectal or vaginal- a few weeks after a very violent stomach virus. Long story short, 14 doctors later, multiple possible diagnoses that never were confirmed, I had a "chronic rectal abscess" drained surgically earlier this year. I've had CT scans, MRIs, three sigmoidoscopys, one colonoscopy, and three and 1/2 years of rectal and vaginal exams, trials of antibiotics and other medications and anti-inflammatories. I've had three surgical procedures just this year to try to figure out what exactly is going on in there... I don't even feel like my body is my own anymore, like it has betrayed me. My abscess never showed up on any imaging, until a rectal ultrasound earlier this year. I had another MRI before my surgery, and the abscess didn't show up on that either, and they knew exactly where to look from the ultrasound...
I felt better for a few weeks after the surgery, other than the new fissures from the trauma of the surgery, but also I kept asking about a 3 inch or so "bump or ridge" along my sphinctor muscle. He thinks this is muscle, which is responding to the chronic inflammation... but to me it "feels" just like the abscess did. I am scheduled for my 3rd MRI and he put me on cipro and flagyl, as he says he is at a loss to explain what is going on with my body. I never ran a fever, even though that abscess sat undiagnosed inside me for years. For a while, I think my docs thought I was a bit crazy, thank God they found the abscess... they had to believe me then.
My daily symptoms are pain that I feel to the back of my vagina and in my rectal wall- constant pain and pressure both rectally and vaginally, pus drainage from my rectum... I'm also hurting again in the area of the previously drained abscess. I'm just feeling so hopeless and disheartened. I feel like they may never figure me out and this could be the rest of my life.
I'm married, and my husband has been an amazing support for me through this. We have had no sex life in the last 3 years, although tried twice recently after I was healed from my second surgery this year. I was feeling so good for a few weeks, then after they went in surgically again to address the rectal swelling/bump, I have felt horrible ever since. We don't have children yet, kind of hard when you can't have sex, and I want to try to get this under control before even thinking about getting pregnant.
Has anyone out there gone through something that sounds like this, or do you have any words of wisdom for me? I've got good friends, good support, but just going through that cycle of grief, and stuck in sadness...
Thanks in advance.