Interstitial Cystitis, Fibromyalgia, Pelvic Congestion Oh My

**canoehead, BSN, RN** · Jun 14, 2009

Pelvic congestion? Is that like nasal congestion, but the other end? Didn't they used to call that "the drips" and treat with a shot of penicillin?

prowlingMA · Jun 14, 2009

I have had IC for years, but never any of the other issues you listed. I hadn't heard there was an increase of diagnosis.

PAERRN20 · Jun 14, 2009

Pelvic congestion syndrome? For real? I've never heard of this. Sounds like a "there's really nothing wrong with you" diagnosis. FWIW, I have seen more and more people with coexisting IC and fibromyalgia. Now pelvic congestion syndrome can be added to the list. :rolleyes:

morte, LPN, LVN · Jun 14, 2009

http://www.doctorslounge.com/gynecology/forums/backup/topic-13197.html

apparently been around well over a hundred years

lolasmomma2bLVN · Jun 14, 2009

I have had IC for over seven years. It is not something I would wish on my worst enemy. I know IC is associated with Pelvic Floor Dysfunction, but I have never heard of congestion.

jenniern2be · Jun 14, 2009

I have IC as well, but I have not had anything else associated with it.

mama_d, BSN, RN · Jun 15, 2009

No IC or fibromyalgia, or endometriosis.

But I had pelvic congestion syndrome to the point that I had to have a hysto because of it, so it does exist, it does cause debilitating pain, and it SUCKS.

Granted, mine was bad enough that my GYN was going to take photos from the surgery to a conference of some kind, she said it was the worst case she'd ever seen.

I was diagnosed with it after having my first child in '98. Diagnosis was via exploratory lap, b/c they weren't sure what exactly was wrong with me. I was told at that time that I'd need a hysto, but could wait out the pain if I wanted to until we were done having kids and wait and see if any other treatments developed. I got my hysto done six months ago after extensively researching the options and having tons more testing done. Testing included multiple pelvics, ultrasounds, and different medication regimes. Thankfully I got to skip the lap this time around since I still had my photos from my lap all those years ago; the rest were hurdles the insurance company made me jump through prior to having a hysto.

Basically, varicosities develop on the organs in the abdomen and pelvis. This causes a pooling of blood in areas of the venous system where it's not supposed to be at, which in turn causes pressure on these organs, which increases with the increased blood flow during menses. I had incredibly painful periods, and constant pelvic, abdominal, and back pain. I was routinely taking Ibuprofen 800-1000 mg qid with Aleve 500 mg tid in between. It's a wonder I didn't end up with a GI bleed.

The worst though was that sex hurt. It felt like someone was stabbing a knife up through my cervix and into my sternum. EVERY TIME, every position. Then I would ache for days afterwards. My GYN suspected that I also have a somewhat faulty nervous system which responded to the constant pain signals by becoming hypersensitive. God bless my husband for being patient with me for all of those years.

I wish I had a way to post my pics from my surgery on here. Even though I was in a 45 degree angle, head down, to minimize bleeding issues, the veins on my uterus and surrounding my tubes were clearly visible...they should not be, in general, even when standing upright.

My pain on a daily basis, when off of work and with no sex recently, was around a four, even with all of the NSAIDs I was taking. If I had sex before my shifts and worked a couple in a row, by the end I was at an 8-10. And this is coming from someone who has experienced labor. It was not unusual for me to hide out in the med room or bathroom for a crying break while I waited for the NSAIDs to kick in. Narcs were not really an option for me b/c I wouldn't be able to work while on them, but I did take the ocassional Vicodin or Percocet on my off days.

I'm now uterus free and mostly pain free, although I do still get twinges every once in a while it's nowhere near as bad as it used to be, around a 2-3. And I no longer need to take NSAIDs constantly. After my hysto, I was amazed at how empty my abdomen felt, just to be pain free...after living with it for so long, it felt weird not to have it there!

Cherybaby · Jun 16, 2009

I have IC. It's like walking around with a permanent urinary tract infection...times ten! It's horrible. I have been on Elmiron for awhile...but eventually, it stopped working. I started on a therapy of NO caffeine, no alcohol, no spicy foods and eventually, the symptoms lessened. Never went away, but are substantially better. Never had any of those other problems. However, it seems like IC is the new way of obtaining pain meds...when in actuality, they really don't help IC at all. For some reason, a lot of PCP's aren't well versed in the tx of IC.

Uristat is a God send! :)

psalm63 · Dec 3, 2010

I have Pelvic Congestion and Fibromyalgia....how have you been doing since you wrote this post?

Suzanne

mmutk, BSN, RN, EMT-I · Dec 4, 2010

I suppose these are becoming diseases where there are actual patients who need treatment and those who claim to have the disease without actual diagnosis. This becomes a somatoform disorder for the latter group.

IC and pelvic floor dysfunction are the new kids on the block. Other diseases patients commonly complain of but don't actually have are Lupus and Chronic Pain Syndrome for example.

(Fibromyalgia does not fit into any of these categories because it is BS in my opinion and noone actually has it.)