Experience with Endometriosis, Adhesions, & abdominall surgery as they relate to IC?

[ericar]

I have been diagnosed with moderate-to-severe IC by cysto. I currently follow IC diet strict, take Elmiron and Amitriptyline, and resue installs weekly. I have also been diagnosed with signiciant PVD, for which I am in PT. I have trigger points everywhere (my PT says it feels like a bag of peas in my left abdomen), which I am now massaging daily as well. We don't know if the IC caused the PFD, or vice versa, but it is clear that they both must be treated in order to heal.

As my IC came on very suddenly, 8 months after my son was borm by cesarean, and 1-2 months after I stopped breastfeeding, I am seeking to better understand the relationship between IC and/or PFD and several other items. Does anyone who has been diagnosed by a physician with IC via cystoscopy have experience to know how, if at all, how your IC has been caused or affected by the following? :

1) Endometriosis (Mine is significant and has been noted in several areas, but significantly on the outside of the bladder).

And/or

2) Adhesions (I have scar tissue from 2 c-sections which was noted as significant during my last one, which was unfortunately before the IC diagnosis).

And/or

3) Nerve Damage (I don't know if this plays a role for me or not. I ask because I have had 2 laproscopies and 2 c-sections).

And/or

4)Hormones in a pre-menapausal patient (I am 33 and recently gave birth. I am interested to understand the relationship with hormone therapy. When on my period, the periods are more intense in abdominal, urethral, and back pain than previously, however, it is the ONLY time I don't have the constant burning with urination (prior to installs) and the maddening urgency (even with installs). The week before my period was especially bad for the IC symptoms.)

If you have experienced issues with 1 or more of the above, how did you alter your treatment and what were the results? Have you pursued surgery to "clean out" the adhersions and endometriosis, and do they play a role in causing PFD/IC? I understand that there is very little they can do about endometriosis on the outside of the bladder, so if you have a different experience please let me know. I would love to hear from you, especially if you experienced relief and/or remission as a result of treating the above.

Thanks,
Erica

[Sally939]

I have IC and a little bit of pelvic floor problems but do not have endo. I do have a friend that has endo and has had one surgery to treat the endo and a csection. She has not been told she has IC but come to find out she has some of the same problems with peeing as I do that only began after she had her first surgery a csections. She does not really have frequency but does have urgency and problems with going and has to push to pee. I do not know if endo can cause these problems or not. I think she might have ic but she thinks it is the adhesions from the csection.

[Sealionwoman]

Hi, Ericar. I just wanted to share a little of my experience with you. I will do my best to summarize.

A partial hysterectomy(to remove a large tumor-6 lbs!) at age 20 revealed one of the most severe cases my pelvic specialist had EVER seen. I had a second surgery 6 weeks later to remove the remaining ovary and the uterus. Prior to the surgery I suffered incredible pain that would sometimes send me into what I call an "episode". After the hysterectomy, I was a brand new person! Sure there was pain involved in the recovery, but I no longer would have episodes of overwhelming pain. In fact, I'd go as far to say that I felt virtually no pain most of the time.

My doctor was unable to remove all of the endo as it is attached to absolutely every major organ in my abdomen. For the first year or so I was on Depo-Provera shots, then oral meds of Premarin and Provera daily. Finally after 12 years I was placed on the hormone patch.

IBS was diagnosed about 5 years ago.

I experienced IC symptoms from childhood but only got the official diagnosis 2 1/2 years ago. I've tried several meds for it and now take: Zanaflex 2mg twice daily, UTA (anti-spasmodic) during flares, generic Ambien 5mg at bedtime (sleep aide), Prelief with some meals and on-again-off-again with Cysto-protek.

I'm now working on getting to a physical therapist for the official diagnosis of my pfd (currently my biggest nemeis!)

As you know, every individual is unique in regard to response to various treatments. In response to your question about doing surgery for the endo, I can only answer your questions in the context of "what would I do if I were you?"

I would have a real heart-to-heart with your gyno or pelvic specialist AND your uro if they're not the same person. More importantly, I would journal your symptoms and degree of pain for a length of time and evaluate for yourself how disruptive your disease(s) are to your quality of life. That might help you decide if the risk of surgery is worth the possiblity of any relief.

I wish you all the best in your journey to healing!

[ICNDonna]

My IC showed itself during the recovery period following a major abdominal surgery; I now call it the "abominable" hysterectomy.

Donna

[ericar]

Donna, it seems to be common for a lot of ladies that IC presents for the 1st time after an abdominal surgery. From reading, I understand that this might imply nerve damage, adhersions, or a variety of issues as the root cause of the bladder irritant. In this case, it makes sense to me that there should be a process to identify (even if by process of elimination) this root cause and correct it. Do you know of anyone who has had any luck finding the root cause and correcting the problem (versus long-term symptom treatment only)? Thanks!