Endo and trigonitus

Hello, everyone,

I'm new to this message board. I wanted to share a little about my history and then I'm hoping someone out there can help me with some info or insight! I have had endo for 13 years, diagnosed and lasered then with a lap. I got pregnant and nursed shortly after the surgery and endo stayed away for several months afterward. Then the symptoms began again and have worsened gradually. I have just lived (I don't think that's what most people would say I've been doing!) with it since then, wanting to avoid any more laps and scar tissue forming from surgery, etc. I've taken bcp's a few different times and last year went back on one. It helped tremendously the first month and then gradually I've worsened again. Anyway, I've managed the endo pain over the years, but now I'm having some very major bladder difficulties, which I just cannot live with.

At the time of my lap 13 years ago I was having some UTI symptoms, even though cultures showed no infection, so my gyn had sent me to a urologist who did an cystoscopy and found trigonitus. He cauterized my bladder during my lap and my bladder symptoms were then gone...until the endo symptoms returned after nursing. The bladder symptoms have continued to worsen, yet I've been able to live with them, too. But I went last month for my gyn exam and since then my bladder has gone crazy. I went to a urologist and he said if it were trigonitus they don't cauterize it any more (because that can cause MORE irritation) and they would prescribe bladder control medicine, which he did -- Ditropan XL. It helped a little, but I called back and he upped it to 10 mg. Now my bladder is just feeling different, but certainly not better. My frustration is that I hear and read so many different things about trigonitus. He said it was inflammation, but I've read elsewhere and think my doctor 13 years ago had said it is inflamed, but that it also is an infection in that it's in like a pocket in the bladder and bacteria can sit there and not be "hit" by oral antibiotics. That's why I think he cauterized it.

This has been terribly long (Guess I needed to talk about this!) so please forgive me, but I'm wondering if any one on this board has had trigonitus and what you know about it and how they have treated it recently. My gyn doesn't want to go on to treat the endo until he knows the urologist has done everything he can for me. The urologist didn't want to do a cystoscopy yet. He said my symptoms (feeling like you have to go all the time and frequent urination) didn't merit one yet and that if it was even interstitial cystitis this is how he'd treat it. I'm 43 and was even beginning to consider a hysterectomy for the endo, but the gyn said that would be a last resort because it would most likely really aggravate my bladder. (But, of course, there's a good chance the bladder thing is only aggravated by the endo -- who knows?!)

Also, my gyn only does electro-cauterization for endo. I've done a lot of research but am very confused about the difference between this and laser and whether this will be as effective as laser. I've read a lot of pros and cons for excision with the laser and my gyn doesn't believe this method is good. Why does this have to be so confusing??!!!

Help, anyone? I'm feeling rather desperate.