Hello ALL,

I just want to share some hope. I am at 21 months treatment, and though I am nowhere near the healing I thought I would be by now, I feel hope that I am getting better. I think for me the struggle has been thinking I should be healed by now, and worrying that if I am not, that I never will be. However that just isn't true because some things have healed and subsided. So I want to publicly reality check and share some hope and tools that have kept me sane and even happy:

When I began treatment sx were: Bladder pain level 3-9, bad pelvic pain, mostly 4-5, migraines 2x per month-crippling awful ones, fatigue, bloating, gas pain, constipation, IBS symptoms and generally weird body pains.During treatment bladder pain decreased and for awhile I had terrible vulvadynia, which passed. IBS got worse, then subsided.

21 months: Bladder pain levels 0-6, mostly 2-3, except during ovulation which is absolutely awful, some swelling and pelvic pain related to menstrual cycle. I am still on list 3, but removed dairy, grain and most fruit in order to improve healing, which has helped. 

My main issue that complicates my healing process is that I have adenomyosis (uterine cysts, abnormal tissue and swelling) and ovarian cysts on left side. This calmed down for a while but got triggered this month's cycle because I had an edo/colonoscopy-it was all normal! So the IBS issues have mostly resolved.

So I am healing, but not in a "typical" way, on the fast track, which is what all of us would prefer. So if you are struggling with wanting to be at a different place in healing, just try to remember that he comparisons are really stress-inducing. They trigger fear that we are not healing, doing something wrong, or even undeserving perhaps. The truth is, everyone's timeline is different. At first, I committed to 2 years, then I realized it may take me 3, now I realize it could take me 5 years. The startling realization is that this cannot be "controlled" according to my preferences. The only empowerment I have is to surrender to the process of healing. I CAN stick to the diet, which I do. I CAN take the herbs as prescribed, which I do. I CAN exercise within my comfort zone-which has evolved. At first it was a gentle 30 minute stroll, and that was so difficult at times. Now I can take an hour vigorous walk every day, without much discomfort. I still cannot have penetration with my fiance, but I have gotten a lot of acceptance around that and we have our intimate time. If I cannot tolerate oral sex I pleasure him and enjoy that.

I think all of us at some point in treatment, especially if its taking a while, have to grieve our old bodies, lives, expectations of ourselves. The biggest tool for me has been refocusing on empowerment. Some days are harder than others, and I just want to complain, and feel deprived and angry, and that is okay. It is very important for us to process our feelings in a safe way. However after that, I try to refocus on what I can do for myself, what I have learned and what I can enjoy. For instance, I love the farmer's market, but I have a pretty strict diet-so I buy delicious fruit and yummies for my family, and for me I get to have dahlias, my favorite flower. When they are eating peaches and plums I am staring at my flowers, feasting my eyes. 

Today I am 21 months in, and the left side of my pelvis feels swollen. My bladder is pretty good, at 1 right now. At this moment I feel compelled to say that its all worth it. I have learned so much from this journey. Facing this has brought me to places of darkness, but also enlightenment and spiritual growth. It has also given me unexpected gifts. Would I like a shot that would make it all go away instantly? Sure. But we know that is not an option, and our best bet is to stay the course. So if you're suffering, just know that you are heard, you are not alone, and it will get better eventually. Much love and healing to you.