One year with VV/ Where my pain is now

Hi all,

My name is Mars and I was diagnosed with VV/IC/and Pelvic Floor Dysfunction about a year ago... I've been living with the symptoms for about 18 months... but I'm glad to say that my pain has gotten A LOT better. I hope this story gives some of you some comfort...

About 18 months ago, I contracted a UTI that wouldn't go away. My primary doctor gave me 3 rounds of antibiotics... they made me feel sick and even though my cultures would turn up negative after, my body didn't really feel the same. The pain started in my left pelvic area, kind of by my waist... I wasn't sure what it was and when I would go to my doctor, she didn't really know how to deal with it... I noticed that the pain was worst after eating food or drinking (anything). At one point, I felt pain following a drink of water, and the pain actually followed where the water was going. Weird. Anyways, my doc finally referred me to a urologist and it was there that I got my trio of diagnoses. At that time, I had provoked VV... so I didn't notice the pain unless there was contact. But a month later, I started feeling a burning/stinging sensation down there and I thought I had UTIs again... the cultures were always negative, and thank God my uro didn't prescribe antibiotics until she received the results of the cultures. The pain was worse after eating anything acidic...stress... sitting for long periods (which is tough bc i'm a student)...any kind of sexual activity (even just being aroused)... tight clothes... and before/during my period. I would say that in the beginning, i would be in pain for 75% of the day... everyday....the worst being a level 9/10... the best being a 4...

I started treatment in November; first, a topical cream called traumeel that helped with inflammation and pain. A few weeks after traumeel, i started on vaginal valium suppositories. These changed everything. They targeted my highly tight and wound up muscles down there. I was a little bit apprehensive about the valium, but it gave me such relief and i found my pain decreasing significantly. At the end of december, I started pelvic floor physical therapy... basically, imagine a clam tightly shut... that was my hoohaa... the pt helped me to relax and re-train my muscles so that i could relax them when i felt them tightening up. my muscles and tissues started improving... they weren't overly tight all the time, so the quality of the tissue got better and i think that helped with the pain. When i wasn't with my pt, i was using dilators at home, to help stretch and exercise the muscles... i also worked out my core muscles (everything is connected, ya know?) at pt and at home.

I completed my pt in about 4 months (10 sessions?)... and right around the same time, my uro decreased my valium from every night to every other night... a month later, she decreased it again to every 2 nights... and now, i only use them as needed...maybe once a week. At one point, i was getting trigger point injections of traumeel... these were really painful (for about 5 seconds) but they definitely brought relief... my insurance stopped covering them though, so i haven't had them done in a while.

Physically, i feel much better... i go days without having a flare... and the worst is still what i described above (stress, period, sitting)... but i've been able to manage the pain and my own reactions to it. I'm not sure if i will ever be 100% but i would say i am at about 85% and very thankful... Mentally, it was super difficult and I lost my sense of self, self-esteem.... self-confidence in my body (this issue deserves it's own post)... but i am slowly starting to find healing and beauty again. I gained a lot of weight throughout this whole ordeal, but I recently made it a goal to lose it... i didn't want to punish my body... i wanted to nurture it back to health... so i started yoga about 8 months ago, and not only has it helped me become stronger and leaner, it has also helped me manage my stress and anxiety. i HIGHLY recommend doing a gentle, restorative yoga to help with VV.

So here I am, about a year since I was diagnosed... I have come a long way with my body... first HATING IT... then learning about it.... soon understanding it... and now, appreciating it (it's not perfect, but it's mine!). I know that the treatments I mentioned above may not work for everyone... but i'm hopeful that there will be something out there to give you relief... I think the number one thing is finding it in yourself not to hate your body... being able to make peace with the pain... and being able to find a way to manage your life with VV... each day, i try not to envy other people who have normal hoohaas... i try not to be angry at my body when i'm in pain... and i try not to bring myself down...

I hope this post helps... feel free to message me or ask questions... take care everybody <3

mars

Hi Mars

Thanks for sharing your story - its great to hear some good news!

I totally agree with you about doing gentle yoga. I have found it really helpful in getting my pain down and it makes me feel better overall, as if my body is getting stronger and therefore better able to help heal itself. And like you, making friends with my body again just makes me feel happier.

Hope your progress continues.
x

Thanks, Loulou. Wishing u all the best