Everyone with IC is a little bit different. Our symptoms vary a little and we also each have our least favorite symptoms. I obviously do not enjoy things such as bladder spasms, frequency or acidic feeling urine…but the stabbing pains in my vagina are by far my worst personal enemy. I get shooting nerve pain all throughout my vagina and also in my perineum and clitoris. I also get a raw feeling and feel pelvic floor spasms. I can’t wear jeans, I can’t have much of anything that resembles a normal sex life and probably the most inconvenient thing is that I get shooting pains if I stand still or if I sit in any type of normal chair for more than two hours max even on my best day. I get shooting pain that feels like an electric knife along with pelvic floor spasms and wind up having to lay down for several hours with heating pads or ice and pain medicine to calm this pain.
This issue impacts my life in very negative ways on a daily basis. It’s caused by a combination of pelvic floor spasms as well as some inflammation of the pudendal nerve. I am a two time failed graduate of physical therapy of the pelvic floor. I take some nerve pain medication and some other things that help lower my symptoms some at times, but nothing has really ever helped this issue in a satisfactory way.
I had been wanting trigger point injections for about a year. That’s when I first really did research on them and really thought they could help me and my particular symptoms. My doctors weren’t against them, but one of my doctors only had someone on staff who specialized in doing them in the back. Plenty of people with other types of illnesses get trigger point injections in their backs, faces, arms etc. But I need them in a more sensitive spot. I need them in my pelvic floor and vagina. Yes, it has gotten to the point where I am so desperate for relief that I go around begging doctors to put a needle in my vagina. Only someone who suffers from a chronic pain illness would understand why I would want something so cringe worthy done in hopes of relief.
Two local friends of mine were getting trigger point injections across the city. One of the friends introduced me to her NP. I asked my doctor if it was okay to go see this woman to get injections and he said yes. He said he knew her and the practice and they are very good at it and if I were going to let anyone put a needle to my vagina it may as well be them.
A few appointments in my “dream” came true. It was time for trigger point injections. I was so excited because I was desperate for relief. But at the same time nerves started to kick in. It hurts to get a needle in your arm and I was about to let someone stick me with needles in the most sensitive part of my body. But I did it. I got 5 injections in the pelvic floor and four in my vaginal glands (kind of like the opening of the vagina). I know you are probably cringing at the thought. I won’t lie. The pelvic floor injections hurt like hell. The vaginal gland injections on the other hand, there are no words in the dictionary for how much they hurt. I felt like I wanted to bite down on a leather strap. It’s the most painful thing I have ever had done to me.
But then it was over. You start to feel some improvement that day from your conditions, but you still don’t usually feel well because you have pain at the injection sites and sometimes some temporary bleeding. I was ordered to bed rest for the day with the use of vaginal valium, but the next day I was allowed to resume whatever I wanted.
I woke up the next day and for the first time in almost five years, my vaginal pain was not the first thing on my mind. It felt like someone put foggy glasses on my eyes the last five years and finally took them off. The vaginal pain was 90% gone. I was in heaven. It is so less stressful on the body to not have that constant pain dragging you down. It doesn’t change the bladder symptoms, but it changed what bothered me the most.
I had three days of pure bliss and then my vaginal pain started to return. But that is normal. The injections are only short lasting especially in the beginning. But when you suffer every day, you are thankful as hell for those three days of freedom.
Newer trigger point injection patients are supposed to go once every two weeks. If it gets to the point where relief lasts longer, then you can stretch your appoints out to once a month and so fourth.
My second attempt at trigger point injections was not as blissful. I had a really bad vaginal infection which had been bothering me before the appointment and was officially found at the appointment. So not only did I have the infection working against me, but the medicine I have to take to get rid of the common infection gives me horrid side effects. Then on top of all of that it was my time of the month. So I really didn’t get any days of bliss from my second set. But I am glad I still did them to keep the two week cycle on track. I have actually been in tons of pain ever since the infection and even though it is gone I have never really gotten my groove back.
I am really excited for my third set. I am praying for those few days of relief like the first time and I have no doubt that I will get at least one or two. Like any other IC and pelvic pain treatment, it is not for everyone. Some people won’t respond as well as I did to them. Some people may only get a few days relief at a time every single time. Then others (which is what I am hoping and praying for myself) will eventually get longer lasting relief and feel decent for a week or two at a time. There are even people who after a year or more of treatments have gone into remission. I try not to get ahead of myself. I know everyone is different. But at least I have a glimmer of hope where as before these treatments I didn’t.
These injections are hard work and no picnic. They take time, money and dedication. You also need to follow other steps the doctor gives you and stay on all of your current IC meds. There may be some point down the line where maybe you can cut back on meds if you keep succeeding with injections, but don’t think you are gonna get one set and be able to drop all of your meds and solve everything because it doesn’t work like that.
So for now I take it one session at a time. Suffering through the injection day and praying for and enjoying a few days of relief after the injection day before I return to my world of hell like pain. I am happy to have some relief and some hope.
And yes, I realize I am one of the only people on this earth who would volunteer to have someone take needles and poke them in the genitals ; ) The things we do for IC and pelvic pain relief.
Filed in: chronic pain • ic • interstitial cystitis • invisible pain • pain treatment • pain with sitting • pelvic floor dysfunction • pelvic pain • pfd • sharp pelvic pain • spoonie • treatment • vulvar pain • vulvar vestibulitis • vulvodynia • women in pain • women with ic • women's health