Hi there. Sorry I went MIA again. For the past three weeks I’ve been wrestling with a sitting issue. Sitting hurts. Sitting flares me. My PT and I have decided the only way I’m going to ultimately get to pain-freedom is if I can solve my sitting dilemma. Ideally, I shouldn’t sit at all. Practically speaking, I’m a writer, and have a hard time writing while standing. I get fidgety and have a hard time focusing. But, I’m working on learning to write while standing and also finding a cushion that keeps my painful parts suspended while I sit. I’ll keep you posted on that adventure. In the meantime, I have decided to sit up in bed or lie back on the sofa while I work. It’s not a perfect solution as it still puts some pressure on my painful areas, but to lessen the damage from that pressure I’ve purchased a gigantic gel icepack to place under my bum (It’s made for folks to drape over their aching backs) and I also stick two of those cooling patches on my sit bones (the area of my left sit bone is where I have some of my most intense pain-that’s where a Barthonin’s abscess about the size of a golf ball was hiding out for nearly a year). I know these measures are not nearly as good as not sitting at all, but for now they’ll have to do. And actually, right now between the ice pack and the stick on cooling patches, I’m feeling pretty good, so I’m confident that these temporary measures will enable me to get back in the blog game and start posting regularly. I hope you didn’t give up on me! Please give me a shout out to let me know you’re still there—I sure did miss you!
Now, that that preamble is out of the way, it’s time to get into the details of how I got over the hump of that horrendous flare. I believe one of the main things that helped me bounce back was botox. I had my first injection July 14 into, among other muscles, my pubococcygeus and ischiococcygeus. My doctor likes to be conservative with botox because one of its side effects is incontinence that lasts the duration of the botox. So, in other words, if the botox lasts six months, a patient might be incontinent for six months. So, for that first injection I got only 100 ccs of the stuff. Pain-wise, that first round of injections was not bad. If you’ve ever had a trigger point injection, that’s what it felt like, only there wasn’t a numbing agent mixed in, so no immediate feeling of numbness.
I was a bit sore that day from the injection, but by the next day I felt like my usual self. Some patients do flare as a result of the injections, however. Typically, it takes two weeks for the botox to kick in. That is, for it to paralyze the muscles and force them out of their hypertonic (tight, spasming) state and back into a state with a normal tone. The thinking behind using botox to treat pelvic floor dysfunction is that the pain that is caused by the hypertonicity (tightness, spasming) of the pelvic floor muscles may ease up or stop altogether if the muscles are forced back into a state of normal tone and held that way for up to six months by the botox. So, in effect, the botox paralyzes the muscles into a state that is considered to be their normal state at rest. As a result, the botoxed muscles will get blood flow, nerves that are being compressed by the muscles will get a break, and possibly the muscles will remember that their normal state is a good state, and they might just decide to stay that way thus breaking the pain cycle. This is the best case scenario. Worse case scenario: the botox doesn’t work at all. Just like most forms of treatment for pelvic floor dysfunction, botox is no silver bullet.
It took me one solid month to notice a difference from the first round of injections. I woke up one day and noticed that the volume of my vaginal burning had gone down significantly. On Aug. 12, we decided another injection was in order. The thinking was even though I had benefited from the first injection, I could use another hit to get optimal relief from the treatment. The doc injected some of the same muscles over again, but she also injected a few that were much further back. Again it took about a month for the second round of injections to kick in. Now, my vaginal burning is gone. I self-treat regularly, so I felt first-hand how taut and tight my muscles were, like the proverbial "tight guitar strings." Now many of those muscles that were so tight and taut are now soft and squishy again.
Am I pain-free as a result of the botox injections? No, but I believe I’m one giant step closer to pain-freedom. My pain has always had three different headquarters: vaginal burning, urethral burning and also an intense burning/soreness on the left side of my vulva, at the bottom near my perineum and sit bone, which is where that cyst was buried for nearly a year. For the most part, my urethral burning is still doing its thing and so is the pain to the left. But, the good news is: now my PT and I can switch our focus from those previously tight pelvic floor muscles to the other areas. My PT says treatment for pelvic floor dysfunction is like peeling back an onion. Typically the first layer is to get the bowl of pelvic floor muscles to snap out of their hypertonic (tight, spasming) state. For some women, this is all it takes. But, I’m one of those “complicated” cases. So, now, even though my PT has always done external work on me, skin rolling and the like, she can do even more using the time that in the past she had focused on my tight muscles. Also, we're now turning our focus to the pain that exists to the left of my vulva and also my urethral burning.
Overall, I would say the botox treatment was a great success for me: I no longer have vaginal burning, which is fantastic! After three years of dealing with that particular symptom, it’s so wonderful for that area to feel normal again. Sometimes when I'm feeling frustrated about my urethral burning and the left sided pain I have, I take my mind to that area that was also on fire at one time. Registering the absence of that pain always gives me an encouraging boost! Plus, I feel like a general soreness that I also dealt with is now gone or lessened to the extent that I really don’t notice it anymore.
I had been thinking about trying botox for about a year before I actually did it. The reason I finally decided to go for it is that I have a doctor that I have complete faith and trust in. I think that is the number one issue to consider if you’re thinking about botox treatment. Also, I had reached a phase in my treatment when I realized that what I was doing—regular PT, self-treatment, taking pain meds, getting the occasional nerve block/trigger point injection—wasn’t enough. I felt like I needed to start adding more tools to my tool bag. Botox is just one of them. The injections are meant to last for about six months. I’m hoping by then my muscles will have decided it’s nice to be normal and chilled out, and will not tighten up again. But, if they do, I’ll just sick the botox on them all over again! Feel free to send any comments or questions!
Other topics I'll be covering in the coming days: a homeopathic treatment for urethral burning that works for me (part II in my How I Came Back from Flare Hell); PT Boot Camp (Part III), acupuncture (Part IV), R&R and setting new boundaries (Part V). Also, I'm going to write an entry that I am chomping at the bit to share: a major breakthrough I had this week in PT regarding my urethral burning! Plus, I'm having an interesting new nerve block on Friday, and I'll fill you in on that.
Thanks for reading, it’s good to be back in the saddle, even if it is covered with a giant icepack!
I found your post tonight and find it very comforting. I have been dealing with PFD for just under a year. Rectal pain is what I have been dealing with. I just today got a second opinion from a new gynecologist who thought botox might be helpful. He referred me to a Urologist who uses Botox but the office would not confirm whether he uses it for PFD. I have been in PT for 6 months with no major change in my pain level. I have also had 4 cortisone injections with no relief. Anyway, thanks for giving me some hope as it is something that has been in short supply lately. If this urologist is not using Botox for PFD would you be willing to share the name of your MD? I am from Chicago but very willing to travel.
Bless you, I hope you continue to get better somehow. Is there no way to remove this lump surgically? I understand how frustrating, irritating and uncomfortable all this has been for you and fully sympathise. I am glad that botox has provided considerable relief.
My daughter has been treated by Dr. Andrew Goldstein in DC. He finally decided it was time to try Botox injections. They seem to be helping. One paid by insurance, I changed jobs, and the new insurance say it is "experimental" treatment and won't pay. And will not pay for her to even see him. Frustrating, but I'm still glad I sucked it up and paid for the second treatment. Is anyone else running into insurance issues?I did my research and botox is listed in Journals, etc. as treatment.