Here I am - burning (sub)clitoral pain - getting better!

[ElleGG9]

Hello everyone, unfortunately I am also writing here. I am facing huge problems since beginning of this year. It all started when cleaning myself after urinating and had a stabbing pain between the labia minora and the clitoris (more on the right side, but pretty in the middle). The pain increased (burning and stabbing, when touching the zone it goes up but it's anyway continuous - it's quite located in this zone) and within one month it was up to 6-7 and I struggled even walking and I cannot sit longer than 10-15 minutes. I have then had some US-guided PN blocks on both sides at a pain management clinic, 2 ganglion impar blocks, a sacral block (covering S1-S5), an epidural at L-Level (I am not sure exactly where) and one week ago again a bilateral unguided pudendal nerve block at Prof. Possover's place. All blocks were unsuccessful and the latest one is giving me a big flare-up (I had it one week ago and hope it will decrease...). When I lie down the pain is tolerable (between 3-6), but as soon as I start walking, it goes up to 6-8. All doctors agree that it's not PN and not even related to pudendal or sacral nerves. They all recommend a trial with spinal cord stimulation. Does anyone have some experience? I forgot to say that I had some relief by taking cortisone pills during one month (but cortisone cannot be taken continuosly) and am now on lyrica and cymbalta (probably at too low doses since i don't have any relief). I tryed morphine, ketamine and lidocaine infusions also without relief. And finally I had pelvic MRI, spinal MRI and brain MRI without findings. Thank you for reading and replying.

[stephanies]

Hi Elle,

It sounds like you have been through a lot this year and haven’t had any luck in narrowing down the source of your pain. Possibly the flare from the most recent block is a clue it was administered in the right area, because it did change things for you, even if it’s worse right now. My concern with spinal cord stimulation is that because you really haven’t had a positive response to any injection, even briefly, how would the doctors make the stim effective when they don’t know what area to target? The injection in the lumbar spine, was that done at a certain level for a reason? Maybe a bulging disc? Also, if you have the opportunity to get another doctor to look at your MRIs, I have found that sometimes one will see something that the others don’t and maybe that will lead somewhere, especially the sacral MRI. A response to cortisone could indicate inflammation is a part of what’s going on.

Stephanies

[ElleGG9]

Hello Stephanies,
Thanks for your reply! Yes, indeed I have been through a lot.. I was also thinking about an inflammation, however I am not sure if cortisone just gave me psychologically a "high-phase". In any case I will discuss about this also with the doctors. For the moment they also didn't advise to carry out a tryal with spinal cord stimulation as they would wait another while and check also the functionality of my complete nervous system first.
Maybe a quick update (because it can always help also other people) regarding the last pudendal block, I think it was indeed a flare-up, now I am feeling better luckily, it lasted around 1.5 week.
I am also doing mindfulness with a trainer already since a couple of months and he's helping me a lot at least from the motivational side, as well as coaching with a counselor who's also affected with chronic pain, and she's also helping a lot. At least now I'm able to go out from my house and do some activities, in spite of the pain. I think the psychological side plays a very important role in all this. In the sense that like every kind of pain, one can learn how to get along even if the pain is there.
So, that it from my side for the moment, I keep posted! Cheers, Elle

[ElleGG9]

Hello again, a quick update from my side: I started 4 weeks ago a new therapy called PTNS (percutaneous tibial nerve stimulation) and I am quite amazed but it's working! I already feel so much better. The doctors said that it's very likely a wrong signal to the brain and thanks this therapy helps resetting the signals correctly (it is used also in neuro-urology if one has incontinence). It's incredible, also because I really didn't believe much in this at the beginning. Apart of this I am still doing mindfulness and coaching and both also help a lot in terms of motivation, considering that until 3 months ago I was not going out of my house and since I started working on my psyche I was living a bit better in spite of the pain.
In any case the pain now after 4 weeks PTNS is between 1 and 3. Hope this helps others. Cheers, Elle