newbie-scared in need of advice

[Butterfly]

Hi there. I'm so thankful to have found this forum. My story :

2009-developed bladder spasms and pelvi floor pain. Self referred to a PT and was told by her I also had SIJD. All symptoms resolved after 5 months PT. 3/2011 developed coccyx pain when sitting. Returned to same PT who treated coccyx pain and SIJD for 5 months. Coccyx pain resolved but I could not sit for more than 3-4 hrs a day without uncomfortable felling of pelvic floor toghtness/pain so I limited sitting hoping it would go away over time. PT acted as if I was exaggerating my discomfort.

2/2012-SIJD flare up and I returned to the same PT. She corrected the SIJD and SI is now stable. I told her of the pelvic floor tightness so she began doin internal work like she had done before. End of March I began having unbearable pain in the perineal area with sitting. I told her and she said I was "flared up". she continued to work on me weekly in the hopes of things improving. When things did not improve I went to my internist and expressed my concerns. She prescribed Ativan and said it was anxiety.

Went back to my PT who had me try an internal STIM unit and external icing. pain got better for a few days then got worse. She then had me try internal icing-vaginal. got a lot of improvement for 4 days but on the 5th day had a huge surge of pain after icing that has not gone away. I saw a pain management doctor the next day, last Thurs, and was started on 600mg ibuprofen 3x a day and Cymbalta. I am supposed to start Lyrica this week.

Went back to my PT on Fri and she got me in with a GYN that same day. I am to hav an MRI Wed and consult re: PN block next week with an interventional GYN. I have been unable to sit at all since Saturday and am unable to go to work due to the pain. no one has told me I have PN but my PT feels my PN is irritated and I'm trying to educate myself. sat and Sun nights I took toredol which just knocked me out. Any support you can offer is appreciated.

[helenlegs 11]

Welcome Butterfly,

You seem to have got a good way under your own steam so far, well done for that. The up and coming block will probably be key for you. Do you know if it will be guided?
The cymbalta (I take that) will take a little while to take effect, but I hope it starts to work for you soon. Lyrica is usually a good combination with it for nerve pain.It's all a bit of an experiment with doses and combinations, if you think anything is having a good effect, although you have to weigh that positive effect against any negative side effects (sometimes none) obviously stay with it/them.
A note of caution tho', if any medication doesn't seem to help much my advise would be to stop taking it rather than just go along with Dr's advice, only because the with drawl effects can sometimes be rather difficult later on.
Because your symptoms seem to have been gradual, rather than sudden after some trauma, it may be that the conservative treatments you have mentioned will work for you. I do hope so.
Gradually introducing sitting has been known to work too. In the mean time there are some cushions that may help (home pages) but that is a bit of trial and error unfortunately (found nothing that worked that well personally) There is a huge amount of info on the Home pages in general.
Good luck and let us know how the block goes.
Take care,
Helen

[Butterfly]

Thanks Helen. Great advice! The blocks they do here are guided but I don't know much more than that. Will keep you posted

[Violet M]

Hello Butterfly and welcome to the forum.

Sounds like you have done your homework on all of this. Just wanted to mention that you may want to go to the MRI/MRN section of this forum and read about the Dr. Hollis Potter MRI in this thread. http://www.pudendalhope.info/forum/view ... =69&t=2490 I don't know where you are having your MRI done but thought you might ask about having it done to Dr. Potter's specifications as she has a reputation for getting the clearest images for PN patients.

Good luck and let us know how it goes for you.

Violet M

[Butterfly]

thanks Violet!

Helen, I got a donut cushion and it allows me to sit for short periods and short car rides.
Thanks for the advice!

here is an update- MRI was a regular MRI to rule out other possible causes of pain and it came back negative.

I had to stop the Cymbalta a week ago due to it causing my heart to race and started Lyrica the next day so I have been on that a week. Went and saw a new GYN 2 days ago. Thought it was to discuss a PN block but he said he knew nothing about those and was not familiar with PN. Said that since I only biked for 2 years I likely do not have PN!

He did a "Q-tip" exam and diagnosed me with vulvodynia. I explained I also have rectal pain and he suggested I see a GI doctor which I plan on doing. he recommended Elavil instead of Lyrica and I'm meeting with my pain management doctor today about that. The GYN said he would not see me again as he has nothing else to offer.

I'm still concerned that I have more than vulvodynia and today read an article by Dr. Marvel about how he distinguishes between the 2. I have 2 of the factors that he considers would indicate vulvodynia caused by PN or PNE: 32 years of horseback riding and current inability to sit. He also does a pin prick test in addition to the Q-tip test which my GYN did not do.

So where to go from here? With either diagnosis the options are lifestyle modification and medication management as well as PT. I do not feel a nerve block or surgery is something I would try right now based on what I have read about nerve blocks and the fact that the only things I cannot do are sitting and sex. however, with a PN diagnosis I would look I to going to the Cornwall clinic if medication does not allow me to sit.

[Violet M]

Butterfly, it sounds like you may know more about PN than your local doctors and that you are meeting up with the same problems many of us have in trying to find a knowledgeable local doc. At least your PT was able to help you with a diagnosis.

Good luck with trying a conservative approach. If you just have some nerve irritation maybe you will be able to calm things down via lifestyle changes although "not sitting" can get old pretty fast. The contact info for Dr. Kirk Andrew is in the list of docs under Canada.

Take care,

Violet

[Butterfly]

Thanks Violet. It is through this website and the National Vulvodynia Association's site (which has some great newsletter articles on PN) that I have been able to educate myself and am truly grateful for the info that you and others who are farther along in their journey are willing to share! Without it I would be lost and feeling helpless.

I just read another article by Dr. Daneshfar in Amarillo, TX who recommends a diagnostic PN block for vulvodynia patients who have pain in the vulva, distal vagina, and rectum to see if PN is their true diagnosis. That describes me in a nutshell!

I do have another local doc who trained at Johns Hopkins and does PN blocks but she is on maternity leave. My pain management doc is referring me to meet with her when she gets back. It will be interesting to see what she says.I plan on taking the articles by Marvel and Daneshfar with me. It would be nice to get a diagnosis I am confident with in case things worsen over time. I have contacted Dr. Andrew so I have that resource if needed in the future.

Thanks again for all the work you do to help others!

[Violet M]

Butterfly, if you have links to those NVA articles and Dr. Marvel's article, and if it's not too hard for you to post the links here I would be interested in reading them. Hopefully your local doc will not be out too long so you can try the PN block and get your diagnosis figured out.

Best,

Violet

[Butterfly]

hi Violet,
The articles are from back issues of the NVA's newsletter which are available to NVA members -I paid $65 to join and gain access. They ask that the newsletters/articles not be distributed for public access as I guess that is how they generate funds to keep their organization going, so I will respect that request. I highly recommend NVA for anyone with vulvodynia as they have a ton of info in their newsletters written by top physicians and other medical professionals.

Here is the link to view the topics in their newsletters and purchase individual newsletters if one does not wish to join:

https://www.nva.org/order_newsletters.htm

(edited to add the above link)

[Violet M]

Thanks for the info, Butterfly.