Newbie Coming Out of Hiding Needing Lots Of Feedback

[Riva]

Hi Everyone,

First and most importantly, thank you all for so bravely sharing your stories. Even though it's taken me over a year to gather up the courage to post anything, please know that I've read many of your messages and they have helped me tremendously. I will try and keep me this as brief and concise as possible but long story short, like many of you, I am faced with a difficult decision and would so greatly appreciate your input/feedback/suggestions. With that said, here goes....
1. June 2015- had left ovary and tube removed due to complex cyst
2. July and August 2015-Had back to UTI's
3. August 2015-Had tear in labia requiring two treatments of silver nitrate
4. August 2015-Burning in clitoris and right labia began 24/7
5. September 2015-Saw gyno who said burning could be result of peri-menopause (age 49)- prescribed Estrogen
6. October 2015-Burning continues. Absolutely nothing helps. Sitting, wearing underwear and leggings causes flare. Laying on my side causes flare, I try warm baths, cold packs but they don't help. I am panicking. See Dr. Andrew Goldstein who says I have "Clitoral Atrophy" and PFD. Prescribes valium composite suppositories and a prescription topical cream (which burns and btw...doesn't help.) Says I will be better in 3 weeks and that I am lucky I don't have "PN".
7. October 2015-Burning continues. I am now truly going out of my mind. Regular Gyno prescribes Neurotin. Burning goes from 8 to 4. I want to cry with relief (everything is all relative....).
8. November 2015- April 2016- Weekly Pelvic Floor Therapy (Internal) -Doesn't hurt but no improvement noted. P/T asks if sex hurts. It doesn't and actually sometimes helps. She thinks it may be helping with my tight muscles....
9. December 2015-See Neurologist-Believes I have problem with nerve and increases my Neurotin.
10. February 2016-Neurologist switches me to Lyrica 300 mgs daily and 60 mgs of Cymbalta. I stop Valium composite suppositories. I now feel 65-70 % better although I still have flares (which are consistently inconsistent...ugh...and do not respond to anything other than patiently waiting for them to stop which can take 2-5 days and are scary.....thinking they will never stop....)
11.March 2016-Get MRI with Dr. Horris Potter. She notes ,"no scar entrapment of pudendal nerve but small pelvic floor varices surrounding the lower vagina and coursing with the dorsal nerves to the clitoris".
12. June 2016-Get Embolization with Dr. Sperling-Improvement increases to about 73% but flares continue. Dr. Sperling states my case is complex and says I need a Pudendal Nerve Specialist.
13. July/August -2016-My flares (which I still have and pain wise can shoot up to a 7-8) now not only include my vulvar area but also have moved to my inner thighs and tush. In addition, I feel like I have something "small" inside that area.
14. September-2016- See Dr. Carrillo. Does exam. Internals don't hurt but when he presses on points 3/4 in my vagina pain shoots to a 9. He says my muscles are very tight and is concerned with how my "burning" is moving from vulvar area to other areas. Dr. Carrillo recommends I continue P/T and resume vaginal Valium suppositories (regular not compound). He also strongly suggests I get a Pudendal nerve block with Dr. Westensson to rule in or out PN. He says the block could be both diagnostic and therapeutic.Dr. Carrillo said he needs the results of the block in order to know how to proceed. I make an appointment for November.

......So if you have read this far, thank you because this is where I need the input and feedback......So since my visit, I have been using the valium suppositories (have not been able to get an appt with my P/T) and the burning in my inner thighs and butt have decreased significantly. I can honestly say that for the most part, I feel 75-78 % better (gnerally up until about 4:00 p.m) . Not perfect but better!. (I am still on Lyrica 300 Mgs but only 30 mg of Cymbalta).

My question now is SHOULD I PROCEED WITH THE PUDENDAL NERVE BLOCK? I am so scared that since I am doing better, the block could hurt me and make things worse. Yet I am also afraid that if I don't do it, and have PN, my condition will get worse (dr. Carrilllo mentioned his concern about this when he noted how my burn was migrating to other areas). Also, my block is scheduled for early in the morning and that's when I feel great. If I already feel ok, how will I know if the block is working? (I tried to get appt changed to later time when my burning sort of begins but it wasn't available). Do I try and induce a flare? I am not even sure how I could 100% do that. I have heard about only getting the anesthetic part of the block and forgoing the steroid part. Will a doctor who has never met me be willing to discuss this prior to my visit? I am so confused.....I want to know if I have truly have PN...I want a plan but can't have a plan without the confirmation of the block.....I want to try the block but am scared if I do and scared if I don't. Ugh....I am so confused. Any input/feedback/suggestions would be soooooo gratefully appreciated!

Thank you for taking the time to read this. Prayers to all of you.

Warmly,

Riva

[Violet M]

Hi Riva,

Welcome to the forum. You might find an ariticle published by the Nantes team interesting. https://www.ncbi.nlm.nih.gov/pubmed/27465823
You could show this article to Dr. Carrillo or Dr. Westesson and see what they think.

I am kind of in the camp of "if it ain't broke, don't fix it" but only you can decide if your pain is severe enough that you want to do something about it. If you are satisfied with your quality of life now, then maybe it would be wise to wait and see how things go, especially since you don't even know for sure if you would be in enough pain for the nerve block to be diagnostic.

Does sitting aggravate your pain? If so, and you really want to go ahead with the nerve block, then maybe if you sit for awhile first, that might be a way to induce a flare-up. I think for diagnostic purposes, it would be better to be in some pain when you have the nerve block but that's just based on my own experience.

Violet

[nyt]

Hi Riva,

I also see Dr. Carrillo, he replaced Dr. Howard about 3 years ago when Dr. Howard retired. I've gone to the practice for over 8 years. Dr. Westesson has done pudendal blocks on me multiple times, when he did my first block over 9 years ago he had already done over 200 blocks so who knows how many he has done in the last 9 years. As far as pudendal blocks go, you are in good hands with Dr. Westesson. As far as Dr. Carrillo, I can't say enough good about him.

I know that Dr. Carrillo uses the Nantes criteria for that diagnosis of pudendal neuralgia. You have to meet the Nantes criteria before he you will give a confirmed diagnosis of pudendal neuralgia. Once you have a confirmed diagnosis it is very individualized whether he thinks you are a candidate for surgery.

I personally have found that he listens to his patients. I can't tell you how to proceed, whether to have the block or not. His nurses are very good. You could leave a message on their voice mail and ask one of them to call you back. You can discuss your concerns with the nurse. The nurse can give you the best advice or will talk with Dr. Carrillo and get back to you.

These decisions are very difficult. It took me about 3 years after Dr. Howard suggested I have pudendal surgery before I went to Dr. Hibner for my surgeries.

The only advice I dare give is, listen to your gut instincts, they won't mislead you.

[Ash1234]

Rita,

Also see Carillo and would love to chat!