Seeking Answers & Beyond Frustrated

[seekinganswers]

Hello All!

First I want to say how thankful I am to have stumbled upon this site/forum. I have been in a world of hell for the past 5 months. I've been passed from Dr to Dr to specialist, and I sit here today with no clear diagnosis. I am hoping someone here might have some insight and if this sounds like PN. First off, I cant recall a single incident that triggered anything, it almost feels like it was a progressive issue. I am (or was) an avid exerciser....I was doing extreme workouts such as P90x, Insanity, and the last program I was using was called Brazillian Butt Lift. I think Brazillian Butt lift may have been my final straw....this exercise requires a lot of floor work with a weighted band around the thighs in order to shape the butt and lower back. I was doing these exercises up until I began feeling symptoms.

About 5 months ago, I developed a nasty yeast infection (my first ever). My OB ran bacteria and checked for everything...negative except for yeast. Probably unrelated to anything, just trying to leave a detailed history. Cleared up with treatment. A few days later I began to develop a backache around my tailbone that progressively got worse. Within days, sitting down became excruciating. My vagina felt so uncomfortable that I thought the yeast had returned, only to go to the Dr so she could tell me that everything appeared normal. The vaginal and lower back pain was like nothing I have ever felt. Just driving my kids to school was beyond torture. Everytime I sat it felt like I was sitting on hot coals...the seat in my car was the absolute worse for me. During this time, I also was feeling a like I had a UTI, but samples left with Dr never showed bacteria. I actually felt the most stinging for a few minutes after urinating. A month after the start of symptoms, nothing had changed. I was feeling a daily burning pressure in my vagina, and sitting was still a nightmare. The tailbone pain was still present, but then I started feeling pressure in my butt, as well as a feeling as though the bottoms of my feet where on fire. I would get the sensation of pins and needles in my lower legs and feet daily. Going to the movies was torture because sitting down was so painful it distracted from the movie!

I had seen my OB plus 2 others probably 12 times during this time only to get the brush off because physical examinations always looked okay. I was told to see a urologist, whom I did not agree with, so I went to see another one. He said that my final diagnosis would probably be IC. My last visit to the OB left her telling me that I have vulvodynia because nothing else can be found.

Its been 5 months of "something" being felt daily. Whether it is discomfort sitting, random vaginal itching/burning/tingling sensations, urination issues, or tailbone and butt pain. It isnt too bad once I wake up, but on days when I have a lot of sitting to do, by the end of the day I am in extreme discomfort taking prescription strength doses of ibuprofen. Some days are tolerable, and other days I feel like I am back to square one.

Sex is a different story...somedays it is painful and I do not enjoy it, but somedays it isnt too bad. Its usually the night/day after sex is when I am uncomfortable. I feel bad because I tell my husband that I need a a good few days at least as "recovery time" before I can attempt it again. Im so lucky that he is sweet and understanding.

I am desperately trying to find some answers. Does this sound like potential PN? I had one Dr order an X-ray, but my GP said that she would want to refer me to a neurologist for an MRI on my back. I honestly am so exhausted from drs...

Thank you all in advance for your time! This is such a wonderful site, and Im very thankful for it!

[janetm2]

Welcome to the site and hope we can guide you in the right direction. As a novice it sounds like you could fit PN but I would suggest checking the symptoms off the home page and FAQs for steps to take. One thing is to see a PT that is PN aware even though they are not doctors they can help with diagnosing and fixing tight muscle or spasms, etc that may be some of your pain. The list is off the homepage. Also in the FAQs is a letter to explain this to your doctor and maybe the other info on medication to help you get some for the pain. Hang in the others will soon add to helping you and sorry you are having a tough time. My hubby has been extremely patient because he does not want to hurt me and just wants my pain to go away sex is off the list for now. It is good you can at least continue in a less frequent pattern. The delayed pain is a normal issue of PN.
Janet

[seekinganswers]

Welcome to the site and hope we can guide you in the right direction. As a novice it sounds like you could fit PN but I would suggest checking the symptoms off the home page and FAQs for steps to take. One thing is to see a PT that is PN aware even though they are not doctors they can help with diagnosing and fixing tight muscle or spasms, etc that may be some of your pain. The list is off the homepage. Also in the FAQs is a letter to explain this to your doctor and maybe the other info on medication to help you get some for the pain. Hang in the others will soon add to helping you and sorry you are having a tough time. My hubby has been extremely patient because he does not want to hurt me and just wants my pain to go away sex is off the list for now. It is good you can at least continue in a less frequent pattern. The delayed pain is a normal issue of PN.
Janet

Thank you Janet. I have looked over the symptoms as well as the FAQ page, and while I was reading over the symptoms, I found myself shaking my head yes for a vast majority of those symptoms. I am sorry Janet that sex has been a painful issue for you. This is no doubt a hard side effect for anyone, and for people in long term relationships.

I am just so tired of going to the Dr and spending the money for them to tell me that "nothing is wrong".

[nyt]

Seeing a neurologist is a good idea. One should always rule out if the origin of the problem is the back and is a logical place to start which will most likely include an MRI of the lower back. If at some point you need an MRI of the pudendal nerve you should really go to Dr. Potter in NYC or Dr. Kalkini in Phoenix since these dr.'s offer the best MRI's of the pudendal nerve otherwise any MRI of the pelvis will be normal if done anywhere else. A physical therapist trained in pelvic floor evaluation is a good place to start to help figure some of this out. The burning in the feet might be the result of piriformis syndrome because the sciatic nerve runs under the piriformis muscle and in some individuals it can run through the piriformis. Piriformis syndrome can make it very difficult to sit and can mimic some of the signs of PN. A massage therapist and physical therapist could help figure that out. You might want to find a really good chiropractor to see if your tailbone is out of alignment and your hips. The tailbone pain might be helped by a chiropractor. If you go to the International Pelvic Pain Society website you can find a list of doctors that specialize in pevlic pain and there is a list of doctors that specialize in PN on pudendalhope main pages. You will really need to find someone who specializes in pelvic pain to help figure this out and if it is someone who understands and can rule in or out PN the quicker and more accurate your diagnosis. Good luck and keep us posted.

[Violet M]

Hello Seeking,

Reading through your story, I can see why you were saying "yes" to many of the symptoms listed for PN. I remember when I found the PNE websites I kept saying, yep, that's me -- the history of exercise, feeling like I had a yeast infection, UTI, pain the day after sex, etc. My experience was that exercise caused a strain on the pelvic ligaments and the result was pelvic misalignment and sacro-iliac joint dysfunction.

I'm glad you found us but sorry for the reason. I agree with nyt that you need to have possible spinal problems ruled out and seeing a PN trained physical therapist is a good idea too. If you are going to have an MRI you probably want to make sure it's the type of MRI that's required by whatever PNE specialist you might eventually end up seeing if you think you might ever considering going that route.

Take care,

Violet