IN THE DIAGNOSIS PROCESS - NEED HELP FROM YOU GUYS

[egamb001]

Hello everyone,

I'm writing here today in hopes of getting the best recommendations for a quicker diagnosis.

One day, May 16 2019, to be exact almost 9 months ago everything changed for me, and I have been in pain everyday 24/7.

It all started from what I thought was the feeling of having the worse UTI ever, I did indeed have a UTI, but the strange thing was I had severe left vaginal wall pain and anal-rectal pain, all on the left side. I had the feeling of having a mass in the perineum area, somewhere deep inside between the vagina and rectal area.

Over the course of the past almost 9 months I have seen the following doctors in order who have prescribed and ruled out the following:

1) UROLOGIST - Treated the UTI but did a Urine Cytology and CT SCAN of Urinary Tract since I had persistent on and off pain while urinating despiste being over the UTI. All came back OK.
2) OBGYN - Manual exams showed nothing and could not find the cause of the severe left vaginal wall pain. I would not feel pain during the manual exams. Ordered a transvaginal ultrasound in which everything turned out normal. During ultrasound the probe touched a specific spot of the left vaginal wall and I screamed in pain, stating that that was the spot where the pain was coming from. The ultrasound technician disregarded it and so did the OBGYN, sibce the ultrasound was normal.
3) GASTRO - Went to gastro for the anorectal pain and also on and off discharge of drops of mucus (coming from r=anus) sometimes blood tinged while urinating. He referred me to a colorectal surgeon since he didn't find anything during manual exam.
4) COLORECTAL - Found nothing during manual exam and ordered Pelvic MRI with & without contrast to see if there was a cyst in the area between the vagina and anus, thus the sensation that I was sitting on a "small rock" that I felt and still feel while sitting, and basically at all times. MRI found nothing.
5) GASTRO - Suggested Colonoscopy because of the blood tinged mucus and to rule out anything else. Colonoscopy clean.

The months of May and June were horrific pain, and having to small kids to look after was a challenge. The pain in the Urinary section started going down as months progressed, as did the vaginal pain, by the start of August it was anorectal pain only, but really bad, and having the sensation of a mass in there. Intercourse was a NO WAY for 2 months, I couldn't wear jeans or tight clothes and would sit basically on tight buttocks to reduce pain. My menstruation for 2 months would NOT flow out, unless I would go sit in the toilet.

At this point I was hopeless, and everyone has dismissed my pain, I'm taking nothing for the pain and just bearing it, until I find this website after googling pelvic vaginal/rectal pain. Being in Miami, I have no access to any of the DRs in this website, but yes to one of the PT listed here, so I went and contacted her and had hope for the first time.

6) Pelvic PT: Suggests I have textbook levator ani syndrome and NOT PN since when she touched the pudendal nerve vaginally I was OK. Stared treated me for 3 months. Now says her levator patients get better within 2 months and suggests it might be pudendal related since when she palpates in the rectum near the nerve I feel the worst pain of all. My muscles are very tight as well. She got a DR to prescribe Valium rectal suppositories with baclofem which have helped a bit but I'm not pain free, or feel "mass" free. At this point she refereed me to Pelvic Rehabilitation Medicine which just opened in Miami, I had an appointment the DR, but she tends disagree, since I had no pain during vaginal exam palpitation of the nerve (she did NO rectal exam), it should be muscular and should continue valium for 6 months and twice a week PT. Other option would be do the 3 nerve blocks, in case the nerve is irritated to make the process quicker.

I took 3 weeks to make the decision giving the PT a bit more time to work, and the DR went on maternity leave, I'm now left to wait until January 8th that she will be covered with another DR coming from New York, her appointment with her is next week and this is what will probably get done if she agrees: the DR is Allyson Shrikhande, MD, for a ultrasound guided pudendal hydrodissection shot with 4cc Lidocaine and 2cc of Dexamethasone. 3 shots left side suggested.

At this point I have had no 3T MRI, or MRN's done. I have no Urinary or Vaginal Wall pain left. Pain is bad, recto-anal, at all times, worse when sitting (feeling like sitting on a mass), but doesn't wake me from sleep. Intercourse if uncomfortable hence the whole area is sore, I would for sure avoid it if I wasn't married. My menstruation has returned to normal, meaning that it now flows out normally, without having to sit down.

Any suggestions on where else to look for answers and any tests I should have done to get a proper diagnosis soon? Should I have a 3T MRI or MRN? Are the shots under ultrasound guidance a good idea without using a CT Scan or MRI to guide? (Its almost $1,800 out of pocket for the 3 shots so if possible I would like to confirm the diagnosis first rather to use them as a lets see if this works).

Thanks to all for your recommendations.

[29Mari]

Hi I am new here too and just posted. I hope some of the forum regulars respond to our posts soon.

I relate to your experience. Many of our symptoms sound similar. I hope you get some relief soon.

Mari

[Germ99]

I have pain too but it doesn't get better and it is severe and I don't sleep. No doctor cares so I am basically in it alone. Why don't they take these things more seriously. Every broken bone I've had hurt much less.

[Patty]

To the OP you sound like you have PN. I'm off the opinion (for what that's worth) that PN levator ani pelvic floor dysfunction etc are all the same thing. Muscles
squeezing on the pudendal nerve causing intense pain. I am sorry to say 7 years in this March. You need oral medications. Cymbalta, Gabapentin, Nortriptyline
are ones that have been discussed on this forum alot. But you need to get your pain reduced. I lived on ice & bathes the 1st 3-4 years on a regular basis. Pelvic
floor PT never really did anything for me but everyone is different.