Health Organization for Pudendal Education

I wonder if your physician really understands how dreadful PGAD is. I think anyone who has experienced it would think twice (or more) about going off a medication that is significantly helping. If she is adamant, maybe you can ask about weaning off slowly and see how you do instead of going off cold-turkey.

Good luck,

Violet

Luckily she said she is going to wean me of slowly. I honestly don't think most doctors understand how this issue affects people's lives. This website has gave me so much info though, it gives me hope that I shouldn't give up till I find what works for me.

Joelle, you do have many options so I think there is reason for hope. Sometimes it requires doing a lot of research and trying a few things until you find what works best for you.

Violet

Violet, I have been tracking my flares. I have found since I started having this issue, during ovulation and menstruation my flares are really bad. Lyrica don't even help during that time. I read that others had that issue also. Could it be related cause of tight muscles? The reason I had cystoscopy was that I was urinating blood and blood clots. That's when pgad started also. I do think Lyrica cut back some of the issues so I can function during the day. I also have had blood work for hormones, they were fine. I did at beginning of year have low testosterone and dhea. If this is not right place to post this I can move it. I don't want to intrude too much on the original person that posted. Thanks!

PGAD can be related to tight muscles but I'm not sure how it would be related to the blood clots. Hopefully you will be able to find a good PT who can evaluate the muscles for you.

So, did you ever figure out what was causing the blood clots and were you able to get that problem treated successfully?

Violet

There was no answer for the blood or blood clots. They just dropped it after cystoscopy came back clear. I get blood off and on, but always test negative for infection. So not sure what caused it. Urologist and gyno didn't act concerned. The blood clots are a little concerning to me though. Hopefully can get to Cleveland clinic sometime.

I think I would want to know the cause of the blood clots too if I were you. Did they do a kidney ultrasound to make sure it's not coming from the kidney?

Violet

I had a CT scan and xrays. I have been prone to get UTIs in the past. The sent urine sample away and they seen the blood, but no infection. I was worried of ic, but urologist said no. I asked urologist about pgad and he looked at me like I was crazy. Gyno knew of it, but wants to find cause. Just weird that blood clots started when pgad started, but u wouldn't think it is related. Hopefully next step is MRI.

There have been other patients who felt like their PN symptoms started as a result of frequent UTI's. I don't know if the blood in the urine is related to the PN/PGAD symptoms in your case but it sure seems suspicious since they started at the same time. Do you know if your pelvic floor is tense and the muscles overly contracted?

Violet

Yeah, the pelvic muscles are tight. I have had issue with painful intercourse for awhile. (Poor husband) Luckily he understands. I am trying to find a good PT, but hard to find close. Also when my symptoms started I was on Wellbutrin for a month also spironolactin. I'm at a loss on what is going on. Sounds weird but when my colitis flares the pgad subsides. Could be because my mind is on that pain instead. I thought maybe I damaged pn. I own a farm and lifting heavy stuff all the time. I understand my doctor wants me to go to psycologist for help with dealing with this, but I really want answers instead of dragging things out. My husband and I are realizing kids may not be in our future because of all this stuff. We r ok with it. May go adoption route, because he's worried pregnancy will make it worse. Thanks so much for the responses.