PGAD - persistent genital arousal disorder

[nypain]

I wanted to provide an update. I had my venogram recently, and the vascular surgeon wants me to have more imaging and is considering bringing me back for stenting and embolization, which may or may not help (trying to have some hope but not get my hopes up).

The results did show May-Thurner syndrome, as well as possible Nutcracker syndrome and ovarian varicosities:

Venography was performed of the inferior vena cava as well as left common iliac, external iliac, common femoral and femoral veins. It demonstrated severe compression of the left common iliac vein, large lumbar collaterals more peripheral to the CIV lesion.. Intravascular ultrasound was also performed of the inferior vena cava and left common iliac, external iliac, common femoral and femoral veins and this demonstrated severe compression at the origin of the left common iliac vein whereby the cross-sectional surface areas were reduced to essentially the size of the catheter. An Omni Flush catheter was then used to cannulate the hypogastric vein and an exchange was performed with a quick cross catheter and serial pelvic venograms in an RAO and LAO position were performed which demonstrated some pelvic varices. The decision was made to evaluate the left ovarian vein and cannulated the left renal vein. Attempts were made to cross the left renal vein lesion however there appeared to be an area of stenosis in the left renal vein and catheters could not cross it adequately with this left-sided access. Power injector was used to perform venography which demonstrated patent right right renal vein and left renal vein orifice but more distal flow into the kidney was not well-seen again suggestive of stenosis and potentially nutcracker physiology. T therefore decision was made at this time to not proceed with any iliac vein stenting and to obtain further axial imaging and return if needed via IJ or right-sided access for further push ability and access.

[Violet M]

That's a really difficult decision. It seems like before having the stent/embolization procedure, you would want to know the possible risks associated with it. Hopefully the vascular surgeon would explain that to you.

Since your MR imaging showed some abnormalities in the area of the pudendal nerve, have you considered trying a pudendal nerve block to confirm or rule out pudendal nerve involvement?

Violet

[nypain]

I had my venogram last week. I was not stented. In addition to having May-Thurner syndrome, I also have possible Nutcracker syndrome and several varices. I have to go for additional testing and then follow up with vascular.

My pelvic pain management specialist is on maternity leave until January, so I am hoping the doctor who performed my pelvic floor Botox can weigh in - he was mentored by one of our experts.

Truthfully I am not sure I can wait until January, I have stopped sleeping on a heating pad since I gave myself erythema ab igne and also superficial burns at one point. I had been relying on Methocarbomol to get me through the day, with tizanidine and cyclobenzaprine sometimes at night, and that exacerbated my GERD. I am very tired from this condition and its effect on my daily life. I am tired of using a Valium suppository and sleeping on a towel!

I have suspected there is a vascular component, since (TMI) my clitoris is just never completely disengorged on the same side as my leg swelling, but I am trying not to get my hopes up too much because addressing the labral tear in my hip did not effect my PGAD, aside from learning that being immobilized reduced my symptoms. I just want to know if it will help, or if I have to accept this and try to find a remote job in my field and abandon all career advancement, you know?

[Violet M]

Yes, it can be exhausting. And the waiting for doctor appointments can seem like forever. My heart goes out to you cause I can tell you are really struggling. Have you tried pregabalin (lyrica) for symptom relief? I had some significant symptoms relief using lexapro. You have to be careful weaning off of both of those meds though -- you have to do it slowly.

Sending you hugs and prayers,

Violet

[nypain]

Yes, I’m on Lyrica now. I think it slightly takes the edge off but unfortunately I am still symptomatic day to day. I can consider asking to increase my dosage (taking 50 mg twice a day), but being on a higher dose achieved diminishing returns.

[Violet M]

Right, you always have to weigh the risk vs. the benefits with drugs, unfortunately. I mostly took them so I could sleep at night. It's so important to get a break from the symptoms and to get some sleep so you can face another day.

Violet

[sadie]

I do not know where to ask this question on the forum so I pray someone tells me or this ends up being the right place. I started colestoral med 2 weeks ago. I am a vegetarian n do not take in any colestoral but my body creates it. It's genetic. Mine is 420 . For the last few days my pgad has not stopped and I researched it and can't decide it there is a link to the Atorvastatin 10mg. Has anyone had the same experience or thinks there could be a link. I am very drug sensitive even benadryl gives my dystonia and Tylenol gives me nightmares. Ty if u can weigh in. GOD BLESS US ALL SADIE

[Violet M]

Hi Sadie,

Sorry to hear this drug seems to be causing problems for you. One of the possible side effects listed for atorvastatin is peripheral neuropathy so it's entirely possible it could affect your nervous system. https://www.goodrx.com/atorvastatin/sid ... orvastatin
The problem with so many drugs is they have so many possible side effects listed, you never know which are likely due to the drug and which are from some other cause. But it's possible the drug is causing your side effects, so I guess your options would be to either try a different drug, try to lower your cholesterol some other way, just live with high cholesterol, or just live with the side effects of atorvastatin. If I had to choose whether to live with PGAD or high cholesterol, hands down it would be live with high cholesterol. What do you think?

Violet

[sadie]

Ty you violet I agree. And it's genetic high colestoral .. a vegetarian at 115 lbs that eats 0 colestoral I can only lower it with excersize and w pn fter 2 surgeries I cant . I should come back and add the NIH report here to help others but in hurry. ..it's the one I sent to u I will have to come back later. Hugs to all . Ty again