Health Organization for Pudendal Education

Hi,

If anyone has seen my previous posts I have had PN and suspected PNE for the last 4 years. MRI has shown acute angulationat S3-S5 area from an undiagnosed spinal fracture that doctors dismissed when I had a fall and refused to let me have scans done.

In the past 12 months I have had 3 nerve blocks with aesthetic and steroid which eliminated the redness, painful arousal and orgasm and bad "burn", leaving me with my usual semi-constant itching/pricking feeling, bad pulsating/shooting nerve pain on obe side of my groin/butt cheek and soreness and rawness feeling on flare ups. In the last few months I have had a further 2 nerve blocks with Hyaluronic Acid which further helped me, along with physio on my back which seemed to be helping slightly with my genital pain but a noticable difference in my back pain.

For the past week all of a sudden the above symptoms that went away 12 months ago have suddenly returned and I have no idea why. Its driving me insane. Borderlining getting the bad burning back, severe prickling, redness, soreness and rawness, painful arousal and painful orgasm.

I can't get my head around why this has happened when I had improved so much? I have had a very hard time copiing this week. The fear and anxiety is eating me alive, I struggle at work especially because my employers have treated me badly in the past from having timeoff due to this.I havnt done anything different so I cant understand how the return of these symptoms has happened? I thought I may have had a yeast infection due to the redness but I tried antifungal the past week and its done nothing so I can rule that out.

I do have hormonal problems and my symptoms for some reason can be worse when I am due for my period especially the week leading up to it...do any other sufferers experience this? I havnt had a period in 2 months which has only contributed to further stress because I am trying to get all this fixed or at least improve enough to fall pregnant at the end of this year as I am turning 30.

Any advice would be much appreciated. I dont want to be stuck back at this stage :'(

Hi sailor_moon,

In my first 18 months of this problem, my burning and stabbing symptoms fluctuated quite a bit, and I usually didn't know the trigger. (Now, sadly, the burning is constant). So, in my experience with pn, the symptoms--at least in the past---did fluctuate a great deal, and the source of the change was usually not clear to me. I know this doesn't help you much, but I hope it helps to know others have had similar experiences.

April

Hi sailor_moon,

I'm new on the forum (registered today) and I've had PN without knowing it for a year or two...
For me it was progressive so I didn't notice a sudden change.
Just like you, I have that unpleasant arousal syndrome and hypersensitive vulva and clit' that hurts...

I stopped the pill in January and haven't had my period since then.. I stopped it because I want to get my hormones
checked. I believe that I too, have a hormonal problem that caused me to be predisposed to PN and want to prove it.
But yes my last period was the most painful thing I've ever experimented... never in my life did I have a had a period
this painful...

I urge you to please get your hormones checked because a lack of estrogen and progesterone cause weakened tissue
and therefore, weak nerves/poor recovery. Estrogen is responsible for collagen production.
Get your hormones tested and tell me about it! I know about hormones so I could help!

Another question, are you underweight?

Sailor Moon,

Sorry to hear your symptoms have returned. I can't say for sure why, other than to brainstorm some ideas of why -- for instance since you had some mechanical problems maybe over time the gains you made through physiotherapy slowly slipped back to where your musculoskeletal system went into the previous state it was in before, and maybe some PT would help again. Or possibly the anti-inflammatory effects from the nerve blocks wore off over time. Sometimes if a treatment helps, it may be something you ave to continue doing off an on as a preventive measure to keep the pain from returning.

Violet

Hey ladies, thankyou so much for your replies!

I got my period FINALLY and the flare up eased right off!! It has done that to me in the past but never so extreme!

I am currently using an Estrogen /Amitryptiline cream down there daily too to keep the tissue soft and strong.

A bit about my hormone history. I came off the pill and got PN 2 months later. I have had irregular periods my entire life when I havnt been on birth control. I've had my hormones checked many times and have multiple vaginal ultrasounds. I got diagnosed with PCOS via a blood test and ultrasound where I could visibly see the polycystic ovaries. However I have been tested for the typical insulin resistance that usually accompanies PCOS and I don't have it! I am in a normal weight range, not overweight or Obese. Ive never really gotten any answers as to whats the cause or how to balance my hormones properly. In 2015 I underwent surgery to remove endometriosis that was on my cervix. To regulate my period my Gyne gave me Femara but that reduced my estrogen too much and Prof Vancailles said it can sometimes increase PN pain and effect the tissue so he recommended me to get off it, and upon examination he did believe my tissue was affected by it. So I quit it and he gave me some estrogen cream with amitryptiline which worked a treat for my skin.

I am going to see one of the best hormone specialists in the country next month when I go to have botox injections, under Prof Vancailles recommendation, so hopefully he can shed some light on things.

I have read that some PN patients get worsening symptoms before/during their period. Not sure how many are affected by this but its certainly the case with me!

sailor_moon wrote: I have read that some PN patients get worsening symptoms before/during their period. Not sure how many are affected by this but its certainly the case with me!

That was the case for me too. Good luck with seeing the new specialist and getting the hormones sorted out.

Violet