PGAD - persistent genital arousal disorder

[nonsequitur]

Here is an interesting video by Mary Ruth Velicki, a physical therapist. She lost her father like you clo and started to have chronic pelvic pain right after that event.
She wrote a book. She erred 2 years pursuing medical treatments and visiting dozens of medical practitioners. She eventually realized that there is a mindbody connection and that was her key to healing.

https://youtu.be/L3Y1Q-G_o1o

Again, I am not trying to shove down your throat some new age ideas. It is grounded in science and has been documented for more than a century from Freud to the latest Functional-MRI studies. As susanjane wrote, pain does not equate tissue damage. I went from being bedridden in 2011 after suffering 8 years --diagnosed multiple times with PNE-- to resuming a pain free life by the end of 2014. I became aware of the mindbody connection in the fall of 2012. It was not easy or quick but it is possible.

[clo236]

My pain started before I lost my father but I do believe that you can get into a cycle of pain anxiety and then more pain and anxiety will always make things worse in terms of muscle tightness impacting on the pudendal nerve. I am waiting to see a pain pyschologist through the NHS to try and give me some coping techniques etc but that might take some time. To be honest though is there any wonder I am seriously anxious I'm only 21 and I don't know many young people with terrible genital pain and being unable to sit.

Violet I'm a bit worried about something that happened last night, so I was on the toilet doing a BM and I think the toilet had just been bleached but it had been flushed once and when I went the toilet water splashed up into my anal area. Now it did feel like this BM was going on forever and afterwards I had this intense burning sensation up round the anal area and afterwards it felt like there was something crawling up round the anal area, very creepy.

I noticed however when I had switched on to gaba everytime I had a BM I had bad burning afterwards so I don't know if it was just the PN.
I'm worried that it was the bleach and its maybe gotten round the anal area and on to the genitals.

This morning I've woken up with bad clitoral pain and would hate to think that somehow bleach had gotten down there and made things worse.
I don't know what to do,

Thanks,

Chlo xxx

[stephanies]

Hi Chlo,

It sounds to me like it is unlikely the bleach would cause any damage in the way you describe. I understand how difficult it is to have such pain and uncertainty in your life. I have found that the more I worry, the harder it is to deal with my situation. I am so sorry you are going through so much right now.

Sincerely,
Stephanies

[Violet M]

If there was any bleach/chlorine it would have been very diluted by then, Clo. I don't think there is any need for worry in that regard, anymore than you would worry about some chlorine in a swimming pool or hot tub.

Violet

[nonsequitur]

clo236, my point is that you were very stressed at the time with your dad's illness. Massive stress at the onset is a strong telltale of somatoform pain disorders.
But let's put things in perspective: Billions of women deliver babies which is a massive trauma to the pelvis and do recover. If sexual activity could trigger PNE then sex workers would be massively affected by it. There is no indication it is the case.

How can the non-incident that happened with your boyfriend be the cause of your suffering? It is virtually impossible.

Prof. Franz Alexander wrote that you need 3 elements to trigger somatoform pain syndromes:

1) A predisposition (ex: childhood trauma, lifelong anxiety)
2) An emotional upset (ex: sudden stress, death, divorce)
3) A triggering incident (ex: a fall, a puny incident)

Many people here fit all 3 conditions. I certainly do.

Is the pain psychologist a CBT psychologist? If it is the case, it is pretty useless to reverse somatoform pain disorders.

I am sure that your pudendal nerve is inflamed with all that tension. It is reversible. Find a doctor that can prescribe you more effective pain medication first.

https://www.nlm.nih.gov/medlineplus/enc ... 000922.htm

Somatoform pain disorder

Somatoform pain disorder is pain that is severe enough to disrupt a person's everyday life.
The pain is like that of a physical disorder, but no physical cause is found. The pain is thought to be due to psychological problems.
The pain that people with this disorder feel is real. It is not created or faked on purpose (malingering).

[whatislife]

Is there any other medicine that are not SSRI that work for this? Cipralex did lessen it significantly, it caused some nausea but it lowered over time. My only problem is that I cant think straight with them which affects me in school so I'm kind of looking for another alternative. Any ideas on what to try next?

[clo236]

Hi what is life,

I'm taking the same medication for you which is used for anxiety disorders and depression. I don't think it helps with neuropathic pain though I know Violet found a benefit from it probably because there is a side effect of reducing sexual effects/drive what ever you want to call it because I remember on an anxiety forum someone saying that they felt like they were numb down there.

Are you on any nerve pain medication such as pregabalin (I'd maybe ask for this one first)/gabapentin? Or noritriptyline which is a tricylic antidepressant. My pain consultant wanted me to try a small dose of noritriptyline on top of pregabalin however with the escitalopram (which we both take there can be bad side effects if these are both taken)

Are you at uni/work??

Chlo xxx

[whatislife]

Hi Clo,

Cipralex/lexapro/escitalopram, so much names for it. Yea, I been taking it for a couple days now. I thought cipralex would be perfect, since I don't know about you but anxiety / stress worsens this so much for me and this lowers it to 0. Though the downside with it is; I can't really think straight. I didn't find a doctor yet that actually knows about this, my family physician doesn't know anything about it. I just read what others say online that help them and ask my family doctor his opinion on it. He thought cipralex was a good idea because it lowers your sex drive which he thought my problem was :/. I have yet to try pregabalin / gabapentin or even lyrica. Does it help you by any chance? Are there any downsides that you noticed about them? And yes I am currently attending a uni. Best to you as well, hope you feel better.

[clo236]

Hi whatislife,

The side effects of not being able to think straight will eventually lessen so don't worry about that, unfortunately these drugs which effect the brain do sometimes make you feel like you can't think straight. I would give them a shot though unless it was really bad.

Have you any pain or is it just arousal?

2 and a half years ago I was put onto pregabalin pretty quickly and I noticed the pain lessen and I felt like I could function again the pain was always there but it was manageable but then last summer for about 10 days I went on holiday and to see my friends I was sitting more because it wasn't causing me pain and I regretfully didn't bring cushion with me. I got a flare then that didnt really calm down and I kept getting flares after exercise, sitting on a cushion, walking up a hill so the GP suggested changing to Gabapentin. That's when all hell broke lose on day 2 of gaba I started getting terrible arousal almost felt I was on the verge of having an orgasm. In a month I upped by dose to the maximum and felt it wasn't that great for me pain wise. Now I'm about 2 weeks back on pregabalin its panicking me because at times I can still feel the arousal and I worry I'll be stuck like this.

If you're at uni you must be young? I'm 21 myself and was just wondering how you cope with this I find the whole arousal thing so distressing . I'm also in significant amount of pain aswell.

Chlo xxx

[clo236]

I'm still a bit concerned with my pelvic floor, I keep getting bad bladder spasms that make me feel like I need to pee but then when I try and go it might spasm more and then after sometimes I'll feel a downwards pull which makes me wonder am I pushing? Would I know that I was pushing a pee out?
Maybe its my pelvic floor trying to relax its just I don't want to strain those muscle and make everything worse.

Chlo xxx