Been here before- never ends

[clo236]

Hi guys,

I'm not sure if you've read any of my posts before but 4 years ago when I was 19 my bf rubbed my clitoris too fast and hard and caused damage to the pudendal nerve. To this day I'm not sure how this happened and i'm so angry that something so minor has caused my years of pain.
I don't understand how this caused nerve damage and think about it alot if I hadn't have done this then I wouldn't have ruined my whole life
Over 2 years my pain moved to the perineum and gradually got better and I was able to have a 9 month relationship however never went back to normal.
I thought my nerves had healed so I went on holiday and sat without a cushion then I had a flare that never went, after changing medications the pain was awful couldn't bend or walk up loads of stairs or hills. couldn't sit down
After going to PT I could now bend and move around without further pain. The PT thought she could feel an adhesion over the PN. I did something silly though and as I was young and my dad had just died I lied to the doctors and said I fell on a bike as my mother was in the room. Now I'm thinking of coming clean to this new pain consultant but i'm not sure if that would change my treatment anyway?

It's been 4 years so I presume I will live with this for the rest of my life and i'm only 23, every day I have thoughts of suicide as I know I will never be able to enjoy my life get married have kids or even have another relationship. I never got the chance to fall in love and I feel like I haven't got a future. I'm meant to be starting a job and would like to save up for an MRN as they do not do them in Northern Ireland or on the NHS. Because it's gone on for so long I know there is no cure

Thanks,

Clo xx

[Violet M]

Hi Clo,

Yes, I remember you. Sorry to hear you are still struggling with PN. It seems like you still have a lot of options available that might help you. All of these normal activities that you have engaged in aren't necessarily what caused your PN -- like having sex with your bf or sitting without a cushion, etc. Most people can do those things without any problems. So you have to consider whether there is some underlying problem that is causing you to have an increased sensitivity to these activities that most people don't have. For instance, if you have an adhesion or something like a ligament constricting your pudendal nerve maybe it needs to be released. There was a time I thought I would never be cured or be able to live a good life but my life is great now. I think there is a very good chance that you could get better and have a good life again with the right treatments. I think it is important to be truthful with your pain consultant just in case it would make a difference in your treatment plan.

Violet

[clo236]

Hi Violet

Even if it was too rough could it not have irritated the nerve? I don't understand how the nerve can be trapped if it initially got better after 2 years. The physio thought that it have been blood that drained though the pelvis and caused a sticky adhesion. Do you think they'd be annoyed with me because I had lied about the cause? Should I tell my mum what happened? I'm not sure if I would have the entrapment surgery because noone can tell me that it 100 % is entrapped and i'm only 23 so the surgery could cause even more scar tissue and re entrapment further down the line.

Thanks

Clo

[Violet M]

It could have caused damage to the local nerve endings but my understanding is that typically that would be caused if this happened on numerous occasions over a period of time. For instance, I have heard of some women getting clitoral nerve damage from frequent use of vibrators.

I guess if you had localized nerve ending damage from that one experience, over time the pain could spread to the perineum if the pelvic floor muscles went into spasm as a result of the clitoral symptoms. Did the PT say if your pelvic floor muscles are tight/tense? If she presses along the course of the pudendal nerve is there any tenderness at the ischial spine or Alcock's canal?

I don't think you have to tell your mum what happened. You are an adult now and there isn't a good reason why she would have to know. But if you and your mum are close and it would ease your conscience to tell her then that might be a good reason to tell her. But your physician needs to know an accurate history in helping him to determine an accurate diagnosis.

I think you need more information and an accurate diagnosis before considering a surgery option. Hopefully the consultant you are seeing will be doing a diagnostic work-up to determine the cause of your symptoms and a good treatment plan.

Violet

[clo236]

Yea that was my frustration that it was only a one off though I was going through a high stress time and think I was holding the stress in my pelvic floor and tensing my muscles as I was having pain similar to cramps. When I initially went for physio I had no idea how to relax my muscles and my pelvis was out of line which was fixed
One physio I saw in Scotland said that she thought she could feel an adhesion over my PN in the fascia and I didn't have pain when she pressed on the alcocks canal but did have tightness along the course of the nerve. As i've moved back to Northern Ireland the womens health PT works on any tight spots along the course of the nerve and helps to stretch them out and I do my stretches twice a day which has allowed me to bend over and move comfortably. Do I need to tell my PT the real reason although I don't think that's going to change treatment options in regards to PT

Though i'm having an issue with Northern Ireland as there are no specialists in PN here I only see a general pain consultant but would like to see Dr Baranowski in London. I think the only way to see him is going to be paying privately but as I am not working until Jan I will have to save.

I'm worried that I maybe should have dedicated a year to getting treatment instead of getting on with life as I feel i've left it too late but then it only started getting worse at the year 2 mark. It's only at year 4 that I have decided I would like a nerve block or botox or anything, does anyone ever get better if they have had PN for a while?

[clo236]

This is what my physio wrote- Externally in the right Alcock’s canal there was two string adhesions that cross from the ischium to the perineal body and may also involve the perianal tissue. This was a definite trigger for her pain.

Although it's hard to say if you can't see directly in the body. Could rough rubbing caused internal bleeding or a blood vessel to burst because she thought the adhesion was from old blood thats caused fibrosis?

Thanks

[Violet M]

Yes, people can get better after years of having this. I knew one women who got better after 15 years of PN.

I've never heard of a blood clot coming from the clitoral area but I suppose you can bleed just about anywhere if enough force is applied.

Maybe you could get an MRI or MRN to give you more info about the adhesions.

Violet

[clo236]

I just want out of this nightmare we don't have any machines here to show the pudendnal nerve unless I fly to London and pay 2500£ privately and I'm not working at the minute.
I'm just feeling so low at the minute like I've got no future, no one would want me in the state I'm in can't even sit down for half an hour without being in severe pain.

Do you think if I'd told the truth I'd have different treatment? Probably not though because the pain got better every few months after that incident and I didn't want anything annoying the nerves. Now things feel different my nerves is probably trapped and because the treatment is so crap here I'll never know. I can't get to see a PN specialist unless my pain clinc say they can't offer me the same treatments

I never got a chance to fall in love or get married and have kids. Most people on this forum have kids to continue on for. I'm sorry for whinging I'm just angry

Thanks

[Violet M]

You are probably right that the treatment would not be different but I can't say for sure.

Does your pain clinic offer pudendal nerve blocks? Your pain clinic doesn't offer PNE surgery do they? Would they allow you to see a surgeon for a second opinion since they can't offer that treatment?

Can you ask your pain clinic to look into providing amniotic fluid allograft injections in the UK? If they can do a pudendal nerve block they should be able to do amniotic fluid allograft. Just brainstorming ideas here. I have sent you a PM.

Violet