Just diagnosed and terrified!

[kate1981]

Hello everyone

I have been reading this forum for a while now and thought this is what i may have. I have just been diagnosed with pudendal neuropathy on symtoms only. The doctor thinks it is because I have suffered with bouts of constipation throughout my life.

My pain initially started Jan 2012. I was with my partner for 9 years and didn't have problems with sex sometimes I had slight burning and discomfort for a few hours after but nothing major. This relationship sadly ended and 8 months later I met someone new. We were together quite a while before I felt ready to have sex. It was quite a bit rougher than my last partner and afterwards felt some discomfort but the next day I was fine. Four days later a burning sensation started in my vagina and the right side of my vulva and I felt a kind of rawness. I immediately thought I had an std and went to the sexual health clinic although we had used protection this was my first feeling. All tests came back negative and was given antibiotics for uti which cleared all the symtoms in 10 days. I went back into my relationship having normal sex with no pain for the next 5 months.

In June we were on our first holiday together and having lots of sex. By the end of the week the horrible burning sensation returned especially when passing urine. On return home I went to the doctor and was given antibiotics. After a week all the symtoms had cleared again and continued withmy normal life.

In August we were away together again having lots of sex and after 3 days the burning started again only on my right side. I went back to the sexual health clinic as I was convinced I must have a sexual infection. The doctor suggested it sounded like herpes I was distraught. Blood tests were done and all back clear. So what was wrong with me? I spent weeks crying and crying. The next doctor I saw said I had vulvodynia and prescribed amitriptyline. I took this for a few weeks until I had an appointment with a gynaecologist. She suggested I had vulvodynia and vagismus and said I just needed to relax. All this time the burning in my vagina was getting worse and worse to the point I could even bear to wear underwear and just lay flat on my back.

After the gynaecologist I saw a urologist and dermatologist. Everyone this started ihad proven uti but the urologist did not seem to think it was a bladder problem. The dermatologist said it definitely was not a skin problem but changed my amitriptyline to nortriptyline assessment said it would have less side effects.

My burning pain seemed go be getting better but I was left with a sharp stab pain up inside my vagina on the same right side. After these doctors I then saw a vulval specialist who also said I have vulvodynia and prescribed lyrical added to my nortriptyline and referred me on to physiotherapist for assessment of my pelvic floor.

Throughout all this time I was in tears every single day and my boyfriend was just not understanding at all. All I got from him was I'm horny well I can't have sex because I'm in pain. This made me so depressed. I also could not work as I was a long haul flight attendant so I could no way do this job like this. Flying was my life and had been for the last 10 years.

Since starting my physiotherapy it has been found I have a misaligned pelvis, different leg lengths and lots of trigger points inside and outside. My piriformis musclesand flutes are very tight and so that's what is being worked on as they could be impinging on nerves.

Last month I saw a Pne specialist who diagnosed me with pudendal neuropathy based on symtoms and a vagina exam. He wants me to have nerve blocks but these are do everything vaginally and unguided which I am very scared of. My physiotherapist bas told me to stay away from nerve blocks and not to even think about surgery whereas the one doctor told me to consider surgery and that pelvis misalignment would not cause my pain. I'm totally confused and at mh wits end.

My life has fallen apart completely. My boyfriend left me before Christmas he was so nasty and mean to me. I've lost my job and my house which I only bought last summer. I've got from flying around the world having an amazing life to being bedbound living backwith mh parents.

My pain is still only vaginally on the right side. The burning has mostly gone I just have this sharp stab pain up inside my vagina. I have lower back pain which I feel is muscular and sometimes aching in my hips. I still suffer with constipation but take movicol daily to help. I currently take lyrical at 300mg, nortriptyline at 40mg and dihydrcoedine for pain relief which is amazing although can become addictive so have to be careful.

My pain is not there when I wake but soon becomes apparent when I start to move. It is definitely worse in the late afternoon and when sitting. I feel sitting just squashes my vulva if that makes sense so I can feel the sharp pain more. I sometimes have a kind of feeling in my abuse like a small thorn but I don't know if this is hemmarroids or the nerve. I've had this for many years before this issue ever came. I also have always had a problem with orgasm but I think that may just be me and not connected. I'm just so confused with it all. Could the first time I had sex with my latest partner have caused this because it was rough?

I feel like I'm going crazy. I cry every day and spend all my time lying down reading online. I just want my life back. I'm only 32 and I'm scared I will never be able to be normal again. I want a husband and I'm desperate for a baby and I'm scared I will never have either of these things because who would want a women who they can't have sex with and who can't go out and have fun. The thought of not flying again also breaks my heart as that's all I have ever done.

I know my pain isn't half as bad as most of you on here and I really feel for everyone of you. No one should have to go through this evil condition. It has certainly made me question my faith.

I have so many questions. Could I have had this underlying for years? Is it because the first time I had sex with the new partner it was rough and could this hurt the nerve? Is it likely to be the constipation? Could it be because I am severely anaemic? Could it be a different nerve? Could it just be irritated by my tight piriformis of gluten muscles? Could the uti set it off? Any help advice welcome! I feel suicidal!

[Thunderman69]

Welcome Kate -

I am sorry you are having such a horrible time of it right now. As you already know, you are in the right place to get help! Your feelings of desperation and even being suicidal are sadly normal with this condition. Being that I am a guy I cant give you much advice on the physical aspects of your condition but I can help with just being here. I know exactly how you feel - that you have been literally robbed of your life at what should be the prime of your life. That said, you got everyone here to help guide you get the treatment you need. There are many things that can be done for you - absolutely no reason to give up! You just have to be strong right now ( believe me - its hard for me as well - look up my story) as hard as it sounds and keep telling yourself through all the pain and misery that you are gonna make it. You will make it. And its OK to cry all the time .. I do it, and I bet most on here have.. Just remember that you got lots of help here - these people are truly angels here.

As far as questions go I think there are many many causes and I have read that long term constipation problems can damage the pudendal nerves. The condition can also be congenital and may have been underlying.. I myself am struggling to figure out what caused mine.. But for me, I am coming to realization that I may never know. My symptoms just appeared out of the thin air one day! So who knows.. My doctors are now more focused on fixing me and basically told me to stop worrying about the cause since I have been sick over a year now
Hang in there. Pretty soon some of the veterans will be on here to help you out and give you invaluable advice. If you have any specific questions regarding meds or things that I can help with feel free to PM me!

MS

[Meliora]

Hi Kate! I understand what you are going through in many ways. It always seemed the more sex I had, the more pain that came with it. I had constant bladder spasms, bladder infections, yeast issues, and soreness/rawness with sex. I think a lot of mine was initially my bladder (pudendal nerve based though.) I would have spasms so bad I would want to urinate all day long. I am sure this is a silly question, but have you been checked for yeast? It can certainly cause pain/rawness and so can bladder spasms.

I now have full blown PN with rectal, vaginal, anal spasms and the thorn feeling you have. I also have horrible vaginal pain. My bladder is a mess and sex is too painful. The sitting pain came first, then after a PT injury, the sexual pain. My nerve was possibly crushed against my coccyx bone during aggressive vaginal trigger pointing.

I think some people are predisposed to have PN issues. It would seem that way for me. I have dealt with a cranky bladder and pain for many years. You mentioned constipation, did that come before meds or after? I take daily fiber as I do not want to add rectal pain to my long list of PN issues.

I do not think there is any reason to assume you cannot marry/have children or be able to fly again for that matter. There is so much you have not tried yet and reason to hope it will work. I am determined to keep trying things until I get my pain under control. I almost cancelled my appt. with Dr. Hibner out of fear and SO glad I did not. I feel like I at least have a plan of action now. Having a plan makes me feel better, and maybe it could help you as well. I feel like I am doing something to alleviate my suffering and all the additional issues it has caused for my family.

I understand having to depend on parents, that is a hard one. My parents have to help a lot, not what I had hoped for. I have always liked being independent. My plan is to get better though and I feel I am getting better at putting my fear aside. As for the unguided blocks, if you are not comfortable with it, I would see a doctor that does guided blocks. I have never had an unguided block, I think it would depend on how much trust I had in the doctors skills. Your PT feels surgery and blocks are not good options? I would talk with more than one person about such personally.

Have you had an MRI of your lumbar spine or pelvis? You mentioned back pain.

Are you being treated for your anemia? I would encourage you to do so and does the doctor know why you are now anemic?

Tight muscles can certainly cause nerve irritation. I am having Botox soon for that very reason. The PT at Dr. Hibner's said some of my muscles were as hard as the table! Not good! I currently use vaginal Baclofen and it helps some.

I also cannot sit and feel like even the special cushion I have tried "squashes" my vulva. No cushion has helped with that yet. Do you tend to be on the thin side?

As for sex causing PN, I cannot say for certainty. Childbirth can cause PN from stretching of the nerves. I suppose rougher sex could potentially cause issues for some? I would say more likely sex can aggravate PN issues, it does mine now.

I am sorry you are having to go through this. My life is totally different now as well, but I am going to keep trying! As for your boyfriend, I am sure you will find a wonderful man worthy of your love! You do not deserve to be treated unkindly for any reason. What some people without current health issues do not seem to realize is, at some point everyone gets sick or will face a health crisis and they will want to be treated with love/respect. I have done my share of crying and it's okay to be upset, PN stinks! Just don't let it keep you from getting better and finding reasons to hope. You can get better, don't give up!

[helenlegs 11]

Hi Kate, Welcome
I have to agree with Meliora and say talk to a different physio perhaps. Ones persons views are not always totally correct. You probably have too much information being hurled at you through different channels at the moment and it all becomes overwhelming. Every new bit of info sends the brain spiralling on a what if trip., . . . .it's totally understandable of course.
However the realities are that there is help. Here for one which you have found , with medication, which also seems to be working for you which is excellent and with knowledgeable treatment.
I'm not saying your physio is wrong by the way BUT PM is also correct sometimes the cause is elusive and not worth pursuing as sometimes it could be accumulative or a predisposition, sometimes both As he said it may be that it is too difficult to determine so concentrating on treatment is the best way forward. You never know things may fall into place with regard to cause as you find what treatment helps. Then again it is almost matter-less, as long as the treatment does help.
I'm very like Meliora too and like to 'have a plan', be pro-active with therapies and treatment, it just seems to help somehow.
What does your physio think is the cause? It does seem to me that your piriformis may be playing a role in your pain and definitely needs checking out. More often than not piriformis syndrome is secondary to a pudendal issue although in my case (perhaps yours?) the pudendal is because of the piriformis. There is an explanation of this here.http://www.uroweb.org/gls/pdf/24_Chroni ... R%20II.pdf
Chapter 6 is about neuropathic pain. 6.2.2 and 6.2.4 (and probably other passages? ) refer to piriformis as origin.
Some people just hold themselves tightly, stress? compensating for pain? both? causing muscle tension and resulting nerve issues. Relaxation techniques and cognitive pain management can help a lot in this case along side physiotherapy. Actually I would recommend pain management whatever and sooner rather than later too.
Have to take my new puppy for her injection now, hope you have a better day today. Nerves are tough too you know, they do like to glide and slide and have a fair bit of 'give' so movement, within reason, is good for them.
Have you tried ice. . . . . it's nice and can help tons .
Take care,
Helen

[HerMajesty]

Hi Kate,

I started off with a twisted pelvis and "leg length discrepancy" too (I put the latter in quotes because I am sure if your leg bones were measured on xray, there would be no discrepancy - your legs are misaligned because your pelvis is misaligned). Our stories are similar because our primary onset of this syndrome is almost certainly pelvic joint injury. I got interstitial cystitis (a chronic bladder disease) at the time of initial injury, but could live with that...same as you had some minor symptoms after sex for years but could live with that...So neither of us found out about the pelvic injury for years until we developed PN - By this point, a gal is like one big trigger point! I don't know how far you have explored beyond the pelvic region, but I had developed numerous trigger points throughout my entire body, due to misalignment, by the time I even found out what a "trigger point" was.

I have some philosophical agreement with your PT in that I think that unless the structural issues are addressed, chasing this problem through medical procedures is not going to be very productive. On the other hand, I am all for a PT 2nd opinion, because all the PT in the world is not going to help unless somebody stops "working on" the underlying joint issue and really CORRECTS it. There are PT's trained in Manual Therapy who can actually manipulate the pelvis back into a functional position. That would make the pelvic floor PT work on the muscles much more effective. I am in Nevada and had my pelvic joints corrected here; and afterwards I became interested in the field (I am an RN), and worked for quite some time with the PT Manual Therapist who did the correction. I got lots of networking in; so if you PM me with your location I might be able to recommend a PT relatively close to you, who knows how to align a pelvis. Unfortunately they are few and far between.

I had in fact developed additional pathology as you can see in my signature, but I consider alignment of a twisted pelvis to be foundational to healing - if not the only step, it is still an essential step.

I also see you are questioning your faith and am sorry to hear that because faith got me through this and the experience has made my faith stronger. I would love to discuss this with you too, but in a PM or if you choose to post about it in the "religious" section of the board I will respond - there have been issues with religious discussion in the past, since everybody holds their own point of view.

[flyer28]

Kate, however difficult it is for you, stop blaming yourself for having too much sex or ignoring warning signs etc.
My problems started in similar way (pain after sex) always faded away after 7-10 days before becoming chronic. I also was sometimes speculating what if....What if I stopped with sexual activities for one year or so, then stopped with tennis playing, stopped with sitting etc...I might be fully cured.
But you cannot think this way. I did not nothing extraordinary, after first problems appeared I was quite careful by sex, had sex maybe once in 3 weeks etc, avoided tennis playing for once in 2 months etc...and anyway my pain captured me.
THe problem is that I did not know anything about the depth of the pudendal neuralgia and structural changes which may appear. Now I see that as a problem of my body, maybe tight dorsal canals, then various anxiety-depression related contributors, bad steps in treatment (ECSW wave).... If I were able to avoid in 2009/2010 they would wait for me around the corner maybe in 2014/15...Now I have to fight with what I have. Would like to avoid operation, but not at all cost e.g. totally destroyed life.

[kate1981]

Thank you all so much for replying and your kind words and support it really means a lot to have people who understand.

In regards to your questions I have had constipation all my life on and off with bouts off diarrhoea as have had issues for many years. In relation to yeast I think this was tested at the sexual health clinic.

I have had an mri of my back but apparently it was normal. I'm wanting to get an mrn scan done but it's very expensive in the UK. I think this would maybe show nerves better. I did have shingles when I was 15 and they were all in my groin area and I did wonder if this could have damaged the nerve in some way.

I have just come back from my physiotherapy session and now I'm more confused. I still have all the right sided external trigger points and he has been doing some dry needling and skin rolling. My piriformis issues really tight and very painful. I've been having back pain all week so has looked at that. He has said I gave sijd which I've suspected fir a while. I mentioned my leg discrepancy and he said it would be a true discrepancy. Having analysed my pelvis and legs he is totally confused. My pelvis is rotated forward on the right side meaning my leg should be longer. However this is not the case my left leg is still longer by an inch. He wants some more tests on my spine as he feels it is curved. He is confused he said he has never seen this before and thinks I need to see an orthopedic consultant and a podiatrist.

I now don't know what to think. Is my vagina pain caused by pn caused by constipation or is it my structure causing it all? I'm in the UK so if anyone knows any good specialist who could help with my situation.

[HerMajesty]

I would be shocked if it is a true leg length discrepancy - easy enough to rule out, since all it would require is measurement of the femurs on x-ray. But the pelvis can be twisted in many unusual patterns - and yes, it can be very confusing to most PT's; only a few specialize in this area.
my pelvis was skewed in several different directions: I had an upslip ilium on 1 side and a downslip ilium on the other; but once that obvious problem was cleared I also had a rotation of the lower half of the pelvis ( the ischia). It was pretty complex: they were somewhat sideways in one direction, kind of like windshield wipers, and rotated at the same time. I was also told that I seemed to have "mild scoliosis" because of what all that mess in the pelvis did to the lumbar area.
One of the things I liked about my pelvic floor PT was that after 3 or 4 months when my pelvis was not straightening out, she realized she was out of her depth and referred me to a PT Manual Therapist who specializes in patterns of pelvic dysfunction. It sounds like your PT has a very good skill set too, but is out of his depth on this one. It can be fixed: Mine was. But an Orthopedist can't do it...in fact, I was in for a shocker when I went the Orthpedic route, because the Dr. told me there was nothing wrong at all, and told me he knew better than a PT because he looks at "objective" things whereas PT's look at "subjective" things. Not so - just that Orthopedic imaging does not provide an appropriate analysis for SIJD because it takes still pictures, and SIJD is a primarily a problem of movement or function, not of structure. As a PT would say, a joint can be "hypermobile" (moves too freely) or "hypomobile" (stuck).Orthopedic imaging will not show that - if anything, it will show subtle hints of SIJD like a bent coccyx, and lead you to chasing the bent coccyx as if it were the primary pathology, which it is not.
I hope this makes sense; just trying to give you some tips because i have been there / done that with practitioners who were confused about my pelvic alignment.

[Jackson]

Hi,

Some very good points you make "Her Majesty".

I was told by a long-time aneathetist that the PTs coming out of University these days (4 year degrees in this country) "know their nerves" meaning they know where the patients nerves are etc. They can also read X-Rays and be subjective/objective. Depends on the level of training and experience,I guess.

My opinion, for what it's worth: there needs to be a lot more wide-ranging and thorough investigation before surgery is done and not just relying on what is seen on a scan. And wouldn't it be great if there was such a thing as a Pelvic Pain Specialist; Instead of having to be your own detective and trawl through one speciality of medicine after another to get to the real cause of pelvic pain!

Sorry, Kate 1981,for getting off your issue a bit. Just thought HerMajesty made some good points. I do hope with the advice you're getting you will get the right answer.
Cheers.

[molly]

Hi Kate,

I,m also from the UK and yes it is difficult and confusing to try to make sense of it and make the right decision.

If you would like Icould pm you a good pn aware physio in the south, she is expensive, but gave me some level of improvement , although ultimately Iopted for surgery,after four and a half years. Botox was also useful but only lasted around three months.

I have found water to be very soothing and have just been referred for some hydrotherapy.


Hope this is useful.

Regards Molly