Newbie - my story!

[sailor_moon]

Hi there fellow sufferers,

I'm a female in her late 20's from Australia who has just been diagnosed with PN after 3 years of hell and having over 20 doctors tell me it was all in my head [I'm sure you all know how that feels!]

My symptoms include: Extreme itching [kinda like being stung by stinging nettles or bitten by bull-ants kind of itch] this is my main symptom, burning that feels like my crotch is sitting on a hotplate, and deep nerve pain on my left hand side like someone is digging in with their thumb really hard and it escalates up my back and down my legs into my feet [ this symptom didnt actually appear until a year and a half of having this condition]

Basically my symptoms came on suddenly.....excruciating itching, burning and inflammation. Literally overnight. I have always been very fit, and although Ive never ridden bikes or horses, I did do weights, pilates and yoga 5 days a week, as well as walking and running.

Automatically I assumed it was thrush so I began using thrush treatment to no avail....this was the beginning of the long hard road out of hell [and I'm still not out yet!]....one doctor said "Oh you are allergic to condoms, use steroid cream", another one said "oh it's Lichen Sclerosis...even though I had no visible LS! Use a stronger steroid cream",... "oh it's Chronic thrush, take diflucan everyday for 6 months" [this made me very very sick],..."Oh its all stress, you need antidepressants...and counseling!".."Its dermatitis"...."Its a food allergy...go on an extreme diet!"...and my personal favorite..."Oh, it doesn't look like anything but you may have VULVA CANCER!! Better send you to a cancer specialist for biopsies!"...

This went on and on for 2 years...as a young newlywed, this was the worst thing that could possibly happen to me. I had doctors telling me "oh you know if you can't have sex with your husband he is going to leave you/cheat on you...just endure the pain and keep him happy".....Yeah right....they were more concerned about my husband not getting laid than me being in excruciating discomfort. This all affected my mental state severely...I was paranoid about my husband leaving or cheating on me, I turned into a complete psycho...even though he was completely supportive and always by my side.

My boss threatened to fire me....on top of PN I was diagnosed with Chronic Gastritis [severe inflammation of the stomach, similar to Crones disease but in the stomach instead of the bowel] because I was repeatedly vomiting every single day on top of the PN pain and was taking time off work to go to doctors who were not helping me.

I contemplated committing suicide many many times.

Long story short I found a good gyno who did 3 nerve blocks with anesthetic and steroid successfully. He then referred me to Professor Vancailles in Sydney who believes I do have PN. I undergo a pudental MRI in the next few days and see what shows up.

I currently take Amitryptiline 10mg [ couldnt up it to 20 as it makes me too drowsy]....tried Lyrica 300mg and it did nothing but make me off my chops ...Professor wants me to undergo pelvic physio which I am currently waiting on my GP to come back so I can get a referral from him to get it done for free....trying to pay for all this when you are on minimum wage and paying a mortgage is really hard! And I have just started on some Amitryptiline cream 2%.

I would very much appreciate any advice I can get. Being in Australia there isn't much support...most doctors don't even know what PN is.

Also....has anyone been pregnant and given birth naturally with this condition? I am going to have trouble falling pregnant already as I have non-insulin related PCOS and noone seems to be able to sort me out properly as I am not overweight and they don't know the cause of the problem besides possible stress. I am wanting to have a baby as soon as I can get my pain sorted out. This condition has really affected me mentally in terms of having a baby...it has held me back from having a child and I have become very sad and bitter. I am unable to feel happy for those who are able to fall pregnant and have children. It just makes me feel like even more of a failure. I am in my late 20's now and everyone keeps asking me when I am going to have kids....I can't talk openly about this condition, so I just tell them "Never"...or "Can't really say", only to get responds like "oh well you're not getting any younger"...does anyone else have to deal with this?

I want to thank those who have made this website happen, I have been feeling very lost lately and this page is a great source of info.

[Violet M]

Hello Sailor Moon,

Welcome to the forum. It sounds like you have had a dreadful time the last few years. I remember having some of the same symptoms you described. I was also a bit of an exercise freak until I got into such bad pain I had to quit until I could get my pain under control.

Dr. Vancaillie has an excellent reputation on this forum based on the experiences of other patients who have posted so I think you are in good hands under his care. I don't think the MRI will show if there is any ligament strain, pelvic misalignment, or sacroiliac joint dysfunction. All of these could be possibilities in your case given your history of serious exercise and the fact that your pain is worse on one side. Definitely make sure the physiotherapist you will be seeing will be able to evaluate you for all of these issues.

I can only remember one person who has posted on this forum who opted for a vaginal delivery. She posted here. http://www.pudendalhope.info/forum/view ... f=2&t=4948 Typically pudendal neuralgia patients opt for a C-section though. Hopefully you will be able to get your pain levels down to where you can think about having a baby and being able to enjoy the experience.

Violet

[melony52]

I am so sorry for your pain and for people's lack of empathy. Where do i go to post my story.? I was just diagnosed a week ago. I have been suffering for 2 years. It came on suddenly after a long plane ride from New York to my home in Utah. I was treated for bladder infection, uti, yeast. I tried so my things. I finally saw an ob, who found nothing and sent me to a urologist . Come to find out she wasn't an ob,she was a midwife and could not diagnose any of these problems. Finally got into a true ob. He said my hormone levels were low and put me on Premarin for 4 months, 200.00 dollars a tube. I only felt relief using 2 times a month. I finally gave up on him and tried hormonal therapy. I must say that first year was hell. I never went any where, tried every kind of underwear. I finally wore none. Rode a motorcycle occasionally ( only for him) if I took high doses of hydrcodeine? Sill the pain was intense. We had no sexuall intercourse that year. My sweet husband was so kind. I never once felt he was or would cheat on me. I'm sorry you had to deal with those thoughts on top of everything else. We just celebrated our 32nd anniversary .I was tending my 3 year old grandson every day. I think he helped keep me alive. I was also taking a small dose of amitriptiline for sleep. My mom finally suggest I try tramadol. I took a few from her and...my life was back. In just a day or two. I was still in pain, but usually 1 a day would work. I sat back and watched to see if the hormonal therapy would help. It did not. It began after 8 months to not work as well. I couldn't exercise any kind of moisture seemed to push me through the roof. Sex was ok. I finally called a urogynocologist ( I had a mesh bladder repair in 2011). I thought something could be wrong with that. She put me on the one thing that hadn't been tried. A steroid cream. And told me if it didn't work in one month to go see this Dr Sharp at the University of Utah medical center. He specialized in Pelvic pain. Finally got in to see him after a month. He checked my posture, did an exam. Poked around with a small toothpick thing,and took a sample under a microscope . He diagnosed me and said...no more sitting.. muscles tight, but he thought it was just from the pain. He started me on gabapentin and told me to continue with the amitriptiline . I have a very religious background. I truly trust God. So I have always had hope. Just discouraged. I love motorcycle riding with my husband. We have a trip to Hawaii planned in sept. 5 + hours. And I attend church weekly for 3 hours. How do I do all this. How do I live like this. My daughter in law gave me a nursing pillow to use. Is this going to be permanent? Have I done too much damage? Will I make it worse if I ride with my husband. I have so many questions. I guess only time will tell. Sorry, this is really the first time I have told my story.

[Violet M]

Melony, I responded to your post in this thread: http://www.pudendalhope.info/forum/view ... f=2&t=7587

Violet

[sailor_moon]

Thankyou for your kind replies. It means a lot to me.

Violet , I have no idea what those issues you listed actually are? Noone has ever mentioned them to me, are they treatable conditions?

I had my MRI a couple of days ago...doctor said he will ring if they find anything wrong.

Still waiting to get my referral for Physio from my GP....ridiculous that it takes a month to get in to see him.

Can anyone describe what actually happens during physio and how long it takes to see any improvement? I have no idea what to expect.

[Violet M]

Ligament strain, SI joint dysfunction, and pelvic misalignment are often related to each other and all are treatable and but you may need to be careful about how you exercise in the future if these are issues for you. At least I have to be careful about exercise but there is a lot I can do. I had some prolotherapy injections to strengthen the sacroiliac ligaments.

I don't know what kind of PT you should expect because each therapist has their own protocol and it will depend on what the PT finds during your evaluation. It could include myofascial release of the pelvic floor which is sort of like the PT massaging the pelvic floor via the vagina to try to get the tension to release or it could include skin rolling. You can probably google it to see what that involves. Some people see improvements within 6 visits but it really varies from person to person.

Violet