Hello, im a new member & this is my story

I am 27 years old and started having pain in my vulva when when I was 17. Didn't have the best first sexual encounter (very sore) and from there on the pain got worse and my boyfriend of 3yrs dumped me because of the lack of sex. This made me very upset and because of the burning and soreness, went to the doc and was given thrush treatment. Also, went to gum clinic as ex had been cheating and i was paranoid i had caught something. This never helped and was referred to the gynae. She diagnosed vaginismus and discharged me.
By this time I was 19 and had started a new relationship, who is now my husband. He was very patient and we didn't attempt anything sexually until 9 months in to our relationship. Again, it very sore and I felt like a freak since everyone else was having sex and having no problem. The symptoms that i were experiencing were that i felt like i had thrush - burning and itchy. Then when i attempted sex it was really sore around the opening and felt like stabbing.

Cut down 8yrs later my symptoms are worse than ever. Never had 1 experience where sex hasn't been pain free but i did get to a stage where I could tolerate the pain at the entrance as this did eventually ease off but i had burning afterwards. I managed to conceive and had a baby girl in Feb 10. Had a horrendous pregnancy due to back & pelvic problems and was housebound for 16wks on crutches. The birth was even worse and I had a ventouse delivery which i got an epsitomy eventhough i pleaded with 3 consultants for a c-section. The pain symptoms that i now experience are burning, raw feeling, stabbing pains and now pain from my scar tissue which reaches my anus. Pretty much there everyday! Was referred to the gynae, he said I was normal! Im sorry but if you experiece these symptoms and just about hit the ceiling when the speculum is inserted - thats not normal to me! Its too uncomfy to wear tampons, also my pants seem to make me feel burning as well? My periods are hellish and so heavy but anytime ive been on the pill my symptoms are worse.

Asked doc to refer me to vulva specialist as im so depressed about all of this and feel like im getting nowhere. Also, asked to be given amitryptaline tabs to see if they help. Went back to GUM clinic and she could'nt get the speculum near my cervix but did see a red area so im getting a smear test tomorrow. Doc gave me diazapam because i really dont know how the nurse is going to do it. Feel so fed with myself but it does kind of help me knowing that im not the only 1 who has this problem.

Thanks for letting me share my problem

Hi Pab, welcome to the forum. I can totally relate to the back and pelvic problems you had during pregnancy because I have Hypermobility Syndrome so my ligaments are lax all the time and my pelvis is exactly what you'd expect from someone who's just had a baby even though I haven't had any. For your pelvis to be that bad during pregnancy I suspect there was some issues with it previously and that could well have played a part in your initial problems. The stitches after birth probably added to the already irritated nerves.

I'm on the Ami and am currently working my way up to 50mg a day, I've just reached 30mg and am totally woozy again so I'll have to stay at this dose until that calms down before I go up another 10mg. It's well worth trying as it does decrease the pain a bit but you do have to accept 3-4 weeks of side effects before your body gets used to each dose.

Sebby recently had a smear test and the doctor let her insert the speculum herself to make it less traumatic so perhaps that might help you? I find my clothes make my burning worse and am trying to find different clothing to wear while I'm like this, my pain is constant too and tampons are nearly impossble for me although applicator ones are less of a problem if I really have to wear a tampon (for example normal physio where I have to strip down to my underwear).

A GU clinic can prescribe medication for the pain or refer you to a specialist if your doctor doesn't understand the problem. It's also not that long since you gave birth (assuming I'm reading your message right through my Ami haze!) so some of your extra problems may still calm down on their own yet. You've still got lots of things to try but pain relief should be a priority. I initially tried to avoid painkillers but they've made daily life a bit more bearable for me so I'm glad I got some now.

Anyway welcome to the forum and hopefully our previous ramblings will give you ideas of things to try!

Welcome Pab, sorry you had to join us. Glad we can all be here for one another. There are many different types of treatment you can try, so please know the pain can and will decrease. Sarah001 is on Ami along w/ others on this site. I am on Gabepentin (Neurontin) and Lyrica. Gabepentin is an anti-convulsant. It can be used to interrupt the messages the brain gives to the nerves. I am on 1800 mgs...but, it took 3000 mgs initially to help me. Months ago the doctor added Lyrica to the mix. Lyrica is used for people w/ fibromyalgia. Lryica helped me a lot. I am having a flare up now so, i am thinking of increasing the dose w/ the docs permission. I also take Vicodin a few times a day for pain during flare ups. It takes the edge off a little.


I also am doing Physical therapy. People on this site try many different treatments. We are all different. Read the blogs and share w/ your doctor.

Good luck and stay in touch.

Hi and welcome Pab,

Im the Sebby, Sarah was talking about and yes the doctor did let me insert the..hang on..yes speculum myself. At my own pace and also let me do the thing where it expands inside you. It helped me feel more in control so ask your dr if you can do this!

I have not been able to get a smear for 2years up until now and was well overdue.

We are all trying differnt things for our pains and I will give what ever I can a go.

Im currently waiting for a nerve block injection and will also be booking to see a womens physical therapist.. if you are in the uk and are finding it difficult to find one in your area the following link will help. I emailed them and they gave me two names of physical therapists in my local hosp that could help.

http://www.acpwh.org.uk/content/

I currently take co-codermols 15mg x2 when pain is bad just to take edge off.

Good luck and keep posting

Sebby (Admin)

xxx

Thanx Sarah, Sebby and JwaJules for replying to my post. The nurse was very gentle and used a small speculum, its the first time I haven't nearly hit the ceiling when having an internal done. Think the diazapam probably helped as well. She was very understanding and said that whenever i need an examination i should ask for the smallest speculum and for it to be opened slowly. She did notice i had erosion on my cervix but i wont get the results for a few weeks.

Im not back at the gynae until 18th October but i am going to ask if i can be referred to a vulval clinic as i dont think he is listening to what i told him and he was more interested in my episotomy scar tissue. I know they have vulval clinics in England but not sure if they do in Scotland. Have also started amitryptaline 25mg and an anti-depressant. There is a women's health physio at my local hospital so might try and arrange an appt.

Thanx for being supportive, i am so glad that i have found this forum

Sebby,
Its seems that we are on the same path. Our daughter, now 11, just went for an MRI in Boston (The Boston Pain Clinic's suggestion...along with the other 200 things we have done and tried.)
Before the MRI, I went to see her Doctor and I "lost it". We are now waiting for an appointment with a neurologist. I want her to have a nerve block. (I have read a few articles that say that they help and cure some)...so I am praying that they will be willing to try it. If they do, Oh, I pray for it to work.
I am sure that we will get to the same place (neurologist) with The Pain Clinic but waiting one more day is too long! This is never ending! She is still in great pain everyday! The pain now shoots up and down her back. The shark biting, knife stabbing pain, the burn, the awful pain when urinating and no sleep are all still a horrible part of her daily life. Poor baby, we can only pray!
Good luck to you! I hope all goes well. Keep us updated!
Always Tammy

Tammy, my heart goes out to you and your daughter. I can't imagine what she is going through. I have had two spinal blocks. The blocks were shot into lower nerves. I can't remember the names of the nerves. They had the word Plexus in them. They were not the Prudenal nerve that leads directly to the vagina. The doctor told me he had better success w/ the lower nerves. Unfortunately, I did not have any positive results. I am hoping you have better luck. Does your daughter take any medication like Lyrica or neurontin? You said you have tried about 200 things. So, I'm guessing you have tried different medications as well.

Good luck and let us know how it goes.

JWAJULES
Thanks so much for your response. It really helps knowing that others care or know the pain.
No, she has not tried these medications that you have listed. Since the Amitripalyne and Gabapentin affected her the way that they did we are very nervous to try other medication, but we would, we just know that we have to keep a really close eye on her. I will research them. Are these medications that have worked for you?
I have reserched endlessly on the Internet (like I am sure most of you have). I came across an artical on Pain associated with THE GENITOFEMORAL NERVE. This is what I think is causing our daughters pain. ???? The symptoms mimic hers. Has anyone heard of this nerve? Also, has anyone had the same pain(s) shoot up and down their back (quickly)?
I'll keep you informed with the neorligist/spinal block. Maybe, if that is the route that they decide to go, it will work!
Are they willing to try a different approach (with a different nerve) for you?
The possible side affects that COULD happen with Spinal Blocks also worry us a great deal! We are running out of options.

Thanks again!
Talk to you soon!

Tammy there's an article here about the nerves that supply the vulva:
http://www.obgyn.net/women/women.asp?page=/cpp/vulvodynia

I know I've got some issues with the ilioinguinal ligament so it's possible I've also got a problem with that nerve. The fact your daughter's pain is shooting up her back makes me wonder if there's more to it than vulvodynia, does she have any other health problems? Has a physio had a look at her pelvis and checked her legs for a leg length discrepency and that kind of thing? I have problems with pelvic joints and my pain is all up my back which is why I'm wondering if your daughter has some musculoskeletal things going on.

Tammy, yes, Lyrica has helped me a lot. I'm fortunate that I have had no side effects. The side effects could include, but are not limited to weight gain, sleepiness and on an on. I have had none of these. Maybe I feel a little sleepy. I had very good results when the doc. prescribed Lyrica (i also continued taking my Gabepentin at the same time 1200 mgs. I was up to 3000 mgs at one point). But, I have been told that these medications can help for awhile and then adjustments need to be made or new meds need to be tried because they don't always continue to help the pain. I was doing quite well, but i have had a flare-up now for the past week. I increased the Lyrica. I am now taking 200 mgs. You can go up to 300 mgs. I don't know about Lyrica and children.

As for the spinal blocks, my doctor was willing to do another one for me in the Prudenal nerve, but i decided to take the medication and physical therapy route. The plan for the spinal block was to: give the first block, then two weeks later, give another block, then at three months and six months and then the doc thought that would be all i needed. since the first two did not help, i backed out. at any time, i can go back in and try it again. the hope was that it would calm down the pain so i could focus on physical therapy.

I'm sure we all have different medical issues going on. your daughter's symptoms are not like mine. I have had no pain beyond the vulva area. I have not heard of the nerve you mentioned. I so hope that your daughter gets some relief. i know it's possible because i am in a MUCH better place then i was. the Neurontin cut my pain in half. the Lyrica gave me a lot of hope and relief.

as for the nerve block, the doc had me take a Valium ahead of time to relax me. i would recommend something like that for your daughter. the first block wasn't as bad as the second. the doc really went deep into the nerves and i could feel it shoot down my leg.

i will be thinking about your poor daughter. there are things the docs can do. you will eventually find the right treatment!

jules

Sarah
Thanks for the great link. Good information!

She has been looked at by at PT and a Chiropractor. I hope that they would have caught it if there is a leg length discrepency. But you never know. She does have very flat feet. Her pelvis has been checked. She has also had an Internal
(she was put to sleep). She has had an Ultrasound (came back fine) and just went for an MRI. No health problems except for flat feet and a milk and icecream allergy.
She only recently got the shooting pain up and down her back....started about a month ago. This is just one more pain to go with the shark biting, stabbing and burning pain that touches every part in her private area(s). That is what she calls it Her urethra hurts really bad . It really hurts her to go pee. Some days she screams or crys just to pee.
Thank you so much for you advice, concern and help.
I will keep you updated!

jules
Thank you for all the great information! I am going to mention this medication to her Doctor.
You are right. Not one persons pain is going to be exactly the same. I pray for the day that they find a cure for my daughters pain and for all that have suffered so much!
I will keep you informed. Hoping the neurologist office calls with an appointment tomorrow.
Have a great week!

Our daughter is now 13. She is suffering „only” for strong headaches; but I can imagine what you are feeling….
Botox is for sure no miracle medicine, but you should ask your Doc about this possibility.
Best reagrds

The thing about flat feet, and I know because I have them too, is they affect the hips and pelvis during movement. Any disruption in the pelvic joints will set the pelvic floor off and we all know pelvic floor spasm is a big part of vulvodynia. Is your daughter particularly flexible Tammy? I'm asking because I have Hypermobility Syndrome and alot of the women I talk to on that forum have vulvodynia and pelvic floor dysfunction. Classic signs in kids are knees and elbows that hyperextend (think banana shape rather than straight) and being really flexible with bending (I can get both my hands flat on the floor wih my knees locked even though I'm covered in muscle spasm). If it's just her feet does she wear arch supports?

Hi Sarah
She does have arch supports....casted by a Doctor. We also have some from a Chiropractor. She saw a Chiropractor also thinking that might help.
AND...SHE IS VERY FLEXIBLE! I was shocked when I read your response. It was almost like you knew her! I have thought many times (in just thinking what could have triggered this), "I wonder if it is that "trick" that she does?" She lays on her stomach and rounds her feet and head up, then can scratch her head, comb her hair and etc with her feet. In my million questions/guessing game....that one has been in it. Thinking that it might have caused an injury/trauma. Unless there is another correlation that I am missing?
Very interesting!

Husband
Thank-you for caring and for your response. I will put Botox on my list. Still waiting for the Neurologists office to call. UG!
Good Luck to you and your wife. I really hope it works for you. Keep us informed.
Thank-you!
Tammy

Yes she definitely sounds hypermobile. There's lots of ways hypermobility can cause this, firstly her "trick" will be stretching the hip flexors and the ilioinguinal nerve is under them so she could have irritated that one. If her pelvic joints are hypermobile her pelvic floor or her piriformis will be working overtime and they can both affect the pudendal nerve and the extreme arching of her back could also affect the genitofemoral nerve so she could have irritation of any of the nerves that supply the vulva. Another thing is hypermobility causes bad posture so any of the muscles could be referring pain to the area too. And finally hypermobile people don't produce strong collagen which can make the skin very fragile so any sort of irritation of the skin can go on and on and we also heal slowly just to make matters worse.

I'd say take her to a physical therapist (I'm assuming you're in America?) and get them to assess her pelvis and spine for hypermobility and work with her to stabilise them. Stay away from chiropractors who just want to bang the joints around as this will make them more hypermobile. It's great she has arch supports but her gait needs to be assessed too as people with collapsed arches often don't walk correctly and allow the hips, pelvis and spine to give way rather than using a proper "heel toe" gait so her gait definitely needs looking at to make sure she's walking properly. Pilates style exercises would be very helpful for her so she can strengthen her core and allow any muscles that are overworking to calm down and so that any hypermobile areas that may be irritating nerves can stabilise. A good PT will know how to do this (ring and ask them first if they have experience with hypermobility as many don't) and perhaps you could do the core stability exercises together?

One last thing, stop the "trick"! The sooner hypermobility is spotted and work begins to stabilise joints the better the outcome, mine was ignored as a child and only came to light when I hit my thirties and it was causing considerable pain which makes it much harder to do anything about but at 11 she has a good chance of it not getting out of hand if it's treated now. A PT may well be able to identify if the nerves are the problem and help her take away anything that's irritating them so she may not need a nerve block but if she still does it would work better if the cause of the irritation is removed first.