18 y.o. Newly diagnosed and frustrated! In need of advice.

Hey everyone! I'm Olivia and was diagnosed yesterday with vestibulitis/vulvodyna. I'm still not exactly clear about what they are because my symptoms are so erratic. I have a long list of health issues lol, so I'm used to doing research and coming up with possible solutions and trying different homeopathic methods. I would really appreciate of any of you could give me guidance about dealing with my symptoms.

I have "IBS" with constipation, although I have always felt that was a result of my doctor not exploring other options. I find that when I avoid gluten, my stomach pain is eased a little, my mental clarity is improved, and my moods are better. My body just feels cleaner. My symptoms are surely not gone though; I'm in the process of eliminating other trigger foods to narrow down my intolerances..
I was thinking of trying the low oxalate diet? Or calcium citrate supplements? That is my first question. Has that worked for anyone?
Also, do you all find that eliminating gluten or certain foods helps your symptoms?

I remember once I was preparing for a colonoscopy ; I was in the process of not eating any food for 2 days and flushing my system with laxatives. Basically, my body and digestive tract were empty. During those two days, I had no burning itching discharge or discomfort. That's why I am suspicious of my diet. Any thoughts?

My doctor told me yesterday that my uterus is backwards. Could that have anything to do with this as well?
I'm scheduled for an ultrasound and internal exam next Friday. I'm extremely nervous. My gyno wants to look around and rule out endomitriosis (sp?).

As far as my symptoms go, I experience:
- horrible excruciating pain during deep intercourse.
- irritable tender pain upon penetration. (both of these make sex very uncomfortable and unenjoyable. It is really affecting my relationship.)
- burning/itching or tenderness when sitting for too long.
- burning when wearing tight clothing.
- discharge.
- leukocytes detected in urine.
- frequent urination. (possibly due to uterus position)
- when I experience more fervent burning, my ENTIRE body gets itchy too. Why is this?!?!
- pain when inserting tampon or washing in the shower.
- my vulva always appears a little red or inflamed. As a young child this even happened. Pediatricians would attempt to prescribe me yeast infection pills but they never helped that or the discharge.
-depression/anxiety. (does this have anything to do with VV?)

During intercourse, the pain is almost in my anus. Does anyone else have this?!
I do not have any infections, and my doctor said it's vulvodyna and we have to do more tests.
He prescribed me desipramine for now.. Has that worked for anyone?

I know this is long and I have so many questions, I'm just desperate for advice or anyones experience with the meds my doc prescribed or diet ideas. How can I relieve intercourse pain?? :/ thank you so much for reading.

Hi Olivia,

First of all, welcome to the forum!! There are lots of lovely ladies on here to help you out and lots of information on the other threads that you should read through.

In addition to the vulva pain, there are many overlapping diseases that seem to go together. Women with vulvodynia often have: endometriosis, fibromyalgia, IBS, chronic fatigue syndrome, interstitial cystitis, etc. Most of us also get pelvic muscle problems too. On that note, I'd highly recommend you stop having painful intercourse. You will develop a muscle tightening response that will exacerbate your symptoms and could lead to vaginismus.

Personally, I have endometriosis, chronic back pain and vulvar vestibulitis syndrome which seems to be going more generalized. I can't even attempt penetration during sex because of the pain in the vestibule and I have endometriosis nodules in the vaginal wall that cause deep pain, too. I would highly recommend that you get the book "When Sex Hurts" by Dr. Goldstein et al. which will explain in detail about the causes, symptoms and treatment for all the conditions you mentioned you have.

I'm a little surprised at the treatment your doctor suggested. Vulvar vesitbulitis has three causes: nerve pain, pelvic muscle floor problems (which can go together), and hormone imbalance in the vestibular tissue. Usually the end result is irritated nerve endings which feel pain from normal touch. The best thing you can do is to get a referral or just find yourself a women's health physiotherapist. This will help alleviate and prevent the pelvic muscle floor dysfunction which could be causing your deep pain, your vulva pain right now or probably will happen in the future. Usually the docs start you on one of two courses of medical treatment - hormonal based or nerve based, depending on what they think the cause is. Hormone based involves estradiol creams or testosterone cream to help build up the tissue and restore it to a healthy state. For the nerve treatments, they often start with a numbing cream called lidocaine to try to calm the nerve endings down. They might also have nerve-calming drugs compounded into the cream (that's what I'm on). If that doesn't work they'll try oral pills. Common ones are amitriptyline (an anti-depressant) or gabapentin (an anti-epileptic). These drugs are supposed to make your nerves less excitable. It's a long, trial and error process to find what works for you (and what side effects you can tolerate).

Lifestyle and diet are so important, as you pointed out. It can contribute to inflammation down there which will certainly make nerve pain, muscle pain and especially endometriosis so much worse. Oxalates in the urine can set off those sensitive nerve endings too and some women have experienced a lot of relief from that diet. The other big ones are sugar and alcohol, which many women find contribute to the pain. You have the exact right attitude about trying different things to see what works. Personally, I've found that an anti-inflammatory diet makes me feel the best, with little to no sugar. I noticed no difference with gluten free, low oxalate or giving up caffeine. Calcium citrate gave me constipation, and with the endometriosis causing me a lot of problems in that department, I couldn't take it (same with amitriptyline). You could also consider doing a food sensitivity test with a naturopath to rule out for sure what bugs your system.

If you've read this far, I hope you found it helpful. Sorry for the info overload! Be well,
Best,
Katie

Hi Olivia,

I agree with Katie. Avoid penetration. If you continue to have painful sex you will reinforce the idea in your brain that sex is painful and this will cause your body to tense up more when attempting to have sexual intercourse. This causes the pain to be worse which in turn leads to mucsles tensing more next time round. Its just one big terrible circle.
I was diagnosed about 8 months ago. I am lucky I have a very supportive partner, but I understand your fustration in the idea of not being able to partake in this seemingly important part of a relationship (or at least at our age it seems everyone considers it important). It is hard, but it is important in order to stop your body associating something that should be good with something so painful.
while there are many many causes, from what I can make out its generally to do with your muscles down there being too tight/tense and the nerves being too sensitive. Its retraining your muscles to relax, and your nerves to stop firing pain signals. from what I have heard, Physiotherapy is super helpful. Im starting Physio this month, and while im nervous as hell, I am excited at the idea that it may help treat the pain.
Good Luck with it and I hope you can find a way to treat/manage it quickly.

Regards,
Cassy.

I agree with Katie also. Lifestyle choices have a huge impact. I had no pain when I did a combo of sugar free (I am GF already), had low stress, next to no coffee and alcohol, did meditation, therapy, physio, acupuncture hmm I'm sure there are other things.

Painful sex creates memories of trauma and is not helpful.

Vulvodynia is a chronic pain condition and today I've been diagnosed with fibromyalgia. I have CD as well. I love my life!

Apologies, Olivia, I confused what your doctor prescribed you with diazepam. Despipramine is a tricyclic antidepressant which would world as a nerve calming drug like amitriptyline. I've just heard so many stories of girls whose doctors are prescribing the completely wrong type of thing like antibiotics that maybe I've become too cynical! Sounds like you're in good hands!
xx

Welcome Olivia! I hope you find the support and advice you need here.
I am currently in the process of doing the low oxalate diet, which is tricky as different websites have different opinions on what is and isn't low oxalate.
I am starting to take calcium citrate next week when they come through the mail, I will keep you updated.
I think it is a test and trial, for example I found breakfast tea makes it worse so instead I bought roobios tea (oxalate and caffiene free) and this made me burn like mad!
Its all about being aware of how you feel and what your consuming.
I think it would be good for you to start a pain diary if you haven't already, and write down how you feel after certain meals or drinks. After a few weeks you might notice some triggers.

I hope you feel better soon x

Could you please give me the meds that make up your compound cream and how much of each. I would like to try this but Aussie docs are so behind.

We don't even have vaginal vallium for gods sake.

Thanks,
Claire