New here- please help

I've been reading these forums for the past year or more and have never posted anything online like this before. I'm overwhelmed and don't even know where to start. Up until a couple years ago, I never had any urinary tract/vaginal problems. Sex (intercourse) always felt good, and I didn't notice any burning feelings in my vagina or urethra. Then, I lived abroad for a year in a hot, tropical climate. I thought I had a couple yeast infections and UTIs while I was there, and I took antibiotics/medications to treat both. Because you can get access to medications without a formal prescription, I have a feeling that I misdiagnosed myself with these issues, and basically OVER treated myself. The reason I bring this up is that this is the only turning point I can think of in terms of the development of my symptoms (from nothing). The only other potentially relevant piece of information is that I was dating someone at the time with whom I was having a lot of "clit stimulation" sex for the first time (thrusting at an angle to hit my clit). I wonder if this somehow gradually did some amount of nerve damage?!

After I got back to the US, the next couple years were mostly fine health-wise. The only weird thing is that I started developing some urethra pain (not sure if I have IC?? Been reading a lot about that too). What's bizarre is that unlike most of what I've read about this condition, I do NOT have any pain while urinating. And it's not constant. It's a few days/per month, often before/around my period, where I have a slight burning feeling coming from my urethra (I think?? It's hard to pinpoint). It often seems worse with caffeine, dehydration, and chocolate I think may be a trigger too. Like I said, there's NO pain during urination itself. I've been to the doctor during some of the worst days of this, and have never gotten diagnosed with a UTI. Last month, it got really bad and I even found blood in my urine, but again, no UTI!! This lack of a formal diagnosis for these symptoms has been infuriating. Luckily, it's never so bad that I can function- mostly uncomfortable, and psychologically damaging to have a condition I can't figure out. But all this is nothing compared with a secondary issue I've been dealing with for the past couple years- and the reason I'm posting in this vulvodynia forum.

Again, this developed so slowly that I have trouble even remembering how and when it started. I started dating my now fiance about four years ago. The first year we were dating we had a great sex life- intercourse was enjoyable, my sex drive was high, and things were fine. Then sometime during year 2-3 of dating, I noticed that every month, the week before my period, sex would be painful. Specifically, the entrance to my vagina would sting/burn- even with plenty of natural and or artificial lubricant. As a result, we would usually avoid sex during this point in my cycle. It was consistent and annoying, but not a big deal since it was only a few days/month. Then gradually, the frequency of these symptoms started building. This brings me to today. It devastates me to say that this pain at my vaginal opening is now constant. The silver lining is that it isn't unprovoked (I guess I should consider myself somewhat lucky that unlike some of the ladies here, it doesn't hurt to walk, or wear certain pants). I can also isolate it VERY specifically to bottom of the opening (5-7oclock position of the entrance to my vagina). If I touch deeper inside, all along the walls, there's no pain. It's only at that spot of the opening. But it makes it impossible to enjoy sex. My very supportive fiance and I have basically stopped trying. Doesn't matter how turned on I am and how wet, I simply can't enjoy any penetration (finger or penis).

My PCP has not been helpful. Every time I bring up the symptoms (including one thing I haven't mentioned- I do tend to have some IBS symptoms at times), she tests me for yeast/BV/UTIs, and then shrugs. I finally went to a Planned Parenthood to get a referral, and went to a gyno who specializes more in my issues. She seems to think I have Pelvic Floor dysfunction (thinks the urinary/vaginal issues might be tension related and connected). She recommended I see a physical therapist for a few sessions, then go back to see her. I booked a PT consult, but the soonest I could get an appointment was for February (and I was lucky- most other clinics in my area were booked out 4-6 months!!). I'm hopeful that I'll see some results after that, but in the meantime...

I feel like this is totally screwing me up psychologically. I'm a happy, well-adjusted person, but as I know all you understand, having chronic pain that is not well understood or easily treated is making me depressed. Over the course of 4 years, I went from having sex with my partner a few times a week, to a few times a month, to not at all. I know I should be willing to continue with non-penetrative acts, but my libido has totally plummeted from all this stress. Not to mention I have terrible associations with physical intimacy. It breaks my heart that my fiance and I are in our twenties, and should be in prime of our sex life, and have flat out stopped having sex. And mostly, I'm frustrated that I have no idea why this started in the first place!!

I'm desperate for answers, and for relief from these symptoms. It's hard cause from what I've read, no two cases are alike. I wish I could see an obvious connection between foods that exacerbate my symptoms, for example, but I can't. The urethra burning aside, the vaginal pain is so strange in that I truly don't notice it at all, unless I'm stimulating that one area. I can slide a finger deep inside and not feel any pain, but if I so much as lightly press that bottom area of the vaginal opening, I get immediate burning pain.

I know this was a lot of information. I don't know what I'm looking for exactly- practical tips and emotional support I guess? I'm so happy with my fiance, and our relationship is so much more than our sex life, but not having sex when we're so young and relatively early in our relationship is unbelievable sad and frustrating. Anyone have a similar story? Or any words of comfort/wisdom? Until I can get the medical attention I need for this, I may have to start seeing a therapist just to work through this stuff..

I definitely think you're doing the right thing by opting to see a physical therapist. It's unfortunate the wait for an appointment is so long. If you have access to psychological therapy too then I think that's worth seeking out in the meantime.

I'm not sure if you've read my post here: https://vulvodyniasupport.forumotion.net/t2291-four-months-of-significant-improvement But I've managed to get back to a relatively pain-free life and am able to have pain-free sex again after two years of nightmare with this condition.

It's great that you have a stable and supportive relationship. I can absolutely relate to the frustration you have at not being able to currently have a 'full' relationship. But don't give up. At my worst I couldn't imagine how I'd possibly ever get better. But I am better. Be stubborn. Try anything and everything you realistically can (as long as there's no or only very minimal risk involved). There are some good books out there on overcoming pelvic pain and painful sex (some may not be all that helpful until you get to see the PT). Hopefully you'll find the right combination of things to help you get better. It can take a while, but lots of people do get better.

Please email me so we can set up some time to chat. I've been where uou are... desperate! I may have some advice for you. Ddc627@gmail.com