Frustrated 22 year old, new member

I am so glad I found this forum. Here is my story.

I am 22 years old and was diagnosed with vulvodynia when I was 21. I married my husband when I was 20. This past April, I started getting intense, unbearable pain during intercourse and burning during urination. I went to my gynecologist in May and she prescribed me a steroid cream because she thought it was just an allergic reaction to something. When I saw her for my follow-up visit a few weeks later, my symptoms were still there. She did a more thorough (and very painful) internal exam and diagnosed me with vulvodynia, gave me some pamphlets, and suggested that I get physical therapy. She also prescribed an antidepressant to see if it would help relax the muscles and block the pain. I stopped taking them after a week or so because it gave me panic attacks and made me feel like I had no emotions (it was pretty scary, actually). She also prescribed lidocaine jelly which only numbed it right at first. I left the office crying and just didn't understand it.

I went to my physical therapy evaluation in August, I think. My physical therapist is a pelvic floor specialist and I have been very thankful for her. During my evaluation she obviously tried to figure out what could have onset my condition, and lo and behold it was because my husband and I had gone bike riding frequently in the spring...which was right when I started noticing the symptoms. I had not been bike riding since I was in Jr. High. She thinks the pressure from the bike seat caused my pelvic floor to collapse, which caused me to get vulvodynia, and I agree with her.

I would describe my pain upon insertion as extremely raw, stinging, and throbbing. When I pee it burns like a UTI and the flow is irregular due to pelvic floor spasms. Even if I have not inserted anything, I may have days where it just hurts down there. It hurts to sit on hard surfaces, or sometimes even soft ones if I've been sitting long enough. I have intense lower back pain. Recently I have had painful bm's because it is even affecting those muscles, which causes bleeding from tearing.

When I started going to therapy, insertion of anything was impossible...no using tampons and obviously no sex. My physical therapy started with external massage (thighs, abdomen, back, butt) because she felt that relaxing those muscles first would allow her to work on my pelvic floor with better results. The first internal session, she could not even insert her finger. She has me do contraction exercises daily as well as some wall stretches for my thighs.

After a couple of months, she was actually able to insert her whole finger with very little pain when I dropped my pelvic floor. She was able to stretch me a little bit, and it was still uncomfortable but not as bad as it was in the beginning. It took baby steps to get to this point, but still no way sex was possible. It had finally gotten to where it didn't burn when I peed anymore.

Right when it started to look promising, I relapsed just this week and have been having a very difficult time. The pain has come back full force: insertion pain, pain at rest, back pain, and burning when I pee. These are only the physical symptoms. Emotionally, I am a complete wreck. My husband supports me 100% and he has been amazing...but I feel like a failure not only as a wife to please my husband but as a human being in general because I can't create a child. I have been severely depressed and I feel like a freak. I hate talking about it because I personally know no one who has problems like this. I am bitter that there are plenty of women out there that take sex for granted and throw it around like it's nothing. But here I am, technically still a newlywed, and am not even able to have the pleasure of having sex with my own husband. I feel like that intimate bond is gone because I am just afraid of it leading to me being more upset and depressed that I am a freak of nature. I cry a lot and just want to disappear sometimes.

Well, that's pretty much my story...I came here looking for support from women who are going through some of the same things that I am. I feel like talking to other people might give me a little bit of hope. I hope we all get cured, because this is so unfair.

Oh, I forgot to mention that my most recent physical therapy involved biofeedback therapy. This involves getting electrodes placed on certain muscles (I had one on my abdomen, one on my butt, and one on either side of my hoo-ha). It then measures muscle activity of the pelvic floor and abdomen, and mine are really messed up.

I was also able to use a tampon once after therapy (isn't going to happen now that I've relapsed), and I have not had intercourse at all since this all happened.

Hi Sara, welcome to the forum. Your pelvic floor sounds alot like mine and there's a host of things you can do at home to help improve the situation so stop worrying. Firstly I just want to say don't let flare ups/relapses or whatever you want to call them put you off, this is very much a 2 steps forward and 1 step back kind of situation but the more you do for yourself in between sessions the better you'll get.

The urinating needs sorting first as the stop start method that pelvic floor spasms cause keep the spasms going. The only person who can help you with this is you though. I used to have the exact same thing and squeezed a bit of urine out then stopped the flow then squeezed a bit more and so on until I realised what I needed to do. Basically the pelvic floor drop you've learnt in therapy needs to be part of your peeing routine. When you go drop the pelvic floor and the key to getting on top of it is to maintain that drop throughout the whole time you are urinating. It's a mental exercise more than anything because your body will want to tighten the pelvic floor up again and you have to retrain it not to. It took me a couple of months to stop using the wrong method but it's now second nature for me to pee normally so it can be done.

The bowel movements are no doubt causing you to worry about them and if you're like me you'll have what they call "outlet constipation" which means your body produces stools normally but once in the rectum they become difficult to pass due to tight muscles. It's going to take a while to relax the muscles enough to get rid of this so in the meantime you need to use something that will speed the bowels up and soften the stools so you get past the anticipation of pain which will make you tense those pelvic floor muscles more. I take magnesium, 2 x 250mg tablets a day and it's a godsend. There's also stool softeners if you want to take those but beware dehydration if you do. Magnesium can be taken up to 1000 mg a day if necessary and speeds things up dramatically as well as softening the stools, it's easy to go too far the other way if you're not careful so build up gradually if you try it.

As you can't do internal work right now you can use some external techniques to help things along. I find placing a tennis ball under the perineum for about 10 minutes a day very helpful as it releases alot of the pelvic floor muscles that cross that point. You have to sit up with good posture though and not slouch and I won't lie to you it can be pretty painful but over a few minutes, as long as you resist the urge to tense muscles up, the pain decreases. I use mine on the edge of the bed as the mattress is a bit more forgiving than the floor so it hurts less.

You can gently massage the soft tissue on the external vulva too if that area bothers you, it helps release any stuck fascia and gets more blood into the area. To decrease the burning when peeing you can use vaseline to protect the skin from any urine and make sure you drink plenty of water to keep the urine diluted.

If your therapist hasn't checked for imbalances in all the muscles around the pelvis ask her to do this, there's a reason pelvic floors go loopy like ours and weakness around the pelvis is a prime suspect. Also get her to check pelvic alignment and spinal mobility as you have back pain. I have Hypermobility Syndrome and Fibromyalgia so my joints are too loose and painful and my muscles all full of sore lumps so my external muscles around the pelvis have lots of imbalances which leads to the pelvic floor trying to pick up the slack. I had a resting tone of 20 when I started with a variability of 9 and it's now at 12 with a variability of 2 so it's gradually coming down, it's taken several months and several setbacks to achieve this though.

Once you get back to the point where your therapist can insert a finger you can use the smallest dilator in a set to massage the muscles so you maintain the work she's done and gradually add to it and improve. The smallest dilator in a set is the same width as a slim finger and a bit longer so you can reach tight muscles and trigger points high up in the vagina.

There's loads you can do at home and the stuff you do by yourself in between sessions is what will get that pelvic floor to relax. If you want to read more about it Heal Pelvic Pain by Amy Stein is a good cheap book. And don't worry about sex for now, there are other ways to be intimate with your husband while you get on top of this, be happy he's so supportive. Don't give up, all the work in between sessions will soon start to pay off. I've found all the above to be helpful and my pain has reduced from when I started, my problem is SI joint flare ups which cause setbacks but you just have to dust yourself down and get on with it. Hope some of this helps you.

Thanks so much for all of the helpful tips, Sarah. It's nice to know I'm not alone in this struggle.

Some days when I pee, I have no pain whatsoever. Other days, it's terrible, but dropping my floor does help, but like you said it's a matter of thinking about actually dropping my floor when I go. And hmm, a tennis ball? Haven't hear that one before! Right know my therapist wants me to do contraction exercises 4 times a day where I do a full contraction and then force dropping my floor all the way down, and keep doing the thigh stretches. I also just ordered a set of dilators that she wants me to add in to my home therapy as well, but they are on their way. I hope they help. And yes, she has checked for muscular imbalances and found that my abs seem to be disconnected from my pelvic floor. When I have painful spasms and contractions, sometimes it is in my pelvic floor alone, my lower abs, or a combination of both.

I was wondering if muscle relaxers were a common treatment. I know that they can be addictive and actually weaken the muscles in the long run, but I wonder if there's a certain type that can at least help a little bit without making me want to drool or sleep. I was in a car wreck 2 summers ago and the muscle relaxers helped immensely, I just spent most of my time sleeping it off and stumbling around.

Thanks again for your comments!

Hi Sara, I don't have a lot to add with regard to treatment. I have generalised unprovoked vulvodynia which is a bit different. I wasn't great on the drugs either, in saying that, there are others to choose from and other people have found they have reduced their pain significantly. Did your specialist explain that they are to interrupt the pain messages to your brain? I tried Amitriptylene and Gabapenten, other people have had success with these. I wouldn't want to discourage you from seeking answers.

My advice is to do with your mental wellbeing. Have you got someone to talk too? If you don't, I'd strongly advise getting a therapist and maybe even some couples counselling. I see a sex therapist which I still find hard to say out loud. It does make sense however and this kind of therapist is more likely to have specific experience. I tell people she's my pain therapist though I do Mindfulness meditation which is great for pain relief and stress reduction. I've REDUCED my coffee (I'm only human!) and alcohol (I'm only human!) intake. I'm also trying to reduce sugar intake as it's generally bad for everything! I've tried to work on getting quality sleep as well, mindfulness helps with this.

Please think really hard about being kind to yourself. There is a page for venting also if you need to swear a bit, we've all done it!
Kia Kaha (be strong)
Vicki

hi, wow there are a lot of Sarah's w/ Vulvodynia on this site...LOL

Like Mouse, I have generalized vulvdynia. The pain is on the outside rather than in the vagina. my recommendation to you would be to sit on foam donuts. i ordered two online from a medical supply company. i have a hard time sitting as well. i keep one at work and one at home. it honesty helps a lot! I experience the same pain from sitting that you do. I would agree w/ Mouse about seeing a therapist who specializes in pain or sex stuff. i have a therapist i see from time to time.

as i have posted many times, i have had great success w/ medication. there is gabepentin, lyrica, cymbalta and amitriptyline. all work diff. for people. i did go through a number of physical therapy sessions...i did not have tension in my pelvic walls. but, i did when i first got the disorder and had no medication to relieve the pain. my doctor prescribed muscle relaxants for me to help during sex. i am not addicted to them at all. actually i only take them if i get a bad headache. i never did take them to have sex.

so don't give up the fight. keep on working on you pelvic floor. i went to a pain clinic and that's where i got the most help. there is pain medication if you have constant pain. i take vicodin from time to time. i am doing exceptionally well compared to where i was when this all started. there is hope. keep at it.