New here! Vulvodynia, Interstitial Cystitis, Depression, Sexual Assault

Hello all, I'm new here and this is my first post. As much as I hate to think of other people having to go through the horrible pain of Vulvodynia, it is of some consolation to read your stories and know we're not alone. It can be so isolating sometimes. There is a lot of hope on this forum and I see that many people have found significant relief. That makes me feel hopeful although I've been hopeless for a long time. I'd love to connect with some of you and be able to share our stories! I appreciate any and all support as it's been extremely difficult for all of us!

TRIGGER WARNING: sexual assault/rape

Forgive the length of this post! It seems there is always too much to say. Here goes: I first suspected something was wrong when I was 15 and tried to have sex for the first time. It is painful for a lot of girls the first time, so I wasn't surprised that it was and at first I thought I could grin and bear it. After a few tries and still being in searing, unbearable pain, I decided to talk to a doctor, who told me that physiologically there was nothing wrong, and it was probably due to me being so young and petite, and perhaps nervous. She essentially brushed me off. For several years I did not have sex, privately thinking that there was something extremely wrong that no one was seeing but me. I also had pain with urination, and after contracting a UTI several times from attempting to have sex (always with painkillers [they were not prescribed, I wasn't getting that kind of attention from doctors]). After 'clearing up' infections, which I was prone to, with antibiotics, I started to feel like I had a UTI all the time. I still feel that way and it's been years. My therapist also told me that my sexual pain was probably due to nervousness, to try lubricants and relaxation techniques, etc.
Fast forward to five years later. I was working at a summer camp out of state, and although I was used to the pain during sex and the bladder discomfort, I had a new problem with menstruating continuously for over a month. I had a similar problem once or twice before but had never sought help for it. The doctors there told me it might be a cyst. I came home for treatment because my insurance wouldn't cover the ultrasound or any subsequent treatment while out of state. I returned home and saw a doctor who told me my menstrual issues were probably nothing more than stress and hormone related. She did not check for a cyst, simply examined me externally and told me I "looked too good" to have pelvic inflammatory disease or an active infection (creepy, no?). After several months of continued pain and several appointments in which I basically had to beg for attention, I finally got an ultrasound that confirmed I had a hemorrhagic ovarian cyst (it was bleeding into itself). They did nothing to treat it and told me to come back in a month. I had several of these cysts come and go with no treatment at all. Eventually I was referred to a Urogynecologist for my issues with urination (feeling like I have a UTI constantly).
The Urogynecologist attempted a cystocopy to view the bladder internally. It was horrendously painful, as it involved insertion of a catheter (which as you all know is far worse for someone with Vulvodynia!). It was awful. They were unable to distend my bladder due to it spasming and I was unable to relax my muscles due to the pain. The water spilled all over the floor and it was extremely embarrassing. They told me that due to my reaction (very pained) they thought I probably had Interstitial Cystitis (also called IC, or Painful Bladder Syndrome, PBS) but that they would not be able to confirm that without a cystoscopy. I was given a non-acidic diet to follow, nortyptiline (a tricyclic antidepressant used to de-sensitize pain receptors), and it was suggested that I try hydrodistention therapy, which would involve filling the bladder with numbing medication. I was unable to do the hydrodistention because of my bladder spasming. Even when I was unconscious, there was the same problem.
So after months (approaching a solid year) of frequent appointments and very little progress, they finally agreed it was time to do an "exploratory surgery" or laparoscopy. It took upwards of two months for that to be scheduled. By the time I was having surgery it had been over a year since I had returned home for treatment of my possible cyst.
(TRIGGER WARNING--this is where it gets bad! skip ahead if you need to) Even though I am not able to have normal sexual relationships I still date occasionally, more for the social aspect than anything. I was on a dating website (OKcupid) and started talking to someone. We went on a date about a week before my surgery was scheduled. I was very drunk (I almost never drink because it is acidic, but when I do drink it affects me disproportionately, I'm very small so even a little does me in!) and he offered to drive me home which I accepted. I liked him and so I allowed him inside my house, which I've done before and not had a problem with, but I acknowledge is super dangerous and I will never do again. What it comes down to is that he raped me. As any of you can imagine it was extremely painful. He took off my clothes and threatened me with my own pepper spray (backfire! don't tell people you have it!) by holding it right up to my vulva. He also threatened me with my curling iron, which he turned on and held within centimeters of penetration. I'm EXTREMELY FORTUNATE that he only threatened me with these things and didn't use them internally, but he did rape me twice, choke me, and hit me which was just awful, horribly painful. I bled afterwards and was in horrible shock. I was extremely withdrawn and stayed in bed all the time (ironic because my bed was the site of the incident). I was unable to cry about it for weeks, just being so numb. I tried to push it to the back of my mind.
This was just a week before my surgery, so, when I went in I was still bruised from the incident. The nurse who checked me in helped me to conceal the bruises from the doctors because I told her I'd been waiting so long to have the surgery and I couldn't bear it if they postponed it. They were checking for endometriosis (luckily I don't have it), and to see what other problems there might be. They said that my tissue was normal, except for my bladder, which they referred to as "twisted and tangled" (I'd like to see a photo? Sounds weird!) They confirmed my Interstitial Cystitis diagnosis, citing that an average bladder can be distended to hold one liter of fluid, and mine spasmed after just 20 CCs. My doctor told me that she'd never seen a case so severe in anyone under forty (I'm twenty-one). The weeks following my surgery were tough, I was in more pain than before for at least a month, maybe six weeks. My doctors upped my nortriptyline dosage and offered vicodin, which I had also been prescribed previously for my pelvic pain when they could not identify the problem. Otherwise my treatment remained static. I began pelvic physical therapy and learned some stretches and relaxation techniques, which temporarily allow for some relief, but it always comes back with at least as much force. My physical therapist was forced to report my rape because she had asked about my history with sexual abuse and I had told her honestly. It's been over two months since she reported it and I still haven't heard from the police, suggesting there's an awful backlog of these cases (there is a separate sex crimes unit, and they appear to be very busy!).
I've been suffering for so long and it has worn me down so much that I can barely live a normal life. I put school on hold because of my chronic pain, although I'm supposed to be graduating this year. I didn't have a choice about working so I still work and it's basically the only time I leave home. It has taken a huge toll on me, emotionally and physically. I'm extremely depressed and lonely. It's so hard having this condition and not feeling like there's anyone else to speak to who knows just how hard it is. That's why I'm posting here. I hope that someone sees this and is able to identify with something, anything I've written. Seeing others' stories, especially those with some relief, is helping me to feel less isolated. If anyone has anything to say I'd appreciate it so much. I'd like very much to connect with some other people who know some of the struggle I've been having. It's so much better knowing that we're not alone.
Thanks so much for the read and I hope to hear from some of you!
<3

Hi Jules, i'm sorry to hear you have been having such a hard time. You are in the right place with this forum, i have found it to be a really big help.

I too have had a lot of traumatic things happen in and around my pelvis area. So i can relate to your story.

One of my friends recommended that i try EMDR to help the trauma discharge from my body, and i did find that made a big difference. There are a lot of self treatment videos on youtube, but my friend cautioned me that i should go see a trained professional initially as to not trigger a full blown PTSD reaction. I followed her advice and saw someone professionally and it was great. After that i did the self treatments at home with youtube, i did have a few mild PTSD flares from it, but nothing i couldn't handle.

I thought i would pass on that story in case you know of anyone who does EMDR and could give that a try. I'd also caution that to see someone well trained initially would be a good idea, especially with a trauma as severe as yours.

i hope that helps, and that you are feeling better soon.

Thanks so much for your reply and suggestion. Just knowing someone has seen this and replied is helpful for me. I really appreciate it! I'm so glad that EMDR has helped you dealing with your PTSD. I still have a long way to go. I haven't heard of it before, which is good, any new possible treatment I'm interested in! I'm looking up EMDR therapy and have seen a website for therapists in my area. Just curious if you'd suggest seeing someone who specializes in chronic pain, or rape/sexual abuse, as both options are applicable? I don't have much to lose at this point, I'll try anything!

Hi Jules, the therapist i saw didn't specialize in sexual assault or chronic pain, but it didn't seem to matter. She was really good at trauma stuff and that was the main thing.

I would say go with your gut when choosing a therapist. Find someone who you get a good feeling about and go with that.

This a great little video on how we hold trauma in our body and what it can look like to resolve it.



Please feel free to ask me any questions.

Take care