Hi fellow suffers. I was diagnoised with IC 3 years ago and have chronic pelvic pain. I also have vulvodynia and IBS. I have tried numerous medications and bladder instillations which have not worked. I have recently started Elmiron but too early to say if it's helping yet.
I follow a strict IC diet and am also gluten and dairy free. I also have regular physiotherapy and do gentle exercise (yoga, swimming). I started taking Desert Harvest Aloe Vera about a year ago and it has helped me get rid of the stinging feeling when emptying my bladder.
I have been at rock bottom and felt as though life is not worth living but pleased to say I have picked myself up and am trying to get on with things the best I can.
Even though family and friends sympathise, only a fellow suffer with this condition really knows what it's like.
Looking forward to reading some posts to see what other people do to help.
Wishing everyone success on their journey. Stay strong , you are not alone.
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Salmonfishing
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Hi Salmonfishing and welcome to the Pelvic Pain Support Network! I'm sorry to hear you're in pain. I also have vulvodynia and IBS, so you're not alone!
Do you know what triggered your IC, vulvodynia, and IBS?
Hi Tree_TopsWhen I was in my mid twenties I was unwell with flu like symptoms and aches and pains. My muscles were so tensed up and no doctors could put a name to it. Tried medications and had physio but nothing seemed to help. Ever since then I have lived with very tense muscles in my shoulders and neck and get awful headaches. I now think this is fibromyalgia and all my other conditions have stemmed from that.
Even though I am in pain every day I am in a much better place than when this all started as I have educated myself through reading and looking on forums to see what works for other people.
Even though I am not medically trained I would say I have a better understanding of these conditions than most people in the medical profession.
It's sad to say that it takes far too long to get a diagnosis and the proper treatment and help.
If anyone wants to chat to me about anything please don't hesitate to get in touch.
I have felt like you, rock bottom. I had prolonged uri that led to hypertonic pelvic floor dysfuntion. I went to pelvic pt, acupuncture, medical marijuana. PTsaid hypertonic is resolved. I still have pain after urination. Pelvic pain specialist diagnosed iliohypogastric and iliolinguinal nerve entrapment. Feel for you.
Hi I was diagnosed with vulvodynia a few years ago and they also said they thought it was pudendal nerve entrapment. I also suffer from chronic constipation. I have always thought all of this was connected. Anyway long story short I was put on Amitriptyline for a few years, I did not think this helped that much, I had phsyio with a pelvic pain specialist, also no real let-up. My biggest problem is that I cannot sit for too long, I get excrutiating burning pain. I have to be careful which garments I wear, nothing too restrictive or tight, can leave me in agony. I have just had to learn to live with this. I managed to get a standing desk for at work (which helped greatly) otherwise I would have had to give up work I think. Like you I have had to change my mind-set a bit and know that I will still have good days and bad days and some days it gets me down more than others. I have no idea what triggered any of this, which I think is the hardest thing to understand. I do feel this group helps a lot sometimes when you read something that registers with you/you can totally empathise with. Keep staying strong
Hi AiliesonkerrYour symptoms sound a lot like mine.
What have we done to suffer from this terrible condition. 😕 Sitting down is not too bad for me but my vulva skin feels as though it has little cuts in it, even though it doesn't.
Like me you've probably seen lots of medical people who don't have a clue.
I think we are the experts as we have to deal with it and find a way of coping so we can get on with our lives.
I'm sure it's something to do with my pudenal nerve, as I have chronic lower back pain, hip pain and feel as though someone has kicked me in the pubic bone. ☹️
Here are a few things that help me with the pain and soreness. Soaking in a warm bath with either baking powder or oats (put oats in a sock and so it keeps bath clean). I also wash (vulva) with cetraben ointment. I have bought something called releveum which is a cream containing aloe vera and lidocaine. It's quite expensive but does work for me by numbing the skin.
Unfortunately, I do feel as though I will never feel normal like I used to but will keep on searching for an answer.
I'm sorry you're going through this. If this is any consolation, I'm experiencing the exact same thing.I've been on nortriptyline for over a year and now I see a pain specialist who has recently increased my dose from 60mg to eventually 100mg (I'm currently on 80mg).
Sadly, many medical professionals are not educated on vulvodynia.
Hi Tree_Tops I'm sorry you're going through the same thing as me but it's good to know I'm not alone. It's really difficult to explain to people what this condition is like.
You're totally right about medical professional, most of them haven't got a clue! I was sick of them saying don't use any scented soap or shower gel to wash down below. 🤨
We are the experts as we live day in day out with the pain. I think anyone, especially newly diagnoised should definitely join this site as we have tried lots of different medications and creams and can give good practical advice and lend a listening ear.
Even though I hate the conditions I have got it has made me a stronger person and I am more able to speak up for myself.
It's totally disheartening when you've got to go back and forwards to the GP in the hope they can help you and the usually can't.
I commend you for your resilience in the face of chronic pelvic pain!From my research, there are many subtypes of vulvodynia with different causes, including an excess of nerve fibers, hormonal imbalances, inflammation, and muscular dysfunction. However, more research is needed.
Have you had a cystoscopy for your IC and a colonoscopy for your IBS?
No, I've had no surgery using mesh or metal clips. I think I've got a few complex issues going on and as you can imagine, it's difficult to get to the bottom of them.
I am being referred to a pain clinic, but there is a waiting list so maybe I can get some answers off them when I eventually get to see someone.
After suffering with horrific pain in my vagina after urinating, I had surgery for a prolapsed bladder, but the pain returned. Then, I was misdiagnosed - first with Vulvodynia, then IC. When I finally saw a urogynacologist, she said for some reason, my bladder was having spasms and urinating set it off (or, the other way around - she wasn't sure). I've been on everything you can think of - Amitriptyline, Elmiron, Gabapentin, CBD gummies, Lyrica, etc. Finally, one year ago, she prescribed Intrarosa - a daily vaginal ovule containing 6.5 mg of Prasterone. This has literally been a miracle. The pain has virtually disappeared! Please give it a try - you've got nothing to lose!
I am glad you have eventually found something that works for you.👍I started elmiron 2 weeks ago and I'm speechless to say I think it's starting to take effect.
My bladder has felt like it's in a vice for 3 years but over the past couple of days it doesn't feel so tight and achy.
I honestly was skeptical whether it would work and was worried about the side effects( loosing my hair, having, problems with my vision) but I've had none of that so far.
Still got my vulvodynia and pelvic pain but my bladder does feel lighter. I just hope it continues to stay like that.🤞
Hopefully we can start to enjoy our lives a bit more. 🙂
Hopefully our news will bring a little bit of hope to other suffers.
I know speechless to say doesn't make sense, but I think everyone realises what I mean.I just hope I don't wake up in the shower like Bobby Ewing did to find out it's all been a dream.
Unfortunately, my reprieve from my bladder pain was short lived and is back with a vengeance. 😪Got an awful pain in my groin too, so not really sure what's going on?
I really thought the Elmiron was kicking in and starting to work. Now I'm thinking have a really got IC or something else?
There's no point going back to my GP as I am under a urology consultant so they won't do anything.
My only hope is the pain clinic I'm getting referred to but there is a waiting list of several months so, that's not anytime soon.
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