Chronic Pelvic Pain Syndrome - Pelvic Pain Suppo...

Pelvic Pain Support Network

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Chronic Pelvic Pain Syndrome

VFL-TN311 profile image
11 Replies

I’ve been dealing with a lot of issues for years now and it seemed like no one could figure me out no matter how many doctors I went to. I do have back issues but recently I’ve been diagnosed with Chronic Pelvic Pain Syndrome and Chronic Prostatitis non bacterial. I’ve been in so much pain recently it feels like I’m dying it hurts so bad. I’m starting pelvic floor therapy next week so hopefully I can get some relief. It usually would just come and go like flare ups but now it’s here to stay so far for 6 weeks straight. I hope to find other people here with some of the same issues as me so we can compare each other’s symptoms. I’m miserable now and it seems like there is no end in sight. I have 2 young boys that keep me busy and it’s so hard to play with them now how I should be able to. Hopefully I can get some relief with therapy and through some of y’all’s stories and posts.

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VFL-TN311 profile image
VFL-TN311
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11 Replies
CMFCharlotte profile image
CMFCharlotte

I am so sorry for your pain and yes you will find help and encouragement here from those who also walk in your shoes. You may wish also to check out some similar Facebook groups which have more members. I am a woman but also have chronic pelvic pain and pudendal neuralgia for 3 years now. Pelvic PT has been a help especially once I found the one who worked for me. Gabapentin helps me quite a lot as well as massaging sports creams between my sits bone as I find my pain radiates from there to the perineum. I live in Charlotte NC, USA. I have found no good pelvic floor physicians near here but do have a pain management doctor willing to work with me to lessen my symptoms.

Lovetocycle76 profile image
Lovetocycle76

Hi mate. I'm sorry to hear of your plight. This affliction can really try to suck out your soul. I wouldn't wish it on my worst enemy but you're in the right place so let's see what is happening with you? What symptoms do you have my I ask? God bless, and don't give up hope.

VFL-TN311 profile image
VFL-TN311 in reply toLovetocycle76

Thanks I really appreciate it. I’ve got a bad lower back anyways and the doctors always thought it was from that until I went through 4 urologist and now a specialist in this field. I have a burning pain to my prostate, through my urethra, and even my anus sometimes. I also have pain to my hips, groin, lower back, kidneys, and a sharp pain to my left testicle and my testicles are super sensitive. I’m starting to get pain at the top of my stomach where it meets my bottom breast plate and shoots this feeling up to my throat too. I’m on heartburn medication but it’s not completely helping all the way. Here lately I’ve been super nauseous too. I started PT today and I’m on some new medications but I’ve been taking some much different ones all year that it’s starting to affect my bowel movements. I’ve noticed lately that I can’t completely empty my bowels fully and have to go back and try to later on. Something is making it cut it off before I get fully finished and little bits come out at a time. Maybe it’s from all the medications and my eating habits haven’t been the same since I’ve been so nauseous lately. I’ve been eating smaller portions and living on scrambled eggs and toast this past week. Usually my pain would come and go like flare ups but this time it’s with me and not leaving or dying down at all it’s like it keeps getting worse. Thanks for asking. Are you having any symptoms like this.

VFL-TN311 profile image
VFL-TN311 in reply toVFL-TN311

Also frequent urination especially at night and painful sometimes too.

Lovetocycle76 profile image
Lovetocycle76 in reply toVFL-TN311

I have rectal pain which somehow resonates to the genital area and is sometimes felt like a crushing, throbbing pain which extends to the right lower quadrant. I've been having a lot of constipation issues and it's worse after a bowel movement and is a continuous feeling though it does move around and wax and wane from time to time, the last couple of months have been terrible. I do sometimes get periods where I have to frequently urinate too just to get some mild relief. I do get the lower back pain too but only round my right lower back but sometimes is felt higher up like it's a spasm of some sort. It's all very strange. Hang in there. I hope you find some relief soon. Did anything in particular trigger your latest flare which isn't improving? Mine used to improve after a bit but is just staying really bad or in fact is worsening. I struggle to sleep because of it. Life is a real battle huh? Don't give up though. Keep fighting and pushing for answers and solutions. Good luck my friend.

RobertVerde profile image
RobertVerde

read "A Headache in the Pelvis" It will help you get an idea on your condition and give you hints on how to feel better. When I was first actually diagnosed I was given Lyrica - this help tremendously until I could get the condition under control. Good luck!

VFL-TN311 profile image
VFL-TN311 in reply toRobertVerde

Thank you so much. I really appreciate it. I just downloaded the audio book from Amazon and will listen to it this weekend. I’ll ask my doctor about Lyrica.

Afrohair profile image
Afrohair

Hiya I don't have what you have but I have pelvic dysfunction and endometriosis and it causes chronic pain so I know what it's like I also have young children and been suffering over a year now here for support xx

VFL-TN311 profile image
VFL-TN311 in reply toAfrohair

Thanks so much I really appreciate it. I hope you get some relief. It’s like your spouse doesn’t really even know the pain level you can be in. She knows my back has been really bad but this is a whole another level. Good luck to you. It’s depressing that I can’t be fully active with my young kids but I try the best I can. I was an athlete most of my life and never thought I would be like this at 41 years old.

Lovetocycle76 profile image
Lovetocycle76 in reply toVFL-TN311

That's the hardest thing to overcome. Remaining upbeat and positive for your kids. You feel like you are being robbed of the quality time that you deserve. So sorry to hear this. I totally empathise. It has me in tears at times but we have to stay strong. God bless you both.

Aprilbaby24 profile image
Aprilbaby24

I couldn’t imagine playing with children whilst having chronic pelvic pain!!! I can barely walk my dog!!! I feel for you.

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