Pelvic Pain Support Network
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Pelvic pain, need help and encouragement!

Hi everybody, I am really happy i found this site. I feel like pelvic pain is so poorly understood by the people around me. I feel very alone, scared and depressed. I went from a very active, social, outgoing person to lying on the coach feeling really depressed and in a lot of pain. I am so scared that this is going to be my life. I am 30 years old. A year ago i quit my job, broke up with my boyfriend of 7 years and went travelling. On my travels the pain started. It started with UTI symptoms then didden't go away after antibiotics. Now i have pain in buttocks, legs, back, pubic bone, pain in anus and vaginal pain. Before al this i was living in Amsterdam, living a very social and active life. Now I don't have anything left and i am living with my parents. I have been doing PT work, stretches and relaxation, but sometimes i am so stressed that i just hide away in panic and watch netflix. Also I'm reading into the mind body connection and TMS. The pain diddent get better, it got worse actually. I don't even recognize myself anymore. I have been dealing with this for the last 6 months. I can't imagine dealing with this for years. Sometimes I think about ending it all. Wich is so sad to me, because i really loved life before all this happened. My friends and family try to be supportive, but they really don't understand what it's like to have so much pain in the most private and personal place of your body. You really don't realize how much life revolves around sitting, until you can't sit anymore! I feel so broken and worry a lot about the future. How am I ever going to be able to work, find a man and have children. I mean who whants to date a girl with pelvic pain who can't sit for long. I am sorry for being so negative, but i am at the end of my rope and really sad and angry. I guess i just need some encouragement from people going through this. I wonder how you guys deal with the negative thoughts and catastrophic thinking? Thank you so much! Sarah

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So sorry, I’m going on 2 years, multiple surgeries , injections, meds...hundreds of doctor visits, PT etc... nothing has helped. I’m still searching for that missing piece of the puzzle. Every day I struggle to go on but yet make it to the next day I completely empathize with you don’t give up keep searching do whatever it takes to feel better to make it through the day don’t worry about what people think you might want to get on an antidepressant I put it off for years because I felt like

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Hi Jev, thank you for you reply! I'm so sorry you have been going through this for the past 2 years. I really hope you find that missing piece. Have you read into the mind body connection/dr sarno etc? It's about the emotional aspect in chronic pain. I find it really interesting and helpfull. I am thinking about going on anti depressants, and i to have been putting it off because I feel weak for taking them. But at this point i feel like I really need them. How have the anti depressants been working for you? I can't imagine living like this for years. I really hope things do get better. I wish you all the best on your healing jouney! Sarah

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Yes,I have read Dr. John Sarno’s book, also the book Explain Pain, it gives great information on how the mind reacts to pain. I’m very open to alternative therapy but honestly I was in a happy place when this started. I think Sarno makes great points, but I truly think this is physically not mental. As you continue this journey you will see that when a doctor can not find a cause they will tell you it’s a emotional or mental issue. It’s a new age way of thinking. I do believe hold some credibility but not to the point where I’m completely debilitated and in pain 24/7. I serve 20 years in the military and was deployed to Iraq and Afghanistan and never experience anything like this but yet now I have a good job and a great family and all of a sudden this pain comes out of nowhere I don’t believe that’s a mental/emotional issue. Don’t get me wrong having a strong emotional and mental foundation will definitely help you but after years of meditation mindfulness relaxation techniques I am still as bad or worse than I was when this started sorry to sound so disappointing. I’m exactly like you I didn’t want to take antidepressants I felt like it was a last resort but after I saw the helll I was putting my friends and family through I decide to take them. I don’t really think they help with the pain but they did help me with the anxiety and depression caused by the pain. Several months ago before I opted for surgery I came off of them so I could tell if the surgery helped no luck. You also read the thousands of horror stories on the Internet about medications and it scares the daylights out of you but I guess for every bad report there’s probably hundreds of good reports that no one writes about.

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So sorry, I’m going on 2 years, multiple surgeries , injections, meds...hundreds of doctor visits, PT etc... nothing has helped. I’m still searching for that missing piece of the puzzle. Every day I struggle to go on but yet make it to the next day I completely empathize with you don’t give up keep searching do whatever it takes to feel better to make it through the day don’t worry about what people think you might want to get on an antidepressant I put it off for because I Felt a shamed but you have to do what you have to do what you have to do.

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I've had pelvic pain for 3 years too now ruining my life and it has had a big impact on my mental health but think it's that way around rather than me being down and creating stress and pain. Probably does make symptoms worse but get sick of reading about being positive blah blah blah and I healed myself blah blah blah I'm on anti depressants too now to manage as the constant pain drives me mad too. PElvic pain can't really be seen and it's antisocial too, no one wants to hear about bowel and bladder and vaginal pain...... but we do on here will so thank goodness for the Internet so we can come on here and have a moan with people who get it.

I've had a hysterectomy for no reason it turned out(long story) that has made my bowel and bladder pain worse now told its just IBS but am getting skinnier and skinnier and I'm self employed my work is failing and my 12 year relationship broke up and I'm menopausal......

keep going ladies you both doing brilliant even when you feel you not just think you're stronger than you think sounds a bit new age rubbish but it's not , we are strong to get this far. And we don't need to be positive 24/7 some days are rubbish 😡

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I’m a man...lol! You are so correct, unless you have experienced this hell, you have no idea what it does to your mental and physical health!!!!

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Oops sorry 🙈used to posting on the hysterectomy pages but I still stand by the we are stronger than we think... people not ladies 👍👍👍

Even when we can't sleep with annoying pain 🙄 And gotta be up at 6😂😂

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Jason :). No worries we are all one family.

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Hi Sarah. I’m so sorry you are going through this. I can completely identify with the kind of pain you describe. For me it’s been 10 years, but what I can say is that the intensity of the pain is nowhere near as bad as it used to be, so please don’t give up on yourself. I was diagnosed with urethral syndrome, then vestibulodynia, then vulvodynia and later there was some acceptance that it was pudendal neuralgia. I think that the medical profession is a little more enlightened than when my pain started, but there’s a way to go yet. It sounds like you are doing the right things in trying to help yourself, but it isn’t easy when you have a hidden condition that affects every aspect of your life in such a personal way. I think of it as similar to going through the stages of bereavement, as we feel we have lost the person we used to be. I’ve done so much research that I probably know more than a lot of doctors these days, at least about my own body. With regard to the mind/ body connection, I understand that pain affects the brain in the same way as anxiety, and of course pain causes us to feel anxious, so exacerbating the pain. Have you come across the anonymous saying, “pain is inevitable, but suffering is optional?” I know what my reaction was when I first came across this, but I’ve realised that a lot of people cope with conditions more limiting than mine. I’m currently doing an online Mindfulness Based Stress Reduction programme, through which I’ve learned so much. It is easier said than done, but I’ve learned that pain can be easier to manage if we can let go of worrying about what the future might or might not hold, even for a little while. I’ve been having Physiotherapy for nearly 3 years now. It took a long time to find a suitable Physiotherapist and then a good 6 months before I noticed any benefit. Similar with medication, which also took a while to get right. Anyway, what I’m trying to say is that, while I can’t say whether you will or won’t be cured, there is hope. You are young and you have a life to live, with or without pain. I wish you luck.

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Hi guys, i post here for the first time actualy.

Sarah, i am sorry to hear about that, actualy this website gives us some relax when we discuss our pain and share our stories, let me share with you my own.

I will be 30 years old guy next november.

My story start with some pain in the pelvic area 1.5 years a go traveling fron the buttocks to the penis and i didn't give it importance, but then the pain get worsen especialy when sitting and i noticed that my libido is decreasing, at that time i didn't make a relation between that pain and my libido, i thought that is just mental or due to age.bla bla...

Than i discovered that i lost 90 of sensation in the glans and that is the cause of my low libido, and boom the chock, panic and depression because i was going to get engaged to some young beatiful girl.

I was so depressed and i broke up the engagement because i don't want to heart anyone due to my own problems, actualy i get some libido back but glans stay numb.

Then i passed some hard time googling about that pain and visiting doctors but till now nothing is evident, i think that it is Pudendal Neuralgia or Pudendal Nerve Entrapement du to Chronic constipation or some other reasons.

Then i submit to the will of God as beleiver, and that's the strong point that make me strong without depression, ofcourse sometimes as everyone of you i tell myself look around you i steal young man and my life has stopped , everyone is happy and my friends get married one after one then i get down, but allways i make in front of me the submition to the God's will and asking him for healling with hope of healling as the verse said "Surely Allah's (God's) mercy is close to those who do good"---(Quran 7:56).

And when i see other people who have other worst conditions and i say thanks God that my conditions is less painful than him/her.

In general i think that belief is a great factor and key of overcoming health issues and depressions.

And i steal searching and visiting doctors to heal ofcourse.

By the way Jev1972, as a man do you experience any glans, penis numbness or sexuel problems?

I think that knowing that we are not alone around the world gives us some relax and i hope that this the same for you Sarah :).

And good luck for everyone.

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I am so sorry you have to share in this debilitating condition. I have searched for years to find some help to manage my pain. I believe the Mindfulness Connection is good. This pain is not in your head. This is real! I have not had time to read all of it, as I just stumbled on it. It teaches how to relax. Yes, the medical profession has a lot to learn about PN. I do take an antidepressant. There are a few of them that is touted to be good for pain. At 60 mg Cymbalta is suppose to help with pain. There are others. They all will take about 3 weeks to take effect. Take them and give them time to work.

Please do not give up on finding something. As you have probably deducted what works for one does not work for another. Keep your chin up and keep contacting us for support as we know how you are hurting.

So sorry I can't help you more.

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Hi I read you're post and felt really sad for you. My symptoms are a lot like yours. I have severe butt and upper thighs pain, groin and vaginal pain, a sensation like I have a big bowling ball in my vagina, the front of my right thigh is,numb and my feet tingle. All of my doctors have agreed that I have pudental nerve damage but none of them know what to do about it. On this site I have found a women's health service in Sydney that specializes in treating pudental nerve damage and they are supposedly the best in the world. I assume you live in the States, I hope you find a specialist somewhere .

I also catastrophes, worry and grieve for my old life. However I can say that after 11 months I am feeling more positive. Keep in contact and let me know how you're going.

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I have the same pain, and I felt very upset everyday. I am planning to go to China because the doctor there have more experience on pelvic pain with the help of Chinese traditional medicine. I will give some feedbacks if it works.

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Sarah,

I can certainly sympathize with what you are going through. I have been dealing with pelvic pain for over 2 years now, and like you it has gotten worse, instead of better. I have found some things that really helped, and I will list them here, in case you have not already tried them. Some of them you might have to check out with a physician or Pelvic Floor PT, but these are some things that have helped me:

1) Proper exercise - I have a routine of stretching/moderate exercise that I do every day.

2) Heating pad - I can't live without it!

3) TENS Unit - This gives a mild electrical signal that can take your brain off the pain.

4) Castor Oil packs - These can help with cramps.

5) Swimming - If you're a swimmer, I find moderate exercise in water really helps!

6) Deep Breathing and/or listening to music while stretching.

7) Extra sleep - This is a must for me!!

8) Companion animal - Do you have a pet? Our dog is one of my best friends when I am not feeling well.

I hope these suggestions are helpful! I will pray that you feel better soon!!

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Hi Sarah,

I’m so sorry your going through this pain. I empathize with you. In fact, for a second there, I thought you may have read my mind. I get that feeling of being active and then all of a sudden your scared, alone and in pain. And yes, not being able to sit regularly sucks. But you will get through this. For me, going to therapy helps. Physical therapy, medication and diet changes gave me hope again. I’m terrified to date and I too wonder whether I will be loved and appreciated by another but I gotta stop that train from crashing in my head. My sis reminds me that the pain at its most severe is temporary and will ease. This helps me be grateful for what I have. Most people don’t get it in my life either. But through this forum ive stayed in touch with people that do. Don’t give up Sarah, you are a strong woman and deserve to be happy. Once you accept the pain, healing becomes easier.

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